Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 2

Question: What are the most significant challenges caused by co-occurring mental health conditions in autistic people? (Examples of mental health co-occurring conditions: depression, anxiety, attention-deficit hyperactivity disorder, aggressive or self-injurious behavior, suicidality)

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	These conditions for me have only ever occured because of people systematically bullying, abusing, and ostracizing me just for being myself. They're all literal trauma responses, trauma of being abused. Being autistic is not inherently harmful and the autism phenotype has been found in prehistoric human remains. Something tells me it's a trait that can be useful. Some people are hunters and some are farmers, right? They're both important. Why are people so horribly abusive and awful and violent towards autistic people? I think that's the more important question to explore. Also, ADHD is a developmental disability, not a mental health condition. I don't understand why you lumped it into this question and then also included it in question 3. That seems really contradictory.
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Name	Aaron
Demographic	Autistic individual
Response	My mood swings drastically some days due to feelings of anxiety or depression. It’s harder to work through the feelings I get and figuring out why I have them. When I get them they also hit hard. At work it causes me to have trouble focusing on my tasks, and at home I can become despondent with my partner. Even with medicine the ADHD and anxiety aspects I have to put in extra effort to overcome. It’s exhausting, but in order to function in society I have to put in a lot of effort masking my symptoms.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	The co-occurrence of autism and ADHD seems to be a significant challenge, and the term "AuDHD" is frequently used by autistic advocates surrounding this phenomenon. The research doesn't tends to treat these as distinct separate disorders. I believe research and clinical practice could benefit from understanding ADHD and autism more fluidly, as intertwined aspects of neurodiversity. The numbers on suicidality among autistic people is alarming. Efforts to educate crisis line operators on autism would be helpful. Some sort of crisis line by and for neurodiverse people would be even more helpful. It seems many autistic people, who are already familiar with mental health systems, fear they will be involuntarily admitted to a facility if they reach out about their suicidality. Because of this, they don't seek out help when struggling with suicidal ideation. There should be more ways for autistic people to receive safe and anonymous help. Having the option to communicate through writing when seeking help might make more autistic people feel safe seeking help as well.
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response	The hardest thing I've had to deal with would be self harming behaviors and suicidal thoughts. I still feel like those were largely my own fault. If I hadn't been so focused on being normal, I might have never done that. Other than that, ADHD has been troublesome because I can't perceive the passage of time. This makes academics difficult even when the subject matter is easy.
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Name	Abi Lea
Demographic	Autistic individual
Response	OCD causes me a significant amount of added stress as an autistic person, and can make it more difficult for me to participate in every activities. For example, I often get repetitive intrusive thoughts about jumping in front of the train and so this makes traveling by train much more difficult and the stress has a big impact on my mental health. ADHD compounds my difficulties with executive dysfunction making completing daily self care tasks, organizing my life and doing executive tasks like paperwork much more challenging. ADHD also makes it a lot more difficult for me to regulate my emotions and emotional responses. This makes me more likely to have meltdowns in public that can effect my employability and relationships with peers. I have gone through periods of depression and suicidality, as well as experiencing constant high anxiety, due to being overwhelmed by many aspects of life and feeling that not being alive would be the most peaceful option. It is depressing and demoralizing to feel like you are always battling upstream, in every aspect of your life. Everything (looking after myself, working, traveling, housework, socializing etc) is more difficult, overwhelming and exhausting for me than for my peers and this has a negative impact on my mental health.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My son has zero social life. Aggression, anxiety are the two most common issues. There is no awareness about sexual development and needs for the NDD population. Accessing mental health care is difficult for this population. There are hardly any mental health providers trained to work with profound autism and intellectual disability.
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Name	Adam
Demographic	Autistic individual
Response	Anxiety: keeps me from driving, work it makes it hard I have always been harassed for being different then others so large crowds are a no go for me, Suicidal; no I do not want to kill my self but I do feel like life would be easier if I was not here, it is deferent then wanting to kill oneself, I try is a desire to have never existed
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Name	Adam Wehn
Demographic	Autistic individual
Response	Depression, my depression is not caused by any clinical(chemical imbalance) source I have come to realize. The primary source of my depression has been infantilization, refusal to accept or understand my needs, and dismissing or downplaying my stated needs or struggles with meeting the expectations that societal pressure places upon me. Such as the societal expectation that I live in my own apartment and manage my own finances(one of my biggest struggles) with no other housemates(or community mates) leaving me feeling isolated and unwanted.
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Name	Adriene Fern
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	The anxiety in the world at large creates repetitive behaviors, may require prescription medication and service animal to be able to effectively manage and maintain mood
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Name	Adrienne Benjamin , Parent/Gaurdian
Demographic	Family member of an autistic individual
Response	For parent caregivers: Sleep Disorder meant chronically poor sleep for parents, and my child. IBS: Significant hygiene challenges dealing with chronic diarrhea, as well as discomfort in my child. Difficulty planning activities out of the house. SIB's and Aggression: Episodes of SIB and aggression cause both pain and chaos, broken furniture, wounds to my daughter. Home doesn't feel safe. My other child also had to be hyper vigilant about my daughter's SIB;s and violent outbursts.
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Name	Advocates of Autism of Massachusetts
Demographic	Representative of advocacy organization
Response	Higher rates of co-occurring mental health conditions among people with autism (including various types of anxiety, obsessive compulsive disorder, depression, aggressive or self-injurious behavior, and suicidality) are well documented and create significant challenges including impairment of sleep and appetite, irritability, repetitive movements, insistence on sameness, isolation, severe meltdowns, and self-harming behavior. These challenges in turn contribute to and cause spiraling of further mental health pathologies and behavioral issues, as well as physical health challenges, and may severely degrade well being and become life-threatening. Pica and elopement, experienced by some in the autism population, are extremely serious and dangerous, as are aggressive and self-injurious behaviors which result from both autism and co-occurring mental health conditions. These conditions frequently lead to bruising, lacerations, scarring, broken bones, ripping out of hair, skin infections, detached retinas, and concussion. In many cases involving aggressions, the person’s caregivers sustain these Injuries. Obviously such injuries can be lethal and short of that frequently require emergency medical treatments, surgeries, and hospitalization.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response	I have anxiety, depression, PTSD, anger issues, and ADHD. All of these made it extremely difficult to thrive to school, and continue to make it difficult to work and have social relationships. I have to fight my own brain every day for the bare minimum of not simple curling up and dying.
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	My son has experienced severe anxiety which compromised his ability to learn. He resisted all efforts at learning life skills. He had, self-injurious behaviors - in adolescence, he hit his leg so many times the hair fell off, and he walked on his knees until one knee became horribly inflamed. At times he has been aggressive (hitting others, punching me and my husband, poking me in the breasts). From my reading, I know that anxiety, depression, self-injury, and aggression affect a sizeable percentage of individuals with autism.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Anxiety and ADHD. I used to really struggle with depression and suicidal ideation, but that nearly non existent since my diagnosis. This helped me escape a lot of unhealthy situations too.
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	Anxiety. For me my autism manifests as anxiety. I make impulsive decisions when my head is overloaded by sensitivity because I just want the noise to stop. It is too difficult to think on top of dealing with all that is going on. Most times I do it but there is no time without a challenge. During driving my autism manifests as anxiety. The headlights on the road, the noises from the car, focusing on small details. Anxiety is also caused from introducing new tasks or changing routine.
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Name	Alan Owen
Demographic	Autistic individual
Response	Suicidality, depression, and anxiety can be explained somewhat by interactions with other people. When somebody is constantly told that they are acting weird, or strange, and are ostracized, then depression and suicidality are an expected result, and anxiety can come from interacting with those same people.
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Anxiety, self injury behaviors, ADHD/ADD, low self esteem
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Name	Alex
Demographic	Autistic individual
Response	Anxiety, depression, adhd, self harm as a form of sensory overload management, low patience, low tolerance of sound
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Name	Alex
Demographic	Autistic individual
Response	The issue here is the same as untreated physical illness, increased unemployment, increased discrimination in both the medical field and the job field. Untreated, mistreated or under-treated care also leads to a shorter lifespan with the average lifespan in autistic adults being drastically lower which can itself increase depression and feeling unwanted by society as it reflects society as a whole viewing us as expendable and disposable simply for communicating differently.
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Name	Alex
Demographic	Autistic individual
Response	The whole of society is built in a way that shames and alienates autistic people. Much of the mental health issues stem from that simple truth. People intrinsically know that something is wrong with me and with that gut feeling ostracize and criticize me behind my back. There are no repercussions nor recourse for this. Even if I claim discrimination, how could someone prove anything? How can I access services via customer service when I have to sell my personality like a salesman to even be treated like a human being? Finding doctors specialized in autism is also a challenge. Even in mental health specialties, many doctors avoid learning about or diagnosing it. For people like me, these challenges manifest as agoraphobia and misanthropy.
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Name	Alex Curtis
Demographic	Autistic individual
Response	For me, the most is suicidality, self injurious behavior (self harm), depression, and anxiety. I've been to a mental hospital before and were/am going to therapy to help these things too. These challenges cause me to struggle with motivation, relationships, and self-esteem. It can be hard to escape these at times.
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Name	Alexandra Carlson
Demographic	Autistic individual
Response	In my case, because my autism was not recognized, my psychiatrist accused me of lying. I was convinced I was lazy and unable to handle pressure. A lot of situational depression occurred due to feelings of ill-fit, being forced to pretend to be 'normal', not given space when I needed it, etc. Which then was a feedback loop between depression and burnout. When indications of self-harm were discovered, I was harassed by professionals, which only made me want to hurt myself more because now I was overwhelmed. Meltdown could trigger self-harm but it was treated as depression-led suicidality rather than a case of being overwhelmed, so the "solution" was to keep bothering me instead of letting me cool down.
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response	Lack of autism education in therapists and other mental heath care providers, understanding the difference between your diagnoses and not having another condition misdiagnosed because of overlapping conditions
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	Anxiety disorder in my case Generalized anxiety disorder and bipolar 2 and a past history of NSSI and past suicidality prior to my clinical diagnosis/identification as autistic.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	ADHD, trauma, suicidal thoughts.
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Name	Alia Campagnone
Demographic	Autistic individual
Response	Stress,aggrivation, adhd, suicidality
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression, anxiety, OCD, ADHD, PTSD, night terrors, sleep paralysis, suicidal ideation, self harm
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
Response	The most significant challenge for our family has been the lack of psychological therapies (and practices) that have been adapted (or created for) autistic individuals (let alone Neurodiverse informed!) Our son had been diagnosed with ADHD, LDs, and Sensory Modulation Disorder by 3rd grade; however, his ASD was missed until he was 14. Over that time, his anxiety grew into depression, school avoidance, and suicidal ideation. As we sought treatment for him from well-respected psychological practices, he continued to (scream) that they didn't understand. After receiving the autism diagnosis, I began looking deeper into scientific studies on these therapies (CBT, DBT, etc.). I saw that while some have been found to be "helpful" for those on the autism spectrum, it is typically at much lower rates than neurotypicals. However, when those therapies have been explicitly adapted for neurodivergent individuals, the rates are much higher. Our son’s mix of diagnoses makes this kind of individualized support imperative. However, finding clinicians who use or even know about these adaptations is like finding the proverbial needle in the haystack. We've learned this the hard way after putting our son into programs that may have actually done him harm. While we have found a therapist who we think will be helpful, uncovering anything like an IOP or PHP is beyond hope. Without that, his return to school will be an excruciatingly long and arduous process at best.
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
Response	The depression that is constant and the anxiety that has been there for as long as I can remember. The attention issues that have just been dismissed by every doctor. It all always feels dismissed by all professionals.
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response	Depression, anxiety, social isolation, ADHD (forgetfulness and disorganization), OCD (having to have things just so), and PTSD from mistreatment or abuse by others.
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Name	Alycia Halladay, Autism Science Foundation/Alliance for the Genetic Etiologies of Neurodevelopmental Disorders and Autism
Demographic	Researcher; Representative of advocacy organization
Response	Meng-Chuan Lai wrote an excellent review last year of these co-occurring (or co-morbid, depending on the condition itself) mental health issues in ASD. This review highlights an often overlooked issue, which is catatonia. This condition is seen more often in those with rare genetic disorders and is often deadly. In addition, intellectual disability and being minimally verbal can straddle the border of physical and mental health conditions. The stigma associated with IDD and MV ability is delaying appropriate treatments and supports and leaves families feeling isolated. Being intellectually disabled and/or minimally verbal may lead to behaviors such as aggressive behavior and self-injury. While mentioned in this RFA, these two things are not in themselves mental health conditions, they may be behaviors that are the result of mental health or even physical health (for example GI) disorders. Other behaviors include elopement and parental abuse. Parental abuse is often stigmatized, exacerbating mental health issues across the family. There is a limited understanding of the most effective interventions to help non-speaking individuals communicate, and many are turning to non-evidence based and potentially harmful interventions. Part of the problem is that AAC devices, which are helpful if used appropriately are not accessible and training is poor.
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response	ADHD - makes it difficult to act appropriately in extended social interactions and meetings. Anxiety makes it so that inappropriate behavior in social interactions leads to even less of an ability to act appropriately in future social interactions. This ultimately causes rejection sensitivity dysphoria where it becomes difficult to have professional relationships in the long term with neurotypical people.
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
Response	I'm adhd with depression and anxiety as well as being autistic. My personal biggest challenge is that few mental health providers realize that my treatment plan has to look different from non autistic people with these same issues or it's not going to work.
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	One of the biggest challenges is PDA and how it presents. It is not recognized as well as other conditions and needs to be added to the DSM. It creates significant challenges around aggression, child to parent violence, school, and sibling relationships. It is also difficult finding professionals who know about it. FASD is another difficult one as many people will not diagnose both FASD and Autism, even though it can be quite common to have both. More assessors and professionals need to be aware of PDA.
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I am a mental health counselor, I am autistic and work with quite a few patients on the spectrum, the vast majority of them experienced trauma based on their social behavior and/or limitations vocationally/academically with peers through their lives. Many of them have had higher incidences of suicidal ideations and self harm due to burnout.
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Name	Amanda Halloran
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	My family member with autism also has bi-polar disorder and ADD. She has a history of trying medications that do not work or exacerbate some symptoms while treating others. It feels like a merry-go-round of puzzling symptoms with no answer as to what is going on. She is also extremely sensitive to making and keeping friends, especially love relationships.
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Name	Amanda Kulesza
Demographic	Autistic individual
Response	Depression, anxiety, ADHD
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Name	Amanda McCray, Autistic mom raising autistic kids
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Depression and anxiety from having to act like a neurotypical. Masking is exhausting. Not knowing why you don't understood what the right behavior is in the situation. The mental load to pull out that learned information in the rights Ettinger at the right time is exhausting. The strong sense of justice too. The world is on fire and we have to go to work?
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The overwhelming sense of justice. It causes an enormous mental and emotional toll on autistic people to see the injustice that continues to happen in our world. For thousands of years humans have been war stricken by that hands of other humans who made up something the other guy didn’t like; see borders, races, money, etc. We see the cycles of every past civilization, we know where changes should be made, yet they never are and because such it weighs significantly on us. This is where depression, anxiety, suicidality stem. Per my last response a lot of “challenges” are only challenges under our current leadership and society.
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I am not only autistic, but also ADHD, and I have clinical depression, anxiety disorder, panic disorder, and cPTSD. One of the symptoms I live with is suicidal ideation. My mental health suffers when I spend too much time masking, or in a place where I have a lot of sensory overwhelm, and I find I experience burnout more easily than my neuro-typical peers. I also live with chronic illness, which impacts my mental health, and unfortunately living with chronic pain is a constant source of sensory stimulation that can trigger burnout and shutdown.
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Name	Ambree
Demographic	Autistic individual; Family member of an autistic individual
Response	With ADHD you're stuck in this paralysis on a lack of motivation. I need to do something but it's too underestimulating and disturbs the routine. Nothing gets done. Then when you add mental illnesses like anxiety and depression it gets even worse because then you start hating yourself for it.
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Name	Amelia
Demographic	Autistic individual
Response	I have had depression, anxiety, ADHD, PTSD, and suicidal ideations since I was a child. I was a gifted student until highschool graduation and I floundered in college due to extreme depression, anxiety, and ADHD. I have tried to take my own life many times. It is difficult waking up everyday. To get mental health treatment, I have to have a job (not designed for me to succeed in) and then I have to wade through long waiting times, terrible insurance authorization issues, high costs of medication that I can't afford even with a job even if it means I could eventually earn more, and it is nearly impossible to get good treatment without trying multiple providers which each have long waiting lists.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	I have both autism and ADHD, but I didn’t receive these diagnoses until I was an adult. As a late-diagnosed, high-masking, AFAB autist, depression and anxiety were by far the most significant challenges I have faced. In middle school, I noticed that I was different from my peers. My need for a specific fabric texture to fall asleep and emotional outbursts went from being quirky to bizarre. I paid attention to other girls – how they spoke, what they talked about and liked to do. Every waking moment of every day, I monitored and manipulated my behavior. This required a lot of energy, but I believed that I was “normal,” so I berated myself for faking depression despite feeling a gnawing emptiness inside. When you play the part of an emotionless robot for 10-15 years, waking up to the realization that you were not a freak, but a perfectly normal autistic girl is earth-shattering. Yes, my autism is a disability, but it also saved my life. I no longer have passive suicidality. The take-away is that early accurate diagnosis is crucial, especially for high-masking, AFAB, and people of color. There need to be more clinicians trained with neurodiversity rather than pathology who understand that the autism spectrum is a color wheel of differences. More funding needs to go to studying girls, nonbinary folks, and people of color. The earlier autists are given language to describe themselves, the less likely they will be to experience the gut-wrenching emotional pain that I did.
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	Similar to the challenges caused by co-occurring physical health conditions, co-occurring mental health conditions can also cause diagnostic overshadowing for clinicians including inadequate or inaccurate prescribing of psychopharmacology, and delayed access to behavioral health services or other treatments. Due to siloed systems of services for mental health and developmental disabilities, autistic individuals with these co-occurring conditions frequently experience inequities in access to care, financial burden, and loss of employment for autistic people and/or their caregivers. Further, these conditions can cause isolation from community supports and community inclusion because of a lack of understanding about disabilities and mental health conditions. Co-occurring mental health conditions can also result in school avoidance and decreased learning. Anxiety, depression, and dysregulation interfere with optimizing learning and developmental outcomes over the course of childhood and adolescence by leading to school avoidance, missed instruction, and external behaviors that stimulate placement in separate classrooms and programs. Children need to feel safe, connected, and well-regulated to learn. The AAP recommends increasing focus on mental health and emotional regulation starting in early childhood and at the time of diagnosis in order to improve educational and developmental outcomes of children with autism.
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Name	American Association of Psychiatric Pharmcists, American Association of Psychiatric Pharmacists (AAPP)
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Similar challenges occur with co-occurring mental health conditions, including the number of medications prescribed and the potential for a medication prescribing cascade. Studies suggest individuals with a diagnosis of autism may be more likely to have certain side effects with psychotropic medications (PMID: 27592097). This highlights the importance of close monitoring and specialized care for autistic people with concurrent mental health conditions. Furthermore, autism may impact individuals in a variety of ways including sensory sensitivities. This may result in the need to pursue unique medication formulations like liquids or patches to align with an individual’s needs. An additional challenge is the high prevalence of supplements (e.g., vitamins) that are used in this population (PMID: 26366192), resulting in drug interactions or side effects. Supplements may not be mentioned in a medication history which results in an incomplete medication list for providers to review and assess.
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD co-occurring with Autism has the individual always battling with themselves. We need routine but also crave novelty. We need same foods but get bored of them quickly. Its a daily battle
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
Response	suicidality
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Name	Amy Cox
Demographic	Autistic individual
Response	Anxiety.
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	This varies but for me as a caregiver it is the level of support and follow up needed to help my person needs to complete simple activities of daily living
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Name	Ana Pereira, Mother of an amazing autistic boy
Demographic	Family member of an autistic individual
Response	he has self-injury behavior (bangs his head a lot). he is still too young to show any other mental health issues
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Name	Ananya Rishi
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- Accommodations needed to perform at work/school/social settings. - Communication difficulties to healthcare providers. - Consistency in routine and medication. - Managing autistic burn-out alongside co-occuring mental health conditions. - Preventing traumatisation.
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Name	Andie
Demographic	Autistic individual
Response	Anxiety poses significant challenges in my life as an autistic person. I experience immense social anxiety related to my autism and struggling to understand social expectations, as well as immense anxiety stemming from any change in routine or expectation. Such anxiety can be very disrupting to my day and sense of well-being and make it difficult to complete regular tasks. In addition, I have obsessive compulsive disorder that has had a significant impact on my life and well-being. I experience depressive episodes in addition to heightened anxiety when I am experiencing autistic burn-out, as well.
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Name	Andrea Barlass
Demographic	Service provider, health provider, or educator
Response	I have seen several co-occurring mental health diagnoses of ASD and ADHD, ASD and Depression and/or anxiety. I have occasionally seen co-occurring mental health diagnoses of ASD and Oppositional Defiant Disorder.
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	Anxiety, ODD, misophonia, aggression
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Name	Andrea Davis, Ph.D., DIR/Floortime Coalition of California
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Mental health needs of autistic people are underserved due to the great divide between developmental disabilities services and mental health systems. We recommend: 1. Social-emotional developmental models of intervention such as DIRFloortime should be core curriculum for all professionals working to provide services to autistic people in order to flexibly support people with developmental disabilities, including those with mental health challenges. 2. Professionals in the developmental disabilities field must be educated in cross-system collaboration, core mental health awareness, and mental health triage. 3. Training for mental health providers must include assessment and intervention for people with developmental disabilities, especially autism spectrum difficulties to properly serve the high percentage of clients presenting for care who are autistic. 4. Healthcare providers must be trained in identifying and treating co-occurring conditions including anxiety, depression, sleep and eating conditions, and sensory processing difficulties with non-pharmacological efforts first. While the two FDA-approved medications, risperidone and aripiprazole, may be very helpful, clinicians must be educated to use extreme care, given their significant risks of metabolic and neurological side effects. 5. Policy makers must work to integrate the divided systems for people to have smooth experiences of adequately comprehensive and accessible care for co-occurring conditions.
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Name	Andrea Hammond
Demographic	Autistic individual
Response	Personal Experience: My greatest mental health struggles are general anxiety and social anxiety. These make it difficult for me to find community, socialize and find a job, hold down a job, or excel in a job. Autistic burnout from things like meltdowns and masking should be considered as well since it is very similar to depression. Burn out makes it extremely hard for me to care for my basic needs such as hygiene, eating, keeping my environment clean and working. It causes me to have more meltdowns often times leading to scratching myself and feelings of hopelessness. For others, it is important to note that depression is extremely prevalent in the autistic community and one of the leading causes of deaths for autistic individuals is suicide. Our average life span is significantly less than others because of this.
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	He was self injurious a few years ago. Because I haven’t seen him with short sleeves I don’t know if he still is and he wouldn’t answer if I asked.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	Many autistic people deal with some kind of trauma disorder as a form of mental health issue. These trauma disorders can be manageable while others can be heavily debilitating due to the increased likelihood of autistic people be traumatized physically or sexually. This is how somebody who could be working through PTSD can end up with cPTSD after significant A.C.Es or Adverse Childhood Experiences when coupled with adult traumas. Age regression is also extremely common amongst autistic people along with a kind of unidentified split between what some of us describe as our neurological age which can be much much younger than our physical body and our physical age. This can cause a great deal of suffering for autistic people with that split growing if certain support needs surrounding housing, therapy, and community aren't obtained.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	My spouse experiences constant anxiety over manners large and small, even worrying if I'll suddenly dislike her after 3 years of a happy marriage. She also experiences depression frequently which exacerbates her anxiety and often leads to suicidal ideation, but with no plans. My spouse also exhibits symptoms of ADHD, tho she is not diagnosed, in having an extremely hard time focusing even on activities she enjoys, inability to sit still for any period of time, and having a hard time committing to tasks around the house.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response	I have a long history of self-harm, suicidality, and several mental illnesses, including but not limited to, major depression, generalized anxiety disorder, obsessive compulsive disorder, ADHD, gender dysphoria, and an eating disorder that I have struggled with off and on since I was 12 years old. As you can imagine, these all blend together with my Autism to make a hellish concoction of misery. All of these conditions have caused me so much suffering that I made the decision long ago that I will NOT be having children (at least not biologically). I don't think I could live with myself if I passed all of that [profanity redacted] onto another innocent little human knowing full well how terrible their life is going to be. On a brighter note, I am doing much better now for the most part. Don't get me wrong, I still struggle with everything I mentioned, but to a lesser extent. Additionally, this March 5th will mark 3 years since I last self-harmed. I'm still tempted to occasionally, but I also want to keep my streak going.
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	Co-occurring mental health conditions can lead to difficulty with work, school, community engagement, employment, post-secondary education and potentially run-ins with the justice system, greatly affecting quality of life. Limited evidence-based psychological interventions and stigma surrounding mental health exacerbate the difficulty of managing conditions like ADHD, anxiety, OCD and aggression. Moreover, treatment for these conditions often requires significant social interaction in settings that may be overwhelming for autistic individuals (e.g., hospitals), presenting additional barriers. Oftentimes, autistic adults in healthcare settings struggle to communicate their experiences, leaving them feeling misunderstood and unheard. Access to appropriate care and in-patient treatment facilities remains inadequate, particularly for autistic adults, increasing the burden on autistic individuals and their families. Non-specialist providers are not trained in autism, resulting in a lack of providers across specialties who are aware of the unique needs of the autistic community. Particularly in cases where an autistic person is experiencing severe aggression or self-injurious behavior, lack of adequate care can have a significant impact on their and their family members’ quality of life. Family members may experience threats to their physical safety, mental health issues and lowered community participation.
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	Anxiety is most problematic for my son. Processing news, media, health issues and even weather can be anxiety inducing.
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I am Autistic and have ADHD and Anxiety. It took me 12 years and 5 schools to complete my bachlors degree. I've been suicidal every time I've been through a burnout. When I meldtown, I beat my hands agains tables, desks, door jams, and peal my own skin off my arms. This happens when I have deffered my own needs to accomodate the neurotypical people arround me for too long at my own expense. Neurotypical people will not allow you to participate in society unless you can succesfully pretent you are not autistic arround them. You have to pretend light and sound doesn't hurt, that you don't need to rock. That you are "trustworthy" enough to make just the right ammont of eye contact (even though eye contact feel like physical touch to you.) You have to translate everything through your best neurotypical lense or they won't understand you, you have to clarify the meaning of their raised eyebrow, the mis-match between their words and body language, monitor your face to be sure what your own facial expression is communicating is congruent with your intention for them. All this is in addition the the ordinary stres of everyday professional life. It's exhausting and when the mask inevetably slips, you are shamed, shunned, and excluded. This kind of hypervigilance is deeply unhealthy, but fundimentally necessary to participate in society as an Autistic person. And it is deadly.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response	I have been informed I have ADHD, PTSD, Depression, Anxiety, and OCD Tendencies.
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Name	Angeline Low, Apt Fitness, Inc.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	I cannot sustain employment. I cannot retain relationships. I cannot assimilate. I wish I was dead, but I am not suicidal. Each morning is a struggle to get out of bed and face the world. It is too overwhelming. I miss a lot of work and get fired for it. Without a way to pay bills, I sink deeper into depression and anxiety.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression, obsessive compulsive disorder, mood disorder NOS
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety Depression Suicidality Chaotic substance use as a way to cope
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response	at the age of 13-14 our son's aggression toward others and self injury was off the charts. Even with intense interventions, behavior therapy and medications the challenges still exist. His behavior can be very unpredictable and stressful for himself and those around him. While he is learning to self-regulate (will be 20 in July) and we as his family are very in tune with his ques and triggers it has been in our experience one of the most challenging parts of his autism. There needs to be more awareness and help for families.
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance, also known as Persistent Drive for Autonomy
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Name	Ann, Parent
Demographic	Family member of an autistic individual
Response	Training group home staff to be understand these conditions.
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	ADHD seems to be utilized as a diagnosis with little regard for the primary diagnosis of Autism and the overlap with criteria in these areas. Depression is more frequent but difficult to actually diagnosis if the person is non-verbal or withdrawing as a symptom of depression vs. autism. Isolation due to limited social interactions and limited ability to develop friendships/relationships contributes significantly. Aggression and self-injury are pronounced among person I see in the school and clinical setting. Self-injury - biting hand, head banging. Poor communication skills, impulsivity, intolerance of discomfort and lack of coping skills are often the cause. Suicidality is not seen in my practices.
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Name	Anne Marie Price
Demographic	Autistic individual
Response	Anxiety disorders. Depression.
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Name	Anne Nagel
Demographic	Autistic individual
Response
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Name	Annettr
Demographic	Family member of an autistic individual
Response	Anxiety, attention deficit hyperactivity disorder. Meltdowns
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Name	Anonymous, public schools
Demographic	Service provider, health provider, or educator
Response	Anxiety Loneliness
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Name	Anthony
Demographic	Autistic individual
Response	Suicidality is a normal part of life in a way that isn’t threatening. Self-injurious behavior for me consists of nail biting and scratching to my previous injuries
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Name	Arianna C
Demographic	Autistic individual
Response	Disorders associated with trauma. In my opinion as an autistic person, being autistic in and of itself is traumatic and can explain the link between autism and trauma disorders.
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
Response	Anxiety, depression, a sense of lonliness
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Name	Arushie Nugapitiya
Demographic	Other
Response
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Name	Ash Keen
Demographic	Autistic individual
Response	It’s hard to find mental health providers who are trained and comfortable working with autistic adults
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Name	Ashleigh
Demographic	Autistic individual
Response	Same as last one but also there isn’t information out there for autistic people to know how these conditions present in us or if it’s just one of our autism traits being extra full on.
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Name	Ashley
Demographic	Family member of an autistic individual
Response	Self injuring Stims. Eating non good items
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Trying to push yourself past your limits in an attempt to meet unreasonable expectations from allistics and being unkind to yourself when you fail to meet those expectations.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	Autistic son already feels “different” and has trouble emotionally regulating, so anxiety is overwhelming. When looking at medication to address anxiety and depression you have to consider possible other medications being taken and hard to navigate effectiveness if individual has a hard time expressing feelings.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Lack of providers, lack of education/awareness among existing providers, lack of funding for supports. Many people are under-served and greatly in need of targeted and knowledgeable support.
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Name	Audrey
Demographic	Autistic individual
Response	It is most challenging to deal with the mental toll of trying to exist in a world catered to allistics people and extremely hostile to autistic people. It's extremely hard to keep a work life balance that does not immediately drain all of my mental and emotional resources but allows me to provide for myself and my household. The exhaustion is the worst part, which leads to depression and anxiety about keeping up with the demands of life
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges caused by co-occurring mental health conditions in autistic people are depression, disordered attachment styles, Obsessive-Compulsive disorder, personality disorders (especially borderline and schizotypal). It's very common for autistic people assigned female at birth to develop a borderline personality disorder in response to the trauma of being raised as a woman in a household with a narcissistic individual. The connection between autistic people and narcissistic abuse needs to be explored in more depth.
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	I’ve serve anxiety and depression since I was a young child, due to not knowing how to cope with over stimulation and social constructs that can be hard for me to understand or know what’s expected.
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Name	Autism New Jersey
Demographic	Representative of advocacy organization
Response
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Name	Autism Society of Idaho
Demographic	Family member of an autistic individual
Response	Anxiety and depression
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Significant challenges include eating and feeding disorders such as ARFID (more common in children) and anorexia nervosa (more common in adolescence and adulthood). Autistic individuals are more likely to be resistant to typical treatments for eating disorders and may require unique supports. Given that anorexia nervosa has an extremely high fatality rate, it is important that autistic individuals struggling with this disorder are given effective treatment. Other impacts of such eating disorders in autistic people include difficulty and avoidance of eating in social environments, gastrointestinal health issues, nutritional deficiencies, invasive medical procedures (e.g., feeding tube insertion), and being over- or under-weight. Additionally, attention-deficit hyperactivity disorder is a commonly co-occuring condition which can impact learning outcomes and ability to form and sustain social relationships.
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Name	Ava
Demographic	Autistic individual
Response	Anxiety - constantly overthinking and analyzing and planning ahead (because of fear of limited energy levels), which is incredibly stressful and draining
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Name	Azure
Demographic	Autistic individual
Response	I have PTSD because of the way I was treated due to symptoms of autism and ADHD in k12 school by my teachers. It makes it incredibly difficult to navigate the world because I am constantly on guard. The people who caused this trauma will have long careers because nothing they did was technically illegal. Better protection for autistic (or potentially autistic) students in schools would be incredible.
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Name	B
Demographic	Autistic individual
Response	I have ADHD, anxiety, social and generalised, impulsive and intrusive thoughts. Issues reading social cues and understanding normal behaviour that leads to isolationism among peers or only being sought out for a purpose. It can also risk my safety in public if I misunderstand someone else and their intentions which has lead to me responding improperly and getting assaulted. I also have issues understanding my own emotions which can look like apathy to others.
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Name	B. Blair Braden, Arizona State University
Demographic	Researcher
Response	Lack of autism-informed providers or tailored interventions/approaches.
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Name	Barbara Baker, parent
Demographic	Family member of an autistic individual
Response
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Because of the way that the DSM and psychological research is (by this, I mean it pathologists any behavior that does not conform with conservative cultures and capitalist values), many autistic folks have been misdiagnosed and therefore been given improper intervention/treatments. The main treatment offered to autistic children is ABA which is described by most autistic adults as torture. So, even if an autistic child is offered early intervention, their life-long mental health is affected by that treatment. This makes it difficult to parse out what conditions are co-occurring or which behaviors are just a result of being insufficiently supported.
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety in New places. My son has trouble using a single stall bathroom for the 1st time in a new place e.g., hotel, visiting home. He has to talk himself thru it or need someone to help him get past the threshold that he's going to be ok. Once past it, it's fine after that
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Name	Bella
Demographic	Autistic individual
Response	Definitely depression, anxiety, and ADHD. The ADHD more specifically because of the fact that ADHD symptoms tend to be the opposite of autistic symptoms. Which means you have to attempt to find a balance.
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Name	Bella Taylor
Demographic	Service provider, health provider, or educator
Response	ADHD BPD
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Name	Bellamy
Demographic	Autistic individual
Response	Before learning I was autistic I had a very confusing mental health journey. Between the ages of 12-18 I've had so many diagnoses thrown at me, anxiety, major depressive disorder, narcissistic personality disorder, bipolar personality disorder. I believe I would have had a much better childhood if I was able to be diagnosed correctly before going through all sorts of treatments and therapies and group homes I could have avoided so much trauma and emotional dysfunction. My working memory is in the 30th percentile due to CPTSD. This makes keeping track of conversations difficult. I tend to forget what I'm doing as I'm doing it. I have struggled for alot of my teen and adult years with self harm and suicidal ideation alot of which stems from feeling like my brain is broken and there are no good options for me.
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Name	Ben Yerys, Children's Hospital of Philadelphia
Demographic	Service provider, health provider, or educator; Researcher
Response	-Access to trained providers, particularly med management for adults -Increasing awareness of co-occurring mental health in autism+ID populations—the potential for diagnostic overshadowing is large in this segment of the autism population -An absence of gold-standard treatments/supports that help autistic people manage co-occurring mental health conditions and also focus on positive mental health (e.g., decreasing ADHD symptoms does not automatically equate to a greater life satisfaction) -Insufficient characterization of how co-occurring mental health conditions impacts daily functioning - A patient told me "Don't treat my autism, treat my social anxiety" because his anxiety was a rate limiting step for friendships, self-advocacy, going to college -Depression and suicidal behavior is growing exponentially in the autism population without intellectual disability. Autistic people, particularly autistic women and nonbinary people, should be identified as a 'high risk' group for depression and suicidal behavior
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Name	Berkeley Fisher
Demographic	Autistic individual
Response	depression, anxiety, ADHD/concentration issues
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Name	Bern.W
Demographic	Autistic individual
Response	Anxiety Demand avoidance ADHD Suicidal thoughts Chronic burnouts Frequent meltdowns Fluid adaptability that can look like regression during burnout Losing the ability to speak in high stress periods
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	All of the above issues affect employment and social interactions. Also, obsessive-compulsive disorder with disturbing thoughts makes it difficult to complete tasks.
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Name	Beth Greenspan
Demographic	Autistic individual
Response	The medications I take for my mental health issues cause extreme lethargy, and they are also damaging my organs due to long time use. Being caught in the psychiatric system for most of my life, when what I needed was care for my autism. Being overmedicated, and misdiagnosed for many decades. The psychiatric models of treatment do not work well for people on the autism spectrum, and in the long run, ended up doing more damage to my brain by constantly overloading it, and constantly focusing on goals that were unachieveable for me.
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Name	Beth Malow, Vanderbilt University Medical Center
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Bethany Coop
Demographic	Service provider, health provider, or educator; Other
Response	My child suffers from social anxiety, depression (uncontrollable crying), aggressive and self-injurious behaviors. He has scars all of his body from things he has done to himself. We never know if we will be able to enjoy family events or if he is going to melt down as a result. When walking down the street things like a car or motorcycle can send him in a panic. He grew up at a time that ABA was not available and as he is "non-verbal" mental health providers couldn't help him either. Schools don't have the capacity for these kids.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	All of the referenced challenges exist with HIE as an etiology for autism.
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Name	Betty Lehman, Lehman Disability Planning
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Workplace anxiety is not sufficiently addressed or supported
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Name	Beverly Frost, parent, autism advocate
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	The most significant mental illness problem is lack of understanding mental health professionals and the state to refuse mental health care for those with autism. Autistics may have one or more mental health conditions such as anxiety, depression, ADHD,aggressive or self injurious behavior, suicidality and as in my 58 YO son all of the above many due to lack of appropriate care.
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Name	Beyza
Demographic	Autistic individual
Response	when you don't have enough information on autism, or cannot get help from others there is really no way of escaping depression & anxiety. I am gonna continue in turkish. doktorlar çoğunlukla otizmli olduğumdan şüphe ettikleri için açıkça otizm semptomlarımın görmezden gelinmesinden kaynaklı sorunlarıma yanlış tanı koyabiliyorlar. mesela otizmli olduğum için beni mutlu eden şeylerden bahsetmek beni çok heyecanlandırsa da sırf bu yüzden manik olduğumu sanan doktorlar vardı. (özel ilgi alanı vs. ) [Translation: Because doctors often suspect that I have autism, they can misdiagnose my problems, which are clearly caused by ignoring my autism symptoms. For example, although I was very excited to talk about the things that made me happy because I have autism, there were doctors who thought I was manic just because of that. (special interest etc.)]
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The female presentation of autism often looks more like generalized anxiety disorder in the earlier years. This may be due to extreme masking. PDA (pathological demand avoidance) is a subtype of autism and is, by far, the most challenging, and least understood condition in our experience. Understanding PDA as a nervous system disability is crucial when working with Autistic patients who present with a PDA profile.
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Name	Blair
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance, or Pervasive Drive fror Autonomy (PDA) Somatoform disorder Anxiety disorder
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response	Comprehension issues triggers behaviors and causes severe meltdowns
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Name	Brandy Joy Leigh
Demographic	Autistic individual; Family member of an autistic individual
Response	Isolation, lack of opportunities to participate in community on their terms and sensitive to their needs
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Name	Breana Turic
Demographic	Autistic individual; Family member of an autistic individual
Response	My daughter and I both have comorbid diagnosis' of autism with ADHD and while the ADHD may hide many of our autistic traits, it also causes some of the biggest mental health hurdles for us both. ADHD paralysis makes completing daily tasks such as hygiene, chores, or classwork a huge struggle. We both have to increase environmental stimulation to optimal levels in order to achieve normal productivity, while at the same time battling the overstimulation this can cause at the same time. We both also present in a pathological demand avoidance profile of autism meaning that our autism manifests in extreme anxiety oftentimes by something as simple as the thought of being perceived by others which makes tasks such as running errands a very stressful event for our bodies.
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Name	Brian
Demographic	Autistic individual
Response	Suicide isn't an issue until it's followed thru on. Support should be able to help prior to that becoming an issue.
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	I am very impulsive and I feel the professionals may believe that I can control this through verbal prompts. This is not true. I need more concrete instructions on how to stop - Not things like: "We don't touch our friends." OR "Use your quiet voice." These terms are insulting - I really want to be able to control my reactions.
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	Anxiety & ADHD are huge struggles in school settings. These kids are supposed to act like “normal” functioning. But they aren’t and don’t function as such. School in general causes so much anxiety. We need to go back to a more natural learning setting. Kids aren’t meant to sit in desks all day.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	I have co-occuring ADHD and generalized anxiety disorder. With this, it has been hard to learn to self-regulate emotions and express them properly and in healthy ways. As a child, I would have very explosive swings of anger and was not able to learn coping strategies which devolved into me hitting myself, others, and objects out of anger and having emotional meltdowns. In adulthood, although I don't hit things anymore, I still have explosive emotions (anger and otherwise) related to ADHD and find it very hard to process and express them through words or helpful coping strategies and often breakdown, cry, withdraw from social situations, swing my limbs, engage in SIBs (self-injuring behaviors, such has hitting my thighs or gripping my fists very tight). With this, because the emotions are so big and with ADHD I have a shorter-term memory, it is very hard for me to express these emotions even after the fact. I have this as well with positive emotions, including engaging in SIBs. Outside of emotions as well, I'm very scatter brained but can sometimes focus in on the most minute things for hours or days on end, neglecting my basic necessities. I have a interest-based focus and things that don't interest me or serve a priority are very exhausting and taxing to do. It is very hard to get "invested" into something otherwise without instant gratification involved.
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Name	Brittany
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The most significant challenge is expressing those conditions in a way practitioners hear, understand, and will follow through with. Because people with autism, including myself, sometimes express symptoms in way others dont understand - theyre often over-looked or minimized.
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	That because someone is Autistic it's assumed they should also have mental health challenges (I.e anxiety). Use of treatment plans that don't work for Autistic brains (CBT). Not recognizing the difference between Autistic Burnout and depression/anxiety disorders as both have very difficult approaches to care.
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Name	Brittany Daniels
Demographic	None Indicated
Response
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Name	Brittany Shidham
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety - many people with ASD have high levels of anxiety which can be easier to notice than ASD. I showed signs of OCD from preschool age and was treated for that until my mid-30s when we realized I’m autistic. The ASD was missed. I noticed a similar trend happening with my kids but was able to help them pinpoint the ASD diagnosis to get them the best help for their self confidence.
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Name	Brixton Moss
Demographic	Autistic individual; Other
Response	There are few autistic people that are not living with a tremendous amount of trauma, because society refuses to accept and accommodate us as we are. We are also more prone to getting into abusive relationships and situations, which can also lead to trauma. I have C-PTSD, ADHD, MDD, PMDD, and various varieties of anxiety. I have tried antidepressants and ketamine infusions for my depression, but it’s still there. I’ve been in therapy for nearly a decade. I continue to find this world very hard to live in.
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Name	Brook, No Pressure PDA
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Lack of effective treatment, misunderstanding, judgment, isolation from community, parental guilt and blame when typical treatment plans don’t “work”
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Name	Bryanna
Demographic	Autistic individual
Response	Anxiety Adhd Difficulty handling stress Conflicting symptoms Depression Difficulties finding meds that helps manage symptoms
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Name	Bryanna, self
Demographic	Autistic individual
Response	being unable to hold down a job, being unable maintain relationships or friendships between peers or adults, suicidality, only one in four autistic people graduate from college.
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Name	Caesar Âûgustus, Âûtist Advocate
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	We tend to live in permanent depression, anxiety, somatic life threatening disorder, RAGE towards people (for being ever neuro typical noisy indifferent non solidaire people) to suicidality on later ages; (have in my skin a couple of this “;”😔) From desperation and tiredness of ever fighting for everything, from communication barrier to facial and body language barrier and cero interest sharing to anybody nor cold-chat (cheap-chat) able Not counting spoon lacking from those “social interactions” and/or sensory issues, and/or internal ableism tensions
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety is huge in our household. It impacts us all significantly. It interrupts sleep, nutrition, and bathroom usage. Our daughter fits the profile of pathological demand avoidance. Our day is full of anxiety. It runs our lives. Everything from putting on clothing, eating, using the bathroom, sleep, taking medicine, getting in the car——EVERYTHING in our life revolves around our 4yo anxiety. We need help. We are drowning. No health professionals take us seriously. They are dismissive and lack understanding. Help us please.
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Name	Calen
Demographic	Autistic individual
Response	I have always struggled with anxiety, depression, self harm, and multiple suicide attempts throughout my life
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response	PDA. ADHD.
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response	I’ve attempted suicide 3 times. 16 having emotional outbursts and migraines from overstimulation. it started affecting my grades. parents weren’t happy. When I stopped being successful they weren’t so forgiving. I felt shame in losing my one good quality. The more I tried to improve my grades the worse i got. distress led me to attempt suicide during a meltdown. 18. was being bullied. I was away from my abusive family but everyone around me still hated me. & i tht they should. i had to be a bad person if so many people agreed. No money for therapy, so i decided to do the world a favor My last attempt was this year. been in therapy regularly. was diagnosed with autism. I had developed an understanding of myself and challenged my guilt and shame. But new problems presented. I had to confront that autism means being disabled. The future that was promised to the able-bodied is not promised to me. I am unable to work like other people w/out relapsing into painful meltdowns and self harm. So I have to work less. When I work less I cannot afford my rent or medicine. When I work more my mental health declines rapidly towards the suicidality that i’ve worked so hard to move past. I didn’t want to live my whole life like this, always exhausted, always in pain, fearing homelessness, fearing starvation. nobody to help me. I’m scared. death had to be kinder to an autistic girl than life. Came close this time. In the past 2 years i’ve lost 4 people to suicide. they were all autistic.
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Name	Callista Markham
Demographic	Autistic individual
Response	The most significant issues caused by co-occurring mental health conditions are; depression that makes wanting to stay alive a constant and demanding task requiring a lot of mental stimulation and support, anxiety of being perceived that dictates actions, movements and thoughts, OCD that makes already physically and mentally demanding tasks even more so, and ADHD that works directly against autism demanding novelty while autism demands consistency.
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression from seemingly haven done all the correct steps demanded by society only to be still ostracized and treated poorly by most people for just existing.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response	Mental health (anxiety, OCD, attention, aggression)
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Name	Caroline Rodgerss
Demographic	Researcher
Response
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Name	Carolyn Holston , Democrat
Demographic	Service provider, health provider, or educator
Response	I worked as an aide for the teacher of this 1 child. I worked with him directly for several weeks. The way that the program was set up, I engaged him, & she observed, most days. Then he went home early & she & I would discuss what we thought. He would only speak in quotes from Disney movies. I would try to point out other things that had nothing to do with those movies. The family had 3 other children. I felt like he got parked in front of a tv a lot. It was like he was talking to the only people who "spoke" to him. Just a feeling that I got. He ended up permanently institutionalized. I'm not sure that we could have reached him.
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Name	Carolyn T
Demographic	Autistic individual
Response	The most significant challenges caused are largely based on the male-centric evaluation process; the mere presence of a co-occurring mental health condition has the ability to lead to misdiagnosis, late diagnosis, or no diagnosis – all of which are hard to traverse and lead to improper treatment, whether it be medicinal trials to see “what works” or a lack of supportive services because the individual didn’t present as autistic in a certain way.
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	Anxiety and aggressive behavior associated to PDA
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Name	Caryn Cramer
Demographic	Family member of an autistic individual
Response	For PDA autism profile, all of the actual “demands” expressed through language as well as energetic and perceived /felt demands mean 70% of autistic PDAers can’t access a school environment. it would be extremely helpful to do teacher trainings about declarative language and develop school programs that work to keep PDA autistic people able to handle a school environment. a lot of educators are aware of the sensory needs of an autistic person, but considering that PDA affects about 20% of autistic people, we need to have more awareness about what is perceived as a demand to them - as it sends them into nervous system activation/limbic system. We can train teachers and schools to work with this nervous system sensitivity/disability
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Name	Casey Foster
Demographic	Autistic individual; Family member of an autistic individual
Response	Co-morbid ADHD and its associated rejection sensitivity dysphoria place additional mental strain on autistic individuals and their care givers. Anxiety associated with OCD is a very difficult challenge to parents and care givers as well as the autistic individual. Depression can result from un accommodated anxiety and RSD.
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	My autism exacerbates my already existing severe problems with anxiety and depression, as well as my ADHD. Being overstimulated rapidly uses up my energy because it causes me to get anxious very quickly which prompts frustration which prompts exhaustion. My memory issues from the ADHD are also often exacerbated by my autism's extreme need for a consistent routine. When I can't remember or focus on my daily routine, I get more stressed out and more dysfunctional. When all of this accumulates into an autistic metldown or shutdown, I inevitably wind up completely drained of energy and burnt out, which triggers a severe depressive episode. It also often interferes with my sleep because my brain is too active to quickly go to sleep without pharmaceutical aid.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The challenges are the same as mentioned in the first question: figuring out which to treat first, and finding mental health professionals that are knowledgeable in autism vs professionals that are misinformed.
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response	Aggressive behavior, anxiety, ADHD, and now self injurious behavior
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	We experience the world so differently, and we are not understood or given consideration or empathy
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Name	catherine martell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	suicidality, social phobia
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Name	Catherine Nimmons, Parent of a child with autism
Demographic	Family member of an autistic individual
Response	Self injury behavior
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Name	Catherine Slocombe, Mother
Demographic	Family member of an autistic individual
Response	My son has all of it. Besides the Autism, he has severe Anxiety, Depression, OCD, ADHD, Self-Injurious behavior and Disruptive Mood Dysregulation Disorder. He stabbed himself a few years ago, hits himself in the head and pounds his fist on tables and in walls when he is angry or upset. He can't control his behavior and it can come on suddenly. He talks to himself constantly. We are senior parents and he is 28. We don't know if he can ever fully take care of himself in life. He cannot get a decent job because he can never get past the interview, even though he is smart, been to college and has a skill. Speech/Language and communication has always been a problem for him. ADHD causes him to not focus and getting him to pay attention is difficult. All of these conditions impact his life on a daily basis and have only gotten worse as he ages.
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	Suicidality Anxiety Depression ADHD Self-injurious behavior
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	ADHD. Lack of diagnosis resulting in suicidality, anxiety, depression, substance abuse, and vast amounts of complex PTSD often as a direct result of lack of diagnosis, education, and appropriate support. Most Autistic individuals endure vast amounts of trauma due to lack of diagnosis and education in the medical and mental health fields about Autism and what it actually is. For women and girls, they are frequently misdiagnosed and put on inappropriate medications than can cause long term damage. Even with proper medication for co-occurring mental health issues there are insanely high barriers to getting access to their appropriate stimulant medications (most Autistic 40-60% people have co-occuring ADHD) which is incredibly challenging to get prescriptions filled due to laws around schedule II drugs, lack of informed and appropriate providers, cost, etc.
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Name	Celine Fortin, The Arc of New Jersey
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Many people with autism have co-occurring mental health disorders. It is extremely difficult to find specialists to properly diagnose and treat them. Traditional forms of treatment need to be modified or new treatment models need to be developed to be effective. My son with autism has been diagnosed with depression, anxiety, PTSD, and OCD. The anxiety is the most debilitating condition he faces. It is so severe he can not leave the house. No professional we have consulted has been able to treat him effectively. They either don't understand autism and how it affects his ability to participate in treatment, or they don't understand the unique way he processes his anxiety and depression. Another issue is that individuals with autism and co-occurring mental health issues are often found not eligible for traditional IDD services such as housing or employment supports. The individual is shuttled back and forth between IDD services and mh services with neither one taking responsibility for theri care.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I'd say my response is the same as the prior question. Additionally, an internal sense of disconnectedness from others due to feeling so complex and different.
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	Massachusetts needs consistencies of services, MassHealth needs to cover adults for Home Base ABA therapy, safe and appropriate transportation for the ASD and IDD community to travel to day placements, doctors' appointments, and other places of importances. We also need a better adult system that directly services the cliental and the adult system must have transparency and accountability to the people that the system serves.
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Name	Charli Barraza
Demographic	Autistic individual
Response	Rejection Sensitive Dysphoria is a community-given name for a symptom that is so common among both Autistics and ADHD people, even without co-occurring mental/behavioral diagnoses and it is still so unknown and entirely untreated despite being both a potential threat to our lives, but also a large part of the anxiety that prevents the majority of us from being able to work, even before we hit Autistic burnout or autoimmune diseases in our late twenties and beyond.
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Name	Charlie B
Demographic	Autistic individual
Response	Social isolation from not understanding social cues can lead to crippling depression and anxiety for me
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Name	Chris Bruner, Family
Demographic	Family member of an autistic individual
Response	1. Finding practitioners 2. Finding practitioners who have experience with autism in combination with other types of disorders. 3. Finding treatments that work, to help both patients and caregivers, in obtaining positive outcomes.
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Name	Chris Knobel
Demographic	Family member of an autistic individual
Response	Aggression and anxiety
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Name	chris patton
Demographic	Autistic individual
Response	fearful nasty needs in me, yipping in my meaty mind is bad, bad, bad.
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD and depression make it super difficult to start and/or finish things. There's a lot of stigma and shame associated with needing help. Help also costs time and money. The fear of being judged or having your mental health held against you can trap a person in an unhealthy mindset, environment, relationship, or family situation.
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response	-absences from school / work - accessible treatment - discernment of when it’s mental health vs when it’s Autism - communication deficiencies affecting the ability to clearly communicae feeling in an efficacious manner (perhaps related to alexithymia)
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression, ADHD, anxiety
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	There are many people on the spectrum who have co- occuring OCD, anxiety, SIB to the point of debilitating their quality of life. Please hear and see the population who are most profoundly affected and can not advocate for their self. There is a need for self contained adult programs catering to profound and severe autism.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	My 19-year-old son (Level 3 ASD) has several mental health diagnoses that are layered on top of his autism. His most challenging is schizoaffective disorder, which was diagnosed after his antipsychotic medication (prescribed for aggressive behavior) stopped working. His child psychiatrist struggled to find a medication that would work for him. During this time of constant trial and error, he displayed manic behavior, went multiple days in a row without sleep, and started to exhibit a lack of interest in most of the things he normally talked about. A previous inpatient hospital admission had confirmed that he was having auditory and visual hallucinations. These become worse when his medication is not working. Once we got him on the right medication (over a year after the original one stopped working), his quality of life drastically improved. However, due to his limited expressive language, he was unable to express how his body/mind felt while trialing different medications. These medications are already a huge challenge to prescribe, however, autistic individuals tend to react differently to a wide variety and combination of them. The communication barrier makes this exponentially more difficult. In the last 4 years, he has displayed significant self-injurious behavior in the form of skin picking. He currently has a wound that has required medical attention for the last eight months. Again, the communication barrier makes this much more complex.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Self injuring behavior/suicidal tendencies that could and should be avoided if the anxiety and depression where controlled
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	Anxiety
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	I've been diagnosed and treated for anxiety, depression, and self harm symptoms. IMO these were caused by the autism and the lack of a formal diagnosis for years. Now that I'm diagnosed, just the anxiety persists. My autism makes me hyper aware of any and all factors and possibilities. I have anxiety if things are not in an ideal order or schedule to eliminate possible difficulties. The anxiety affects my relationships, physical health, and gives me fatigue. The anxiety also takes a toll on my nervous system.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	Dangerous and Aggressive behavior towards people and property. In my experience with my son who also has Down syndrome, this aggression can come out of nowhere and often occurs as part of a perseveration cycle of requesting or demanding something that is not available and bullying me to make it available. When there is no compromise to be had his aggression will escalate to the point where I need to seek safety and then risk him damaging our home. We’ve been working ABA for years and he’s on Abilify and Guanfacine and I’m a mindfulness meditation teacher. I cannot accept this miserable existence we all have to tolerate until death. There has to be something we can do to calm him down. I feel for him. No one likes being a prisoner to their mind. He can’t help that these thoughts come up and the strength of the desire to get what he wants, like to go to summer camp on a winter night. His emotional mind just grabs hold of an idea and puts him and the whole family through horrible experiences as it tries to get what it wants. ABA doesn’t fix this…mindfulness doesn’t fix this. I know because I’ve been trying them everyday for years.
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Name	christine smallin, orange county dmh
Demographic	Service provider, health provider, or educator
Response	significant mh concerns including psychosis diagnostic overshadowing
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Name	Christopher M Sculley
Demographic	Autistic individual
Response	I can never get respect that I think i deserve.
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Many autistic folks have experienced a great deal of social rejection and exclusion, which is inherently traumatic in a social species. I have never met an autistic person who did not have significant symptoms of trauma. One of the hallmark traits of autism is having sensory systems that are hyper and hypo sensitive, then having trouble integrating all of that extreme sensory information, and responding in the environment in optimal ways -- insert awkward pause here --. Having a nervous system that has experienced reoccurring traumas in addition to challenges in modulating behavior causes or reinforces a lot of depression and anxiety, including suicidal thoughts and behavior. So basically, one of the biggest challenges with co-occurring conditions, in my opinion, is that society (school, work, media) still normalizes one type of brain and pathologizes and "others" different ways of being. What is challenging is working on your depression and anxiety and trauma only to go out into the world and have it reinforced again and again that you're not "good enough." The other is lack of affordable access to treatments that actually help the root nervous system issues that truly disturb quality of life.
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, depression, suicidal ideation, deep shame and fear
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Name	Claire Rattey
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance
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Name	Clayton Oliver
Demographic	Autistic individual
Response	Anxiety, depression, and suicidality are probably a cluster of co-occurrence that should not be assessed in separate silos. If we don't solve the problem of autistic suicide rates, autistic people will keep killing ourselves, rendering solutions to the other problems rather irrelevant. This, in turn, needs to be examined in light of how autistic individuals experience and process trauma differently from neurotypical individuals - and why we marinate in lifelong trauma simply from existing within modern mainstream culture.
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Name	Cody Rabalais, Parent/Autism Society of Acadiana Board Member
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response
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Name	Colette
Demographic	Autistic individual
Response	I also have amblyopia with sight in left eye limited to motion. I have known of this condition since childhood and have accommodated to it. The minimal sight in the left eye does allow me to know a car is approaching on the left when driving. Fortunately my right eye has strong and near normal distant vision and is now accommodated by bifocals with age. I understand that a greater percentage of those on the spectrum have amblyopia than the general population and the same is true for osteopenia which I have. Neither of these conditions is debilitating presently and I exercise aerobically and do strength training to try to keep the osteopenia from worsening.
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Name	Colleen
Demographic	Family member of an autistic individual
Response	All of them .. he has been placed in jail Maximum security Elmira 26 guards beat him bad now Wende. The Judicial system, attorneys, judges all failed. Been in and out of system since he was 9 awful
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response	Management of aggressive/self injurious behaviors; people with autism are ending up in emergency rooms, restrained and sedated when a behavioral escalation exists versus being directed to trained professionals who can manage behaviors from the earliest point of escalation to situations that become unsafe
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response	My 19 year old daughter with Autism suffers also from Generalized Anxiety Disorder and Schizoaffective Disorder. This comorbidity is complicated by her developmental disability resulting in a low IQ of 67. Fortunately she is verbal and can articulate the horrors (psychosis) she experiences so we can prevent her from harming herself or others but it certainly makes out of home placement (for her safety) very difficult as a youth and soon as an adult. There is an overwhelming need for specialized homes to accommodate people with Autism with severe mental health co-morbidities.
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	The most significant challenges are cardiac in nature, which effects all other systems within the body of a person with ASD. Thus a problem with anxiety and loss of consciousness might be based in period cycles. There is minimal understanding taught to professionals in the mental health space of autistic bodily function and how it influences mental health of autistic individuals. This mirrors the history of mental health which was largely cognitvely oriented before it began to focus on the role of the body in trauma treatment. We need to side step this historic mistep, and begin to look for solutions to autistic mental health that take a body, to emotion, to cognition approach. Or stated more succintly, a bottom-up way of working.
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Name	Connie Fitler
Demographic	Family member of an autistic individual
Response	Our son has tried to commit suicide many times. He is currently on the correct medication and counseling regime and successfully completed a course of ECT. The challenging part: This is after YEARS of trying to get treatment successfully. Many physicians and/or facilities do not want to deal with the Dual Diagnosis of Autism and Mental Health. It is like a stop sign is held up and you are told to seek treatment elsewhere. The other issue is cost. We are paying out of pocket for counseling and psychiatric care because in order to find a qualified practitioner in both mental health and autism, you need to look as they do not take medical insurance. We have had many practitioners say they understand autism, but after a visit, you realize they do not know how to deal with an individual with autism and you are searching again for someone to assist your family member.
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Name	Coordinated Care Alliance
Demographic	Representative of advocacy organization
Response	According to our member data, over 40% of our members have been prescribed an ADHD, Antidepressant or Antipsychotic medication, indicating difficulties maintaining a consistent mental state, potentially creating barriers to employment, education, social interaction and self-care.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response	My son has diagnosed ADHD (combined type) and Generalized Anxiety. His ADHD affects him almost more significantly than his ASD -- especially his impulsivity and aggressive behavior (controlled largely by ADHD medication). His anxiety has him worrying about social relationships, which because he is Autistic, he is not well-equipped to navigate. For example, when he can't get a peer's attention, or he perceives he has been wronged, he will lash out. He perseverates when he perceives he has done something"bad" to a friend (out of impulsivity or inability to navigate the social situation). The rigidity from his Autism exacerbates his ability to navigate friendships. And everything can spiral. I worry about his long term mental health and his risk for depression.
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	The most significant challenge autistic individuals face with co-occurring mental and behavioral health issues is lack of understanding of their conditions from people in positions of power over them, such as teachers, physicians, employers, police, and even sometimes mental health providers. This is often due to misconceptions about autism or misinterpretations of autistic behaviors. For example, my child’s anxiety was often seen as defiance in the school system, because he would freeze followed by a meltdown when continually pushed.
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Name	Crow
Demographic	Autistic individual
Response	Suicidality, self injury
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Name	Crystal Neihart
Demographic	Family member of an autistic individual
Response	My son will get so nervous around new people, and in new situations that he doesnt enjoy himself at all, infact I feel like I am torturing him by bringing him to do what other kids would view as fun.
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Name	Crystle
Demographic	Autistic individual; Family member of an autistic individual
Response	When they all are acting up at the same time and make life harder.
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	Autistic people are trained by society from a young age to behave in a specific way, forcing themselves to hide the way their acute senses present information differently, and to consciously mimic the behavior of others in a bid for social integration. These efforts to mask their differences are frequently unsuccessful, aggravating a social ostracism by those who do not experience these things, and who socialize in a natural way by instinct alone, without conscious effort. A rapidly-growing population of young adults, around the age of thirty, are forced to come to terms with the emotional and physical toll of the excess effort required to socially integrate, and the social mask irrevocably disintegrates under the physical exhaustion. The exhaustion is aggravated by the onset of depression, due to the act of conducting your life counter to your core beliefs, while masking. This subtle development over years of failed attempts at socialization becomes an acute onset of neurological decline and a loss of valued life skills – the common term is “autistic burnout,” but the wording leads outside observers to assume the autistic person is experiencing short-term exhaustion; in reality, this neurological decline takes 3-5 years of applied effort before any degree of recovery occurs.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response	Anxiety is extremely high in some, especially when someone is non-verbal or minimally speaking. More focus on how to help this vulnerable population is important.
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	He is self-injurious when he does not feel well. It is one sign that we need to check his health status more closely. Usually gut related and sleep deficits lead to these behaviors. Close observation and management to prevent these issues requires full time caring and he is now 31 yrs.
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Name	Cynthia Macluskie, Autism Society of Greater Phoenix
Demographic	Family member of an autistic individual
Response	1. Aggression and self injurious behavior often as a result of pain or seizures and inability to communicate the pain. 2. Anxiety and it inferring with building social relationships and participating in social activities. 3. ADHD 4. Executive functioning and planning skills 5. Depression.
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Name	Cynthia Tyler
Demographic	Family member of an autistic individual
Response	I am fortunate that my child is relatively mentally healthy. He has been surrounded by a positive and supportive environment, which has contributed to that. However, that is an outlier in the statistics. An autistic child will thrive in an environment that supports them, and many many autistic children do not have that, which results in poor behaviors that they model, or react to, as they have no other source to draw from. Regardless of how positive my child's family support is, my child still will experience over-stimulation from stress, environmental changes, sickness, hunger. The reactions to these include jumping, hand flapping, audio-visual stimming, and occasionally a rare meltdown.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	Lack of access to what I call focused services both medical, educational, vocational, social and community. The generic education and training that so called professionals have is inadequate. There have to be doctors, teachers, social service staff and, most importantly, personal care companions that have very specific training and skills in this area. More money needs to be directed to paying these individuals an appropriate and livable wage and FAR LESS on administrative positions. In other words, too many dead wood at the top and not nearly enough hands-on workers where they are desperately needed.
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Name	Dale
Demographic	Family member of an autistic individual
Response	Anxiety is clearly a massive problem for many with autism. Life with severe anxiety is extremely overwhelming at times. Self-injurious behavior is quite common, even for those who are considered higher functioning in the autism world. In my experience, it increases along with physical problems such as constipation, or any pain, and of course, inability to communicate which is immeasurably frustrating.
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	With each co-occurring condition, the autist person becomes less independent. This can lead to a host of mental health disorders in addition to the autism diagnosis. Co-occurring mental health disorders also make autism and the co-occurring disorders harder to diagnose. This often leave the person with the co-occurring conditions under- or over-treated. These individuals may struggle with greater instances of self-medication in the form of drug or alcohol abuse. They tend to engage in riskier behaviors and have a smaller support network, especially if they are late diagnosed. The individuals typically suffer low self-esteem and have difficulty maintaining gainful employment. Personally, I have co-occurring ADHD, depression and anxiety. I was late diagnosed with ADHD (28) and Autism (35). Treatment of ADHD was only partly successful because the autism went undiagnosed. While I have maintained employment my entire adult life, it has been well below what I should be earning. I find that I burn out at about 6 months regardless of the work and struggle with attendance. These are things I have witnessed in other people with similar co-occuring mental health conditions.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	Lack of money and resources to properly manage the comorbid conditions within the families. More conditions cause more absences from work which places families at risk for homelessness and hunger.
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Name	Dana Haff
Demographic	Autistic individual
Response	Depression-like disorders and anxiety-like disorders are rampant in autistic people. However, many of us get minimal relief from standard antidepressants or anti-anxiety medications, raising the question of whether it’s really depression or anxiety as currently understood, or whether there’s a different cause for these symptoms.
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Name	Dana Holz, Center for Drug and Health Studies, University of Delaware
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Systems do not talk to each other. Mental health needs are too often defined as behavioral challenges.
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Name	Dani
Demographic	Autistic individual
Response	Anxiety and depression for me
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Name	Danica Allen, Educator
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Difficulty being taken seriously, autism being dismissed as symptoms of cooccurring mental health issues. Doctors trying to medicate my neurotype.
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Name	Daniele Armstrong
Demographic	Autistic individual; Family member of an autistic individual
Response	Sadly these questions want to separate different types of conditions, physical, mental and emotional, etc. into groups that will disservice great numbers of autistics. Just because one autistic isn’t affected as much by one condition as another autistic will be, does not devalue other mental health conditions that need just as much if not more support a few selected conditions.
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Name	Danielle Christy, Private Practice psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Co-occurring mental health issues including anxiety, depression, ADHD, and other mental health diagnoses. These can cause debilitating symptoms for people with all degrees of verbal fluency and cognitive ability. There are not enough mental health providers with evidence-based training in both the medical and educational systems.
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Name	Danielle Mays
Demographic	Family member of an autistic individual
Response
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Name	Danielle Terrell
Demographic	Service provider, health provider, or educator; Other
Response	Access to mental health care resources and services. Limited mental health providers who have experience working with autistic people. Limited professionals trained to work with challenging behaviors. Injury liability. Not enough staff to support individuals with significant needs.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Mental health, coordination, challenges in school, bullying, concentration, masking from dyspraxia to fit in end in disasters in relationships mistakes, challenging peer relationships, dangerous behaviour, self hatred, blame, scapegoating, suicide and self harm in later stages after years of misunderstandings, blame, ill treatment, bullying and not being listened to
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA!
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Name	Danny Schaible
Demographic	Family member of an autistic individual
Response	Aggressive and self-injurious behaviors, in many instances it is beleived, associated with catatonia.
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Name	Danyale Sturdivant
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	ADHD and Anxiety is often misdiagnosed in black children and other children of color and can be mistaken for other disorders such as ODD
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	aggression when frustrated or doesn’t get what they want. self injury bites himself,hits head,breaks windows. pulled a chunk of hair out of my head and has bitten me causing severe pain and scarring
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response	To Whom It May Concern, I am reaching out to share my lifelong journey with autism, epilepsy, anxiety, depression, and ADHD. These conditions intertwine in complex ways, deeply impacting my daily life. My autism has led to social isolation, intensifying my depression. Additionally, the interplay between seizures from epilepsy and ADHD symptoms creates unique challenges. Frequent focal seizures disrupt my focus, and when combined with ADHD, it becomes increasingly difficult to complete tasks. This struggle is often misunderstood, especially in social interactions. Communicating effectively is a hurdle due to my autism, leading to skepticism when I explain issues like memory lapses caused by seizures. There's a significant distinction between having a disability and being disabled. A disability doesn't always lead to debilitation unless it hinders one's ability to live life as desired. In my experience, autism often shifts my other conditions from mere disabilities to a state of being disabled. It amplifies the difficulties I face, turning manageable issues into significant obstacles. I hope this insight helps in understanding the multifaceted nature of living with multiple co-occurring conditions. Recognizing and addressing these complexities is crucial for providing better support and fostering a more inclusive environment. Thank you for your attention to this matter.
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Name	David
Demographic	Autistic individual
Response	Professionally Diagnosed Cptsd Ocd Bipolar Adhd Social anxiety Suspect Pathological demand avoidance Rejevtion sensitivity
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	ADHD Anxiety
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	Co-occurrence is significant. Data about co-occurrence is limited and scarce. The issues are complex and interrelated. Autism awareness is required by crisis response and intervention, de-escalation, 988 and 911 responses, particularly by underserved populations, and appropriate documentation need addressing. Psychiatric holds, emergency room, transitional housing needs to be adapted to the population. Community awareness building is essential, is needed to shift thinking to those with autism also have behavioral health needs. Special and General Education need to address bullying and other trauma experienced in school and community settings. Education programs and clinicians need training and develop to offer treatment. Research needs to identify the most appropriate levels of care. Language needs to be developed around the levels of autism, with recognition that those with autism Level 3 have requires levels of support often including family, different than those witl Level 1.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response	The most significant challenge caused by motor issues is that it makes communication very difficult for many individuals on the Autism Spectrum. Many are non-speakers and this, combined with their motor/sensory challenges, creates a brain/body disconnect that doesn't allow them to accurately/reliably take standardized tests. So they are inaccurately labeled as cognitively deficient and placed into intensive ed programs - even though their cognitive skills are strong. They need support with AAC devices and support for training/communication partners.
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Name	David McWaters
Demographic	Family member of an autistic individual
Response	1. Executive functioning disability resulting in inability to keep things clean, organized, and tidy 2. Anxiety over minor health episodes and injuries 3. Excessive shyness making finding friends difficult
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Name	Dawn Werner
Demographic	Family member of an autistic individual
Response	ANXIETY
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Name	Day, Autistic, ADHD, Dyslexia,and co
Demographic	Autistic individual; Representative of advocacy organization; Other
Response	attention-deficit hyperactivity disorder, anxiety, OCD, ticks
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response	I am partially sighted, have carebrsl palsy, borderline learning difficulties and PDA. By far the most disabling of these co occuring conditions is PDA. It stops me functioning and very fee people understand
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Attention deficit - teaching new skills need to be small steps at a time Anxiety - maintaining scheduled routine with teaching on dealing with interruptions as life deals
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Name	Deb
Demographic	Family member of an autistic individual
Response	adhd depression ocd anxiety
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Name	Deborah Bilder, University of Utah Huntsman Mental Health Institute
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Mental health crises have a substantial impact on the well-being of autistic individuals. For children and autistic adults with high support needs, this impact extends to the affected person’s family and caregivers. Psychiatric and physical conditions contribute to crises, yet most medical providers are poorly-prepared to evaluate the broad range of conditions that could be causing or exacerbating crises. While agitation, aggression, and self-injury are not core features of autism, autistic people presenting in crisis are at risk for disruptive behaviors to be attributed to autism rather than being evaluated for underlying medical and psychiatric disorders. The Sources of Distress Survey (SDS) is a screening questionnaire developed and validated to assess individuals with neurodevelopmental conditions presenting in crisis. Using online, branching logic, the SDS extends the breadth of symptoms that can be screened. It has been used over 500 times in medical settings. The most profound effect of SDS’s clinical use occurred from identifying discrepancies between medications prescribed and psychiatric disorders present: > 50% of individuals with severe psychiatric disorders were taking medications that likely worsened these conditions. Over 70% had insufficiently treated medical problems that could contribute to crisis. Further refinement of SDS items and algorithms is ongoing. A prospective evaluation of its impact is needed to extend its use and inform standards of care.
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Name	Deborah Gill
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Keeping him safe and keeping staff to work with him are the most significant challenges. He has had very significant anxiety which triggers aggression and self-injury behaviors. Because of limited verbal ability he cannot participate in regular mental health treatment for anxiety. As a licensed Marriage and Family Therapist I know those treatments well and do use them with individuals with ASD who do not have the intellectual disability and language disabilities my son has. We have used ABA but it is also of limited use. When he is anxious he has behaviors. This has caused him to have a revolving door of caregivers. It is extremely difficult to create a stable, well trained in his PBSP staff at his house.
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response	My son [PII redacted]'s (age 22) most significant challenges caused by co-occurring mental mental health conditions include everything mentioned except suicide but especially self injury, aggression & anxiety. We struggle to find effective psychiatric treatment such as meditation for these conditions. My son has been on several medications since age 10.
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Name	Delia Ruiz
Demographic	Family member of an autistic individual
Response	ADHD has been challenging for my son. He struggles to sit still and has had injures due to this, ie falling off chairs and beds.
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Name	Deon
Demographic	Autistic individual
Response	I've been misdiagnosed as depressed and anxious my whole life, when those are only symptoms of undiagnosed autism and ADHD. I didn't know I was autistic until my mother informed me at the age of 26, she refused an official diagnosis when I was young. I've dropped out of college twice, and I know if I'd been diagnosised I would have grown up with the correct supports I needed and would have been better able to succeed. I've struggled with self-harm since I was about 8. I believe this is in part due to undiagnosed AuDHD and also a religious upbringing while being a closeted queer child.
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	anxiety
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response	anxiety, ADHD
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Name	Dongmei Li
Demographic	Other
Response
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Name	Donna Costello, Private practice. Retired from public school as school psychologist working with students K - 12 with what was formerly known as Asperger’s
Demographic	Service provider, health provider, or educator
Response	Undiagnosed ADHD as well as diagnosed ADHD. Given that ADHD doesn’t hang out alone, there is a significant amount of anxiety and depression. Research suggests that individuals with ADHD have worse problems with attention and focus. Those with ADHD have more issue with planning.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	Anxiety, depression, hyperactivity, aggressive or self-injurious behavior, and obsessive compulsion disorder
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response	In addition to the autism and down syndrome, my son has ADHD and anxiety. The anxiety causes him to become overwhelmed, and ADHD causes impulsiveness, which then leads to expressing his anxiety by scratching anyone in his space.
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Name	Doreene Donald
Demographic	Family member of an autistic individual
Response	Hyperactive disorder
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Name	Dr Christopher Pyne and Holly Swan, Parents
Demographic	Family member of an autistic individual
Response	One of the more significant challenges is his self injury (with medicine , he has not been aggressive for a few years) but he is currently bruised all over his right arm and some on his chest from his pinching self so hard when he upset. He is so hyper it is hard to do things with him as he has to jump around so much.
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	Anxiety and depression are huge areas that are often present in autistic people, and these can worsen during autistic burnout, even to the point of suicide. Trauma often co-occurs, and it is likely that autistic people are more likely to experience both acute and complex trauma. There needs to be far more attention paid to autistic burnout and masking. These can impact a person’s ability to maintain employment and meet their financial needs, thus putting them in an even more precarious position.
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Name	Dr. Autumn Dae Miller
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	1) The DSM-5-TR and the DM-ID-2 are both extremely limited. They were written by people without lived experiences and therefore can only be taken as books of assumptions based on assumptions. 2) Psychiatrists-by and large-are not diagnosing using the most updated versions of the DSM nor are they doing copious amounts of research on new caveats to mental health diagnoses and their treatments. 3) Most evaluations are 10+ years old and professionals refuse to take a FRESH look at a person; however, we all change and so do our experiences. It's a harmful practice. 4) We COMPLETELY miss how trauma masks other symptoms and shifts the way co-occurring MH presents in anyone! 5) Autism can quiet typical MH symptoms and exacerbate others. What looks like X in theory can be expressed very differently in an Autistic client.
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Name	Dr. Bernadette "bird" Bowen (She/they/Dr.), Media Ecology Association
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Other
Response
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Name	Dr. Henny Kupferstein, Doogri Institute
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization; Other
Response	Aggression and self-injurious behavior are not in the DSM-5 criteria for ASD. In fact, these are signs of PTSD. the same is true for property damage, elopement, and school shootings.
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Many autistic people put extensive energy into “masking” their struggles to try to fit in, which can lead to misdiagnosis regarding autism and underdiagnosis of co-occurring mental health conditions. Masking also inherently means there is shame about the true self, which can lead to increased stress, anxiety, and depression. The prevailing behavioral treatment for autistic children often teaches masking and compliance, which can have significant negative impacts on their development (e.g., one study suggested that ABA correlates with increased PTSD symptoms in autistic people (Kupferstein, 2018)). Challenges in navigating neurotypical social norms can lead to and become intensified by mental health conditions, leading to increased feelings of isolation, misunderstanding, and loneliness. Sensory processing differences and challenges with emotional regulation can be exacerbated by mental health conditions (e.g., anxiety often seems to increase sensory overload, and vice versa). Finding mental health support that understands autistic people is difficult, especially through a neurodiversity-affirming lens. Traditional mental health treatments do not often consider the unique perspectives and experiences of autistic people, leading to less effective or even harmful care. It is especially rare to find providers who are able to conceptualize the nuances involved with co-occurring mental health conditions. More education is sorely needed.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	I'm sure that we vary. Poverty definitely plays a role in labeling without support. In every dimension. For me, I cannot seem to keep a job. Traumatic stress caught up with me, and each job takes a toll on me. I work hard, but I make people uncomfortable-- even when I've done nothing wrong. I really struggled in my career and now, I cannot see myself returning full-time to work. It's too stressful. But then how can I support myself? Some of our community really suffers from lack of real support, in their homes and in the work place, because of their aggression and injury to self/others. Also, understanding us as a variation, interesting and not always the same in our mental illness.
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Name	Dulce
Demographic	Autistic individual
Response	Depression, anxiety, ADHD, complex post traumatic stress disorder and suicidal ideation is common but not always in tandem.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	The intersection of autism with mental health conditions like depression, anxiety, aggressive or self-injurious behavior, and suicidality adds a layer of complexity. Autistic individuals may encounter difficulties in expressing and managing their emotions, requiring nuanced mental health support that acknowledges and addresses their unique needs.
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Name	E.R
Demographic	Family member of an autistic individual
Response	PDA
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Name	Elena, Mother
Demographic	Family member of an autistic individual
Response	See aforementioned response, it includes most, if not all co-morbid conditions.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Depression, anxiety, and suicidality have been extreme challenges in my life. During pandemic lockdown it wasn't that bad but once things cleared and people started returning to normal my anxiety was very high. When I had a recent suicidality episode I decided to seek psychiatric care and I was on a 6 month waiting list for a psychiatrist because so few were accepting new patients or even work with autistic or suicidal patients. When I last needed a therapist it took me almost 9 months to find someone remotely qualified who was accepting new patients and I had to attend therapy with two different therapists and call many more to find one who was qualified to treat me. Therapists and psychiatrists are not trained to work with autistic adults as a general rule. Grants towards therapists who want to learn to specialize or research autistic adults may help. Additionally after a layoff this year I became very depressed and anxious despite finding another job quickly. My new work situation is really not a good fit, which is aggravating my symptoms. My younger brother, meanwhile, requires assisted communication and did not receive it when he was younger. I believe if he had received more consistent access to AAC when he was younger rather than pushing for him to speak he would have stronger communication skills and be able to convey his needs, which would lessen aggressive and self-injurious behavior. (In the past, helping him to use them has helped.)
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Name	Elio McCabe, Autistic Women & Nonbinary Network
Demographic	Autistic individual; Representative of advocacy organization
Response	Nine out of ten autistic women have experienced sexual assault or harassment—and most of them experienced their first sexual abuse before the age of 15. ABA may increase this vulnerability. ABA, especially in its traditional form, teaches children to comply with parents’ and teachers’ demands using operant conditioning. ABA is especially dangerous when used in the hands of adults who take advantage of autistic children’s compliance training to sexually abuse them. Research needs to be conducted about autistic people’s response to sexual trauma and its possible relationship to compliance training. Studies exploring child abuse and autism should note that primary caregivers can and do sexually abuse their children. There is a known link between neurodiversity and gender diversity. People diagnosed with gender dysphoria are eleven times more likely to also be diagnosed with ASD. Numerous studies show that LGBTQ autistic people experience greater barriers to healthcare access than their allistic cisgender peers. This means that even when healthcare is available, autistic gender-diverse people’s experiences drive them away from it. More research is needed into improving barriers to care for gender diverse autistic people. IACC needs to take a public stand against the incredibly harmful myth of rapid onset gender dysphoria. Finally, research which takes into account the voices of autistic people should examine the link between gender dysphoria and autism.
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Name	Eliot C., Disability Network Washtenaw Monroe Livingston
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Non-autistic people underestimate how much of our emotional disturbances are triggered by overstimulating, unsafe, or otherwise uncomfortable environments. Meltdowns or shutdowns often seem to come from nowhere from the outsider’s perspective, but often they are the result of failing to keep ignoring the things that bother us that others don’t seem to mind (bright lights and colors, intense smells, crowds of people, noisy environments, etc.). Mental health “treatments” for autism still focus on diminishing the behaviors that non-autistic people find disruptive or weird without regarding what is happening psychologically that causes us to produce those behaviors. Autistic people may end up traumatized from therapies that force them to hide their true feelings to appease authority figures. Even if we don’t end up in ABA, we absorb social messaging that similarly suggests conforming to others’ standards is the only way to be taken seriously in life. We need more research into trauma-informed treatments for mental illness among autistics, and into what mental health professionals need to know to be more responsive to autistic clients.
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Name	Elise Aguilar, ANCOR
Demographic	Representative of advocacy organization
Response
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Name	Elizabeth Bennett, Children's Hospital Colorado
Demographic	Service provider, health provider, or educator
Response	Anxiety. I think anxiety underlies many of the other hard things and certainly requires a great deal of management from families and results in avoidance of important things like vaccines and routine lab work.
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	ADHD - severe inattention to anything that is not a topic of interest, gets lost in his own thoughts TICS - has motor and vocal tics Irritabiity - can be extreme when things are not going as planned or he gets interrupted doing something he is engaged in
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Name	Elizabeth Emen, Emen Counseling Services
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Systems of care need to catch up to better understand the overlap and connections between ADHD and Autism. The evaluation and treatment of anxiety has different origins and treatment needs depending on whether there are underlying ADHD and Autism traits. Nervous system biology is not at the center of mental health diagnostic systems and treatment services and this is an enormous disservice to the autistic community and others. The assessment and interventions through a nervous system and neurotype lens yield drastically different results for an autistic individual than if they are assessed and viewed through the traditional behavioral health model- this is a form of ongoing oppression and harm to all, specifically the unidentified community of autistic individuals that are socially high masking/low support needs and often do not even know that they themselves are autistic. They many diagnoses they've often been given are typically inadequate external assessments about the symptoms that have resulted from not being accommodated and supported with their biological differences, and do not account for internal experiences and true differences in biological needs.
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Name	Elizabeth Larned, MA, LMHC-A
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The anxiety that comes from thinking they should "just have it right by now"
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	Very difficult to work and to maintain a job with autism and mental health problems. Working tends to make the mental health problems worse by overstimulation and ableism at work. Work also takes all of the energy we have and we don’t have any energy left for things we enjoy so that also adds to mental health deteriorating. It’s difficult to get accommodatings at work for mental health struggles, and once we tell our employees we are autistic we are often subjected to abuse.
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Name	Ellen
Demographic	Autistic individual
Response	Depression, anxiety, adhd, disregulation
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Name	Ellen Kopel-Puretz
Demographic	Family member of an autistic individual
Response	PTSD
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Name	Elyssa Bolt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Many autistic adults with a co-occurring bipolar diagnosis argue that this link needs to be better understood by educators, parents, and eventually employers. Being constantly in trouble for time management and mood dysregulation throughout childhood and well into adulthood takes a considerable toll on most bipolar individuals’ mental health, an impact that is felt especially hard by people who also struggle with the sensory and social struggles associated with autism. The distinct yet probably related condition of borderline personality disorder, or BPD, is thought by some experts to ultimately be a self-preserving response to adverse childhood experiences, which autistic individuals are more likely to experience. Another mental health condition often experienced by autistic people is post-traumatic stress disorder, or PTSD. The same question of whether one causes the other or some other factor causes both applies to the link between autism and PTSD, but in any event autistic people are more likely than the general population to report PTSD symptoms and diagnoses. Among the autism community, the general consensus is that we are more likely to experience traumatic events than allistic people due to sensory overloads and trouble reading social situations that are prevalent autistic traits.
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Name	Emilee
Demographic	Autistic individual
Response	All of the above. Mostly depression, which can be caused by a lot of comorbidities
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Name	emily
Demographic	Autistic individual
Response	I would say the hardest part of having any issue while being autistic is that the people whose job it is to help you truly believe that you can't possibly mean the things you're saying to them directly. There have been times in my life I was given harmful treatment because doctors and adults believed that my self-reporting and observable behavior were closer to manipulation than a genuine prompt for a child's needs to be met. In my generation, lots of people embodied a haunting image to adults - cutting our wrists, choosing drugs over consciousness, and so many children we lost to opiates. The ways we were treated for the methods we found to soothe ourselves and survive our environments were damaging in all the the ways that adults can carry damage from childhood experiences. I think to help us, the goal shouldn't be to have a kid who doesn't hurt themselves. It's to take it seriously when they let you know why it is they're hurting themselves. I honestly can't understand what adults thought we were doing - trying to be cool? Our pain was being dismissed as misbehavior - it was a disaster. The gaslighting is a physical threat as it is to any trauma survivor. I know you need to address pressing and tangible issues, but I also know I'm not alone when I say that I told the adults the first time. I told the adults directly. I used my words. And they just... thought I meant something that I didn't mean. And I never got a chance in this world, because of it.
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Name	Emily
Demographic	Autistic individual
Response	I’ve dealt with depression and anxiety all my life, but it wasn’t until I was 16 when I noticed I’ve become more aggressive, almost like how it is with Borderline Personality Disorder. I’ve always experienced ADHD symptoms, but never was treated for it because I was diagnosed with autism at the age of 3 and that was the primary focus of my care. I’ve never self harmed but I’ve definitely felt suicidal at times when I’m burnt out and spiral into a depressive state, usually around my menstrual cycle.
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Name	Emily
Demographic	Autistic individual
Response	ADHD, depression, anxiety, low self-esteem
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response	My son has multiple mental health diagnoses that co-exist with autism. He has schizoaffective disorder, depression, and anxiety. It is difficult or impossible for him to understand the point of view of another person, he can be paranoid, he gets overly anxious about minor health concerns, he has had several hospitalizations for suicidal ideations, he handles transitions poorly, he has demand avoidance, he freezes under any kind of pressure, he is socially anxious, he sometimes sees and hears things that aren’t really there. All of these things affect his ability to live independently and have a fulfilling life.
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Personally, the most pervasive challenge is anxiety, related to any number of challenges and uncertainties that affect me as an autistic person far more than they do most people, and for which I have very little support available. I don't know whether I'd consider this more of a mental health condition or a social factor, but I'd also say loneliness. For autistic people in general, probably depression and suicidality.
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	If communication is a barrier for an individual with autism it may make it harder to work with a mental health professional to address the co-occurring mental health conditions.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response	Self-injurious behaviors are one of the most serious symptoms of challenges related to emotional self-regulation, anxiety disorders, and depressive episodes. They can have physical medical consequences that reach beyond an immediate moment of dysregulation. Personally I have experienced at least three instances of ER admission and CAT scans due to acute head trauma caused by my own uncontrollable self-injury. Self-harm such as head banging, scratching, biting, hair pulling, etc. are common in those with developmental disabilities, because our brains lack the capacity to respond to socially, emotionally or physically challenging situations in a measured and rational way. The self-harm is not deliberate or calculated, it is an automatic, unmanageable response to distress that we do not have the skills to navigate in a cognitively appropriate way.
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Name	Emma
Demographic	Autistic individual
Response	Not being able to access treatment from providers who understand what it’s like to be autistic—I’m lucky to have found an autistic therapist and I’m never going back. Also, the most common treatment paradigms, such as CBT, have not been studied in autistic populations, which means that there is literally no evidence based psychotherapy available to us, and while many in the autistic community are aware that CBT isn’t effective for most autistics, and that we need different approaches to mindfulness techniques, the approaches that work better for us, such as DBT and existential therapies, are much harder to access—and still have the drawback of not being designed with our neurotype in mind. Another issue for autistics with co occurring mental health concerns is that for a lot of people, especially women and people of color, have their mental health problems diagnosed first and then autism is overlooked. Many of us end up on dangerously high doses of medications we don’t actually need and are doing more harm than good for years. I interacted with dozens of mental health providers over the course of almost 20 years, I worked with some of them for 5+ years, and none of them figured out I was autistic. How many people just like me will never get the help they need because the people they ask for help can’t recognize obvious autism? What could my life have been if I had known sooner?
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I have been diagnosed with PTSD, anxiety, depression, and ADHD. I have had my anxiety, and PTSD diagnosises since age 13, I got diagnosed with depression at age 17 and with ADHD at age 20. One of the major challenges I have had with my co-occurring mental health diagnoses other than the symptoms of the diagnoses themselves is how because of Autism my presentation of them is slightly different - for instance I have had to explain to mental health professionals that there is a felt difference between sensory overload and needing to not interact with people to preserve my own energy versus not feeling apathetic towards interacting with people because of depression. In addition during therapy I have found while I am really good at rationalizing and understanding why I am feeling that thing because of childhood messaging that I needed to have smaller emotions I am not good at actually letting myself feel my feelings without getting anxious about how I am masking my autism infront of others.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	There is no help for the 24/7 care our loved ones need in so many aspects
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Concomitant Bipolar disorder. When in a manic phase, aggressive behaviors are more predominant. Depression has challenges of its' own.
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response	Depression, anxiety, aggression, suicidal thoughts,
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Name	Eugenia Ramsey
Demographic	None Indicated
Response
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	I have PTSD and GAD. Neither happened in because I am Autistic. They happened because of the neurotypical world does not accept an honest, justice-seeking, uncompromising, feminist woman that doesn’t waste her time kowtowing to men or people-please to be liked, nor did my parents like a child that smarter than they were. In a supportive environment, it’s highly unlikely that my gifted natured would have resulted in disability.
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Name	Ewa Omahen, PhD, Retired school psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Fin Finney
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The most significant challenge is provider bias against treating multiple issues. If I have one thing down, I feel locked out of treating the other. For example, being diagnosed with anxiety and not receiving any additional diagnoses or treatment after suicide attempt. As an autistic adult I have had to self advocate to even discuss autism in an evaluation setting, and have been met with direct opposition to more than 1 diagnosis (in addition to PTSD). As a public health community advocate and educator, the number one complaint I hear in relation to autism is inability to get a diagnosis. The second complaint is the risk of violence that comes with diagnosis with a primary concern for Black children.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	facing lot of behavioral issues including hyperactivity and not willing to interact with anyone and always want to spend time alone in any corner.
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	anxiety, aggression, self-regulation challenges
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response	From my own lived experience, ADHD, chronic fatigue, and the isolation brought about by the proven Double Empathy phenomenon have posed significant challenges to how I'm able to interact with the world. The fact that autistic people and non-autistic people have completely different non-verbal languages and mannerisms is a very hard barrier to overcome.
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Name	Freya
Demographic	Family member of an autistic individual
Response	Anxiety Extreme mood lability ADHD Aggressive and violent behaviour Social difficulties Low self esteem
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	Anxiety, depression, attention-deficit disorder (without hyperactivity), skin picking, Morsicatio buccarum, thoughts of "wanting to die" (not planning sucide, but I always wish I were dead, because the thought of having a longer life without any help and without any familimembers is unbearable)
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	Aggression and exhaustion when hungry or tired. Physically uncomfortable when constipated. Fighting constipation daily. Food we have to drive to get specific foods so that he will eat. Self injures when frustrated due to sleep, hunger and physical discomfort
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	Severe anxiety, depression, paranoia, outbursts of anger and frustration, thoughts of suicide
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Name	george knoth
Demographic	Family member of an autistic individual
Response	aggression and self-injury
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	Paralyzing social anxiety. Especially during teen and young adulthood this kept me from realizing benchmarks for social involvement and relationships.
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Name	ginamarie
Demographic	Other
Response	behavior and having my boundaries violated - my health file must be disgusting . here be one sample. blood works i be ask butter fly needle my hand please - (note it be the prime office so they be awares me have do the bloods before) the person say oh the no we like do the arm. then they poke me both arms no vein and then wants try fish around my upper arm above elbow - as the if. so i repeat my hand please use butter fly - again the health worker dismiss my request. so then i be have the behave issue irrate label other negtives cause why i no want be human pin cushion and no respects my ask. consent dismiss in health care setting has the many negtives that give us triggers of depress anxiety adhd etc.... labels but please over drug us that then snowball side effects - which many cause other health probs concerns even the behavior issues..... least we keep you making money the system right....
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Name	Glen , The Jewish Guy Business venture PTY LTD
Demographic	Autistic individual; Family member of an autistic individual
Response	Indeed
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Name	Glenda Hayes, Grandparent
Demographic	Family member of an autistic individual
Response	There is anxiety about social issues and making friends. There is great sensitivity and worry about health of beloved grandad who has health problems.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	Angela has periods of anxiety, aggression and some self harm behavior.
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Name	Grace, Autistic person
Demographic	Autistic individual
Response	Alexithymia can make emotions hard to identify and understand for autistic people like myself. Additionally perseverance and literal interpretations can cause negative thoughts to spiral for us and we can take our own thoughts as absolutes. Additionally we have variances in neurotransmitters and therefore are prone to complex experiences with mental health and emotions.
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Name	Grant D. Sparks, MS
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	As one might assume, having a nervous system reaction that forces shutdown has drastic impacts on a person’s mental health. Depression, anxiety, self-harm, obsessive-compulsive disorder, and unstable attachments are a common experience of the autistic community, due in no small part to the impact of their nervous system responses. Being forced out of work, social interactions, passions, hobbies, or often basic activities of daily living by one’s own brain has significant mental and emotional impact. Self-harm and detachment from loved ones are often used to wrest some semblance of control over this experience, often only complicating matters further for an autistic in a spiral.
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Name	Greg
Demographic	Autistic individual
Response	Anxiety and depression. Creates a loop in my head and I end up coming to the worst conclusions of every interaction. Makes me see knives where there aren't.
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Name	Gretchen Stewart, Center for Learner Equity
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response
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Name	H
Demographic	Family member of an autistic individual
Response	Heightened anxiety that doesn’t respond well to CBT and leads to depression
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response
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Name	Heart of Texas Behavioral Health Network
Demographic	Service provider, health provider, or educator
Response	A large majority of mental health care providers are uncomfortable or unwilling to work with individuals who have an intellectual or developmental disorder. Many individuals who have IDD have co-occurring mental health conditions including autism.
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Name	Heather
Demographic	Autistic individual
Response	Being afraid to be open about what we are going through out of fear of being put into a hospital or removed from the surroundings we know / placed on medications / not being taken seriously or having these issues approached in a way that causes more damage than it does help. Also, self diagnosed autistics are harming autistics by conflating other mental health issues with autism.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Daycare personnel are not trained to handle aggressive or self injurious behaviors. Kids are often kicked out of daycare and it's difficult for parents to work, but SSI is not enough to live off of to stay home with them. Autistics that elope and flop are difficult to manage in stores and stores need Caroline's carts in them so we can keep them safe and secured.
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety and depression associated with the difficulties of being autistic in society have been the biggest struggle in my personal experience. I am also diagnosed with ADHD and this causes difficulties in daily activity and socialization.
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Name	Heather
Demographic	Family member of an autistic individual
Response	ADHD, Anxiety, Depression
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Name	Heather Bourne
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	executive functions weaknesses/ frequently comorbid ADHD can present a double barrier to accessing learning in and outside of schools-- the autism profile can impact HOW one can access interventions for ADHD, and vice-versa. My daughter has dyslexia, and her autism/ pathological demand avoidance PROFOUNDLY impacts hwo hard it is for her to engage in dyslexia interventions-- and in turn, her anxiety skyrockets and she feels terribel about her brain. The intersections here are each something to understand and separate out.
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety and PDA cause meltdowns and impact participation in ADLs
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Name	Heather Gray
Demographic	Autistic individual
Response	Major depressive disorder, anxiety, ADHD, suicidal ideation, elopement
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Name	Heather machin
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	As prior comment, without a comprehensive perspective of potential cooccurring conditions, a deep understanding of each individual condition and the intersecting points of the person’s environment, culture, personal beliefs and supports, we have limited ability to offer the most help in supporting these individuals to have the optimal quality of life and feel productive in their communities.
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	Aggressive and schizophrenic
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	As I previously stated, severe aggression and self-injurious behavior seriously prevent individuals with these conditions to live in less restrictive settings or to work at all. Research must continue to help these individuals and their families to address these behaviors. Medication as a solution must be explored as a way to contain these behaviors. The effects of these behaviors are devastating for the individual and his/her family and last a lifetime. I cannot stress this enough.
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Name	Holly
Demographic	Service provider, health provider, or educator; Researcher
Response	They inability to access education and safe places to live.
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Name	Holly Connor
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Again, most mental health conditions are brushed under the primary diagnosis. The assumption that those on the spectrum do not have feelings. Taking the time to understand their perspective and then try to be diagnosed based off that and not "traditional" or "typical" ideologies.
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Name	Ian Morris
Demographic	Autistic individual
Response	Terrible parents who wanted me to appear "normal" kept trying to reshape me into someone people who judge them would find "normal". Normal is a setting on the dryer. We autistics are weird. I considered suicide years ago, but I got myself psychologists and psychiatrists instead. We autistics deserve to be accepted for who we truly are, not what a popular worldview considers us to be. In order work against ableism, we need to have a society with a better understanding of who we autistics are.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	A. Understanding of mental health needs: Aggression, self-injurious behavior, and suicidality are symptoms of Autism and co-occurring mental health conditions that are not always received in a supportive manner among mental health care providers. Autistic people are often dismissed when presenting with mental health symptoms, leading to delays in diagnosis and treatment interventions. Many providers lack understanding of how mental health conditions are expressed in autistic people and are not adequately trained to treat these co-occurring conditions. B. Obsessive Compulsive Disorder (OCD): Research suggests that autistic people are more likely to have co-occurring OCD. Some symptoms of ASD and OCD overlap, such as compulsive, restricted, and repetitive behaviors, making diagnosis more challenging. C. Communication Challenges: Autistic people may struggle identifying or communicating emotions or trauma, making therapeutic interventions more challenging. Difficulties with social skills and self-reflection can also hinder therapeutic relationships with mental health providers and may call for tailored strategies for rapport-building, support, and interventions. PAR also recommends that the IACC reconsider listing “aggressive or self injurious behavior” as a mental health condition. Aggression and self-injurious behavior are potential symptoms indicative of mental or physical health disorders rather than disorders themselves.
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Name	Ines Echegaray
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Again, that Autistic Shut Down is mis-diagnosed as Depression and this leads to ineffective and injurious treatment plans, instead of working with us to address the Autistic Shut Down to begin with...that is the most significant challenge. The general ignorance about this is profound, even in the Medical and Behavioral Communities where we have to seek assistance for our sensory challenges. And then we have to explain to service providers the difference, while we are shut down! It's an impossible situation you're putting us in.
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Name	Irene Tanzman, parent/guardian
Demographic	Family member of an autistic individual
Response	There is no plan in place to discern a Crohn’s flare from a psychiatric or behavioral issue.
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Name	Izabella Pulvermacher, Dental Coordinator Department of Developmental Services
Demographic	Service provider, health provider, or educator
Response	Oral health - dental care is omitted....
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Name	J Maust, HUB 302
Demographic	Family member of an autistic individual; Other
Response	Anxiety, bipolar, schizoaffective, ADHD, suicidality, frontal lobe disrythmia
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Name	J Olson
Demographic	Family member of an autistic individual
Response	Again, lack of understanding and acceptance. Particularly in the educational setting. Watching your Autistic child have panic attacks every morning because they are petrified to go to school and become so depressed that they question their own worth because when they go to school they are taught that everything they know, think, feel, do, are is wrong is an all consuming feeling of helplessness and soul-crushing as a parent.
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Name	Jack Brownn
Demographic	Autistic individual
Response	Anxiety, BPD, Depersonalization
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Name	Jackie
Demographic	Autistic individual
Response	My depression makes it hard for me to clean, take care of myself, eat. My anxiety makes it hard to sleep and do things outside my house. My adhd craves structure and balance but everything is out of whack because I haven't been able to clean or get things done like I need to. I get overestimated by all the tasks and chores I have to do, sometimes causing a melt/shut down, not to mention the daily normal stressors the average adult has like affording rent, food, and bills.
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Name	Jackie Ceonzo, Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Aggression and self injury are the most isolating for our family and the most challenging to deal with kids I have worked with - it makes your world so small. As kids age so do their parents and when you reach the point that they can physically hurt you it becomes such an unmanageable situation so quickly. Self injury is heartbreaking - to see my son bite his wrist til he bleeds, or kids hit themselves, especially when the hospitals are not really equipped to deal with treating the individual so most kids are probably over medicated to avoid an outburst. With these two issues it becomes very hard to be in the community - programs won’t take them so we have all folks suffering at home with too few capable psychiatrists trying to manage the behaviors with trial and error medications. It’s awful and there are way too many people living like this and they afraid to talk about it.
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Name	Jaime
Demographic	Family member of an autistic individual
Response	Anxiety, attention-deficit and hyperactivity in our child brings significant challenges. His anxiety drives him to clap his hands in an unstoppable manner and endless and sometimes as he sleeps his hands seem to move causing him to be restless and sleepy at school. His attention-deficit has brought him many challenges at school as he tends to direct his attention anywhere but the things he's supposed to be learning. He is a very smart child but his lack of attention distracts him from his full learning capacity and delays his learning and this retreats him from being at the same learning level from a normal child his age. He has to have a special individual education plan developed specifically for his needs and sometimes the resources are limited and the specialized parties are limited in some schools and this arises challenges to communities that deal with the spectrum. He is also very hyperactive and there have been reports from school where he climbs chairs/desks and jumps and runs in the class. He is always so hyper at home and he climbs objects which is dangerous as he has fallen a couple times and is a constant vigilance we have to put up with every single day and is time and energy consuming. Is hard to visit places and have quality family time as he can't endure long waiting times. We have limited places we can visit and we always have to choose nearby locations since he can't sit for long periods of time inside a car.
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Name	James V. Bradley
Demographic	Autistic individual; Family member of an autistic individual
Response	Major depression, severe social anxiety, ADHD (combined type: both inattentive and hyperactivity), suicidality.
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Name	James Weingardt
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Anxiety, self injurious behavior, aggression, suicidality, chronic traumatic encephalopathy, wellbeing, happiness, rejection sensitivity dysphoria, flourishing, social inclusion without masking,
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	My son will hit his eyes until they are swollen shut. He elopes into traffic, water and has no awareness of safety. He cannot talk other than Bathroom Please and short needs. He will become so aggressive we have been sued by school staff who personally sued us while he was at school when the behavior happened. We have had to hospitalize him since the age of 5 and have tried every other therapy and service we have known about with no success. We need knowledgeable Doctors, more help for adults for housing and services because when they graduate their needs do not change and they still need to learn. My son has autism and other commorbidities that makes it impossible for him to email you, speak at a conference and get his needs met without 24/7 help. When Aspergers was taken out of the DSM is when things became progressively worse for my son who will NEVER attend Harvard. Please do not minimize my son by saying to me "how do I know that he cannot attend Harvard". He has global developmental delay and needs 24/7 care. I will be his voice as long as he is not treated in the way that is humane. He was restrained in a Hospital for over 3 months. Please do not forget about the adults who are not attending Harvard and never will. Please remember EVERYONE is important. The best compliment I received in my life was the fact that I never treated my special needs son any different than my other 2 boys. I have fought long battles for him and fought law suits. I have watched him hit his eyes until they were swollen shut and he had to be restrained in a Hospital.
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	depression anger self-injury ADD
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Name	Jana Young
Demographic	Family member of an autistic individual
Response	PDA & ADHD
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Name	Jane Horn
Demographic	Family member of an autistic individual; Other
Response	For the child who uses echolalic speech, there is often great frustration that his/her speech is not understood. It is very frustrating for parents and caregivers.
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Name	Jane Roberts, University of South Carolina
Demographic	Researcher
Response	early and valid diagnoses are a huge challenge as diagnostic overshadowing can result in delayed or invalid determination (mistake fear and anxiety for autism features). Anxiety will effect employment, academic achievement and social competence.
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Name	Jane Seymour
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance profilr
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Name	Jane, County AE
Demographic	Other
Response	The indivduals that have a diagnosis of Autism with higher IQs and open in ID ODP waivers, providers are struggling to support these indivduals in our currret service sytem with Indivduals diagnosed with ID. Some of these indivduals have severe mental health issues and are not wanting to be supported in the MH system because of their Autism diagnosis.
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Name	Janet Callahan
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	It is *extremely* challenging to find appropriate mental health care at all, especially for children in our state. Finding any mental health professional willing to work with an autistic child, much less anyone who actually knows how to do so effectively, is nearly impossible. It took 5 years to find a therapist to see one of my children who has severe anxiety, presumed PTSD, ADHD, probable OCD, and self-injurious behavior. My children's psychiatrist, who it took over a year to find, no longer accepts any insurance; my children's medicaid case worker told us they cannot provide a referral because the medicaid provider wait lists are too long. There is no facility in our state who will take inpatient mental health clients who are autistic or have other medical issues. So...if we cannot manage my daughter's needs at home, there is no other option.
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	Among those with intellectual disability and limited communicative abilities, aggression, self-injury, elopement, pica, and property destruction are often present. Every year multiple children with autism wander from home and drown. Less dire, but much more frequent consequences are bruises, cuts, skin infections, and broken bones for the individual and often their parents, siblings, and support staff. Repeated self-injury can cause detached retinas and concussions. Pica causes individuals to ingest all types of inedible objects. Such behavior can require emergency medical care, surgeries, and costly hospital stays, and often these individuals require extraordinary measures to ensure that they adhere to treatment plans and can heal. Such conditions also often lead to out-of-home placements, as most families don’t receive the needed supports to keep their loved ones at home. Among those with higher cognitive abilities and fewer communication issues, anxiety, depression, obsessive-compulsive disorder, ADHD, and suicidality are found at much higher rates than the general population, yet effective treatments and counseling are extremely short supply. Not only are these conditions traumatic for the individual, the family, and support persons, they often impose enormous costs on families and ill-equipped systems of care. Reducing the frequency and intensity of these mental and behavioral health conditions should be a key goal for autism treatment and research.
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Name	Janice
Demographic	Family member of an autistic individual
Response	Anxiety is the most for my daughter
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response	Depression and anxiety were diagnosed at age 13, but adhd and autism were not identified until she was 25.
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Name	Jared Goodrich
Demographic	Autistic individual
Response	I have ADHD, I have social anxiety etc it can be difficult but manage.
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Burnout, depression, anxiety, meltdowns, suicide, sleep deprivation, sensory triggering, can't leave house / interact socially.
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	I am not a doctor, but I believe that my son is mildly depressed. He also doesn't have good executive functioning skills, or the ability to make plans, remember them, and follow through with them.
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression, ADHD
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic people face ableism and struggle with social situations. These usually result in low self esteem and loneliness. With a lack of appropriate coping skills, it can get exhausting and mental health can be affected
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Having ADHD and Autism is very confusing because while one disorder pulls at the side of our brain that likes routine and structure the other seemingly disorganized part of the brain craves spontaneity and newness.
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Name	Jeffrey Poms
Demographic	Autistic individual
Response	statistically 85% of autistic people are unemployed or can not maintain a job. this is often because workplace accommodations are not readily offered, available or granted when requested. Depression can be so severe that the individual may not be ABLE to get out of bed to go to work, even those who work from home. This leads to self harming behaviors and even suicide as the autistic person can't get or maintain employment and if they lack a sufficient social structure which most do, suicide rates skyrocket at the thought of not being able to pay bills, afford healthcare, support services etc. one becomes hopeless as its a never ending cycle that when not escaped many feel there is no other option then to end it themselves.
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	I have been afraid of my own shadow for most of my life. I was always easily intimidated and dominated. Anxiety and depression has ruled my life. I can't concentrate because I have been gaslighted and betrayed so much. I am cursed with Dyslexia also, and a Dyslexia of thought as well. I have always been easy prey for predators and parasites. Everyone for the most part is plotting against me also. I am cursed with ADHD also. And no one likes me and everybody is against me.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response	Managing mental health amid coping with autism-related traits
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Depression, social isolation, ADHD.
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Name	Jemima J
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Anxiety, hyperactivity and agressiveness
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Name	Jenise Woolf, Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	There continues to be confusion between symptoms and behaviors. The DD system is not equipped or trained to deal with mania, psychosis, etc., and the BH system has not done well with adapting therapies and clinical resources. Most of all there is a huge lack of integration between the systems!!! Hospitals are ill-equipped to provide inpatient admissions, medical or psychiatric. Sensory equipment and basic behavior modification should be included in treatment and OTs / BCBAs should be part of treatment teams.
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Name	Jenn
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, aggression
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Name	Jenn Raley Miller, Parent
Demographic	Other
Response	My child, now age nine, has been assessed by a pediatric neurologist as "twice-exceptional": sensory processing disorder + ADHD + gifted. In the primary grades, we had conflicts with therapists and educators who insisted that the diagnosis must be ASD. Yet the ADOS result was "minimal-to-no evidence of autism" and the SCQ score was 11. Our family is only one example in which different providers have different interpretations of neurodivergence.
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Name	Jennifer Colberg, Grandma
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Self injury, anxiety
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Name	Jennifer Higgins
Demographic	Autistic individual; Family member of an autistic individual
Response	depression, anxiety, attention-deficit hyperactivity disorder, aggressive or self-injurious behavior, social phobia, excessive worry, OCD, hypervigilance, mood instability
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Name	Jennifer Proffitt , Parent and Teacher
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	He has depression, anxiety, adhd, when he was younger he had aggressive and self-injurious behavior. I feel like he has RSD rejection sensitive dysphoria. It's intense anger when someone hurts your feelings or rejection or criticized assume no one likes you and is overly sensitive. So far none of the doctors I know have anything to help me with this.
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The aggressive behavior and lack of impulse control have caused him to be totally secluded from peers in school. It also led to a large number of restraints, lock downs and seclusion rooms.
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	The biggest challenge is that society needs to understand how these things are intertwined. I have a son moving on from 12th grade who is not ready to enter adulthood. I am doing my dissertation on cooperatives between ISDs and the community they serve. Most of the community (businesses, organizations, etc.) need to learn about people on the spectrum. They need to learn how to handle them or work with them. With 80% of this population doing nothing after their public education ends, they become severely depressed because there is no more interaction. And not that public school interaction is much better since most school kids ignore them, but someplace to go and something to do is better than sitting at home. Depression and bad experiences lead to a host of issues with this group because it is hard to find dedicated, caring, and compassionate people with patience. So far, I have run into no one that even knew that there was a problem, and I did not know that the ISD I am looking into have programs that they could work with to help in the experience and education of this population. Most of them are anxious due to the impatience of others not understanding how to take the time to educate, explain, and show them (as many times as it takes).
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response	My son has Autism and Anxiety. We have not been able to successfully help him manage his anxiety as he has limited verbal skills and is not able to participate in traditional talk therapies and there is no medication management that we have found so far that helps to decrease the symptoms of his anxiety. In our area (rural Northern New York) we also lack providers who are able to treat individuals who are dually diagnosed with I/DD and Mental Health disorders.
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	adhd depression anxiety pda
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	lack of support from they system designed to keep us in poverty and in the conditions of death. depression from not being able to afford to live. 85% of autistic people are unemployed or underemployed AND have college degrees. anxiety from being gaslit by providers that won't take our conditions or health seriously by believing us or wearing a mask to protect us from covid. ADHD which is not well managed by med, hard to access due to barriers and bias of providers, and unaffordable since we don't have access to job and thus healthcare. suicidality because the systems keep us in the conditions of death and no community support due to eugenics and ableism pervasive in our oppression.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression and anxiety begets suicidality or SIB. Depression and anxiety are often very difficult to treat and the meds have pretty significant side effects: emotional numbness, apathy, sedation, weight gain, high blood glucose readings, flat affect, etc. ADHD causes impulsivity in many forms (overeating, oversexualized status, overspending, etc.), inability to focus (makes us seem "stupid"), hyperactivity makes us unable to remain still when required to do so, etc. Aggressive behavior makes us look "mean" "unpredictable" etc SIB may cause us to get committed to mental institutions, cause infection, etc.
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Name	Jesse Scott
Demographic	Autistic individual
Response	Significant challenges with mental health include ADHD, Anxiety, aggressive behavior under stress. General anxiety In social situations.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression. We are criticized by others CONSTANTLY our entire lives and struggle to make friends. If it wasn’t due to brain chemistry then being neurodiverse in a neurotypical society does the job. Anxiety. Our nervous system is constantly bombarded by demands it isn’t equipped to deal with. This, in combination with the living in a world not built for us, often makes us really anxious. ADHD is commonly co-occurring. I’m and AUDHD’er myself. I know many autistics who struggle with BPD although I am not one of them.
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Name	Jessica Bearden
Demographic	Service provider, health provider, or educator
Response	The challenges are often getting school systems to make appropriate accommodations for co-occurring disorders. My experience with Alabama schools and mental health is that they do not have the proper training, understanding, and resources to meet the needs of autistic individuals
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Name	Jessica Blackmon, Just an ADHD dyslexic autistic girl
Demographic	Autistic individual
Response	I suffer from depression, anxiety, attention-deficit hyperactivity disorder, aggressive, and suicidality
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Name	Jessica Iverson
Demographic	Autistic individual
Response	Regular treatments and therapy are not as helpful or accessible for people with autism. It is logical that someone with autism or other condition would also experience depression and anxiety due to social stigma and bullying. And doctors over diagnosis anxiety and depression instead of investigating whether autism and/or ADHD may be the source of difficulties especially in women. They tend to want to prescribe antidepressants and anti-anxiety medications instead of stimulants that are proven to help ADHD which would then help the depression and anxiety. The medication shortages have caused ADHD people to quit or be fired from schools and jobs due to lack of medication.
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Name	Jessica Mullaney
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response	He has a lot of aggression due to not being able to communicate his needs
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Name	Jessica Smith
Demographic	Autistic individual
Response	BPD, CPTSD, PTSD, PTED, anxiety, depression, adhd. there are so many its almost hard to not list almost everything. phobias, fears, OCD, bipolar, ( yes i have all) eating disorders is HUGE, they are all horrible. theres not really one is worse than the other they all play a huge role in how it effects us.
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	getting out of bed somedays. being able to calm my mind enough to sleep, the aggressive or self injurious behaviors for me happen during melt downs (that i have made categories for based on how they affect the people around me mostly but also how long the recovery time and how long / bad they normally are. these behaviors tend to happen in the 3s and 4s (higher ones) the suicidality is off and on with how bad the depression can get, very bad after bad melt downs (often caused by conflict) and i have to be able to bring myself back up from that low point and say their are people on this planet that still need me. depression & anxiety (same scale as before) from 1 to 10, lately is around a 4 or 5 adhd tends to be around that 8-10 (contributes a bit to the anxiety as well)
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	In our severe/profound autism population, behavioral pathologies are pervasive and can severely compromise well-being, to the point of being fatal. These include aggression, self-injury, property destruction, pica, and elopement. Aside from death, common consequences include bruises, lacerations, scarring, broken bones, ripping out of hair, and skin infections to both the afflicted individuals and their caregivers. Repeated self-injury can cause detached retinas, cauliflower ears, and traumatic brain injury. Pica can cause our children to ingest lightbulbs, rocks, toys, soap and countless other inedible objects. These are more than "challenges," they are lethal or traumatic injuries that often require emergency medical treatments, surgeries and complicated, costly hospital stays. Not only are these behaviors traumatic for the individual, the family, educators and caregivers, they often result in the need for emergency medical treatment, crisis and inpatient care, and residential placement. This imposes enormous costs on families and care systems. Reducing the frequency and intensity of these pathologies should be a preeminent goal for autism treatment and research, as they can result in death or further serious disability.
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Name	Jill Ide, University of Washington Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response	Fro our son, it is definitely anxiety, which make it harder for him to interact with others. He also has dyspraxia and ADD.
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	ADHD (all types) Dyslexia Especially in girls: depression & anxiety from misdiagnosis and/or from internalizing struggles
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Name	Joanna
Demographic	Family member of an autistic individual
Response	Generalised anxiety , extreme responses to frustration due to ADHD , makes him agressive . His PDA and anxiety makes it hard for him to leave the house and experience new things . Poor self esteem , extremely attached to care givers . When overwhelmed it can take a long time to calm down and due to the panic attack he is exhausted the day after . His nervous system disorder ( pda ) makes every day asks turn into a fight / flight response . Managing this is extremely tricky as other ways of parenting , rewards , punishments do not work but upset him more .
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Name	Joanne Miller
Demographic	Service provider, health provider, or educator
Response	Professionals do not see beyond the autism label. They attribute any mental health condition to being part of the autism diagnosis, instead of looking at the person from a holistic viewpoint to consider all variables that may be interacting for the person.
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Name	Joanne Van Hoosear
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological demand avoidance: this presentation of autism is not well understood and not a recognized diagnosis in the US. Especially given that typical approaches that are effective for many autistic folks can actually worsen PDA responses, this is an important area for study.
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Name	Jobless autistic
Demographic	Autistic individual
Response	Depression, anxiety, bipolar type 2, BPD, ADHD, PTSD, C-PTSD.
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Name	Jody McCormick
Demographic	Autistic individual
Response	All of the above. From my family and friends to my bosses and coworkers, it can be extremely difficult to communicate effectively with them and feel like I'm being correctly understood. It's isolating. I'm not anti-social because I don't want to be known. I'm anti-social because I need to be known. I'm just usually the only one can. But I'm still human and still need real connections with people. Not being able to really have that without hiding myself by mirroring the speech cadences and, as closely as I can, the thought patterns of who I'm interacting with so that I can even somewhat be heard -- is tiring. It's so easy to get depressed and to feel so very alone when you have to constantly adapt yourself like that. Any excitement from getting to know someone or being in front of people can quickly turn to anxiety when you know that sooner or later something you will say or do is not going to mean what you thought it would to them, because you simply do not have the same toolkit for the way you cognitively process information. The consistency and pervasiveness of that experience is, well, depressing.
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Name	joe valenti, parent advocate
Demographic	Other
Response	Attention-deficit hyperactivity, self-injurious behavior, hurting of others. Our state has an interdisciplinary team which coordinates care which is not available int he community.
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response	I have late-diagnosed (aged 49 years) ADHD & Autism, and significant monopolar depression. In the past, I have had significant challenges with executive function & emotional regulation, which I know has caused trauma for both of my children. Since my diagnosis, I now have the tools to manage my emotions, and am working to heal both my trauma, and that of my kids.
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	Getting through a day without injury. Having access to providers with experience with people with profound autism. Very few available. Lack of research on the underlying causes for profound autism and co-occurring mental health conditions.
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Name	John Saito, Oregon Commission on Autism; Washington County Developmental Disabilities Advisory Council; Oregon Home Care Commission
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Depression, anxiety, and unsafe behaviors all interfere with, delay or prevent use of valuable therapies and treatments, many of which are intended specifically to help alleviate these very conditions. Worse, many autism / IDD service providers are incapable, unwilling, and not required by law to accept autistic people with aggressive or self-injurious behaviors into their Medicaid-funded programs. This leaves the autistic individual insolated, and in greater danger of neglect or worse once their primary caregivers (parents) die.
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Name	John Yacks Jr.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	For me, I was very dependent on my mother. I didn't feel comfortable with being around new people or even getting help. I felt I didn't want to say the wrong thing.
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	As an autistic youth with ADHD, I suffer from anxiety and depression. I receive support from a behavioral aide in school due to aggressive behaviors that I had in the past and my inability to initiate and complete tasks. Being autistic makes it difficult for me to express myself and my feelings. I still have difficulty being understood by mental health professionals in both the school and medical communities. My co-occurring mental health conditions are underestimated, and their symptoms are incorrectly associated with being autistic. It was a challenge for my family to find medical professionals who understood both autism and could treat co-occurring conditions.
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Name	Jonni Jordyn
Demographic	Autistic individual
Response	My therapist has not related my anxiety with my autism, but I started suffering migraines at age three (although my physicians never actually admitted they were migraines until age twelve. They told us children don't get migraines because they are related to adult pressures.) My migraines had two main triggers, mint, even just the smell of a candy cane, and anxiety. The day before every new school semester would come with a migraine. I learned on my own how to recuperate from them by age eight and nearly eliminated them by college (through relaxation techniques.)
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Schizophrenia anxiety self injuring
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	The anxieties that come along with ASD often result in impulsive behaviors that make it difficult to interact in the community and classroom. For example, an impulsive behavior my son has when upset is grabbing hair or flopping to the floor.
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Name	Joye, service coordinator in HCS program
Demographic	Service provider, health provider, or educator
Response	communication. being non-verbal doesn't mean that the person has nothing to say. being unable to make yourself understood is the cause of a lot of aggression.
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Name	Jude
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	As a 77 yr old neurodivergent woman with diminishing brain, due to 20 yrs paying financial, emotional, mental + social price for subsiizing (lifetime undiagnosed) 77 yr old privileged white man. My naively/innocently/unknowingly)/lovingly housing + feeding + tolerating his severe autistic dissociation which has disablesd his ability to earn a living or to be father & grandfather -- his children's choice. Where cen he, where an I, get help? WE NEED HELP
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Name	Judith Ursitti, Profound Autism Alliance
Demographic	Representative of advocacy organization
Response	Because people with profound autism can't provide written comments to requests like this, we’ve attempted to convey their experiences through caregiver feedback: "Self-injury is so damaging to his body & mind. He will hit his head until his temples are swollen & blood vessels burst on the surface. He bangs the bridge of his nose & has created a bump. He has scars all over his hands, arms, & legs that are remnants of self-injury episodes. He picks his skin; he slams his hands to his chest; he has callouses from biting areas repeatedly; he has left me with scars on my hands & arms; he pulls hair so hard that my scalp throbs; he scratches, pinches, & is unpredictable. He has always had self-injury & aggression. However, as an adult, it is very life-altering. It affects services & his quality of life. I don’t understand how services won’t accept people with behavioral challenges." "Aggression towards others & herself- Biting, scratching, hitting, putting pressure on people with her hands or other body parts), hitting herself in the head, picking at her skin, bending her body into painful contortions, throwing herself down, using objects as weapons, breaking her teeth on objects, pulling out hair." "OCD - Constant ritual behavior, verbal ticks that must be completed, hoarding objects, shrieking at high levels at all times of the day & night if something doesn't go according to ritual, triggering violent episodes. Hand washing until she has severe eczema."
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Name	Judy Stoltz
Demographic	Family member of an autistic individual
Response	For my son he is still learning to communicate openly. He has not communicated that he has depression , but he has been self injurious at times over many year, and occasionally been aggressive toward me/mom. He has spelled “IT DESTROYS ME WHEN I HURT YOU! BUT YOU HAVE NONIDEA HOW HARD IT IS TO BE IN A BODY I CANNOT CONTROL.” The way autism is perceived is all wrong They are not mentally deficient In fact are some of the smartest people I know But they have been trapped in bodies that we dont understand What if we and by we i mean the entire system of schools, doctors, specialists, ASSUMED COMPETANCE
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	Many mental health conditions are inequitably diagnosed among autistic people. One study found that Medicaid-eligible Black children were 5.1 times more likely than white counterparts to be diagnosed with adjustment disorders before being diagnosed with autism. Labels of oppositional defiant disorder or aggressive, dangerous, & self-injurious behavior (SIB) disproportionately affect autistic people of color, especially Black autistic people. Misdiagnoses delay access to therapeutic support, leading to mental and physical harm. SIB is separate from suicidality. Studies from 2021& 2024 show disproportionate suicide attempts among autistic people. Suicidality is understood among those with lived experience as a “portal communicating to us what needs to change in society so that people want to live.” Quality wrap-around services—not involuntary hospitalization—must be prioritized. The co-occurrence of gender dysphoria and autism is well-documented. Access to gender-affirming care is under threat, & it’s of critical concern to the autistic community. ASD screening should never be required to access gender-affirming care at any age because it perpetuates the discriminatory myth that autistic people are “too disabled” to know ourselves. Avoidant/restrictive food intake disorder (ARFID) is common among autistic people, & leads to nutritional deficiencies. There is a lack of interprofessional education, training, & knowledge about treating ARFID in autistic people.
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenge caused by co-occurring mental health issues is that only the symptoms are treated and any correlation due to autism is often overlooked and merely treated with an antidepressant.
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	My child is often anxious and can have a hard time focusing.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Innovative methods to treat both anxiety and ADHD that are not medication based are needed. For instance can ultra sound be utilized in the brain as it has for addiction? Co-occurring mental health conditions: Anxiety: anxiety affects everything in a life. If a person is anxious, they simply cannot engage in therapy, or any activity without being hobbled by fear. ADHD: In our son's 26 years, we have seen a definite loss of interest in the medical community to coming up with either more targeted medications or non medication based therapy. Particularly for young adults, there is practically nothing that is truly new and innovative to try to help these individuals. ADHD can make employment, social, sleep and interactions of every kind difficult or impossible to be successful. Think about it, the inability to modulate impulse control and stay on task is a recipe for failure in every area of life.
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response	Our research findings demonstrate a very high rate of symptoms associated with ADHD in autistic youth. This includes increased inattentiveness, impulsivity, challenges with emotional regulation, irritability, planning, organization and so forth. Similar to what we observe in ADHD, these symptoms, cause challenges in academic and occupational responsibilities and in their social relationships. Because we know that impulsivity in ADHD can lead to higher suicidality in ADHD it is worth exploring if this is also the case in autism. As autistic youth mature, their parents increasingly request assistance for these issues, particularly once they feel that language and other social challenges have been addressed. We have much to learn about how ADHD symptoms in autism differ from how they present in ADHD without autism. We do know that there is insufficient interventions to address these issues in autism.
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Name	K
Demographic	Autistic individual; Researcher
Response	Depression and anxiety are extremely common mental health concerns for autistic people, especially autistic women. Another major concern is OCD, which can overlap significantly with autistic rigidity to the extent that it can be difficult to differentiate. OCD can interact with autism to cause severe daily life difficulties, such as worsened need for routine, difficulty with adaptive functioning, restricted eating, and social isolation. Finally, posttraumatic stress and dissociation are under-recognized despite autistic people experiencing trauma and specifically interpersonal violence at extremely high rates. Trauma can not only significantly impact mental health, including increasing self-harm and aggression, it can also contribute to social isolation, reliance on predictable routines, cognitive rigidity, and loss of skills. However, there are very few mental health providers who are willing to treat posttraumatic stress in autistic individuals, especially those who have higher support needs.
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Name	K
Demographic	Autistic individual
Response	For me, depression and anxiety is a big one. I’m also trying to get an adhd diagnosis, but it’s difficult because the medical field doesn’t take me, a female passing person as seriously as they do a male. I can’t get a diagnosis for something I clearly have, because it’s just severe anxiety, and I’m shoved off. My anxiety makes it difficult to speak up about things that bother me, in relationships and in groups. This leads to severe miscommunication and extremely hurt feelings on both sides. I also have a severe case of abandonment issues—combined with the anxiety it’s not great. I am constantly hyper-examining people and figuring out the best personality they would want around them, and I perform exactly how they would want me to. I’ve done this for so many years, I don’t even know if I have a personality. I’m whatever anyone wants me to be. My depression makes it difficult to do literally anything. I’m grateful I’m on medication, it’s easier, but it doesn’t cover every problem. I’m constantly searching for my next source of dopamine, what will make me want to do something—and I’m incredibly grateful that those sources are found through media, and not abusable substances. I frequently worry I will become an addict in the future because of how strong my need for dopamine is.
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Name	K
Demographic	Autistic individual
Response	Social distress due to RSD as a result of social rejection and harassment due to autism. Lead to self harm, panic attacks and isolating.
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Name	K
Demographic	Autistic individual
Response	On the mental health side my ADHD has had quite an impact on my life. I was diagnosed late in life which i heavily regard to my autism internalizing a lot of my symptoms making it less noticeable. This caused a battle with separating what is causing different symptoms which were commonly blown off as anxiety. I noticed my depressive symptoms only increased when overstimulation but were labeled as depression rather than a symptom of the stimulation
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Name	Kaalyn
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Complex childhood trauma and autism go hand in hand like PB&J. The mistreatment by caretakers, schoolteachers and admin, doctors, psychologists, and larger society is everywhere. We are easy to abuse bc people assume we don't understand what's being done to us. That no one will find out. That no one will care anyway. That we deserve it. So much gaslighting, trickery, abuse of power, berating, physical violence, punishment for existing, and so much more. We are also extremely vulnerable prey to sexualization and predation. The overlap in symptomology between complex trauma and autism also makes many of us go misdiagnosed for decades (from either condition). Lack of education and awareness is terrible. ADHD and Autism also have competing symptoms constantly, but frequently pair together.
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression, anxiety, C-PTSD, OCD, ADHD, unhealthy attachment issues for human connection, ARFID, eating disorders, suicidal thoughts, alexithymia, panic disorders, dissociation from stress, derealisation, insatiable urges, extreme impulsivity
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Name	Kaela
Demographic	Autistic individual
Response	Sorry I grouped anxiety in with the last question. Yes, I have severe anxiety and have found mild releif from an SSRI but its still tough and the fact that my brain works differently always seems to be the problem and not just a symptom of the problem so many people invalidate it or just treat is as a normal and expected part of the autistic experience.
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Name	Kai
Demographic	Autistic individual
Response	Adhd. The symptoms overlap and conflict in the most annoying ways. I need routine but routine is nearly impossible for me which causes a ton of my anxiety and depression. I think I'd still have those if I was only autistic but being both autistic and adhd makes it worse I think.
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Name	Kai C.
Demographic	Autistic individual
Response	Personally I have a combination of autism and ADHD. My depression was the absolute worst of my symptoms pre-medication. I really desperately used to eat my feelings as my coping mechanism and the only daily comfort I really had. Eating your feelings when you don’t understand them and have no impulse control is often a central issue of people who develop eating disorders. Now my worst symptom mentally is my anxiety. I have horrible social anxiety as well trauma from decades of being bullied that I’m constantly dealing with, and the willingness to get out of bed sometimes is the biggest challenge of my day, because facing the world means another exhausting day of anxiety even with medications. When I am irritated or overstimulated I get very aggressive and often don’t recognize why until I am out of the situation, and typically it makes me have intrusive thoughts of either harming others or myself that I need to get away from. At times I go into full manic episodes where I feel the impulse to drive on the interstate at 90mph. Others I fully lose all focus on everything except my anxiety and sensory issues and want to dig myself into a hole and just stay there. The anxiety medication helps a lot with this irritability as they limit external input to some degree and make it less overwhelming. I have struggled with suicidal thoughts because of all of the aforementioned things.
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Name	Kaisi rolfe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression anxiety adhd pda
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Name	Karen
Demographic	Family member of an autistic individual; Other
Response	The mental health conditions my son experiences are ADHD and depression, severe anxiety that is debilitating ..causes him to be unable to leave home. He has not been anywhere except a doctors office in many years.
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Name	Karen Ashikeh, Registered Nurse- Health Adviser
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Problem: Not using the training children get to express these conditions of concern, pain or fear, with clear and understandable communication leads to these other behaviors. Using, routine mental health check-ins, with devices available, is one way to encourage understanding, acknowledgement and empathy from care givers that may help reduce other, more unwelcome behaviors. The ways to express, sadness, pain, fear and concerns about self and others need to be incorporated into materials like tablets and electronics, pictures showing concerns that children can point to and should be used at the start of any major daily activity period, wake up time, school lessons, returning home, etc. can be starting points. "How do you feel this morning?" " Are you feeling well today?" Are you glad today? Sad today? Training for ways to reassure and assist when responses are not well or positive or secure, may be some of the most important "lesson plans" between parent/child and child/teacher or other adult or other child. The need for other ways of expression may be both less effective and more problematic for all. Focus on clear feeling and status of wellness communication sooner and more often to help all ask and know how the other is doing.
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Name	Karen Barrett, Barrett Consulting
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Acceptance in social situations
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Name	Karen Gee
Demographic	Family member of an autistic individual
Response	Depression. Anxiety. Loneliness.
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Name	Karen Kaye, Executive Director, Foundation for Autism Support and Training (FAST)
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	The lack of ability to hospitalize someone with autism and psychosis in Maryland. Only 7 beds available and you can't get in unless your in an emergency room, and if they 'Happen to have an opening then" otherwise your only choice is to throw them into the emergency room for 2 to 3 months and wait for an opening, which is a non-starter. So I had to treat him at home on an outpatient basis and I have endured much physical abuse in the process, trying to stabilize him. He is 30.
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response	I work primarily with young children. I see most anxiety and ADHD issues in this population. In my limited experience with older children, I have seen anxiety have a tremendous impact, as well as depression.
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	Not enough therapists who understand neurodiversity/Autism and can provide appropriate therapy like trauma informed care or grief therapy; Not enough psychiatrists and long waits when you have to get a new psychiatrist for med management; not enough training for parents (early on) and school professionals in positive behavior support and how to identify what is a behavioral health issue and what is a lack of communication issue.
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Name	Karen Weigle, National Center for START Services and Chattanooga Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	Our research indicates high levels of anxiety and depression as well as trauma-related disorders, all of which go unrecognized, misunderstood and misdiagnosed (and therefore ineffectually treated), or mistreated, both in regard to medication and outpatient mental health care (counseling, etc). Mental health care for his population is sorely lacking and many providers report "not having expertise" or knowing what is evidence-based and effective for people with autism. Outcomes related to this include: poorer health (often caused my medications and over-medicating), further traumatic experiences, worsening mental health, loss of vocation and income, loss of relationships, and earlier death.
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Name	Karey
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological Demand Avoidance causing anger, stress, anxiety and depression
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Name	Kari Johnson
Demographic	Autistic individual
Response	Autistic burnout, ADHD, anxiety, cptsd (which is not recognized in the united states yet). Also, how ADHD, anxiety, and autism are difficult to manage without exacerbating at least one of the conditions.
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Name	Kari Knutson, PathPoint
Demographic	Service provider, health provider, or educator
Response
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Name	Kari Schaer
Demographic	Family member of an autistic individual
Response	Aggression, meltdowns, depression, anxiety, ADHD
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Name	Karoline Moxham
Demographic	Family member of an autistic individual
Response	Depression, anger management & anxiety are the most significant challenges. My youngest suffers from both depression & anger management; it has been difficult to get the right treatment for him. It’s a never ending struggle.
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Name	Kat
Demographic	Family member of an autistic individual
Response	ADHD in combination with autism is something two of my family members experience. It makes everything more complex to address, and finding ways to compassionately treat both conditions would help them so much.
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Name	Kate D
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression, anxiety, ADHD, memory issues, emotional regulation issues, pathological demand avoidance
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Name	Katelyn
Demographic	Autistic individual
Response	I struggle a lot with depression and it's hard to get out of bed and a lot of times it ends up with me being suicidal because it gets so bad. I have no motivation and I can barely get a shower let alone work a whole day successfully. I also have ADHD and that is a huge struggle as well. I can't concentrate on getting my basic needs done and I can't even focus on my hobbies most of the time. I also struggle a lot with executive dysfunction and it's really tough getting anything done.
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	There are multiple challenges with many of our loved ones on the autism spectrum. Our first hand experience is observing anxiety, attention, deficit hyperactivity disorder, complete with auditory processing issues and impulsivity. Compounding all this is the lack of understanding outside of the school systems to accommodate the safe functioning of these adults.
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Name	Kathleen Walker
Demographic	Autistic individual
Response	I have experienced anxiety since I was a teenager. Recently, I learned that much of my anxiety is related to complex trauma, which stems from my experience growing up autistic and how my family responded to my disability. I think one of the biggest challenges is that many mental health professionals don't understand how autistic people are likely to experience trauma or what therapeutic modalities will be most helpful for autistic people. For example, a few years ago I learned that many autistic adults feel cognitive behavior therapy doesn't "work" for them. Even though I'd interacted with the mental health system since I was a teenager and even studied psychology in college, I'd never heard this perspective before. It would be helpful if therapists could have a deeper knowledge of autism so they could guide patients (even those who are undiagnosed) to the most helpful type of therapy.
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Name	Katie
Demographic	Autistic individual
Response	ADHD: having my ADHD and autism constantly at war with each other. It becomes incapacitating. Anxiety: I am constantly socially worried about being “normal” enough PTSD: I struggle with meltdowns already. PTSD has really harmed my already difficult experience of regulating my emotions and irritability.
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Name	Katie
Demographic	Autistic individual; Family member of an autistic individual
Response	Because symptoms of autism can overlap those with ADHD, OCD, bipolar, CPTSD, and other mental health conditions, it is *very* difficult to get treatment that actually helps. None of my formal diagnoses tell the whole story, and some accepted treatments (like ERP for OCD, or stimulants for ADHD) have actually done more harm than good. I went to psychiatrists for ten years before I got an autism diagnosis, and it was only because I took the test on my own and brought it up with my doctor. Now I have meds and therapies that work for me, but I am still unraveling years of harm.
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response	These can make us more prone to disregarding our needs until we meltdown or burn out. OCD can make it harder for us to form relationships with allistic people who see us as weird because they do not understand our behaviors. It can exacerbate executive dysfunction challenges. We are more likely to require maintenance medications and services as in for ADHD.
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Misdiagnosis of autism as depression or bipolar disorder.
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response	Similarly to the last question, I feel that the hard parts of these conditions are amplified from my autism.
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response	ADHD, anxiety, depression
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Name	Kayn L
Demographic	Autistic individual
Response	ADHD-C: medication makes autistic traits more apparent opposing stimulation, sensory, and energy needs, executive dysfunction and motivation issues Bipolar disorder type 2: co-occuring depression Bulimia: food, texture, and routine issues slowing recovery
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Name	Kd
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	ADHD — rejection sensitive dysphoria OCD Anxiety Depression Suicidality
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Name	Kelley, parent
Demographic	Family member of an autistic individual
Response	1. Focus is in stopping the behavior instead of fixing the problem, or finding an alternative. 2. Society's view that problem behaviors, such as not paying attention, are something the person just has to learn to overcome, or that what works for a NT person (like a day planner), will work for the person with ADHD. When all it does is add another thing to do.
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Name	Kelli
Demographic	Autistic individual
Response	Quality of life is poorer (or not being able to enjoy it fully), job difficulty with certain jobs causing extreme anxiety, difficulty communicating with coworkers and romantic partners, parenting is extra challenging, difficulty with friendships, people not believing or supporting you. Not enough mental health professionals that specialize in ASD. Or can't access the needed services as an adult.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, depression, postpartum depression, PMDD, ADHD (medication helps tremendously), cutting, alcohol use disorder, suicidal ideations
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response	Many of the co-occurring mental health conditions in autistic people cause problems with memory and retention of skills learned; if they're even able to be taught.
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	All of the above and trauma. Psychiatry has become psychopharmacology and the hypersensitive virgin system doesn’t always deal well with the host of drugs prescribed. Psych hospitals add diagnoses - reportedly for insurance purposes - and meds for which other meds must be added to deal with side effects. It’s the old throwing spaghetti and seeing what sticks idea; there seems little clarity on what will be effective for this population. Drug trials are often left to do in the family home.
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response	lack of available services to manage co-occurring mental health conditions and support to families/caregivers we are seeing high number of children, young adults taken to the ED (family feels unsafe or the residential home they are living in feels outbursts cannot be managed). They are then boarded or inapproprately placed on an inpatient unit (not behaviorial health unit) because there is not a safe discharge plan. There are no available beds at appropriate facilities (or facilities saying they are unable to take them because of their autism). We have seen autistic individuals in hospitals for months waiting for appropriate placement.It is horrific situation.
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Name	Kelly Tabeling
Demographic	Family member of an autistic individual
Response	Accessing education in a school environment
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Name	Ken
Demographic	Autistic individual
Response	I suffer from anxiety, depression and suicidality. Each of these is primarily due to society's rejection and bigotry of my social differences from typical. As such, I am fine when alone. I would be fine socially also if my differences were accepted. Society is a very rigid component of the human species. Members of most non-human species accepts me as I am, making me comfortable in their company. Interesting that that never occurs with humans.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance - behavioral expressions of this co-occurring nervous system disability, which is often misidentified as many of the listed mental health conditions, in addition to Oppositional Defiant Disorder and eating disorders, are incredibly destabilizing and disabling. Adaptive measures are also negatively impacted. This is made worse *because* PDA is understudied, and traditional guidance advises using behavioral modification strategies (like ABA or reward-sanction paradigms) that are contraindicated in PDA individuals and worsen the disability/push the autistic individual into trauma.
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	Depression, anxiety, ADHD, and the sub-categories of Autistic expression such as PDA make being a functional human being a challenge on the best of days and impossible on the worst.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	For me and my family, it's running out of mental spoons that creates problems. For us, the anxiety (and some depression) is because it's just plain HARD to get through the day without feeling so depleted. It robs us of the joy of being laid back.
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Name	Kerry
Demographic	Family member of an autistic individual
Response	Anxiety, adhd
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Name	Kerstin Powell
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Many autistic people who have the official diagnoses are not treated for co-morbid mental health issues such as anxiety and OCD, depression and suicidal ideation. There is a tendency to see the autism diagnosis and pin everything happening with the individual on that ONE thing, despite evidence to the contrary. Pathological demand avoidance (PDA) and pediatric acute onset neurophsychiatric syndrome PANS/ PANDAS) are little understood to begin with, even moreso for individuals with autism.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	To me, with my son, the most significant are the self-injurious behaviors and pica. While the others he displays (from my response to the previous question) are serious, these two are the most significant. He is rarely aggressive toward others and does not (currently) demonstrate any suicidal tendencies.
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Name	Kevin Ryle, Association of University Centers on Disabilities and the Autism Society of America
Demographic	Representative of advocacy organization
Response	For decades, mental health needs of individuals diagnosed with Autism have been misdiagnosed, ignored, and misunderstood. About three-quarters of children diagnosed with Autism meet criteria for one mental health condition, while one-half meet criteria for two. Feeling one must blend into a neuro-normative society – called camouflaging, or masking – may create distress that leads to mental health conditions, including suicidality (Cleary, et al., 2023). Females and members of the LGBTQ+ community have reported the distress they experience with masking. Several studies, including Cassidy et al. (2018) have found that Autistic adults are at significantly increased risk of suicidality. Co-occurring mental health conditions can exacerbate challenges for individuals in school, social relationships, independent living, employment, and personal safety. Crisis beds for those experiencing a psychiatric emergency are limited in most areas, and not available in many areas of the country. Emergency room professionals are under-trained in how to identify and support the mental health needs. People with Autism experiencing a mental health crisis deserve a mental health response. Some families must resort to calling law enforcement to help with a crisis. These situations too often lead to unnecessary incarceration, harm, or even death. Community-based programs rely on funding from programs like Title XIX Medicaid Home and Community-Based Waiver programs with limited funding (waiting lists).
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Name	Keyunna Harris, Caregiver
Demographic	Family member of an autistic individual
Response
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Name	Khalila
Demographic	Autistic individual
Response	Trauma caused by lack of childhood treatment or autism-based abuse/neglect.
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Medication side effects and desired effects in individuals with Autism are not the common effects. Person's with Autism are often outliers from what is considered the medical norm. Many of the symptoms of the co-occurring mental health conditions simply result in aggression as a result of the person's inability to communicate. Even in persons with Autism having language skills, it is often not the appropriate language which can be extremely frustrating and also dangerous.
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Name	Kris Guin, Queerability
Demographic	Autistic individual; Representative of advocacy organization
Response	Diabetes treatments often involve taking medications that require certain timing which is challenging for Autistic people who have executive dysfunction. Diet is also a way that diabetes can be managed, but many Autistic people have certain sensory sensitivities to different kinds of foods.
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Name	Kristen Brake
Demographic	Family member of an autistic individual
Response	Attention deficit disorder
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response	Binge-eating, excessive eating
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	OCD
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression and anxiety that could be addressed with proper education for providers AND patients. Psychologists and psychiatrists who are not specialists cause distress in patients with inappropriate care.
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	ADHD, aggressive and self-injurious behaviors, loud outbursts in public, inappropriate sexual behavior (disrobing in public), elopement and complete lack of safety awareness, manic behaviors
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response	Aggressive self injuring behaviour, depression
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	The challenges are many in a population of people who have been understudied and underrecognized are vast. AlDepression, anxiety and panic were co-occuring in my life and largely overshadowed my autistic traits and masking. These impacted my ability to obtain a traditional education, access higher education, or enter into a reasonable career despite being targeted for accelerated and gifted programs. Self injury is also very impactful and often a result of unmet needs of the autistic individual who is misunderstood. It can often be a coping mechanism gone awry while the individual is compensating for an outside source of stress.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA AdHD PTSD Complex PTSD
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Name	Kylie
Demographic	Family member of an autistic individual
Response	Anxiety Aggression
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Name	Kym Pettitt
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety
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Name	L. Void
Demographic	Autistic individual
Response	I have a ‘good’ salaried job, but my mental health is a disaster. Waking up- I'm always filled with dread and never well rested. I’m filled with fear on public transit, battling panic attacks and the urge to cry. My office stress causes severe physical illness, and I'm forced to work through it, fearing job loss. I suffer from PTSD, enduring & hiding my flashbacks throughout the day. Taking FMLA would mean a financial nightmare, and I fear resentment & retaliation for taking time off. At home, I'm crushed by depression, unable to handle basic tasks. This job is killing me, but I can't quit due to the need for health insurance. Alternatives like COBRA or disability are out of reach. The American worker's condition, especially for the disabled, is a cruel joke. I’m can only hope for an early grave.
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	Misdiagnosis
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Name	Laura
Demographic	Autistic individual
Response	The most significant challenge faced by autistic people, in terms of mental health, is trauma -- whether we're calling it PTSD or its diagnostically nascent cousin, C-PTSD. Every autistic people I know experiences small and large injuries from being a mismatch with mainstream society. We know almost nothing about what it is to be autistic without trauma, because trauma is almost bound to happen to autistic people.
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	depression, anxiety, ADHD, aggressive or self-injurious behavior, suicidal ideation
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	Depression, anxiety, executive functioning deficits
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Name	Laura Graham Holmes, Silberman School of Social Work, CUNY Hunter College
Demographic	Service provider, health provider, or educator; Researcher
Response	I would like to highlight a particular condition that has been underaddressed: substance use disorder. Autistic people use substances for some of the same reasons that others do: for social lubrication, to overcome social anxiety, and to cope with physical and emotional pain. There is some evidence that those who use substances may be more likely than non-autistic substance users to develop substance use disorders. In my work with autistic people looking to gain more control over their substance use, I've learned that treatment for substance use disorder is even more difficult to access for people who are autistic, and particularly for those who relay on Medicaid. Substance use disorders are inextricable from issues of physical health, mental health, and everyday functioning and quality of life. We need more research investment to address substance use disorders among autistic adults and to treat them among autistic people who use substances.
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Name	Laura Mansdorf, Mother of an Autistic Child
Demographic	Family member of an autistic individual
Response	My daughter has a limited ability to express herself using speech. She is verbal to an extent, with a handful of functional phrases. But you wouldn't be able to get her to elaborate past "I'm sad" as to whether she is hurt physically, emotionally etc... This inability to quickly express herself leads to frustration, agression and self-injurious behaviors. She has a behavioral team of people in place at home and at school which have written behavior intervention plans to help reduce these behaviors. In addition she is also diagnosed with ADHD as a comorbidity. It makes it difficult for her to attend/focus on tasks she does not find interesting. Often times, people will discount her ability because of the behaviors surrounding her ADHD.
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Name	Laura Mewbourn
Demographic	Autistic individual; Family member of an autistic individual
Response	My most significant mental health challenges stem largely from a lifelong, mostly untreated, anxiety disorder which I believe was born in part from a childhood of unrecognized autism and adhd. As an adult, I realized that all of my thoughts and feelings were not healthy and that there were resources available to get that anxiety under control. Unfortunately, as a low income person, I cannot currently afford my adhd medication or the in-person psychotherapy that I badly need at this moment. As a result, I also grapple with clinical depression and occasional bouts of suicidal ideation. I have struggled to find providers who are knowledgeable about psych med management or have had providers who treat me like a drug offender for wanting my prescriptions refilled. I left one such provider and gave up on treating my adhd after repeated conflicts over prescription refills. I struggle sometimes with daily tasks as simple as phone calls because I absolutely cannot have a verbal conversation in that moment. To explain it to an outsider sounds like whiny blame-shifting, so rather than explaining, I often withdraw into further isolation. In short, I think the biggest challenge are the compounding factors of living life as a neurodiverse adult. One thing piles on another, leading to being virtually incapacitated with no outside support (or inside support, since I'm a single mother).
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Name	Laura Saenz
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety is the direct result of undiagnosed and “pushing through” all our issues. Burn out is waiting for all of us. I’m in year 3 of burnout at 55. The medical gaslighting and medical ignorance is causing us to leave the medical system entirely to self medicate. I bet more than half of homeless are neurodivergent.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	PDA being a nervous system disability means regular activation of the threat response which can result in explosive autonomic flight or fight behaviour beyond his control which impacts his relationships with peers and adults and his own mental health in terms of self loathing and low self esteem.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response	Aggression, and ocd. Impulsivity with adhd is the worst. He can be super aggressive
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety and depression contribute to general difficulties around switching and executive functioning, to the point where basic ADLs can become an ordeal. Anxiety additionally compounds social difficulties that already exist around general communication, reading others’ signals and expressions, initiating and sustaining conversation, and interacting in group settings. Co-occurring OCD has worsened my internal distress over breaking internalized rules and routines. My autistic partner’s mental health is also significantly impacted by PTSD and dissociation, and the intersection between her ASD, PTSD, and OCD has led to significant daily life difficulties.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Alexithymia, social anxiety, depression, adhd
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	Regarding mental health, there is comorbidity between developmental disability and mental illness. In addition, dual diagnosis of DD/MI is difficult to find treatment for, especially in crisis. There is a shortage of specialists, hospital beds, and wait lists. This was well documented in the Family Crisis Handbook which we ask the IACC to look at with their recommendations.
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Trauma, anxiety, co-occurring ADHD, suicidality for untreated trauma and lack of access to accommodation, needs, and understanding by loved ones and community.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response	Anxiety and depression make it incredibly difficult to be social and sociable . These in combination with ASD and ADHD make it incredibly challanging to have relationships with peers and or family
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Depression and Anxiety requiring two medications to treat. ADHD. Skin-picking disorder. Verbal outbursts.
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Name	Leanne Maidment
Demographic	Autistic individual; Family member of an autistic individual
Response	My youngest child is autistic and we believe PDA although they don't diagnose that here. He also has ADHD and poor mental health, which has led to suicidal behaviours. I think ADHD and ASD conflict in so many ways that it can be absolute hell for a person when their own brain contradicts itself on a daily basis.
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Name	Leanne-Claire Civiletti
Demographic	Autistic individual; Other
Response	Not being able to locate appropriate physicians who understand sensory overload and how this can trigger physical symptoms. I can’t afford to pay out of pocket for specialists any longer. I’m on Medicare and SSI. I suffer from anxiety and fear of seeing a new provider to the point of refusing to go to the ER. I have Dysautonomia and when I stand up my heart rate goes sky high, legs swelling and compression to my spine. I cannot verbally answer rapid paced questions over and over and am refused using my communication IPAd. Dismissed with anxiety. Really frustrated when you’re physicans does a EKG and tells you you have a heart attack. Emergency rooms need protocols enforced for people who have hEDS and Autism. I have no support system and my inability to communicate to medical professionals who know very little about the complications and symptoms of hEDS is baffling.
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Name	Lee S.
Demographic	Autistic individual
Response	Speaking only for myself, I would say depression is paramount, along with anxiety and aggressive behaviors brought on by frustration and confusion. It is safe to say that all of the mental health conditions listed above are going to be tremendously significant to a variety of people, some more than others based on their experiences.
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Name	Leeann
Demographic	Autistic individual; Family member of an autistic individual
Response	Autistic Individuals find it difficult to advocate for themselves because of the constant misdiagnosis received by medical professionals. There is just not enough research or trustworthy resources specifically in regards to autistic women so we are misdiagnosed with BPD, bipolar disorder, as well as depression and anxiety. The root cause of those SYMPTOMS are not addressed due to being overlooked and we are often misguided.
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Name	Leigh Powell, NCSA TN Chapter
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	As per previous response, there are no appropriate day/supported living models in ECF to deal with lifelong high acuity behavioral individuals. Current models will provoke extreme stress and sensory overload for my son, severely escalating his behaviors. I cannot send him to camps or day programs for those with disabilities because they cannot manage his behaviors. He is isolated and he wants to be around others. It is also very difficult to find people to come into my home to help with him because they are scared of his behaviors.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	Self injury
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Name	Lesley
Demographic	Family member of an autistic individual
Response	depression, aggressive behavior, suicidal, anxiety. Doesn't fit into this world.
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Name	Leslie
Demographic	Autistic individual
Response	No useful depression treatment. The pills make me sick
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response	His self injury is mist challenging. He bangs his wrists/back of hands in table tops, walks or anything with a sharp corner. He also bites his hands. He has swelling and bruising as well as callouses on hands from biting. We’ve tried so mushy interventions (gloves, wrist bands, competing items to hold etc) and nothing stops this behavior. We fear he will injure the nerves in his hands.
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	General public understanding of meltdown behavior so not to stigmatize both the person with autism and the family/caretakers. Getting to the best medical provider to treat the person on the spectrum, not just throw medications at them. There are very few people who truly understand the medications and how they should or should not be used in people with autism. Having general providers who understand that "typical" treatments often don't work for our family member and have strong connections with specialists and will refer you out to someone who knows better.
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Name	letitia smith
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety ADHD RSD
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Name	Lewese, Child with ASD with PDA profile
Demographic	Family member of an autistic individual
Response	Extreme anxiety with any demand leading to anger frustration and violent outbursts to myself, teachers, students, and damaging property. This reduces dramatically if my son has limited demands.
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response	First of all, as someone with an AuDHD brain, I do not consider ADHD to be a mental health condition. It is a difference in brain structure and behavior - just like autism is. That said, I do suffer from anxiety. Crowds, driving, loud unexpected noise, grocery shopping, etc. all heighten my anxiety.
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Name	Linda
Demographic	Family member of an autistic individual
Response
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Name	Linda , parent of adult with autism
Demographic	Family member of an autistic individual
Response	Anxiety is pervasive in the autism community. Living with someone with autism and anxiety also increased anxiety in parents and siblings. My son has had very serious SIB. The teenage years are SO difficult for many people with autism. The SIB has decreased over the years but still appears during stressful times or when the stomach issues get worse.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	Aggression, self injurious behavior, anxiety
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Name	Linda Jones
Demographic	Family member of an autistic individual
Response
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Name	Linda Kline, DDA SDS Family As Staff Direct Support Staff
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I am lucky, my son has no mental issues, he is only Neurological as that is what Autism is, neurological not mental.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	Communication by behavior when accommodations are not provided. Self injurious behavior requires adequate support to understand and treat issues such as OT/PT and, of course, communication.
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Name	Linda Schepis
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	ADHD, again impacting attention and learning.
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Name	Linda, Parent
Demographic	Family member of an autistic individual
Response	Self injury, irritability and aggression/violence toward others. High anxiety.
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Name	Lisa
Demographic	Autistic individual
Response	I personally deal with anxiety, burnout, ADHD, processing issues, and have dealt with suicidal ideation
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Executive functioning and anxiety are the two biggest issues.
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Name	Lisa Jeanne Geaf, 2023 LEND fellow
Demographic	Autistic individual, Family member of an autistic individual, Researcher, Representative of advocacy organization
Response	Autistic burnout
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Name	Liv
Demographic	Autistic individual; Family member of an autistic individual
Response	not being taken seriously by medical professionals and the cost of healthcare
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Name	Liz
Demographic	Family member of an autistic individual
Response	Anxiety taking medication for epilepsy
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	In our severe/profound autism population, behavioral pathologies are pervasive and can severely compromise well-being, to the point of being fatal. These include aggression, self-injury, property destruction, pica, and elopement. The underlying cause may be anxiety or simple frustration at an inability to communicate. Aside from death, common consequences include bruises, lacerations, scarring, broken bones, ripping out of hair, and skin infections to both the afflicted individuals and their caregivers. Repeated self-injury can cause detached retinas, cauliflower ears, and traumatic brain injury. Pica can cause our individuals to ingest toxic inedible objects. These are more than "challenges," they are lethal or traumatic injuries that often require emergency medical treatments, surgeries and complicated, costly hospital stays. In addition, OCD is often co-occurring and can cause individuals to engage in rituals and routines that are dangerous and engage in dangerous behavior if those routines are interrupted.
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Name	LizC12, Self
Demographic	Autistic individual
Response	I have ADHD, Generalized Anxiety Disorder, and Major Depressive Disorder. I have difficulties staying g on topic when speaking or jumping from topic to topic rapidly, or getting stuck on a particular topic. There are days where I have panic attacks that are hard to get through. The days where the depression hits hard... it hits HARD. Combined, it's as if the whole world is sitting on my chest. I don't want to wake up
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Name	Lori Hogenkamp, Center for Adaptive Stress
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Addressing challenges faced by autistic individuals with co-occurring mental health conditions requires a nuanced, systems-based approach. Key challenges: Complex Neurodevelopmental Interplay: Autistic individuals experience unique interactions between their neurodevelopmental traits and mental, developmental and cognitive health issues, necessitating dynamic understanding and treatment strategies. Individualized Stress Responses: These individuals often have distinct stress response patterns, which are further complicated by mental health conditions like anxiety, depression, or ADHD. Standard treatment approaches may not be effective, highlighting the need for personalized care. Access to Tailored Healthcare: There’s often a lack of healthcare services equipped to address complex needs of autistic individuals with co-occurring conditions. Quality of Life Impact: The combined effects of autism and mental health conditions significantly affect social interactions, education, employment, and daily functioning. Healthcare Navigational Difficulties: Families often struggle to navigate healthcare systems to find comprehensive care. Integrated Care Models Need: There’s a crucial need for integrated care that addresses the interconnected health needs of autistic individuals. Addressing the significant challenges faced by autistic individuals with co-occurring mental health conditions requires a nuanced, systems-based approach.
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	depression, anxiety, self-injurious behavior
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Name	Louis
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	In my personal experience, anxiety especially social anxiety, can be incredibly debilitating in interacting with others. ADHD also makes it difficult with executive dysfunction and added difficulty with social interaction. I have a number of different co-occurring mental conditions, which in of itself presents a lot of challenges as many providers do not know how to help my case, and I've seen the same issue in many of my autistic friends and family. Another major struggle that I see in the community is the prevalence of trauma. The effects of trauma can create a lot of dysfunction and heightened sensitivity to the environment. There are not many good medications for this, so I know many people are left without good treatment. I think another problem that arises with more externally presenting behaviors like self injury and aggression, that this comes with a lot of stigma and lack of education on the sensory conditions that lead into these meltdowns. This can cause interactions with police officers that are incredibly damaging, interactions with peers that are ostracizing, interactions with educators that are punitive. There needs to be better measures and education on this behavior to help destigmatize these conditions.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response	Lack of understanding from healthcare professionals regarding the difficulties in communicating distress. The expectation that people will automatically engage with a neurotypical approach to assessment, No understanding of selective mutism, alexithymia or interoception.
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I am constantly made to second-guess my perceptions and feelings. I have been labeled depressed because of my flat affect and frank way of speaking. When I say people seem to distrust or dislike me upon meeting me, neurotypicals hear negative self-talk. My lived experience is that people think I am weird, I make them uncomfortable. My diagnosis helped to confirm that. The problem was not depression, it was that I was treated differently because I am autistic. The problem was not anxiety, it was that I have sensory issues. Being gaslit or dismissed by authority led to poor mental health and self-doubt. My seizures are primarily triggered by stress, made worse by lack of sleep or food. Unfortunately, the world stresses me out. I am constantly afraid to trigger a seizure. I can’t afford another emergency. I have lost multiple jobs because I couldn’t drive, even working from home. I have worked in disabilities social work, mental healthcare, and behavioral health. Never have my seizures been accommodated. I know better than to report my autism or ask for accommodations. I have always been passively suicidal. I have been told, directly or indirectly, that the world does not care about my needs, and will not accommodate them. Every day is difficult. Every day is exhausting. I want to live in a world with mutual aid, community, support, but that’s not the reality. I am an adult that struggles to keep a job, and for that I will never thrive.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response	For our family self-injurious behaviors and anxiety significantly limit our son's ability to participate in many activities outside of our home.
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	depression anxiety ADHD
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Name	Mabel Thomas
Demographic	Family member of an autistic individual
Response	Anxiety and self injurious behaviors, as well as injurious behaviors towards others
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Name	Maci Barbour
Demographic	Autistic individual
Response	Depression, anxiety, social anxiety
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Name	Madeline Lodge
Demographic	Autistic individual
Response	When combined with autism, any benefits ADHD might have are nullified, and it just makes things worse. Anxiety is also common because of how the autistic mind thinks so quickly and the conditioning and paranoia many undiagnosed and allistic parents impose on their autistic children. Depression and suicidiality in autistic people are NOT caused by the condition itself, but by the fact that it is one of the most oppressed groups in the United States. You see similar results among LGBT individuals.
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Name	Madison
Demographic	Autistic individual
Response	ADHD, major depressive disorder, generalized anxiety disorder, PTSD, OCD, emotional regulation issues which lead to autistic meltdowns, self harm issues, panic disorder, suicidality, self-harm, monthly meltdowns due to PMDD
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Name	Maegan Hayes, Social Science Specialist
Demographic	Autistic individual; Family member of an autistic individual
Response	I believe the lack of representation when needed for advocacy. Yes the union is available, but a committee to support other neurodivergent individuals would be awesome. As often times, without this representation or knowledge of how to engage, individuals can leave feeling dismissed and misunderstood. Having a person with lived experiences would help create a safe place for individuals to feel included and heard.
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Name	Maeve Sherry, Pan-End-It!
Demographic	Autistic individual
Response	self-injurious behavior
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Name	mags, diagnosed autistic
Demographic	Autistic individual
Response	Medication resistance has led me to have Medication resistant depression. BH4 controls (among other things) for the porosity of the Blood Brain Barrier and many autistics have a BH4 deficiency I'm also disabled to the point I can't work and I'm on Medicaid and state insurance. There are treatments for depression that have shown to be effective in treating treatment resistant depression (ketamine therapy, transcranial magnetic stimulation to name a few) but my insurance won't cover them. They come out to thousands if not tens of thousands of dollars. Also included are a myriad of other health issues along the B4 pathway. I would refer you to the work of Kimberly Kitzerow's "Map of the Biochemical Biomechanics Behind Invisible Illnesses"
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Name	Maija Vance
Demographic	Family member of an autistic individual
Response	PDA causes my son to feel different from his peers. He wishes he was able to attend school with his friends. He experiences anxiety and also ADHD. He has low self-esteem.
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Name	Mara LaViola
Demographic	Family member of an autistic individual
Response	The utter failure of our mental health professionals to know how to effectively address autism and the lack of appropriately trained mental health professionals and supports for these individuals and their families. Also, these often result from the failure of our educational system to appropriately address social, emotional, and communication needs.
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Each individual with autism presents differently. Even so, there are people who are diagnosed with bipolar who also experience depression & anxiety. There are high levels of people with ADHD. Again, my daughter is diagnosed with bipolar disorder, adhd, and has been treated for depression.
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Name	Maresa
Demographic	Family member of an autistic individual
Response	ADHD and anxiety
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	Education system not equipped to handle growing numbers of kids with autism, ADHD, and other special needs. Also housing for once they become adults.
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	1. Social Anxiety 2. Anxiety 3. Depression 4. Learning Disabilities 5. ADHD
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Name	Maria Maiorano
Demographic	Service provider, health provider, or educator
Response	In my experience as a classroom teacher, the most significant challenges caused by co-occurring mental health conditions in people who are autistic vary widely and are extremely individualized. All of which have had a critical impact on their cognitive, academic , physical, and behavioral needs. The most significant challenges within the classroom, I would say, is aggressive and/or self injurious behaviors because it makes it difficult for staff to help build critical life skills. This also makes recruiting staff that want to help children with this level of need a real challenge. Aggressive behavior makes teaching a simple basic need such as toiling challenging. On the other hand, it also is a challenge to teach children who are cognitively capable how to read .
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response	Related to my previous answer, these co-occurring mental health conditions seem inextricably linked to autism. Depression, anxiety, ADHD, aggression, and self-harm appear to spring from the hostile world ASD individuals are expected to navigate. This heightened nervous system engagement should be the focus of new research, looking to the work of Elizabeth Newson and others in the UK who have identified this presentation.
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Name	Mark Byam
Demographic	Other
Response	Severe Mood Swings, Learning challenges, attention-deficit, aggressive conversation, depression, difficult to keep relationships
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Name	Marnie Morneault, University of Maine Center for Community Inclusion and Disability Studies
Demographic	Service provider, health provider, or educator
Response	Lack of professionals to pull apart what is happening, for each person, as an individual.
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Name	Martha Gabler, Mother and Legal Guardian of nonverbal adult son with severe autism
Demographic	Family member of an autistic individual
Response	Our son has had life-long problems with Self-Injurious Behavior (SIB). The most significant challenges of mental health conditions in autistic people are that they have no access to quality medical or behavioral treatment (ABA: Applied Behavior Analysis) to determine the function of Self-Injurious Behavior (SIB), and thus there is no way set up an appropriate and comprehensive care plan to assist the person. Please see this article by the renowned Dr. Brian Iwata: Iwata, Brian A., Dorsey, Michael F., Suifer, Keith J., Bauman, Kenneth E., and Richman, Gina S., “Toward a Functional Analysis of Self-injury.” Journal of Applied Behavior Analysis, 1994, 27, 197-209. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297798/. Accessed January 10, 2024. The Abstract of this article states, “… higher levels of self-injury were consistently associated with a specific stimulus condition, suggesting that within-subject variability was a function of distinct features of the social and/or physical environment. These data are discussed in light of previously suggested hypotheses for the motivation of self-injury, with particular emphasis on their implications for the selection of suitable treatments.”
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Name	Mary
Demographic	Family member of an autistic individual
Response
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Name	Mary Jane Reis, Parent
Demographic	Family member of an autistic individual
Response	OCD, anxiety. People think autism is hard, but autism combined with OCD is a nightmare. People with autism need better interventions, both behavioral and pharmaceutical. OCD can unravel years of good therapy, leading to a cascade of developmental losses - in terms of social skills, intellectual growth, and adaptive living skill development.
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	Especially in the transitional age youth population there is very little planning for going from entitlement (school systems) to need base systems (HCBS etc). They often will fall through the cracks and mental health conditions are exacerbated or worse, the individual will self medicate with drugs/alcohol. Because the ASD isn't always readily evident, they often fall into the Criminal Justice system instead of an actual service system that can help facilitate work, skill development, meaningful engagement and agency over life choices etc.
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Name	Matthew Janicki, National Task Group on Intellectual Disabilities and Dementia Practices
Demographic	Representative of advocacy organization
Response
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Name	Matthew LeFluer , Vermont Legends of Cities And Towns
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Everything including individuals of color knowing every condition exists within individuals with autism
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Name	Mattie Wentz
Demographic	Autistic individual
Response	i have both adhd and autism and i think there should be more research around their similarities and differences
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Name	May
Demographic	Family member of an autistic individual
Response	depression, behavior issues and hyperactive
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	As a person with ADHD-Combined, persistent depression and generalized anxiety disorder in addition to ASD - I find the largest challenge is the lack of research and studies that center on Black women or Women of Color. Many socialized females, like myself, present with Autism or AuDHD differently and are often dismissed with a sort of "hysteria" or generalized anxiety making it more difficult for people to be taken seriously and diagnosed. With Co-occurring Mental Health conditions I am unable to meet the demands of the regular 40-hour work week and stay gainfully employed. I have been underemployed due to my health challenges my entire life - and almost always too employed to access benefits.
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	This is a primary area of concern. I have worked with Autistic people for 3 decades and there is sooo much confusion about given Mental Health diagnoses, e.g., anxiety, psychotic dis., etc. when some of the symptomology echoes Autism. There needs to be more research in this area. There is so much variation as some people get a MH diagnoses for exhibiting the same symptoms as someone who's medical professionals relate, say an personality disorder related to an inability to display empathy, as 'just autism'. The professionals are not equitably trained. Also, where are all of the Psychiatrists who are IDD trained/educated? Autistic people don't have many options.
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Name	Megan
Demographic	Family member of an autistic individual
Response	Anxiety, ADHD, PDA,
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Name	Megan Arbour, PhD, CNM, CNE, Frontier Nursing University (and a mom)
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety, ADHD, highly reactive behavior to sensory stimulation or perceived loss of autonomy as in Pathological demand avoidance
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	Based on my personal experience as well as the research I've done, a disproportionate number of autistic people suffer from Post Traumatic Stress Disorder, due to the multiple forms of abuse they suffer from institutions and individuals over the course of their lives. Physicians and psychiatrists are insufficiently skilled at distinguishing the symptoms of PTSD from the characteristics of autism, so the condition often goes untreated, with disastrous effects on people's lives. It is already well known that depression, anxiety, and suicidality are major problems for autistics, but in my view insufficient attention has been paid to the cause of these problems--are they inherent in autism or can they be attributed to our society's treatment of autistics? Regardless, people are dying.
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	Access to care. This year I spent months trying to get my son a therapist, and would be turned away because he is autistic. I had to stop telling therapists he was autistic to find one to take him on. Therapists should not be able to discriminate against autistic people. It should be protected that you get access to therapy if you are autistic.
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Name	Megan Tomhave, PA-C
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Depression happens naturally as an undiagnosed autistic woman as everyone around you assumes you to be a bad person or a narcissist and you internalize this instead of recognizing that you simply have a different brain and communication pattern. You develop anxiety because people assume things off of your non-verbal communication that you had no idea you were communicating. People get offended easily but will not tell you directly and instead act passive aggressive toward you or bully you. ADHD is very co-morbid - I have both and find it to be a good combination as my autism keeps me motivated and my ADHD allows me to be fun, but ADHD is also the reason I turned to drugs and sex as a means for connection when I couldn't understand how to connect with others otherwise. I have been suicidal at times due to lack of friends and community. I have been abandoned and isolated by many allistic people for my autistic traits.
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Name	Meilin Zarnitsyna, Chicago Counseling Associates
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance (PDA) profile ADHD OCD Self-injurious behavior, suicidality Depression and anxiety Autistic burnout
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Name	Mel Houser, M.D., All Brains Belong VT
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	As an Autistic physician caring for Autistic patients throughout the lifespan, I encourage re-consideration of the distinction between “physical” vs. “mental health.” In my professional experience, Autistic patients often accumulate a range of mental health diagnoses without professionals considering that the nervous system goes throughout the whole body. For example, what dysregulates the nervous system can directly impact the immune system, and vice versa. Zooming out, I believe that fragmenting physical vs. mental health sets us up to miss the big picture where everything is connected to everything.
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response	I believe the most significant challenges would be community-related, societal, and learning difficulties. I had to switch my sons school 5 within 3 months of starting kindergarten because he had so many challenges adapting, sitting still, and was unable to learn even in classrooms that were special education oriented. We moved across town literally so that he could attend a school that would work for him. I think these co-occurring mental health conditions impact them in such a huge way that it makes life even more difficult for them than it already is.
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The world is always correcting and fixing his behavior which leads to greater depression and hopelessness. my son has add,depression and anxiety. The constant corrections by the "world" have caused manic depressive episodes. Hopelessness.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	I find it hard to leave my house because of anxiety. My baseline every day is that I don’t want to be here and I have to consciously talk myself into keeping myself going. I have serious executive functioning issues because of the CPTSD . I struggle so hard everyday to just exist.
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response	behavioral issues: adhd, inappropriate behavior in the community.
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Name	Melissa McKenzie
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The most significant challenges connect with activities of daily living - work, education, friendships, romantic relationships. Difficulty or inability to engage with others can make mental health challenges even more severe.
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Name	Melissa Sanchez
Demographic	Family member of an autistic individual; Other
Response	Anxiety and depression. I have been diagnosed with ADHD, anxiety, and depression. I’m fairly certain I actually have ADHD and Autism and experience anxiety and depression because of lack of accommodations and treatment. But my insurance says because I’m an adult, they will not screen me for autism.
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Name	MG Chappell
Demographic	Autistic individual; Family member of an autistic individual
Response	Myself, as well as my children, have ADHD. I also have anxiety, PTSD and struggle with wanting to throw fits when I feel so overwhelmed with frustrations or emotions I cannot process.
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Name	Mia
Demographic	Autistic individual
Response	I have PTSD from multiple sexual assaults. I believe me being at the hands of so much abuse is directly correlated with my autism and my inability to discern when someone has bad intentions. I struggle with addiction as do many of my autistic friends. I feel like I need substances to socialize/exist without feeling such intense anxiety. I have ADHD which makes life feel like a nonsensical dichotomy, I feel at war with myself a lot of the time. ADHD craves novelty and autism craves predictability and structure. I have never been able to create the structure I crave for myself. I feel depressed and hopeless for more days than not. I've been suicidal most of my life and it is exhausting trying to keep those thoughts at bay. (MDD) I had excoriation disorder in adolescence and still struggle. I have an eating disorder from me constantly procrastinating eating, as accommodating my palate feels impossible at times. (EDNOS) I have a disorganized attachment style, constantly craving yet pushing away intimacy. I have been severely anxious for as long as I can remember. My anxiety causes a lot of avoidance. Lately my high anxiety has made it hard for me to clearly/articulately verbalize my thoughts. (GAD) I headbang during meltdowns in attempts to get myself back into my body. I used to cut myself during adolescence in an attempt to make my struggles more visible and tangible.
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Name	Michael
Demographic	Autistic individual
Response	The main challenges involve maintaining employment while desperately managing your symptoms. The hostility and aggressive rejection of allistic coworkers has grown increasingly intense as everyone struggles to make a living...more of us lose jobs and become unemployed.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	Anxiety, ADHD
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Name	Michael Raney
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety and depression, particularly with regards to what is known as the Pathological Demand Avoidance profile in the UK.
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Name	Michael Rathbun
Demographic	Autistic individual
Response	For me: Major Depressive Disorder, clinically diagnosed in 1987, likely due to executive dysfunction, with frequent suicidal ideation since age 7. Social disconnection as a result of inability to properly interpret communications, especially nonverbal.
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Name	Michaela
Demographic	Autistic individual
Response	I've also been diagnosed with general depression and anxiety disorders as well as ADHD. Self-injurious behavior and suicidal ideations were more of a problem when i was younger (pre-diagnosis) but they were definitely a problem. These cause more significant roadblocks in my life as I'm constantly having to battle them just to get through the day-to-day.
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Name	Michelangelo molina
Demographic	Autistic individual
Response	The interplay between autism and co-occurring mental health conditions introduces intricate challenges. Depression may intensify social withdrawal, anxiety can heighten sensory sensitivities, ADHD may exacerbate attentional difficulties, aggressive behavior poses safety concerns, and suicidality demands urgent intervention. Recognizing the unique experiences of each individual is crucial in navigating these complexities. Tailoring interventions to their specific needs ensures a more effective and empathetic approach, aiming for holistic well-being.
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Name	Michele Brady
Demographic	Family member of an autistic individual
Response	It is difficult to find neurologists, psychologists, and psychiatrists that are knowledgeable about treating mental health issues in the autistic population. And insurance does not cover these services.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Anxiety Disorders, ADHD, Aggression, Self-injury, Depression, PDA (Pathological Demand Avoidance), PTSD
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	Crying, depression, aggressions towards others and self, adhd, vocal stimming
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Name	Michelle Grochocinski
Demographic	Other
Response
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Name	Michelle Harris
Demographic	Family member of an autistic individual
Response	Cognitive impairment, anxiety and OCD.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Depression & anxiety are constants because society sees many autistic characteristics as laziness or stupidity instead of a legitimate disability. The depression and anxiety conditions developed due to these societal factors along with the possibility of depression and anxiety from additional factors catapults many autistic individuals into self-injury and suicidality. These challenges are significant because they don't arise in a vacuum. Autistic people are constantly having to adapt and readapt to societal norms while trying to meet the needs of their disability that directly contrast those norms.
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Name	Michelle Linn, Parent, Provider
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Aggression and self-injurious behavior have been my son's (and our family's) most significant challenges. Had we not had our own, substantial financial resources, our son would be homebound and we would all have a horrible quality of life. Many families are suffering with the debilitating and isolating behaviors associated with autism. More must be done to support families, find the cause, and develop actual treatments and prevention based on causality. The current trial and error use of psych meds and intensive behavioral intervention (when it's even available) is insufficient.
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Our healthcare and mental health system are short staffed and lack specialists to address scaffolded issues such as anxiety, OCD, ADHD, depression and autism. We don’t look at the big picture and write off behaviors as autism. A family in Michigan called their psychiatrist after hours emergency on call line and it took 5 days to get a call back.
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Name	Michelle Skigen, M. A.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	PTSD, depression/anxiety
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	All the above mentioned
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The significant challenges is how these conditions further disable autistic individuals yet they are caused by ablesim, sexism, racism, disability discrimination, and neurotypical spaces that are harmful. We are blaming the individual but doing nothing to fix the system
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Name	Mikol Bailey
Demographic	Autistic individual
Response	Anxiety and depression (from living in a world not built for us), executive dysfunction, ADHD.
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	Mental health conditions are oftentimes simply autism trait presentations being mislabeled by the neurotypical community.The lack of accomodations & understanding lead to much of this being labeled as self-harming/emotional disturbances when stimming behaviors are done as a coping mechanism & could be rectified with slight accommodations & aba therapy to help find better coping skills/techniques. We need specialists who understand this & can help from an autism standpoint not neurotypical as this is hurting us! Aggression can come from high doses of medications which could be avoided if a person had been equipped with coping skills & treated humanely in the first place. NOT providing these things is leading to the problems you list above. Depression happens when people are mistreated- & society mistreats autistics for kicks & this is condoned by even policymakers which is wrong. or rather especially policymakers.
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Name	Mina
Demographic	Autistic individual
Response	I think the prevalence of trauma in autistic people should be studied to better understand how we may need different care. Difficulties with communication and connection can make getting help difficult. Modalities like CBT, a common starting point in therapy, is not as effective for autistic patients. Trauma is also a near universal experience for autistic people, who often face discrimination, abuse, and bullying from peers, families, and authorities. I also think that trauma can contribute to the high rates of depression and anxiety in the autistic population, which is often treatment-resistant because the root trauma is not addressed. Additionally, Complex PTSD is an important lens for many autistic people, as it is often caused by long-term neglect or abuse that is more subtle. Models for diagnosing and treating PTSD should be expanded to account for complex trauma, which sometimes appears atypically. I also think that the overlap between autism and ADHD deserves more attention. The dual diagnosis has not existed for long, but estimates suggest that a large percentage of the autistic and ADHD populations have both conditions. Despite this, there are few resources addressing the nuances of this overlap and how it may present differently.
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Name	Minela Fernandez MD
Demographic	Service provider, health provider, or educator
Response	All of those listed. Anxiety about new foods. Aggressive when being asked to eat.
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Name	Missy Garcia
Demographic	Autistic individual; Family member of an autistic individual
Response	This is where the most challenges exist, in number, magnitude, and importance. I believe those challenges mostly arise from lack of information and research. We are left to do our own research, and when we can’t find what we need, it starts to affect our mental health in a new way, on top of the struggles we’re already having. The most under examined co-morbidity is ASD & trauma. And I think it may be the co-morbid condition with the highest overlapping traits. Again, diagnosis is at the root of the problems.
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Name	Misty Cameron
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression and anxiety are often the result of untreated ADHD, yet women who have co-occurring Autism and ADHD often have to fight for diagnosis and treatment bc our providers yet again do not recognize that our depression and anxiety are secondary to our Autism and ADHD. Providers need to be better educated and should be forced to specialize if they want to treat these issues - way too many providers are far behind on the research and have no idea what they’re looking at or talking about; they then tell us we’re “just depressed” or “it’s just anxiety” when it’s not. Once I was properly diagnosed and medicated for my ADHD, my depression and anxiety significantly improved, and I no longer meet diagnostic criteria for either.
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Name	Molly
Demographic	Family member of an autistic individual
Response	My son who is autistic with a PDA profile (pathological demand avoidance) exhibits many very challenging behaviors for school and caregivers. He has severe anxiety and depression and ADHD and makes suicidal comments. I believe the majority of his mental health struggles are rooted in navigating a world that does not understand his needs are vastly different from his peers.
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	ADHD, anxiety, aggression have greatly affected our family. Aggression has been particularly difficult to manage. We believe it is related to sensory issues, ADHD/impulsivity, and constant activation of our son's sympathetic nervous system due to sensory and anxiety. Our son's aggression towards both objects and people has made it difficult for us as parents to keep our house in the order we would like, fulfill responsibilities at full time jobs (due to exhaustion, school removals, etc), and participate in community activities as a family.
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Name	Monica Allen
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All of the examples that are listed for co-occurring mental health conditions need as much attention and support as co-occurring physical health conditions - depression, anxiety, ADHD, aggressive or self-injurious behavior, suicidality. I think there needs to be more education about these conditions available to the public and health care providers. The mental health field is grossly underfunded and understaffed. The mental health field needs to do better with trauma-informed care and culturally-relevant care for people of color, immigrants, and others who are marginalized by white supremacy. There must be more training about all of these possible comorbidities that Autistic people experience so health care providers will not miss connections or additional diagnoses. All providers and settings must have better tools and understanding for working with Autistic people (attention to sensory factors in a clinic, understanding possible differences in pain tolerance, longer appointment times to allow for better communication, trauma-informed de-escalation strategies, and more).
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Name	Moriah Adamick, parent of Autistic child
Demographic	Family member of an autistic individual
Response	We are observing anxiety and ADHD-like behaviors in our son who has the PDA profile of autism. He has at times exhibited aggression or mild self-injurious behavior, but he is still very young (4 years old). For us, the biggest challenges are access to basic needs like toiletting, hygiene, safety and sleep.
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	anxiety, depression, eating disorders, ADHD, self-injurious behavior, suicidality
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Name	Myles Davis
Demographic	Autistic individual
Response	high suicidality rates, lack of focus and joy out of life because of anxiety and depression, and difficulty trusting due to trauma and rejection-sensitive dysphoria
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	(This is another case where it can be impossible to separate autism from co-occuring conditions. The question assumes that autism is a "condition" whereas many autistic people feel that it is inseparable from their entire existence.) I went undiagnosed until adulthood because doctors always assumed my sensory and emotional regulation struggles were "just" depression and anxiety. Misdiagnosis is a huge issue. I have been told I can't be autistic because I am also ADHD, which is not accurate at all. Many autistic people experience anxiety and depression because their sensory needs are not accommodated. If you go an extended period in constant sensory overwhelm, you are inevitably going to go into burnout, which can cause extreme depression and suicidal symptoms, or meltdowns that can resemble panic attacks. The biggest problem with this is that traditional recommendations for these conditions DO NOT WORK for autistic people. When I am in burnout and feeling depressed, trying to socialize or get exercise will send me into deeper burnout and could lead to suicidal ideation.
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Name	N/A
Demographic	Autistic individual
Response	I feel as if I’ve learned to cope better with anxiety and I’ve come along way but it is still a struggle, adhd hasn’t necessarily been a con for me but it is quite strange to see how other neurotypical people think or do things compared to how my mind works. Another struggle is being diagnosed, I am self diagnosed it is very far and few that a woman gets diagnosed with autism and I think that needs to change, I was diagnosed with bipolar in remission, ocd, adhd, and depression although I’m hardly ever depressed but I soon learned those could all just be symptoms of autism. I feel like I was wrongly diagnosed just like lots of other people are everyday that autism isn’t studied better.
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Name	Nancy
Demographic	Family member of an autistic individual
Response	Anxiety takes medication for it Behaviors takes medication for it Seizures takes medication for it
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	Most staff in the blindness system are unprepared to deal with some of the co-occurring conditions and behaviors so people who are blind and autistic are not enrolled in services or do not have the proper supports to gain the most from training. There is not enough access to counselors and/or applied behavioral analysts for school aged children and youth and esepcially young adults that have have aged out at 21 years.
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Name	Nancy Hauprich
Demographic	Family member of an autistic individual
Response	Difficulty finding appropriate placement/facilities to bring individuals with autism during a crisis. Emergency rooms are not equipped to handle individuals with autism when they are exhibiting aggressive and self injurious behaviors.
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Name	Nancy Williams
Demographic	Family member of an autistic individual
Response	ADHD, Anxiety and constant hypervigilance in unfamiliar settings. Also perhaps more likely to become addicted to an activity or substance due to being hyper focused on it.
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response	For us anxiety has been the most challenging. Depression has also been difficult, but anxiety affects being in public and can cause meltdowns and/or shutdowns. Aggression diminished once able to free-run with sleep and was no longer chronically sleep-deprived.
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD being called a mental health problem feels wrong. That makes it sound like an emotional disturbance and not a neural disorder. But yes, ADHD is perhaps even more difficult because there is no real relief from it, whereas with autism you can potentially find comfortable balance a lot of the time. Girls and women need more ADHD screening. Also, anxiety.
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Name	Natalie
Demographic	Autistic individual
Response	As a child going undiagnosed, I was addicted to self harm to release the negative feelings I had in my body. I was suppressing meltdowns in that way and now have to fight the urges forever. I think the lack of care and understanding that comes with not receiving a diagnosis could have caused or at least intensified my depression and anxiety throughout my life.
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Name	Natalie , Woman
Demographic	Other
Response	Anxiety, A.D.H.D, Depression,Suicidality, aggression, learning disabilities, manic episodes
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Name	Natalie Mason
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Eating disorders. My youngest child developed ARFID and a fear of food and had to be fed via nasogastric tube. There is such little information out there on ARFID and how best to manage it. The connection to anorexia is also needing more research, as is the role of faulty interoception in the development of obesity.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Depression, anxiety, self harm, suicidal ideation
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Name	Nathan Blenkush, The Judge Rotenberg Educational Center
Demographic	Service provider, health provider, or educator; Researcher
Response	Treatment refractory self-injury and aggression are often exhibited by patients with autism spectrum disorder and intellectual disability and present significant challenges. Treatment refractory means the violent behaviors continue despite reliable implementation of standard psychopharmacological and behavioral interventions. The behaviors persist for years, decades, or even throughout the lifespan of the afflicted patient. Such behaviors are devastating and adversely affect co-occurring physical health conditions (e.g. by creating extreme difficulties in accessing outpatient care or by interfering with diagnostic/treatment procedures); result in physical health impairment (e.g. blindness, traumatic brain injury, chronic wounds, fractures, loss of body parts); result in or exacerbate symptoms such as anxiety, depression, and other psychological symptoms (i.e. because of physical isolation and family separation); and interfere with skill acquisition (which affects communication, education, vocational achievement, and independent living). We recommend research efforts focus on defining and classifying severe aggression and self-injury in this patient population. There is presently no agreed upon criteria for what constitutes treatment refractory aggression or self-injury. Such definitions also assist in weighing the risks of inaction versus the risks and benefits of existing therapies.
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Name	National Council for Mental Wellbeing
Demographic	Representative of advocacy organization
Response	Individuals with autism commonly experience co-occurring mental health conditions.1 While identifying the exact prevalence of individuals with autism and comorbid mental health conditions can prove to be difficult, studies corroborate that children and youth with autism often experience higher rates of mental health conditions, such as depression and anxiety, as compared to the general population.2 Measures of suicidality in people with autism have been found to be variable, though studies have suggested that adults with autism experience suicidal ideation at a much higher rate compared to the general population.3 Contributing to the difficulty in identifying the exact rate of co-occurring mental health conditions is the lack of access to appropriate and validated screening tools for individuals in this population, as well as the potential for overlapping characteristics that exist between autism and some mental health conditions. 1.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6669096/ 2.https://www.sciencedirect.com/science/article/abs/pii/S175094672300034X https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162511/#B13-children-05-00112 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5772195/ https://jamanetwork.com/journals/jamapediatrics/fullarticle/2755414 3.https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00544-7#:~:text=An%20influential%20study%20of%20late,a%20suicide%20attempt%20%5B10%5D.
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Name	Nele Van hemelen
Demographic	Family member of an autistic individual
Response	ADHD PDA (so anxiety is a big thing Here, and when needs are not met: agression, depression and autistic burn-out)
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Name	Nellie
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	Aggression Self injury Alienation from community Anxiety and depression All of these will coexist and build up a wall between the person, the family unit, their community, and services available. The asd individual loses services and connections, while the family loses community resources. The system becomes smaller and smaller...
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	Fear of medical gaslighting, being told I'm sensitive then experiencing minimization of symptoms, misdiagnosis of bipolar, sensitivities & expressing adverse reactions to anti depressants then being medicated with them anyway, complex ptsd, non selective mutism, agoraphobia.
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Name	Nicholya Crockett
Demographic	Family member of an autistic individual
Response	My son has Autism with Pathological Demand Avoidance and ADHD. I do feel like a lot of times these all go hand in hand and what we use to treat or address one of them is counter indicated for the other, all the way around. For instance, what works for ADHD individuals might set my PDA son into a pattern of burnout, or cause him to have a nervous system reaction such as flight, fight or freeze.
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Name	Nick McCurdy, Patient/Advocate
Demographic	Autistic individual; Family member of an autistic individual; Researcher; Other
Response	Dealing with mood swings and balancing conflicting cognitive symptoms of autism and ADHD
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	Depression, ADHD, oppositional behaviors
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Name	Nicole Corrado
Demographic	Autistic individual
Response	ADHD is not a mental health condition. It is a neurodivergent difference. I am AuDHD so I get hyper and distracted easily. I find this can be a problem with executive functioning, but the AuDHD made me tired of living with my parents and got me to move out. OCD, suicidality, self injury, etc were more problems when I was living with my parents. I have more of a sense of control now living by myself. I still have a compulsion to check negative things about animal rights and that can derail me for hours.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety, ADHD, suicide. Pathological Demand Avoidance (PDA) is characterized by high anxiety but this is not the only feature—we desperately need better understanding of PDA and how to support PDAers in the United States.
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	POOR SLEEP CHRONIC FATIQUE BURNOUT, LOW STAMINA, LOW MUSCLE TONE MOTION SICKNESS LEAKY GUT GUT IMBALANCES CAUSING SEVERE COVID, COMPLICATIONS LACK OF ROBUST TRAUMA TREATMENT
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Name	Noemi Spinazzi, MD, FAAP, Down Syndrome Medical Interest Group (DSMIG), DS-ASD workgroup
Demographic	Researcher
Response
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Name	Olive
Demographic	Autistic individual
Response	I would say emotional disregulation is a big one. I have many autistic friends who talk about how this is one of the biggest things they struggle with, and I do as well, it probably impacts me the most in my day to day life
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Name	Olivia
Demographic	Family member of an autistic individual
Response	Anxiety
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response	It is very difficult to get crisis support and educational support for kids with mental health needs co-occurring with autism. Kids with this profile board in emergency departments and bounce from school placement to school placement. We need professionals to be able to accurately differentiate autism traits from mental health needs, and we need more effective interventions to be able to teach kids, not just relying on ABA to mask needs.
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response	These challenges often create social isolation for the person with autism and their family.
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Parent
Demographic	Family member of an autistic individual
Response	Anxiety, self-injurious behavior, ADHD, aggression, Dentophobia
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	First, as with health conditions, the autistic individual often cannot explain what he/she is experiencing. So, we may not know what to treat. When we can tell, eg my daughter is very anxious and has been diagnosed with anxiety and OCD as well as pica, it is pretty much impossible to attempt verbal behavior therapies as these are just not effective or understood by the individual. So, treatment is most often through medication, many of which have their own side effects/complications. For example, my daughter's constipation is much worse since being on meds for anxiety and OCD. She also now wets herself during the day (and always at night).
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Name	Parent
Demographic	Family member of an autistic individual
Response	Bipolar disorder is likely but not yet confirmed. Son has been on an antipsychotic for 4 years now.
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Name	Parent of Young Adult with Autism
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Our son also has had severe and debilitating anxiety throughout his life, now manifesting as OCD. He also has both forms of ADHD. It's a spider web in which all the strings are interwoven together; you can't pull out or try to affect one string without affecting all the others. Any approach trying to isolate any of these factor and ignoring the "interconnectedness" of him as a person with particular wiring will not bring positive change. We do know other young adults who have some of these co-existing challenges but not others. Treatment and resources must account for the whole person.
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Name	Patricia Quinn, Mental Health Asso of O.C. and Dept of Mental Health of O.C.
Demographic	Service provider, health provider, or educator
Response	In my work I am surprised that PTSD symptoms are not explored. This population and IDD people are susceptible to sexual trauma as well as emotional dysregulation, and all of those diagnoses due to sensory reactivity, difficulty with transitions, and ineffective parenting. Attention to this side of the person with better assessments and more consistent training is needed. In addition there is uneveness, even among certifying professionals of what constitutes autism. There are some psychiatrists with post doctoral training that disqualify highly intelligent people from an ASD diagnosis, primarily for that reason.
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response	Many treatments for mental health conditions to include verbal and medicinal therapy, needs to be adapted to the autistic individual. Understanding how their thought processes and triggers affect their behaviors, can lead to more successful treatment. In my experience, when the anxiety/aggressive behaviors are adrenaline fulled and impulse controlled, the considerations of the personality, past traumas, and the environment are paramount for a successful descalation of the event and behaviors. The autistic mind does not respond typically, so many considerations and knowledge of the individual is required by the staff and services they receive.
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Name	Patricia Wright, Proof Positive
Demographic	Representative of advocacy organization
Response	Proof Positive: Autism Wellbeing Alliance is grateful for the work of IACC, as demonstrated in The Summary of Advances of the Interagency Autism Coordinating Committee. Still, there is much more to do as these issues and others remain: -Families and caregivers report tremendous stress and lack of access to services and supports -Community service providers struggle to attract and retain talent Higher prevalence of mental health disorders and difficulty accessing mental health support
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Name	Patricia, Student
Demographic	Autistic individual; Family member of an autistic individual
Response	As an autistic individual, I have struggled with depression and suicidal ideation from the beginning of adolescence, 10 years old, and still continue to struggle with my mental health. I was diagnosed with persistent depressive disorder at 11 after attempting to take my life at 10, and was diagnosed with autism at 14. I believe that my depression is a result of being an autistic person in a world that is made for non-autistic people, and is hostile towards those with perceived differences.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	The most significant challenges that are caused by co-occurring mental health conditions in autistic individuals are anxiety, aggressive behavior, and depression. I do admit that I sometimes struggle with these circumstances.
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Name	Payton
Demographic	Autistic individual
Response	Autistic people can definitely experience an influx of depression, anxiety, and other issues relating to these disorders. Autism carries a lot of overlapping symptoms with ADHD so they share similar traits and both can lose their train of thought easily and forget things that were important. The depression and anxiety is not directly linked to autism but more likely linked to the environment around the autistic person experiencing them. "Masking" is something that a lot of autistic people do (ie behaving and acting the same way neurotypical people do, often at the expense of their mental and physical energy) and that fear of being rejected (rejection sensitivity is also heightened among autistic people) drives an anxious need to be seen as the same. Autistic people are often bullied for being different, for seeming "off" in comparison to their other peers without knowing the difference. This leads to depression, in extreme cases suicidal ideations and actions, violence is rare but possible as well. These need to be addressed not only within the autistic community but also within the allistic community that it goes beyond just educating the public.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response	autistic burnout (especially for high-masking individuals), ADHD, sustained/complex trauma from sensory issues, bullying, etc., passive suicidal ideation
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Name	Person with Autism
Demographic	Autistic individual
Response	Depression, Anxiety and ADHD
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	Anxiety leads to demand avoidance, difficulty with social relationships, aggression, depression etc. It is a downward spiral toward self injury and suicidality.
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Name	peter mazure, parent
Demographic	Family member of an autistic individual
Response	Anxiety is a significant problem.
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Name	Pon kavitha Anbarasi, St. Mary's College
Demographic	Family member of an autistic individual; Other
Response	ADHD, Learning disability,Intellectual disability, Specific learning disorder, Motor disorders,anti social personality disorder.
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	Their SIBs can be mis- interpreted as a " behavior" rather than them trying to communicate a need. Meds used to treat behaviors , can cause patients to gain weight and asking patients to follow a certain diet for weight loss can be challenging for patients and this can be a source of anxiety for them.
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Name	Purna Waldow
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Based on observations of people in my personal life, former patients and my own lived experience, I would like to see more research into the abuse of autistic people which yields to co-occurring mental illnesses, specifically PTSD, depression, anxiety, suicidality, self harm, and addiction. I see all of these mental illnesses that often affect autistic people as connected to each other and correlated to the treatment received by others combined with sensory overwhelm of one's environment. I would also like to see research into agoraphobia, especially during and since the pandemic. There also needs to be more research into gender dysphoria in neurodivergent people, and how restricting access to reproductive healthcare impacts them specifically.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response	Almost all of the Autistic Adults I know have co-occurring mental health disorders. Most prominently, ADHD/ADD. I also have found throughout my own life that my autism makes the average therapies nearly impossible. I am not going to therapy to fix my autism, to assimilate, to “get better”. I’d like to cope with it. Alongside it. Alongside all of my disorders. I did not ask to be labeled “mentally ill”. I did ask repeatedly if autism & ADHD/ADD could be the main connection between my mental health issues. And as an adult, I have found that yes; my autism touches all of it. My brain is all connected. So to be asked the worst struggle… of being mentally ill, & autistic? It is that providers, peers, anyone could assume I am “simply” “just” “mentally ill”. When in fact, I just operate differently from an allistic; and the mental health issues I face stem from masking, hyper vigilance, hyper criticality, and a poor understanding of how to comfort or even just speak to an autistic person. I wish more people understood. I am not simply anything. I am an autistic individual, and that effects how I think and feel, across all expressed emotions and traumatic events.
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Name	Rachel
Demographic	Family member of an autistic individual
Response	makes treatment difficult...what are we treating, ADHD? ASD? Depression? anxiety? anger? they can look alike but sometimes causation is related to treatment
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response	My son is extremely hyper active. It makes it hard for him to eat, sit, read books, etc. when he becomes overwhelmed he will harm himself or run away. For myself I have had Major Depression since I was 13. I’ve had anxiety my whole life, I’ve been diagnosed with OCD. When I am overstimulated I will harm myself without thinking.
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Name	Rachel
Demographic	Autistic individual
Response	There is a huge struggle with anxiety in my experience. My anxiety gets so big that I can’t sleep or sit still. I have to move a lot and sometimes have panic attacks. Anxiety prevents me from leaving my house, making friends, and sometimes even talking. It’s hard when I am anxious and have things to say in my head, but I can’t get them out of my mouth.
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Name	Rachel brown, University of Kansas school of medicine
Demographic	Service provider, health provider, or educator; Researcher
Response	Severe self injury including tooth removal and aggression limit the ability of many autistic individuals to live full lives and challenge their families caregivers and communities. Have been a relatively neglected area for research including research into the implementation of existing effective interventions
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Name	Rachel Goodman
Demographic	Autistic individual
Response	For me it’s sensory issues & anxiety.
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Name	Rachel Payne, PhD, Didlake, Inc.
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Rachel Spencer
Demographic	Family member of an autistic individual
Response	Attention deficit is the most difficult co-trait to handle
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response	In my limited experience, ADHD and aggressive behaviors have been the most challenging. Mental health issues among people on the autism spectrum tend to be ignored because of their overarching diagnosis. This is cause for concern.
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Name	Raine
Demographic	Autistic individual
Response	These conditions are frequently under diagnosised. Many go through their entire, if not, most of their academic experience without recieving a diagnosis for their co-occuring mental disabilities. This means they not recieve any accommodations. This creates the opportunity for extremely poor learning experiences. Health insurance will sometimes not cover, or only partially cover an insignificant amount of these appointments to a psychologist/therapist for getting these conditions examined. Psychologist are also often dismissive because their patient is autistic. They frequently will misdiagnose them or they will not recieve any diagnosis, treatment, or insight for their problem at all. Jobs will not allow enough time off or breaks to allow the autistic person with co-occuring mental health conditions to recuperate. This limits a vast amount of job opportunities to an already vulnerable group. Social challenges include employers not hiring due to our disabilities because they would have to accommodate them. This causes autistic people to stretch ourselves beyond our natural capacity. This often causes burnout, which, there is not accommodation for an autistic person experiencing burnout despite how likely it is to occure and how debilitating burnout is.
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Name	Rainier, Endeavor to Hope Counseling, LLC
Demographic	Autistic individual; Service provider, health provider, or educator
Response	In my lived experience and practice as a therapist, I see a high rate of perfectionism, people pleasing, masking, and feeling burdensome or unknown to themselves. All of these experiences often lead to suicidality and substance use. I see many individuals misdiagnosed with borderline personality disorder, psychotic disorders, and bipolar disorders due to the lack of understanding of how autistic people think concretely and mood shifts leading from overstimulation.
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Self hatred, Rejection Sensitive dysphoria
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Hyperactivity disorder
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Name	Rashelle
Demographic	Autistic individual
Response	I have depression, anxiety that effect my ability to socialize "normally". I get anxious in social situations and get overwhelmed into exhaustion despite being an extrovert. I used to have suicidal ideation but after I got COVID a second time it changed how I function. I became more anxious and reactive to people. My autistic differences became more apparent in social situations.
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Name	Reagan
Demographic	Autistic individual
Response	I have depression, adhd, anxiety, and ocd. I struggle on a day to day basis to get up and be functioning. I’m unable to work, due to my issues. And I haven’t been accepted on disability because of my mental health struggles.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response	The urge to hit yourself, sounds weird right? It is I agree. I also feel great shame when I feel that urge. It’s usually shame that brings it on as well, like I made a mistake or I feel great anger. I never want to hurt anyone else, and in the past as a child I have on accident. My emotions feel so strong and in my arms I feel this overwhelming urge and I also even feel in the spot I plan to hit, a sense of it NEEDS to be hit. My leg or my head. Mentally I feel better doing so. Attention, my husband for example has a very hard time depending. Some subjects hours can be spent while others it’s a struggle to stay. We both need different ways of multi tasking or background interaction for different tasks
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Lack of support. Lack of diagnosis in AFAB people. It’s hard to get disability and if you do it, it’s not enough to live on.
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response	Professionals are not consistently applying knowledge of how “masking” autistic behaviors impact the autistic person’s mental health.  Anxiety impacts receptive and expressive communication, slows response time and could reduce the person’s ability to accurately and effectively communicate safety needs and/or sensory supports that would improve or reduce negative [feelings] experience.   Impact of not having access to communication supports, AAC, or the ability to functionally communicate orally and be understood could exacerbate anxiety and contribute to other mental health conditions.  Between masking and lack of familiar communication options, there is a cycle of impact that can be a constant stress or burden on the autistic individual. Speech-language pathologists and other professionals working with clients must be informed of best practices and apply that support consistently to address their autistic client's needs. Time spent counseling families on how to support communication impacted by the mental health condition may reduce the time in direct service to the client with autism. (this supports the new CPT codes for parent/caregiver training)
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Name	Rebecca Dosch Brown, Parent advocate
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Lack of professionals willing to see our children. They think because they didn't get specific training they can't know how to work with them. Not true. They can do it. They dehumanize autistic people, especially people who are not conversational or who do not use words for communicating. We need more messages that they CAN treat and work with autistic people. It's not rocket science and with following the lead of parents and the person in need they can figure out options that are more step by step, visual or music-based that still fit into their standard ways of treating people.
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	Severe depression, anxiety, self injurious behavior and suicidality
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Name	Rebecca Farrell
Demographic	Family member of an autistic individual
Response	All of these mental health issues are very serious, especially in autistic people who are so often ill equipped to process their feelings. Our son is very anxious, has diagnosed ADHD, is extremely aggressive when upset and is difficult to control. Medication and therapy can only do so much.
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Name	Rebecca Jukes, Mom of Autistic Child
Demographic	Family member of an autistic individual
Response	Anxiety in groups of more than 5 people, social issues like refusing to talk to unknown people even if needed (stores, doctors, restaurants) impulse control issues leading to safety and welfare issues or injurious behaviors such as jumping off high places and running in parking lots. Reliance of caretaker/parent to guide them through daily life causes caretakers/parents to need mental health care for anxiety, depression, PTSD. Being able to get care is nearly impossible when someone relies on you 24/7 and there are no resources.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	My son's severe anxiety has made it extremely difficult to access medical care.
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Name	Rex Frasier
Demographic	Autistic individual
Response	As for myself, one of the most significant challenge is societal perceptions. This is a HUGE problem that can actually cause several others to happen. The world isn't made with disabled people or divergent neurotypes in mind and it shows. This can cause a snowball effect leading to an increase in depression, self-harm, harmful stimming, being perceived as violent, being attacked and abused by others, others perceiving you as untrustworthy, suicidality, public "meltdowns," and other similar events and happenings. I live in constant fear of being in public spaces with people I don't know. I get so nervous around cops that I have panic attacks when they talk to me. I feel like I can't use mobility aids without people around me making comment's about how I'm "taking away from people who need it" and that I "Look too healthy" to use it. I choose to go places when I know it won't be busy so I don't have to deal with comments from strangers.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	ADHD Bipolar Disorder Suicidality Depression Anxiety Emotional regulation challenges we know very little about menopause, mental health in Autistic women across the lifespan
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Name	Rick Grossman
Demographic	Autistic individual
Response	Depression Anxiety Loneliness ADHD
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	Healthcare system must adopt proactive stance in addressing co-occur mental health conditions in autistic individuals, emphasizing empathy, kindness&understanding from healthcare professionals remains a determinant factor for such conditions. Another significant determinant is necessity to devise aid methods independent of monetary paywalls controlled by insurance comp.'s, ensuring autistic people proceed w/out fear of financial persecution&mental harm. Complete removal of gaslighting by healthcare practitioners (common occurrence of autistic individuals seeking diagnosis) crucial in minimizing co-occur mental condition flare-up. Could be addressed via empathy training/seminar&ASD training from autistic perspective. Unlike DSM-5, which lacks empathy, awareness&open-ended answers, these trainings should focus on the psych impacts of words w/in question formats, promoting appropriate language use, particularly in mental health questionnaire. When autistic people seek help, healthcare professionals must listen, acknowledge potential co-occur symptoms that may impede communication efficiency. Conditions like Apraxia &Selective Mutism, require tailored precaution, especially for highmask people. Recognized challenges faced by these people, is crucial for effective support. Proactive measure, training&language sensitivity are integral for a healthcare system that addresses unique needs of autistic people fostering supportive environment&minimizing mental health challenges.
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Name	Robert C Bransfield, MD, DLFAPA, Hackensack Meridian School of Medicine and Rutgers--Robert Wood Medical School
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Roberta Kane
Demographic	Family member of an autistic individual
Response	Our son is 44 years old, lives at home, and has autism as well as anxiety disorder. It has been difficult to have a consistent practice prescribing his medication because after a few years, they seem to close the practice for outpatient services. This has happened with Rowan University as well as Bancroft. Their clients are left with finding a new practice which often has a waiting list. This is our present situation. We are told that the office is not able to remain open due to funding and low payments they receive from the insurance companies. We used to receive counseling as well, but this service is also no longer available. This is a very frustrating as well as frightening situation for caregivers. It should not be difficult for people with autism and other mental health disabilities to see those who know and understand their disability, and who can prescribe their needed medication.
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Name	Roberta Lincoln, Parent Advocacy Group and lived experience
Demographic	Family member of an autistic individual
Response	Depression, suicidality and suicidal ideation, homicidal ideation, ADHD, self-injurious behaviors, unsafe distressed behaviors, abnormal sexualized behavior, belligerent verbalizations, dysregulation,
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	In addition to the above: -trauma, including PTSD, complex trauma, and traumatic situations not typically defined in the DSM -substance dependence/abuse -OCD -psychoses -dementia -personality disorders Of note is the potential interplay of these conditions not only with each other, but also with co-occurring physical conditions (e.g. the influence of elevated/chronic stress response on immune dysfunction)
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Name	Robin Blitz
Demographic	Service provider, health provider, or educator
Response	Access to coordinated care for co-occurring mental health conditions and access to insurance coverage, especially when needed in the home.
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Name	Robin MacDonald, Parent and Conservator
Demographic	Family member of an autistic individual
Response	Dental care
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Name	Robin Rhoades
Demographic	Family member of an autistic individual
Response	Anxiety, ADHD, aggressive behavior
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Name	Robin Weisman
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety can manifest itself through behavior. Communicstion, social interaction, etc regardless of whatvlevelmof autism a person is considered to have. Itvtimes of stress and trauma, anxiety is increased and the factors above are intensified. Mitigating anxiety is often not something people consider when working withbpeople who have an ASD
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Name	Robyn Linscott , The Arc of the United States
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	More than a third of people with IDD have a co-occurring mental health condition, but they often experience barriers to accessing appropriate mental health services.[iv] This includes several assumptions that people with IDD cannot benefit from mental health services, that nonverbal individuals cannot participate in therapy, that multiple medications are needed to control the behavior of some people with IDD, and that mental health professionals do not have the competency to serve people with IDD. Many individuals with IDD are also improperly prescribed medications for mental health conditions despite not having any psychiatric diagnosis.[v] Examples include: · New Hudson, Michigan: An autistic individual reported that after being discharged from a hospital stay that included psychiatric care, they could not find a psychiatrist in the hospital’s network that would provide outpatient services to them due to their disability. · Bedford, Massachusetts: An individual with autism reported they were not allowed to join a therapy group due to their disability. They said: “A psychiatrist I was seeing at the time had referred me to the group, and I'd had a successful interview with one of the group facilitators. However, the person leading the group, who I'd never met, decided I wasn't a good fit because my autism prevented me from picking up on non-verbal communication.”
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Name	Rose Baumann, Parent advocate
Demographic	Family member of an autistic individual
Response	OCD, anxiety and depression are not uncommon amongst individuals on the autism spectrum. While all individuals with autism are more vulnerable to trauma and abuse, those on the profound end of the autism spectrum who are unable to communicate and process their adverse experiences are especially vulnerable to a myriad of mental health issues including PTSD. As autistic children become autistic young adults who age out of the school system with few appropriate supports available to them, the isolation, anxiety, and despair they feel at not being able to engage in life as their non-disabled peers have adds to their mental stressors. Young adults on the profound end of the autism spectrum are "graduating to the couch" in record numbers. They are languishing at home without the full spectrum of services they need because employment, social, and residential options that should be available to them through HCBS waivers often exclude them. Aggression and self-injurious behaviors preclude these individuals from living safely in their communities. The IACC needs to do more to address SIBs and aggression, particularly in the adolescent and young adult population.
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	Just identifying each separate disorder can be very challenging and getting professionals onboard and understanding is very challenging as they are not up to date. Knowledge is often by 50 years out of date. School staff especially need training as they can easily break the trust needed for an AUtistic/ADHD child to attend
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Regular meltdowns and low mood. Aggressive outbursts and low self esteem. Many end up feeling suicidal
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response	I have some pretty bad depression and anxiety. These have made my life very insular because of my fear of how humans will react to the way I act sometimes. Some of this is due to sever bullying as a child, by other children, some is due to how I was treated while tying to hold down a job. I have a hard time finding work that I fit in well with the other staff and supervisors and such. I have been so far into the dregs of depression that I have just wanted to die, because of my feelings of inadequacy due to my being in perpetually low end jobs and losing them and not being in the same place as many of my peers. With a lot of therapy, I have reached a space where I am doing much better, but this is an issue that will NEVER go away. I will always have to take the meds, and will always have to deal with my depression, anxiety, and anger issues.
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Name	Rowan Gibson
Demographic	Autistic individual
Response
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Name	Rowan Leshy
Demographic	Autistic individual
Response	Same as question 1
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Name	Ruby Bard
Demographic	Autistic individual
Response	I would say ADHD, Anxiety and Depression. Tho it should be taken into account the high levels of PTSD in Autistic individuals due to a multitude of reasons but one stands forward for me, abuse. The hardest part is the Depression and Anxiety that comes with living in a world that is not friendly to you. A world where people are confusing and often cruel to you for not being able to understand unless they are clear. You then punish yourself and get frustrated because "Why cant you figure it out on your own" and hopefully some day get to the point where you can accept your different way of processing but its hard to get there and oftentimes we just cant. I get hit with that two fold due to the ADHD making it more complicated when you get hit with both Autistic and ADHD mental needs. PTSD is such a common condition among those I know with Autism because we are often abused in the name of teaching us how to mask normality. Neglect is also a huge issue particularly in late diagnosed autistics because caregivers refused to adapt there parenting to accommodate our nuro-divergence. Im also terrified of the police finding me in a verbal shutdown/melt down because they have been known to get violent and even kill Autistic people in those states. I have a fight response when restrained. For that reason and other health issues I never go out alone.
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Name	Ruth Hevelone, PDA North America
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	the most significant co-occurring mental health conditoins are the nervous system disability that happens with autistic people that fit the PDA profile. They are severely riddled with anxiety, depression, aggression, and sometimes self-harm.
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Name	Ruth Horowitz, Author of Living With Autism Undiagnosed
Demographic	Autistic individual
Response	I developed CPTSD in my forties. My anxiety levels skyrocketed, I started having autistic burnouts, got misdiagnosed with major depressive disorder and was forced to take ssri anti depressants for six weeks while hospitalized for an attempted suicide that was driven by autistic burnout not major depressive disorder. Misdiagnosis led to mistreatment. I started vomiting blood and my metabolism has never recovered. Lack of regulation over who can work with what conditions in the mental health field has led to mistreatment. Improper diagnosis has let to gross mistreatment. Since developing CPTSD my overwhelm meltdown shutdown cycle has become more pronounced, when I start to lose Executive function it becomes worse as my executive function gets worse.
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	I’ve been to a psychiatric emergency room which is called CPEP multiple times. I was told I look too happy to be there. But I remember feeling extremely frustrated that they would say something like that since I was taken by police so obviously I wasn't ok. So the staff need to understand that some autistic people may not be aware of their facial expressions I remember when I was first placed in the inpatient psychiatric unit I was really freaking out and slamming the doors of the unit and crying and all the nurses did was threaten me with a shot which would have obviously been something sedating or putting me in a room I wouldn't like. That night no one ever told me anything about the unit or the schedule. I've never been officially diagnosed with PTSD but I do believe I do have trauma from being hospitalized because for a few years after it happened I would have severe panic attacks in the same days each year and I'm terrified of ending up back at that hospital which is the only one police take people to in my area so it prevents me from being fully honest at time about how I'm doing. The hospital was St. Joes hospital in Syracuse NY. I do get overly attached to people who make me feel genuinely cared about and have abandonment problems so it was hard because I was very attached to a nurse.
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Name	Ryan Bradley
Demographic	Autistic individual
Response	Depression Anxiety, Attention-deficit Disorder suicidal (fleeting moments with myself although not in months)
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Name	Ryan Erdozain
Demographic	Autistic individual
Response	Gullibility is a big issue when it comes to my challenges. I have been scammed on several occasions and as an autistic adult without any support from other adults, I have no way of knowing when I am being taken advantage of. My anxiety and depression also work in tandem. After I experience any slightly stressful situation my body and mind will begin to shut down. I have less energy than others because of my mind working overtime on every single detail of my life. I've also been told by my therapist that I have ring-of-fire ADHD, I haven't learned much about it yet but I get bursts of energy sometimes where I feel like I can do anything such as cleaning my room in the middle of the night or organizing my bookshelf for the millionth time when in actuality I don't have the energy to be doing any of that.
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA, ADHD, PMDD,
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Name	S.
Demographic	Autistic individual
Response	Finding proper help. Some people Don't know how to get proper help. Some people can't get access to proper help
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	depression, anxiety, executive functioning and dysregulated nervous systems
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Name	Sacha
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance and constant nervous system dysregulation
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Name	Sam Stern, either individual person or democrat-center
Demographic	Autistic individual
Response	a mix of a few things : - since I cannot drive, arranging and funding transportation is often challenge especially if I need to move to maintain a relationship and end up too far from a city. - I often have problems with requesting accommodations some thing like "I am autistic, please turn off the flashing light over there" vs "I cant read that light up sign, may I a menu" have vastly different outcomes. - just determining which symptom vs diagnosis to quote on some single choice form or conversation really is madding.
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Name	Samantha
Demographic	Autistic individual
Response	These conditions serve to further isolate us from society and even our own families and support systems. Solutions to mental health problems are nearly impossible to find. We're left to spend our energy tending to our troublesome feelings or becoming overwhelmed by them because we haven't.
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA - internalized expression especially. Chronic ervous system dysregulation Overstimulation / understimulation Sucidial ideation
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Name	Samantha
Demographic	Family member of an autistic individual
Response	He has extreme OCD, which many educators and therapist do not understand due to his age. They would lose their patience with him and not let him get the time he needed to complete tasks. They want to jump to medication instead of therapy and increase his communication.
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Mixed Anxiety and Depressive Disorder, Attention Deficit Hyperactivity Disorder, Insomnia. Work is almost impossible without medications. Not being able to focus while severely depressed is often a debilitating mix of comorbidity.
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Name	Sandra
Demographic	Family member of an autistic individual
Response	Anxiety, ADHD, Aggressive also behavioral. Its like walking on a land mine waiting for any moment for one to go off..
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Sandy
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological Demand Avoidance Anxiety
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Name	Sandy Wormald
Demographic	Autistic individual
Response	I don’t know as I’ve always had adhd and autism and often depression. I think it makes me feel as if I’m torn in many ways unable to do a lot of what I want or what is expected of me.
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Name	Sara
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Anxiety and ADHD. The anxiety is adaptive, from masking and functioning in a neurotypical-centric society.
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Name	Sara
Demographic	Autistic individual
Response	I have ADHD, PTSD, C-PTSD. All of these conditions make daily life quite difficult. Sometimes my ADHD makes me crave outside stimuli, and other days my Autism makes me not want to leave my house. The two conditions fight with one another, regularly.
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Name	Sara Brown, Prevent Blindness
Demographic	Representative of advocacy organization
Response
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Name	Sara CdeBaca
Demographic	Family member of an autistic individual
Response	Anxiety and adhd
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Name	Sara Trovinger
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression has hit our family hard this year with our son telling us he wants to "go to heaven". Though he is 13 and can talk and walk, we can't leave him by himself sometimes. He has so much anxiety about everything outside of a couple activities at home (like playing video games) that he won't engage in anything he hasn't done before and will ask us repeated questions about things he has done in the past.
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Name	Sarah
Demographic	Service provider, health provider, or educator
Response	I am a behavior analyst who has focused primarily on individuals with autism for almost 30 years. In my experience, there seems to be a sub-set of individuals with ASD who also experience severe OCD. These obsessions go beyond just ritualistic routines, narrow interests, and a need for sameness. These obsessions tend to be extreme and often destructive in nature, and when interrupted, can lead to severe aggressive behavior. Some examples include obsessions with ripping, breaking items, or knocking things down (often "big ticket" items such as toilets, televisions, etc.), arranging or placing things in odd locations, then becoming extremely aggressive if the items are moved, and obsessions with watching people bleed or picking other's scabs. These behaviors require intensive intervention and highly skilled professionals, typically beyond what traditional ABA programs, schools, and other interventionists are able to provide.
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Name	Sarah
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety is the biggest challenge, followed closely by depression. PTSD is present in many ASD individuals as a result of chronic, lifelong trauma.
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Name	Sarah K.
Demographic	Service provider, health provider, or educator
Response	Working in community mental health as a licensed psychotherapist (in practice 14 years), I often seem to encounter individuals that seem to fit within a triangle of diagnoses. Common triads I notice are: -ASD, ADHD, and PTSD -ASD, Schizoaffective Disorder, and anxiety disorders -ASD, OCD, OCPD Some of this I’ve attributed simply to the overlap of traits/symptoms across diagnoses while also questioning more over time whether I am seeing this because these diagnoses truly occur along the same spectrum. This is simply speculation and curiosity however as I am not a researcher.
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Name	Sarah Kelly
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Isolation and a lack of inclusion. For example, my son’s former school only had general ed specials (art, PE, music, library). Students with outbursts or aggression were not allowed to participate and no special ed specials were provided. Sometimes people in public are scared of us when my child has an outburst. In some settings, the autism is the focus and the other mental health concerns go unaddressed.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response	Pathological demand avoidance
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My 17 year old has a PDA profile which has made life extremely difficult for them and the family, and causes debilitating anxiety and depression, esp as it is little understood and only recognised very recently.
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Agressive
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD, major depression, suicidal ideation, executive function variability, alexithymia & access to emotions, anxiety, dissociative identity disorder, body dysmorphia, antisocial vs isolation, mood disorders, communication & processing disorders, learning disabilities
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Aggressive behaviors, anxiety, attention deficit, mental retardation
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Name	Sarah Muecke
Demographic	Autistic individual
Response	I am burnt out all of the time with no opportunity to recover and no help.
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Name	Sarah Peitzmeier, University of Michigan
Demographic	Family member of an autistic individual; Researcher
Response
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Name	Sarah Stewart
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	A lot of it boils down to trauma
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Name	Savannah Higgins
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	In a clinical setting, providers may focus too much on behaviors and social skills. There is this notion that if autistic people can socialize in alignment with societal norms and expectations, mental health concerns can be alleviated. Let’s consider that pushing for this social/behavioral assimilation may be contributing to other adverse mental health conditions.
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Name	Scott Jones
Demographic	Autistic individual
Response	there needs to be be more research done in this field, as our current research is showing these and more are related to each other.
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Depression - Often centered around forced social interactions and a lack of acceptance by others for our natural personalities. Hopelessness - Social Security Disability does not compensate the cost of living, society continues to depict autism as something negative translating into personal relationships and perceptions. Fatigue - Constantly masking is mentally exhausting and psychologically harmful/traumatizing. PTSD/CPTSD - Both occur in higher frequency within the autistic community when compared to the general populace. ADHD - This is a common co-occurrence with autism. Self Harm - Many of us do this for various reasons. Suicidal Ideation - I have yet to meet an autistic individual absent controlled suicidal ideation (i.e. avoiding being in rooms with knives and/or other harmful tools)
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Name	Shannon
Demographic	Family member of an autistic individual
Response	I have two children with autism. They both have gastrointestinal disorders which require special diets and medications. They both have difficulty falling asleep and require supplements to fall asleep. They both have sensory challenges which can trigger each other in to very challenging behaviors which result in agitation, aggression, violence, self harm, elopement, property destruction, depression, anxiety, tics, etc. We have had to call the police for help only to find their only answer is to have the children committed, mobile crisis wouldn't come out and only suggested having children taken to ER to be committed. HBCS services have been non-existent since covid due to no staff, vocational training no staff, community Networking no staff, respite no staff, day program not enough staff. We have absolutely no help. My children cannot swallow pills/capsules and insurance company refuses to cover liquid or patches unless they try/fail the formulary medication that they cannot swallow. Milk intolerance makes it difficult to find medications because 45% medications available contain lactose and the majority of medications are only available in pill/capsule form.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	My most significant mental health challenges include adhd, anxiety, and depression.
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Name	Shari Washburn, COPAA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	depression and anxiety
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response	There is some aggression particularly when introduced to new things; environment, people, transitions, etc.
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Isolation Lack of social skills Lack of communication skills Limited community involvement or interest Anxiety/ ADHD / intellectual disability along with autism Limited ability to communicate and self regulate leading to aggressive behaviors / meltdowns
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	I was diagnosed with Premenstrual Dysphoria Disorder at the age of 11. This means that from the time I started menstruating, I have experienced significant bouts of dysphoria, suicidality, and self-injurious behaviors. By the time I was diagnosed with autism at the age of 32, I'd already been diagnosed with major episodic depressive disorder, acute generalized anxiety, and panic disorder. This often puts me in a state of emotional dysregulation that makes me more prone to meltdowns and burnouts which are traumatic and can cause significant skill regression. As an autistic person, driving was always a stressful endeavor, but my anxiety has made it impossible. I also am unable to hold a typical job because my moods can be very unpredictable limiting my ability to perform the duties of my job.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response	My son has moderate to high functioning Autism and co morbid diagnoses of ADHD DSM-F90.2, Other Specified Disruptive, Impulse-control, and Conduct Disorder DSM-F91.8, Other Specified Trauma/Stressor-Related Disorder DSM-F43.8, and Other Specified Anxiety Disorder DSM-F41.8. When my son is having a mental health crisis (threatening suicide, having suicidal thoughts, or homicidal threats) he is turned away by all in patient hospital programs because he has autism too. We are often told "we do not have the level of supports he needs". The Centers for independent living (CILA) do not provide the level of care needed for his mental health crisis. When there is a crisis, the CILAs have months long wait lists to even get a bed for him to attend a 90 program for assessment and treatment. No CILA is able to handle my son's outbursts and violent behavior. This puts him at a greater risk for abuse in these environments. In our state, all state government developmental facilities have been closed or have had their funding minimized to where they can not take new patients. The non profit crisis centers send my son home from the ER with "coping skills" instead of putting him in patient in a mental health crisis. One of my friends son's had to sit in the local hospital ER for 3 weeks because Illinois does not have any place for Autistic individuals who also have mental health issues.
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Name	Shawn Sullivan, Autistic adult
Demographic	Autistic individual
Response	The problem is a lot of medical providers still do not believe co-occurring mental health conditions are real. There is a provider in rural Oregon who is in charge of almost all of the autism diagnostic evaluations who does not believe a person with autism can also have ADD or ADHD. There are not providers with experience in assisting adults on the spectrum, and if they exist we have to private pay because they don't take insurance. Suicide is a significant issue. A lot of that stems from our inability to be accepted for who we are.
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Name	Shawna Strickland, American Epilepsy Society
Demographic	Representative of advocacy organization
Response	It can be difficult to identify clinicians who are trained to provide care for these conditions in this special population OR who feel comfortable providing care for this special population. There is a delay in starting therapy due to a shortage of healthcare professionals (e.g. neuropsychologists) and developmental-behavioral pediatricians. The current path for board certification in developmental-behavioral pediatrics requires completion of a pediatrics or combined internal medicine-pediatrics residency program followed by a 3-year developmental-behavioral pediatrics fellowship. Upon conclusion of this 6-years of training, the average starting salary for a developmental-behavioral pediatrician is often lower than their general pediatrics colleagues who only complete the 3 years of post-graduate pediatric training. To address the shortage of developmental-behavioral pediatricians required to care for the increasing population of children with autism, reimbursement for developmental-behavioral pediatricians and the duration of training should be reassessed.
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Anxiety, Suicidal ideation, depression
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response	Regulating emotions to mange social situations
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression caused by the fact we mask after years of bullying making people think we lie about our disability, anxiety from the pressure of constantly getting yelled for not having something explained good enough. Adhd, ocd. Suicidal ideation from professionals and peers dismissing our disability as manipulation
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	Along with my autism, my major depressive disorder, generalized anxiety disorder, ADHD, and PTSD causes many obstacles in my day-to-day life. Working in a society is difficult as I am semi-verbal. Talking and socializing is expected and necessary to function in today’s world. I struggle to perform these social tasks without facing a deep depression, burnout, and meltdowns from overstimulation and anxiety.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response	Anxiety symptoms in some children/teens, aggressive behavior or self-injurious behavior increases in other people
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	PDA and the root anxiety
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Name	Shelly Moss, Atypical
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	These issues often go overlooked as individual conditions and are lumped in with autistic traits or behaviors which is infuriating. The conditions should be treated as individual conditions AND as co-occuring conditions with a team of providers who are dedicated to the overall health and wellness of the individual. Suicidal ideation can be both a physical ailment (lack of vitamin d, lack of sleep, nutritional shortcomings, etc) and a psychological issue that needs more than one provider to approach treatment. ADHD on the other hand is often unincorporated from Substance Use Disorder even though they go hand in hand when the ADHD is undiagnosed. The need for certain drugs to regulate themselves is intuitive to them; yet providers are incredibly reluctant to prescribe what is necessary for an unregulated brain. Aggressive behavior is often a result of the lack of understanding of allistics communication or lack thereof in the way of the autists inability to read between the lines, not understanding social norms or cues and feeling set up by people who don't shoot straight. Truth is subjective for allistics as well as integrating subtle undertones of suggestion that are infuriating to people on the spectrum.
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	Anxiety and from that depression and self injurious behavior and suicidal ideation. Most autistic people know they are different. We explained autism to our son the summer before he went to middle school. We wanted him to know why he stims and why he has other behaviors. We have also spent his life pointing out behaviors in other people and what is socially acceptable and what isn't. But my son now sees when people are making fun of him or his autistic peers and can stand up to them. This makes him very anxious still because he wants people to follow the rules all the time. And when they don't follow the rules, he gets Anxiety, and when the Anxiety goes on too long he gets depressed.
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Name	Sher DeGenova MS CCC-SLP, Flemington-Raritan School District, NJ
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	-anger, explosive behavior, aggression -self-injurious behaviors -depression -lack of social peers -inability to gain employment and/or hold a job -inability to keep roommates -inability to continue in day programs (due to mental health issues)
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response	Anxiety, which leads to excessive questioning and repetitive behaviors. Anxiety also leads to aggression and self harm.
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Name	Shiloh
Demographic	Autistic individual; Service provider, health provider, or educator
Response	For myself, it's deppression and the ever present anxiety. I'm also diagnosed with PTSD.
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Name	Shonda
Demographic	Family member of an autistic individual
Response	self-injurious, anxiety and adhd
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response	It's common for autistic individuals to be diagnosed with concurrent mental health issues, like depression and suicidal tendencies. In fact, statistics show that as many as 80% of autistic people carry at least one comorbid psychiatric diagnosis, like attention-deficit/hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), or anxiety disorders. Of that population, 40% are estimated to experience two or more such diagnoses. Statistics upon statistics underscore this reality. One study reports that autistic youth are nine times more likely to present to the emergency department for psychiatric reasons than their neurotypical peers — and that number has almost certainly increased since the study's publication a decade ago. Autistic individuals and their families continue to face massive and seemingly insurmountable challenges as they try to access much-needed mental health care in community settings. For example, finding a mental health provider who is equipped to work with autistic teens is virtually impossible. Youth who experience autistic meltdowns end up in psychiatric wards that can't treat their unique needs — as faced by my own family's Lived Experiences.
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Name	Sleep Research Society
Demographic	Other
Response
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Name	Sloane Walters
Demographic	Autistic individual
Response	As someone who struggles with depression, anxiety, ADHD, and suicidal ideations, it has been impossible to live a “stress-free” life. Doctors always tell me to do something relaxing or not allow stress to affect me, but it’s not as simple as a snap of the fingers.
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Name	Sonia
Demographic	Family member of an autistic individual
Response
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Name	Sonja
Demographic	Autistic individual; Family member of an autistic individual
Response	1. Misdiagnosis, due to ignorning ways autism can present (esp in a highly masked individual) 2. Assuming that depression and anxiety are the primary/only problems a highly masked autistic woman has, and then treating those problems only 3. Treating mental health problems in a neurotypical way, when a neurodiverse friendly approach is needed. For example CBT and analytical approaches were detrimental to my mental health. It caused rumination, disconnection from my environment, guilt and shame becuase I thought I was not working hard enough at CBT, sadness becuase I thought I was broken after years of therapy and I am still depressed.
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Name	Special needs mom
Demographic	Family member of an autistic individual
Response	Intellectual disability ADHD Generalized anxiety Aggressive behavior This affects outings/gatherings, being able to find a safe babysitter, going out in public, etc. My child oftentimes doesn’t have a sense of safety awareness
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response	For our son, anxiety impacts his health the most. He has difficulty accessing school and activities outside the home. Feels like people are looking at him.
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	As noted in my response to question 1, anxiety. I have seen my son reveal layers of anxiety that my wife and I would never have imagined, but which affect his daily life.
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Name	Stephanie
Demographic	Autistic individual
Response	Depression poses a significant challenge for some individuals with autism when it comes to co-occurring mental health conditions. The blend of autism and depression deeply affects overall well-being. Autistic individuals are at an elevated risk of depression due to challenges in social communication, sensory sensitivities, and the potential for isolation.
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	ADHD
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	adhd and RSD can lead to isolation, anxiety, acute mental health issues.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, stress, aggression.
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Name	Steve
Demographic	Autistic individual
Response	Like all invisible disabilities, people don't believe they're there, and see no reason why they should care. They don't understand, but they judge us anyway, despite their profound ignorance of our condition(s).
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Name	Steven Lunseth
Demographic	Autistic individual
Response	Depression and Anxiety have been the biggest demons I have had in my entire life. They have been such a challenge that it is hard to do many thing without them trying to rule my life. While I have ADHD as well it is not as bad as the issues caused by Depression. Depression has led to suicidality and self-injurious behavior that had caused a myriad of problems in my life.
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression and anxiety.
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Susan
Demographic	Autistic individual
Response	Periodically suffer from anxiety and ir depression most likely due to the stress of growing up undiagnosed. Getting a diagnosis in middle age was very helpful in understanding myself and eventually others. This improved my quality of life.
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Name	Susan A. Fowler, PhD, University of Illinois, College of Education
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Those with co-occurring mental health conditions are often excluded from supports and access to services traditionally developed for those with only developmental disabilities. They are left with no supports.
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Name	Susan Sigerseth, Retired Autism Proffessional
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Anxiety
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	ADHD, bipolar with psychotic features along with autism (no intellectual disability) causes constant challenges in a social/emotional level. She becomes verbally and physically aggressive, elopes from school and home, is bullied at school - and sometimes is the bully as she is not in tune to social cues. Suicidal and homicidal ideation when manic. Depression and anxiety are common along with self harm and feelings of worthlessness because she knows she’s “different”. She’s been hospitalized psychiatric inpatient 16 times now. Only one hospital in the Phoenix metro area has focus on autism and the beds are always full. She was denied DDD coverage the first time due the fact her afflictions are mostly ‘invisible’ as she is fully mobile, able-bodied and intelligent.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response	Currently my son chooses self injury as his mode of regulation when he’s upset. My greatest fear as he grows is he will begin to hurt himself in more harmful ways or begin to harm others.
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	OCD , anxiety, seizures
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Name	T. Gittleman
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Binary thinking as if something cannot be more than one thing (such as Borderline and ASD), having research predominantly on a certain demographic (white men) rather than more holistically reflective of the general population, and lack of in-person communities.
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Name	Tanina Cadwell, Unaffiliated
Demographic	Autistic individual
Response	My co-occurring mental symptoms are as follows: Autism Spectrum Disorder, ADHD, Generalized Anxiety (GA), Obsessive Compulsive Personality Disorder (OCPD), cPTSD, panic attacks / meltdowns, and insomnia. As a result: - I live in "extremes" - it's very difficult for me to calibrate to the middle ground in anything I pursue - I often overwork myself to the point of burnout / flare-ups when given a novel and/or exciting task (e.g. If I go unmonitored, I will work a 12-hour day with one restroom break, will not eat, and will complete a task meant to be completed over the course of a week within one sitting. Afterwards, my brain/body will shut down for several days). - I struggle to deliver on tasks in a timely manner due to a rigid, compulsive need to deliver only my finest, most perfect work - I also struggle due to a perseveration on the “research” phase and an inability to follow a single, direct path (I hop all over the place). - I am often overwhelmed by strong emotions, especially in events that normally do not affect other people - I experience high levels of fatigue, bodily inflammation, and burnout from masking in different social environments, especially when I am overstimulated - I have lost my sense of self and identity. - I experience severe episodes of anxiety, shame, and depression when unable to complete what I perceive to be the workload (”day in the life”) of an excelling, neurotypical person.
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Name	Tara
Demographic	Autistic individual
Response	The biggest challenge is to fulfill very specific needs in order to fight depression and anxiety. When I am forced to mask I become deeply depressed. Having to apologize for who I am also causes deep depression and the anticipation of this scenario also causes panic attacks. With my inattentive ADD I can become lost because my brain just leaves reality.
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	In my personal experience anxiety, depression, and ADHD are my most prevalent challenges. My autism causes me to over-think and be very hyper-focused on certain situations and issues as they occur. My anxiety as well as other hyper-focused emotions can be heightened because of this. Also, because of my autism I am overly critical of myself and hyper-exam myself and my introverted perspective is thrown into depression and critical self-doubt and my self-confidence can plummet because of this.
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Name	Tempest
Demographic	Autistic individual
Response	My ADHD consistently butts heads with my Autism (ADHD wants novelty and spontaneity while my Autism craves familiarity and routine, for example.) So I often struggle to keep a routine and end up falling into depression and worse anxiety. When I do accommodate my Autistic need for structure and routine, I thrive. My meltdowns tend to be self-injurious, even as a 22-year-old adult. I often come out of a meltdown with self-inflicted bruises and marks. Suicidal ideation often accompanies my meltdowns. Depression and anxiety have plagued me for years. The first time I showed signs of social anxiety, I was three and it ended up causing me to drop out of dance lessons (something I regret to this day) as I would refuse to go in. Depression first started to plague me around middle school after years of bullying that continued even in middle school, leading to self-injury and suicidality. I also struggled with anorexia in high school, it started because I needed a sense of control and I knew no one would bat an eye because I had been a lifelong picky eater with sensory issues around food who didn't enjoy eating very much anyway. I also struggle with OCD and hypochondriac tendencies which impact my daily life greatly.
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Misdiagnosis.
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Name	TG
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological demand avoidance This autistic profile is so misunderstood.
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Name	Thomas
Demographic	Autistic individual
Response	anxiety, depression and cptsd. A lot of anxiety from being hyper aware and making sure everyone is not mad at you and that you are not acting weird in public. cptsd is because of being criticized for everything you do differently.
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Stigma, insufficient awareness and not understanding autistic experience to ensure link in of appropriate supports.
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Name	Tiffany Marie Ryan (Brittingham)
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization; Other
Response	Depression Anxiety Self injurious behavior Suicidality Repeating the above because they also cause mental health concerns: Gastrointestinal conditions Sleep disturbances Sensory and motor challenges Anxiety PTSD/C-PTSD Epilepsy Alexithymia ADHD Pre-eclampsia and premature birth Substance use disorder Asthma Allergies Obesity Psychosis Postpartum depression Fibromyalgia Hyper mobility
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Name	Tosha Brothers
Demographic	Autistic individual
Response	As an autistic individual who has navigated severe anxiety, depression, and OCD, I emphasize the need for tailored mental health support. Meditation and mindfulness were instrumental in my recovery, offering separation from destructive emotions. Autistic brains process information with detailed exactness; therapies must respect this intricacy. Personal autonomy is crucial in treatment—every reaction in an autistic mind has a domino effect. My journey from deep despair to a place of continuous improvement underscores the potential for resilience and recovery in the autistic community. Our experiences are nuanced and deeply informative for mental health research and practice.
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Name	Tova
Demographic	Family member of an autistic individual
Response	PDA, ADHD, suicidal ideation
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response	Our son has limited to vocal ability so I am limited in my ability to respond to this. I wish I knew if he was depressed, had anxiety or wanted to hurt himself. He does seem to be OCD and will roam the house moving and replacing items throughout the house. Currently every decorative vase, jar, and bowl - along with all of our glassware are stacked up in his room. Any attempts to move any of these items causes him distress. These hoarder-like tendencies are becoming a health issue as he will not allow us to move, touch or clean any of these items without getting upset and anxious. If we try to do while he is out at an activity, he will be obsessive for several hours to make sure everything is in its place.
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Name	Tracy Dixon-Salazar, Lennox-Gastaut Syndrome (LGS) Foundation
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Aggressive behaviors are a major concern in the autism community and are a huge danger for people with autism and caregivers.
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response	Anxiety depression aggressive behavior destruction of property
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The most significant challenge caused by co-occuring mental health conditions of autistic people is that mental health for autistic folks is difficult to evaluate, i.e., such conditions may not be apparent or exhibit themselves differently than for typical folks. Important to notes that it is often difficult for autistic individuals to describe or explain their lived experience of depression or anxiety etc., or even to name it. Also - existing treatment (e.g., CBT) can harm autistic well-being. Lastly, mis-diagnosis, of course, incl. marginalized folks (people of color, poor familiies) are apathologized more than more privledged folks.
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Name	Ty Shields
Demographic	Family member of an autistic individual
Response	My AuDHD daughter has emotional dysregulation and sensory issues. Talking and working with autistic people in research will do so much to help her to focus and succeed in school, not to mention the mental health toll it takes on her to be told she is "disruptive" and "attention-seeking" to the point where she feels she is terrible and that "no one likes" her. She is an elementary school student. My ADHD (possibly AuDHD) niece is already experiencing this same trauma, and she just started kindergarten.
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Name	Val
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression and impacts of relationships issues, bullying, low self esteem. Anxiety specifically PDA driven anxiety Suicidality
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Name	Val Luther
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The first recommendation from healthcare and even some mental health care professionals for Anxiety-like symptoms are treating with medication rather than recognizing that accommodations, supports and changes to the environment are considered.
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Name	Valerie Beckwith
Demographic	Autistic individual
Response	Depression, lack of self esteem and confidence due to social isolation, suicidal ideation, OCD
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	Depression ,anxiety, self harm, negative self talk adhd my child has attempted suicide twice since returning to in person school. My child has stopped attending class 2 months ago due to mental health reasons we are waiting to be accepted into the virtual program but it is taking forever.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	ADHD and anxiety are the biggest mental health conditions that I see troubling much of the autistic community.
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response	I have seen all of these issues in my 14 yr old autistic child. I also believe PDA (pathological or pervasive demand for autonomy) is an area that needs more research. My child experiences many of the characteristics of being "demand avoidant" and it is a source of much distress for him, me as a parent and other professionals working with him who don't have an understanding of it.
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Name	Vee Crowe
Demographic	Autistic individual
Response	My Anxiety prevents me from having a job, from eating certain foods, from cooking certain foods, from sleeping in the dark, from having someone behind me or talking to me or perceiving me. My OCD makes it so I need to have things in a specific way or I legitimately can not function. I can't use dishes that I haven't cleaned two or three times, my food has to be on the dish in a certain way. My Speech Impediments make it difficult to talk and communicate to get what I need which, paired with my monotoned "sarcastic" voice, cause people to believe mocking, insincere, or rude which leads to a hostile encounter despite it just being my voice. Something close to Dyslexia makes reading and writing difficult, making words fuzzy or double or change or disappear, which in turns gives me migraine. Migraines. I can get them from everything which makes our loud, cacophonous world hell to live with. A change in temperature, the cold or heat, a sudden loud noise or repeating loud noises, people talking too loud, people talking too quietly, bright lights, allergies, smells, myself talking. Sensory Processing Disorder makes sensory input either limited, which means I sometimes don't notice I'm being harmed until several seconds later, or too much, which means even my clothing hurts to touch my skin no matter how soft. I could touch a hot stove and not notice until a few seconds later even when I'm looking at it, injuries go unseen until blood is or some pain is finally felt.
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	For me it is figuring out what disorder is the cause of the behavior . I need support that is not available . Many times teenagers with Autism rage and are abusive and destructive.
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response	Huge anxiety and demand avoidance stop my son attending school and taking part in any activities
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Often OCD, ODD, ADHD are overlooked as components of ASD in younger youth and older youth/adults are often overlooked as at risk for depression/anxiety and SI...
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Name	Vienna
Demographic	Family member of an autistic individual
Response
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	My son has very high anxiety which makes it very difficult for him to go to school. He refused to attend school for over a year. He acts very aggressively with his brother which has caused a lot of damage to their relationship and my younger son now needs therapy to address the harm it causes him. Despite all of our best efforts, we don't have therapists who truly understand our son's autism presentation. As a result, they give us all the traditional tools that don't work and sometimes make matters worse. Our own research has lead to better results but as burnt out parents, we need experts and professionals who can guide us.
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Name	Viktoriia
Demographic	Autistic individual
Response	I have experienced eating disorder, depression, depressive-anxiety disorder, self harm. I also was diagnosed with ADHD.
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Name	Virginia Fox
Demographic	Autistic individual
Response	Depression from feeling like an alien and lonely and not understanding why you’re different. It makes you isolated and depressed and it is very hard to recover from. This in combination with autistic emotional experiences like meltdowns leads to more frequent occurrences of self-injurious behavior and suicidality. ADHD contradicts autism a lot which makes your brain feel at war with itself
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response	Anxiety OCD Self injury Aggressive
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response	I problemi mentali dipendono in gran parte dal fatto che il soggetto autistico non può comunicare (parlare) con chi gli sta accanto [Translation: Mental problems largely depend on the fact that the autistic person cannot communicate (speak) with those around him]
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Almost all Autistic people are born with dysregulated emotions due to differences in the amygdala and associated emotional circuits in the brain. This causes Autistic people to be more vulnerable to all emotional problems and to difficulties with self-regulation. Not recognizing this as a core cause of Autistic differences creates massive problems obtaining adequate therapy. Imposing manipulative therapies like ABA just make this worse. Instead of focusing on helping with emotions, ABA tries to train children as if they were dogs. It is shameful this is still allowed.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response	1. ABA, behaviorism, and behavior being prioritized over mental and physical health especially in those who are nonspeaking and or have an intellectual disability. (finding the root cause(s) of self-harm/ injury needs priority over simply stopping self-injury) 2. Finding neurodivergent affirmative mental health professionals. 3. Minimal research and awareness into complex PTSD and the impact of ableism on our (autistic people's) mental health. 4. Side effects of psychotropic medications. 5. Lack of research into Neurodivergent affirmative mental healthcare.
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Name	Whitney Storey, University of Louisiana at Lafayette
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	In addition to the previous response, mental health professionals do not have an accurate understanding of autism and neurodivergence in general. As an autistic clinician who is also female, I do not fit the typical look of autism and also do not qualify for a diagnosis to a clinician who is not well-trained on the differences of autism for women. Regardless of the specialty/license of the mental health professional, without updated understanding of neurodivergence (which goes beyond the DSM), they are causing harm to their ND clients.
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Name	Whitney Voltz
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response	Aggression
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	Getting access to medical help of any kind is head and shoulders #1. Let alone keeping track of it. Be it psychologists or psychiatrists, general practitioners, dentists or other specialists. Affording that help is #2. Concurrent/comorbid disorders make working at all extremely difficult, let alone full-time, and in a field or industry that pays you well enough to live.
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Name	William Spell
Demographic	Autistic individual
Response	When I was in college, I got such severe depression I was considering suicide. I'm in a much better place now. Also, in elementary school, I was diagnosed with ADHD, though now I question the validity of that diagnosis.
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response	I would strongly suggest revision to listing "aggressive or self-injurious behavior" as these are descriptions of potential symptoms indicative of a mental health syndrome and are not "behaviors." As such, it would be incorrect to include these in a list of legitimate mental health diagnoses. Please know that I have spent my 37-year career in the field of supporting individuals with developmental differences and autism demystifying the stereotype that autism necessarily equates to violently aggressive "behavior," and am the award-winning author of ten autism and special needs parenting books.
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	It feels like a 10-car pileup in your brain. so many things are wrong and they work together to make each other worse and more difficult. Specifically the combo of Autism and ADHD makes it so very difficult to do anything, the lack of motivation can easily become depression and every day feels like an uphill battle.
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Name	Wylder, Autistic
Demographic	Autistic individual
Response	My anxiety has greatly impeded my life. Before receiving treatment I could barely leave the house at all. Even with treatment, many social situations are horrifying for me, and make any interaction ridiculously difficult.
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety keeps me living inside my house. And mostly im anxious about my ibs. My adhd, sensory processing disorder, synesthesia, OCD are less of an issue.
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response	All of the above- mentioned examples. Mainly when it comes to OCD and impulsivity.
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Name	Zachary Kopel
Demographic	Autistic individual
Response	Anxiety, depression, ptsd
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I wasn't diagnosed w Autism until I was 44. I'm a cis white woman. The understanding of autism in women/girls is woefully inadequate. I have been misunderstood my whole life by others AND myself- I've been labeled as aggressive, combative, aloof, weird, awkward. I've had to be medicated for the anxiety this causes. I've suffered from periodic depression because I become exhausted. I'm a hermit because I am so afraid of human interaction, and only JUST learning how to interact with the world comfortably
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our child has been under psychiatric care most of his life. We have come to believe that this care is often misguided, mistaking behavior-as-communication (as described above) for symptoms of psychiatric disorder. The side effects of many of psychiatric drugs commonly employed to address perceived disorders can have profound effects on persons such as our son, who are unable to communicate (except through behavior) the adverse impacts of these side effects. Examples include: weight gain, lethargy, “disturbance” (hallucinatory or similarly distortive perceptive effects that are sometimes side effects of SSRIs and other advanced psychiatric drugs), and involuntary tics. The role of off-label psychiatric medication to treat conditions co-extant with severe autism, developmental disability, etc. needs to be re-examined. The medications are given ostensibly to treat mental disorders that are only co-occurring with autism, such as maladaptive behavior, when they may in fact be reactions to poor care conditions, regimentation, etc. much as they are for the inmates of maximum-security prisons. These medications also create their own knock-on effects, e.g. morbid weight gain, permanent tic disorders, etc. that have not been adequately studied. As described above, these effects have led to permanent co-occurring physical and psychological conditions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	I have ASD, major depression (recurrent), and generalized anxiety disorder (all treated). I have a PhD and work as a researcher. I use weekly therapy and medication management support. I struggle at work when my social skills are inadequate, and I make social mistakes. My sister and three of her six adult children have ASD. All graduated HS. My sister has significant anxiety and depression that is keeping her employed as a personal care attendant even though she has a 2 year RN degree. She had a serious suicide attempt when she was in her 20s. One daughter with ASD was employed as a railroad conductor but lost the job when she started having seizures. She is frozen by her anxiety and has been unemployed for 18 months. She has a BA but most recently worked mucking stalls at the horse ranch. The second adult failed her driving license test four times due to test anxiety and relies on her parents to transport her to her full-time job at Walmart. She has significant untreated anxiety and depression. She will not make medical appointments for herself. The third works full time in a warehouse and of the three is the most independent, driving himself to work and working full time. But he talks about how his limitations in social skills have made it difficult to make friends. All have insurance that would pay for supports but they have not sought mental health treatment for their anxiety or depression.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenges we see are driven by autism with a PDA profile. My sons anxiety levels are high. In second grade he learned that adults do not listen to kids. He would tell the teacher that he was to tired to do something, they would encourage him to try anyway. He would repeat that he was too tired. They would encourage him again...and he would explode. He would flip desks, throw things, the classroom would be cleared out to keep the other kids safe. He was restrained a few times. It's been 5 years and he is still feeling the effects of the trauma of being restrained/secluded. He recently confirmed that he learned that when adults don't listen, the only way to get them to listen is to get aggressive. While the scenario described above probably happens in schools all over the country everyday, most of the time the kid pushes through and gets through the day. Uneventful. "Normal". With PDA, my son doesn't understand or see the social hierarchy. He views himself as an equal or peer to any teacher or adult he interacts with. He is unable to comprehend why an adult won't listen to him if he says he's too tired. He's now in 7th grade and we're struggling to break him of the habit of throwing things when he perceives that no one is listening. He lives on edge. he is easily overwhelmed when he perceives a lack of respect from an adult...and very few adults lead with respect when it comes to kids.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	In my opinion, the most challenging co-occurring mental health conditions in autistic people are depression and anxiety. These are generally not caused by autism but rather by how neurotypical people treat autistic people. Gas-lighting, hate, ignorance, incompetence, lack of respect or care, inflexibility, harmful treatments, and more contribute to isolation, fear, powerlessness, and knowing it won't get better.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggression, suicadility, anxiety, psychosis have been VERY challenging. Autism - sensory, communication, countless hours of OT, PT, speech, etc takes its toll. The most difficult medical issues to deal with have been the aggression, the depression, the trauma, the suicidality, the mania and psychosis- the DISCRIMINATION, and the absolute and ridiculous lack of services and supports. EVERY UCEDD and LEND program should be required to discuss these issues. They should have a curriculum to recruit and teach future leaders and practioners. The Federal government should ensure that every state stops forced child relinquishment due to disability. Ohio has establised a specialized managed care contract and 1915(C) waiver with the goal to end forced child delinquishment due to disability.The Federal government needs to take a bigger role to make this happen. The autism community sould get away from high versus low autism and base classification on functional limitations and need for supports and services. A very significant number of individuals with autism have brain- based disorders such as schizophrenia, bipolar, and major depressive disorder. These individuals have very complex medical needs. They die at a MUCH earlier age of STROKE and suicide. And yet, they are discriminated against and left to die on the streets, institutionalized in prisons, and left homeless many of them psychotic.
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Name	Anonymous
Demographic	Autistic individual
Response	I have been diagnosed with OCD, PMDD, ADHD, complex PTSD (unofficially recognized), PTSD, severe anxiety, and social anxiety. During meltdowns, I engage in self-injurious behavior. Severe trauma has left me completely isolated, as I was not diagnosed with autism until my late 30s. This late diagnosis brings its own set of challenges, as I grew up feeling constantly misunderstood and rejected. I endured relentless bullying from peers and even teachers, leading to a deep sense of being "bad" and not knowing how to fit in as a human.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD, social situations are tough to navigate due to high masking, causes fatigue, mental, emotional and physical. Not able to sit still, stand for long periods of time due to hEDS, uncomfortable in a bra so staying at home is more comfortable than leaving the house, anxiety when I am not able to get info about circumstances I will be moving through so I know how to best prepare and care for my needs
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Name	Anonymous
Demographic	None Indicated
Response	• Determining what behavior manifestations are related to mental conditions and how to manage those on a daily basis • Expression of psychiatric symptoms may be limited, resulting in potential misinterpretations of behaviors • Lack of communication methods to identify feelings or emotions • Social interaction challenges can interfere with diagnosis as well as therapy • Increased aggression towards self or others and how to ensure the safety of all • Difficulty with transitions between home/school/work/other programs • Disruptions in daily routines due to physical health issues • Staff training and consistency • Lack of parent support and resources • Possible trauma • Difficulties with social skills, communication, empathy, and insight may hinder the therapeutic relationship and call for highly tailored strategies for apport-building, support, and interventions
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In addition to autism, my son also has severe anxiety and OCD, and exhibits aggressive and self-injurious behavior. Management of these behaviors has been an on-going challenge his whole life. Medications have helped a lot. He's also benefited from a switch from regular public school to a specialized outplacement designed for students with his behavioral challenges. Aside from school, his behaviors and severe anxiety currently limit what he's able/willing to do at home and in the community. He restricts his activities and avoids changes to his routine - deviations can bring on meltdowns and self-injury. As a family, our world has become very small.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	As a therapist at a public hospital, I work in a team of providers. We all treat individuals across a wide variety of presentations and identities, including many individuals with ASD. Numerous times I’ve heard therapists admit they feel they don’t know how to work with Autistic individuals, including those they are actively treating. It has historically been seen as a specialty— only certain clinicians have special training in working with neurodiverse clients— but increasingly we see Autistic folks in therapy and a clinical workforce who is unprepared to help them. Self-harm, social anxiety, generalized anxiety, depression and trauma are all rampant in this population but clinicians haven’t been educated in understanding how all these things may present a little differently and how to treat in an affirming way. One ACT clinician shared they were struggling to use their usual skills to help an autistic client they were working with; I mentioned that people on the spectrum sometimes struggle with abstraction, so ACT metaphors may not be supportive and it was the first they had heard about this. There needs to be movement toward all clinicians getting basic training in working with folks with ASD. We are doing a disservice to a large community by not.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In my case, as one of many trying to see if we’re on the spectrum. I’ve dealt with so many mental health issues that possibly could stem from being neurodivergent and possibly autistic. To the point of being suicidal.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety that stops normal activities
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Attention issues Nutrition Anxiety
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD like symptoms, mood disturbance including anxiety and depression, aggressive and self.injurious behaviors that increase in severity related to ASD level of functioning and lack of clinical upper in-virtu for individual and caregivers
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Name	Anonymous
Demographic	Autistic individual
Response	Misdiagnosis. Almost every autistic person I know was misdiagnosed at least once before getting their correct diagnosis. Panic attacks and meltdowns can look the same from the outside, but they are so different.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	when anxiety rises, you become so much more aware of everything. a panic attack can quickly become a meltdown if you're not careful.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Obsessive compulsive disorder, anxiety, and depression issues, combined with autism, are very difficult to treat with psychological therapies and medicines. It is difficult to find any combination that works to make individuals functional in the community so that they can begin to try steps to work toward getting a job.
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Name	Anonymous
Demographic	Autistic individual
Response	Social anxiety disorder - leads to difficulty advocating for ones' interests and participating in group activities.
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Name	Anonymous
Demographic	Autistic individual
Response	I'm right in the middle of Autistic Burnout, and fighting my depression to get motivation to do things I love to pull myself out of burnout is [profanity redacted] near impossible. For example, I used to be a HUGE reader, but I can maybe only read a chapter before I start to read the same paragraph over and over again, even on my favorite books. My anxiety also has a part in it because I've found more things to enjoy, but pushing past prejudices to continue to enjoy them is really hard. I love a bunch of different anime shows now, but growing up, people who watched anime would get bullied and ostracized. I have to put forth a lot of effort to watch anime more in order to get past my defense mechanisms.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Anxiety, social anxiety, ADHD, SIB, aggression, sensory processing disorder
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	despair
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Researcher
Response	ADHD, anxiety, self-injuries behavior, and suicidality
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	ADHD, Trauma, depression, Body focused repetitive behaviors
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety; eating disorders
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety and self injury
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My 19-year old son has a Pathological Demand Avoidance (PDA) presentation of autism. His ability to do anything depends on his level of internalized anxiety at that particular moment. He has had multiple multi-month periods of burnout during which he was unable to do virtually anything, including attending school. Around age 10 he began showing signs of OCD. By age 12 the OCD manifested into obsessive suicidal ideation. He didn’t want to die, but felt he needed to kill himself. He had not yet been diagnosed with autism, and we were unaware of the concept of PDA. [Typical of PDA, his eye contact was decent and he was able to develop friendships and appear sociable so multiple doctors and therapists had not diagnosed him with autism. They simply said he was a “complex kid” and difficult to diagnosis. None-the-less he was very confused by or unaware of most social cues, idioms, etc.] Due to the suicidal ideation and his impulsivity (potentially injuring himself), he went through several rounds of mental health hospitalization. During his first in-patient stay he received a clinical diagnosis of autism. We wish PDA was in the DSM then. It was another 6 years before we stumbled onto the term PDA. While a variety of medications and extensive mental health therapy had helped over the years, it has been our teaching ourselves about PDA and adopting a low-demand lifestyle for him and our household that has now enabled his OCD and suicidal ideation to dramatically improve.
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Name	Anonymous
Demographic	Autistic individual
Response	Finding safe care and support: A lot is heightened with my autism, senses, emotion, trauma. I was misdiagnosed schizophrenic and prescribed antipsychotics like seroquel, trasidone and risperdol; all caused adverse reactions but geodon caused the most painful night of my life. I haven’t recovered from the fallout of that night, after over twenty years of slow recovery. Autism NEEDS *affirming* care. The main downside of autism is the difficulty calming down after trauma (high glutamine vs low GABA in the brain) BUT we are also sensitive to medication that affects it, so tranqs or anti-anxiety meds etc quickly lead to dependency and even worse panic attacks, making them all but useless. Suppressing autism symptoms is removing coping tools and damaging capacity for calm. We need social support like group meetings and understanding therapeutic care. The side of the mental health care system that I’ve seen, the short time diagnosing and the subjective/unscientific means of assessment are not only despicable and pathetic but atrocious. I’m running out of words or I could tell you stories and you’d see why I see it in this light. I’ve seen many lives utterly ruined by cold uncaring doctors. I was committed by a judge the week of my 18th birthday while forced under the influence of high doses of meds that made me deeply confused and frightened. They heavily drugged me against my will before court to be assessed… think about that.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Unable to be outside of bedroom for very long most days. Extreme anxiety over: weather changes, how far away from home he is, experiencing something new, especially if far from home, needles (no vaccines, no bloodwork), medication-will not try or take any, hearing or viewing health concerns that are spoken about, or seen masking= extreme exhaustion, verbal abuse, misunderstanding between general society and what occurs within family/parents verbal abuse to family inabiltiy to explain feelings lack of accountability touching dirty dishes, garbage, dirt.... smelling most scents, but oblivious to own body oder inability to focus on school work
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	a) Getting timely help b) communication between professionals c) as can read/write talk, carers think her behaviour is deliberate
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety. Aggressive and self-injurious behavior. Inability of others to understand the root cause of anxiety and aggressive behavior. It is challenging to sift apart the behavior from the underlying need. Especially in a PDA autistic child, who is very good at masking and mimicking social behavior (despite being extraordinarily stressed by doing so)-- and thus may seem "normal," despite having the same needs and challenges as other autistic people.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety and depression medication options are extremely limited. The “trial and error” method of finding the right medication for anxiety and depression management is lengthy and dangerous. When I was diagnosed with Autism as a child, I was put through ABA to learn how to mask my Autistic traits. We now know that lifelong masking causes anxiety and depression. The suicide rate among Autistic people is alarming and is something that needs more public awareness. We need depression medication that actually works and doesn't have “worsening depression” as a side effect.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Inability to work, relationship issues, self harm
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, depression, aggression
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Name	Anonymous
Demographic	Autistic individual
Response	often misdiagnosed or missed in autistic people, i got misdiagnosed as bipolar
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenge of my entire life has been that I did not receive my ADHD diagnosis until I was 44 years old or my autism diagnosis until I was almost 46. I was mis-diagnosed with mental health conditions and given medication that was not helpful to me or caused unwanted side effects. For example, depression medication caused me to become agitated and limited my sexual function. Mood lability medication was not that troublesome but it didn’t help me and it cost me and my insurance a lot of money over time.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Untreatable depression and anxiety, obssesive thoughts lead to suicidal ideation.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	People with autism are frequently perceived as lazy and uncooperative. This makes it particularly difficult to function in the workforce, which is a social requirement to justify our existence.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Attention and focus issues, anxiety, and with long COVID brain fog and low mental bandwidth
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Significant challenges caused by co-occurring mental health conditions in autistic people is getting mental health care services in place to support the needs of the autistic community.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance profile (PDA) - makes traditional treatment options inaccessible and irrelevant
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Name	Anonymous
Demographic	Autistic individual
Response	I suffer from depression, anxiety, ADHD, suicidal tendencies and thoughts. I am also transgender.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My daughter has a PDA profile. This is extremely difficult and she often tells us she hate her body for the PDA. PDA has stopped our daughter from doing things she loves and wants, like gymnastics, going to events. She describes it as her brain desperately wants to do something but her body won't let her. This can be something like going to school, birthday parties, she wants to go but she cant. She physically isnt able to push her body through it. If she trys she will eventually have a very bug meltdown and then this impacts on her energy levels. Due to her PDA, she is an amazing master when she needs to be. Because of her "heavy masking" at school for year prior to her diagnosis, it lead her into burnout in 2023. This was an extremely challenging time for our family. Our daughter (11 years old) was not able to move, walk, toilet, eat, talk for months. Someone had to be with her 24/7. Her mental health was so bad, her panic attacks were significant and frequent. She didnt participate any form of education for most of 2023. Since burnout, our daughter is a different child. She is constantly anxious, always heightened, has frequent meltdowns and can be extremely verbally abusive to close family member especially her little brother (who is also autisitc). Managing her anxiety is very difficult as PDA will not allow her to take medication. Pur family life is completely different, it has impacted on all of our mental health and financial situation
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggression can be a symptom of pain or discomfort, instead of a mental health condition. When the underlying medical condition is resolved, the aggression may stop.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Social anxiety, self harm
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Depression and aggression
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I have been asked by many about the overlap with adoption and autism. Jodi Moore has some interesting theories and anecdotes, but we would love numbers and more understanding
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD and showing a PDA profile. With pathological demand avoidance the nervous system struggles and my child is very disregulated most of the time. This makes every day tasks/demands very difficult and simply saying no to something my child wants can cause a disregulation and “fight” response with explosive behaviours and words used
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, depression, isolation, ADHD.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance (PDA) must be acknowledged and addressed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Getting autistic relevant services for the co-occuring conditions and having them identified and acknowledged.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD and anxiety. Once again, I cannot afford any medication, which makes life hard. I could’ve finished college in half the time, if five cups of coffee per day wasn’t my substitute for medication. The executive dysfunction makes me feel like I can’t ever be a fully functional adult. Especially with tasks like cooking and cleaning.
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Name	Anonymous
Demographic	Autistic individual
Response	emotion regulation, depression, anxiety
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	There is still major bias in the mental health community to pathologize neurodivergent traits. Much more research and work need to be done to improve differential diagnosis.
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Name	Anonymous
Demographic	Autistic individual
Response	dysthymia anxiety adhd ocd personality disorders (schizoid)
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Name	Anonymous
Demographic	Autistic individual
Response	For me, chronic and persistent anxiety has always been the worst part of autism. Fear and guilt are my most common emotions. It is a challenge to call and make appointments just as much as it is to go out into the world. Many times, I’ve avoided going to get what I needed from a store because I was too afraid to speak. I get stuck in anxious thought spirals that will overwhelm me for hours, forcing me to sit in a room doing nothing until something breaks me out of the cycle. When I was younger, I would hurt myself because my emotions were too much and physical pain helped relieve some of the pressure. When you’re an independent adult who struggles to make phone calls and run errands, basic needs can become impossible to meet. Your health and problems become worse and worse until they are truly debilitating. ADHD adds extra layers of pressure. You have to expend extra energy creating systems so you can live on a basic level of functioning. I cannot work 40 hours, have friends, and take care of myself. Autistics have to sacrifice something in order to live without burnout, which can lead to more depression and suicidal thoughts. I am nearly 32 years old and will never have a proper family, simply because without supports I am not able to do more than work and stay alive.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autism with PDA has created significant challenges in regulating anxiety. Their “meltdown” is not the typical meltdown. Often needing to escalate and not be able to calm. It is difficult to even co-regulate with someone who has PDA. As social emotional cognitive awareness grows the symptoms intensify. These children can struggle to understand/express emotions. Behavioral therapy often fails to help, as behavior modification tools do not consistently work, 1-2-3- magic does not consistently work, and consistency does not consistently work. In fact, most of these strategies make it worse. Occupation therapy can help with the anxiety created by impaired sensory or motor skills. However, social situations (like s at school) increase anxiety to the point they will refuse to attend. School staff often do not know how to assist child and often these children ended withdraw from the school and homeschooled. The school staff struggled because they fail to see the reality of what is going on with child. Many caregivers can relate to the book “My daughter is not Naughty” and feel understood and heard for the first time. Once child is diagnosed with Autism with PDA lives change. The family and individual with PDA begin to understand and are able to assist the child with PDA better. There are children who symptoms meet PDA over what most are diagnosed with. Many of the parents feel helpless, hopeless, and alone.
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Name	Anonymous
Demographic	Autistic individual
Response	It's often a challenge to leave the house, which greatly limits job opportunities, and social interactions. As time goes on and everyone else gets better jobs, and gets better at social interactions, we (autistic people ) fall further and further behind our peers, which leds to worse and worse mental health outcomes as we feel more and more isolated and alone with little to no hope of ever catching up.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance Anxiety ADHD
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	High anxiety, fight or flight responses
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Complex PTSD needs to be researched as a comorbid condition with autism. Teasing out the difference between a trauma response to the rejection, misunderstanding, and aggression constantly directed at autistic people, and the neurotype itself could be of great benefit.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety PTSD
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance
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Name	Anonymous
Demographic	Autistic individual
Response	Trauma is one of the key mental health conditions affecting autistic people, particularly because autistic people experience traumas that the general population often doesn't, and because autistic people experience things as traumatic that allistic people find just unpleasant. Treating and supporting trauma in autistic people will have a positive impact on the rates of co-occurring mental health conditions overall.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, depression, ADHD, aggression, suicidality. Most importantly - Pathologic Demand Avoidance. My high-IQ PDA son, diagnosed with autism with a PDA profile in the US, has suffered greatly by more traditional research-based autism strategies. These strategies have completely the opposite effect for him than desired. Their use at school by supposed experts at ages 6-7 (despite my best efforts to educate them otherwise), caused severe trauma and resulted in significant mental health challenges to this day, even though he is only 11 years old - he is unable to attend school any longer, has extreme anxiety resulting in near-agoraphobia, is depressed, believes he is "broken," and was suicidal at age 7.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	adhd
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety and ADHD make it difficult for my daughter to enjoy her life.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Stuck in fight, flight or freeze, every action colored in trauma response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	anxiety, ADHD, anger, frustration
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	the barriers between service providers. OMHCs who won't treat people with primary autism. ABA providers who fail to welcome the relational or trauma focused work. etc
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has co-occurring PDA, DMDD, GAD, and giftedness. He does not present the way people expect an autistic person to present. He doesn't have any intellectual disabilities and he has advanced communication skills. But under his intelligence and communication skills, he has lagging social-emotional understanding. Because he seems so smart and affable, people don't realize he needs accommodation to understand social cues and to manage his anxiety. That anxiety grows under the surface and then explodes in aggressive and often unsafe ways. People assume his explosions are behavioral and what he needs is discipline. But the PDA dimension of his profile precludes the efficacy of conventional discipline.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression, anxiety, ADHD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Having a chance at success is a challenge when being heard and believed and getting proper treatment are utter failures
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Finding providers who aren't trying to use neurotypical metrics and methodologies for supporting autistic people. Therapists and other professionals pushing behavior modification and/or operant conditioning **does not** help to alleviate anxiety, depression, suicidality, etc. and yet these are the go-to methods at most therapy practices. We need more neurodivergent-affirming professionals. Finding intensive (acute care, PHP, RTC, etc.) level care that is neurodivergent-affirming and affordable/accessible. Mental health challenges are quite literally life threatening and yet **appropriate** care is often not accessible. Negative experiences with therapists and medical professionals turn off autistic 'black and white' thinkers and refusal of therapy becomes another roadblock.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	This is a huge question- it also highlights the importance of the need for services that are delayed (missing critical Stages of development or excerbating the problem) the tax payers will pay more for institutional needs in the long term if remediation is not timely. We have 4 autistic children among 4 genetically related siblings - my child has ODD and ADHD ODD can escalate into conduct disorder which then involves law enforcement. The wait list and interminable wait times are grossly apparent
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety. My five year old had a panic attack today and could not attend kindergarten.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Not being able to function in society, but not disabled enough for support resources leads to isolation and desperation.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Anxiety and PDA (pathological demand avoidance) make it hard for my daughter to access school. The school environment is not accessible for her, and while her teachers are responsive, they know very little about supporting autistic kids with PDA profiles. She tries very hard to do everything right at school and is constantly on high alert to process all of the sensory input, the expectations, the social interactions, and the content. The school work is easy for her, her reading and math are above grade level, but school is very very hard. She masks extensively at school and her teachers say she is “fine”, but she comes home broken. Many days she is not able to go at all, and she spends those days huddled on the couch with a blanket over her head. Her attendance this year is around 80%. She loves learning and wants to do well, but school is hurting her. This has had a huge impact on her mental health, and it has also affected our family since we need to take unpredictable time off from work to stay home with her. Since she started school, one parent has dropped to part time employment. We are lucky that our jobs are flexible, our supervisors are supportive, and we are able to afford the pay cut.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	The stress of not liking the way I am mixed with not wanting change but then hyperfixating on trends. Things like that combine I find difficult to manage
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety ADHD Depression Suicidality PDA
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Firstly, lack of SEND training for education professionals. I speak from experience as a teacher. I have had to educate myself. 2 of my children have suffered because of a lack of understanding by professionals. Masking is a big issue. Anxiety, suicidal ideations, self-injurious behaviours, ADHD etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Suicidality, ADHD, anxiety, depression, eating disorders, PDA.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA, OCD, anxiety, ADHD, aggression, impulsiveness, depression, perfectionism, separation anxiety, ADHD are all things we struggle with. I think the root of the issue is anxiety.
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Name	Anonymous
Demographic	Autistic individual
Response	In my case it's anxiety, social phobia and cptsd.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The way other mental health conditions interact with autism seems to be poorly understood. For example there is plenty of information on Autism alone and ADHD alone, but not a lot about the combined experience of both and what treatment/strategies will work best for people with both. Autistic people can be pushed into modalities that don't work for them, like CBT. The presence of trauma can prevent or delay diagnosis of autism, meaning it is longer before children get the support they need. It is difficult to find a psychologist or mental health service that is able to work with someone on different facets of mental health (ie I can help you with the trauma, but not the autism or ADHD) but it is hard to separate out our experiences into what is due to being autistic and what might be due to a other mental condition. Mental health professionals are not good at picking up where autism might be a contributing factor to mental illness. As an undiagnosed adolescent and young adult I interacted with at least 6 different mental health care providers for anxiety and depression, none of which picked up on autistic traits although undiagnosed autism and burnout was a big contributor to me experiencing these things.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological demand avoidance resulting in chronic nervous system overwhelm, aggression and shutdown.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Same as previous question + maintaining healthy interpersonal relationships
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	PDA (pathological demand avoidance/persistent drive for autonomy). Society's lack of understanding makes school, aftercare, extracurriculars, and workplaces inaccessible to many in this group.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Son: anxiety/low mood. Daughter: severe anxiety, severe demand avoidance, low self-esteem, ADHD, aggression/violence, skin picking, over eating, suicidality.
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Name	Anonymous
Demographic	Autistic individual
Response	A lot of my mental health struggles were just signs of being autistic but misinterpreted because I was undiagnosed for almost 27 years. Like, I was misdiagnosed as having bipolar disorder when a lot of my mental struggles should have been correctly diagnosed as being autistic. Allistic mental health counselors also have a hard time understanding me or helping my depression and anxiety though still. Even when I disclose I’m autistic. They need more training on how to help autistic people, such as alternatives to CBT which I’ve found very unhelpful.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Pathological demand avoidance
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Again, attending school
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, ADHD, depression,
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Anxiety, PDA. However its also important to study issues from a sociological viewpoint, as a result of living in a society built for neurotypical people, rather than as a pathology.
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Name	Anonymous
Demographic	Autistic individual
Response	Others ignorance
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Difficulty accessing neurodiversity affirming treatment for mental health conditions. Many approaches used in the neurotypical population are ineffective and can be harmful to autistic people. Oversimplification and misunderstanding of reasons behind mental health difficulties. Lack of understanding how sensory differences can impact both mental health and treatment for mental health.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of understanding and compassion, behaviour seen as a choice rather than panic response
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Name	Anonymous
Demographic	Autistic individual
Response	Pathalogical Demand Avoidance!
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological Demand Avoidance (an anxiety-based need for autonomy, an atypical presentation of autism) has led to severe strain on our entire family, including siblings and parents. It causes very significant stress to our autistic adult child. This leads to emotional volatility, and disruption to functioning of the whole family every single day. We have to walk on eggshells constantly to avoid exacerbating adult child’s severe anxiety and consequent responses. In addition to this, our child is diagnosed with anxiety, depression, gender dysphoria, and ADHD. Each of these has an impact on daily functioning and the whole family. The biggest impact of course is on our adult child, who is currently experiencing autistic burnout and is unable to engage in any activities outside of their bedroom. They also have a history of self harm and suicidality. PDA is the biggest contributing factor.
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Name	Anonymous
Demographic	Autistic individual
Response	I have bipolar disorder, which is mostly controlled by medication, but still have symptoms of mania and depression from time to time. Also, I can be quite impulsive and even aggressive. I also have ADHD. I've never been self-injurious.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Most significant challenge is holding a job. Her anxiety prevents her from wanting to drive or be in crowded places such as a grocery store. Long history of self harm has led to multiple hospitalizations and deep scarring all over the body.
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Name	Anonymous
Demographic	Autistic individual
Response	I think researching the co-occurrence of C-PTSD would be worth while. Based on what I've seen in the community and as an autistic person myself, we all seem to ahve the endured life long trauma from having to conform and exist in a world that is not set up for autistic people.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	exhaustion, advocacy, looking after your own children, getting and keeping a job
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Depression and ADHD
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Name	Anonymous
Demographic	Autistic individual
Response	-Depression -Anxiety -ADHD -OCD -PTSD
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Again, the challenged stacking make them all the more difficult to deal with. Anxiety often leads to aggression or self- injurious behavior. Self- injurious behavior leads to depression. etc
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Name	Anonymous
Demographic	Autistic individual
Response	Speaking only of my own experience: depression, generalized anxiety, social anxiety, ADHD, self-trust and self-esteem, burnout/extreme fatigue.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Overlap in symptoms and effects can muddy the waters making it hard to determine what kind of help would be most beneficial and even identifying what the root concern is. E.g. depression or anxiety can come on as a natural result of difficult experiences that autistic individuals need to navigate on a regular basis. Without addressing the issues that underlie everything, you can’t really help the person with their depression or anxiety. Indeed, anectodally those can clear up on their own or at least be much less severe if the other difficulties are effectively addressed. This requires mental health professionals to be better educated on this though and that’s been severely lacking.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Depression and suicidality
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	i have adhd and it impacts my ability to plan and organize my life. i often miss deadlines and make mistakes despite putting in lots of effort. i am currently trying to apply to schools and get a visa for studying abroad, and it's extremely challenging and exhausting. adhd also impacts my ability to socialize, because i accidentally interrupt people constantly when i get excited about what they are saying, and i forget a lot of what people tell me despite being very engaged and interested while they are telling me. it hurts people's feelings when i don't remember important things they've told me, and they often assume i didn't care or wasn't listening, even though i really did care. i have lots of social anxiety (i think as a result of growing up autistic) and find it very challenging to do basic things when i'm out in public, like ask an employee where to find something. i often don't understand how everyday things are supposed to work, like checking in at a doctor's office for an appointment, and get very anxious to enter the building and try to figure out where the front desk is and what to say to the receptionist. anxiety will prevent me from texting a classmate asking if they want to meet up, and will even make me doubt whether i'm remembering their name right or if i'm about to text someone random. i'm anxious to open texts because i'm scared of what they'll contain, and i don't know how to respond to them and am overwhelmed trying to put my sentiments into words.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety Rumination Executive dysfunction
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Name	Anonymous
Demographic	Autistic individual
Response	If the individual or parent was given the funds and resources instead of the vendors most of the problems could be managed.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety is, I think, the biggest challenge, but since it's tied to environmental triggers, the challenge is really changing the environments. Autistic anxiety tends to not come out unles there's sensory overload and/or something triggering in the environment.
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Name	Anonymous
Demographic	Autistic individual
Response	I have several co-occuring mental health conditions including ADHD, depression, anxiety, PTSD, OCD, and a history of self-injurious behavior. The most difficult part of having autism on top of those for me personally is trying to regulate my emotions and do self-care when I'm in autistic burnout because those take so much energy to do. It's hard to consistently go to therapy appointments as well due to being so exhausted from masking my autistic traits and being in sensory overload all day at work as well. I'd also say that my mental health conditions can easily be triggered by things that my autism causes me to do like making social mistakes (oversharing, talking too much, missing social cues). This can lead to me falling deeper into a depressive episode, having heightened anxiety, and, in more severe moments, urges to self-harm.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Many people with profound autism are very aggressive. They get kicked out of programs and their parents are left to care for them alone as they age
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My child has experienced depression, aggressive behaviours towards me including some violence and has suspected EDD. The most significant challenges of these conditions have been fear and unwillingness to properly engage with us as a family within the education system and an unwillingness within CAMHS to prescribe until recently. The very minimal medication my youngest child now has, has made a world of difference. My child is now productive, positive and happy. All violence has stopped. I have also paid for my child to have counselling for the last 2 years and this too has had a positive impact. This is not something I should have had to pay for myself, but it was absolutely essential for my child's and my family's wellbeing and probably for society ultimately because my child now stands a chance of being economically productive and not a danger to anyone else. Lack of funding of mental health services means people are left to develop harmful behaviours. During my child's worst times, I was on the PEGS page on Facebook for support and the majority of parents on that site had children who were autistic.
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Anxiety, ADHD
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have been depressed bordering on suicidal and that has been a more significant problem than any physical health issues.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Autistic "agitation" or irritability, ADHD/ADD, anxiety, impulse control, emotion regulation, depression
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	I have a diagnosis of depress, anxiety, ADHD, situational mutism, and sometimes suicidal ideation. But all of these take a back seat to PTSD. Living in a world designed for neurotypical people, where the experiences of autistics are rarely if ever considered, where our perspectives and input are values and integrated into decision making and space/service design, is a fundamentally traumatizing experience. The lack of inclusion of autistics within reach done *on autism* is a stark and painful example of this. The "care" provided to autistics at the Judge Rotenberg Center is undeniably traumatic. Having official diagnostic criteria describe our differences in terms of deficits, in terms of how uncomfortable we make neurotypicals feel, in terms of how inconvenient our behaviors are for neurotypicals, is fundamentally traumatizing. Just like autism is extremely underdiagnosed in women and non-binary people, PTSD is severely underdiagnosed in autistics, with devastating effects. This requires a two-part change. First, we must improve the diagnostic criteria of PTSD and train autistic support services and clinicians to identify how PTSD presents in autistics and equip them to help. Second, we must redesign the services we offer (eg the complete discontinuation of shock therapy and ABA for autistics), the care we provide, the spaces we create, the entire society we live in, to include the perspectives and needs of autistic people to prevent traumatization in the first place.
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Name	Anonymous
Demographic	Autistic individual
Response	I've suffered from severe depression ever since a severe TBI as a kid. I should have had a hole put in my head to relieve the pressure, but the doctors missed the problem because I was a girl and thus, apparently, was crying for no reason. They didn't notice I had no memory because they asked my brother the mental acuity questions first. Perhaps doctors, nurses and EMTs should ask different questions. However, even then, they should have noticed that I gave them four different birthdays, aka the one question I hadn't gotten the answer to. When it comes to depression treatment, all drugs and therapy have been useless. The only thing that has been useful was teaching myself how to carefully control my thoughts. My focus is on mood stabilizing. What goes up must come down and when I go down, it's very down. Why a doctor never suggested such a thing, I will never understand. Anxiety frankly causes me more trouble today than depression. Mainly because I was born physically anxious. I say physically, because it's not coming from stressed thinking like for most neurotypicals. No, my brain is about as zen as it can be at this point and yet, I still deal with constant body tenseness. No, thus far, I'd yet to figure out any work around other than staying away from things that might trigger increased tension. Doctors have been basically useless in this area. Most don't know anything about treating anxiety that isn't brain based and I can't take anxiety meds because I'm in pain.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	anxiety
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Name	Anonymous
Demographic	Autistic individual
Response	Difficulty determining which mental health condition is causing which symptom/how to manage it, anxiety and autism symptoms aggravating each other and making functioning and new situations much more difficult, depression and social anxiety being formed or made worse by societal treatment of autistic people
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Name	Anonymous
Demographic	Autistic individual
Response	Executive dysfunction (ADHD-i), depression, anxiety, emotional regulation issues
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All of those listed.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, AdHD, aggressive behaviors
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Name	Anonymous
Demographic	Autistic individual
Response	Depression and anxiety appear to be pretty common (at least from my experience). Its pretty easy to become deeply concerned over issues such as weather you turned the stove off or not or when you realize that you forgot to do something at work and are afraid of getting in trouble. Depression is usually the result of loneliness along with being disrespected by peers and employers. You feel that no matter how hard you try to be like a neuraltypical person and no matter how well you do your job and try to develop a close relationship...the autism is all they see at the end of the day. Words cannot describe the frustration, anger, and sadness that comes from that. I am aware that some of the issues can be dealt with through self-improvement, but the stigma and prejudice Is still there. The awareness is there, but the acceptance isnt.
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Name	Anonymous
Demographic	Autistic individual
Response	I have ADHD in addition to autism. For this one, it is the lack of coverage for QUALITY mental healthcare with professionals who KNOW autism and ADHD.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	To obtain quality dcotors and therapist who are TRAINED to treat autism and co occuring conditions, one must often pay out of pocket
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety affects appetite and digestion, makes one "tired and wired" or deal with insomnia. Anxiety impacts substance use (I can rarely use any substance - sugar, caffeine, alcohol - without having a severe crash or starting to become addicted/dependant; have witnessed similar dynamics in family members). All of these make daily routines difficult to maintain. Also contribute to further social isolation and depression.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety, Anger: outbursts that last all day, self injurious behavior & adhd
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Untreated/undiagnosed ADHD and anxiety (especially combined with autism) can lead to alcohol abuse (to self-soothe social anxiety/rejection sensitivity dysphoria, help with masking, and to dopamine-seek). More research is needed on effects of stimulants for AHDH on people with both an ADHD and an autism diagnosis (vs ADHD alone).
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Autism merging with psychotic illness: restricted interests--->over valued ideas--->delusions. Irritability and "outbursts."
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggressiveness, ADHD
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has been diagnosed with ADHD, MDD, anxiety And borderline personality disorder. He has been hospitalized for suicidal ideation and has self injurious behaviors. He was in a residential program for 4 month. His recent evaluation by a team of psychologists recommend long term residential mental health placement.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	For 20 years I had OCD and GAO. It is incredibly difficult to navigate the NT world, with all of its inconsistent, irrational, unexplained rules. I found it to require constant hypervigilance on my part.
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Name	Anonymous
Demographic	Autistic individual
Response	I've faced anxiety and depression in the past, but through learning what works for me and what doesn't, I've found a path that allows me to lead a fulfilling and happier life now.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The aforementioned increased likelihood of sexual abuse, and the additional emotional and physical challenges that causes. Many of us were not diagnosed until adulthood, sometimes late into our lives. This creates a situation where we do not understand ourselves and the supports we need to be successful. We often lose hope and fall into depression. We are under employed and unemployed at higher than neurotypical rates, even those of us with advanced degrees. If we have been stay at home parents, and then get divorced, we often fall into poverty because we have no access to supports that will help us to find and retain work that we can support ourselves with. This is not our fault, it is the responsibility of our social safety nets to help those of us born with neurological illness understand ourselves and learn strategies we can use to stay afloat in the shared economy.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, anxiety, anger, self harm, suicide ideation
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Name	Anonymous
Demographic	Autistic individual
Response	I, personally, don’t believe ADHD to be a mental health condition, as it is a disorder that is traced back to childhood. A challenge that can occur related to co-occuring mental health conditions, chronic or not, is lack of protection against discrimination in the workplace if they are hospitalized (voluntarily or otherwise).
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More research should be focused on providing better medication management for externalizing violent behavior. Relying on antipsychotics isn’t ideal because of side effects and not really being efficient
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Being rushed Not giving enough attention to the individual to describe what they are experiencing Not taking us seriously
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety and hyperactivity affect a whole spectrum of my autistic child's daily experiences.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	That far too often Autistic people are missed because they majority of mental health professionals don't have any idea what an actual autistic person is. Instead they label us with anxiety, depression, etc. when we are responding to an unsafe world that continues to marginalize us. This is worse for genders other than male, and anything other than white. They are so afraid to consider Autism because of the horrendous stigma associated with it in our society, so they label you with anything else other than that. This means appropriate medical conditions will be missed because they won't see the connection because you are Autistic. Autistic people also lash out because society is not setup for us, so we are reacting to the oppression we are experiencing. This includes in legal circles where being autistic is seen as incapable of existing because it is seen as a mental health disorder. We are humans that deserve to be able to live the life we desire/need, without being oppressed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Other
Response	Same issue as 1st question...focus is misplaced. I don't want more help dealing with mental health triggers. I want to avoid the triggers. If the expectations re: my frequency, pace and depth I'm able to contribute within group structures was adjusted I'd be able to self-manage and regulate.
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Name	Anonymous
Demographic	Autistic individual
Response	anxiety (accommodation and compassion would help with this), ocd
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring mental health conditions can occur as a result of burn out, overstimulation, clarity or knowledge on how to recognise what these symptoms look like in an autistic person and again is highly individualised, but that there can be clear and compassionate support and education that not only destigmatizes these symptoms by bringing awareness but also the importance of autistic learning and listening to how these needs are communicated and acknowledging the ways that these needs can not only be met but shared and expressed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Thinking about impact, one thing I notice is that when you have these multiple disorders, it’s really challenging to find strategies to address needs. For example, Caleb is diagnosed with autism, anxiety, and ADHD. But there are strategies that help with ADHD that are difficult to utilize when you have anxiety, for example. The combination of needs can get really overwhelming, and can also be difficult to explain to others when you are seeking accommodations and support. I think a HUGE need is for more education for neurotypical adults (employers, medical providers, etc.) to have a better understanding of neurodiversity and how to support neurodiversity (not through trying to force autistic people to act neurotypical, but by listening to the voices of autistic people about what would meet their needs). It’s very difficult for autistic people to be employed, to access services as adults, etc. – often because of the stigma associated with the diagnosis or with needing any kind of supports or accommodations. I think all medical providers and community providers, as well as educational professionals, should have required neurodiversity-affirming training as part of their job preparation.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD, anxiety
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Many autistic people happen to also identify as trans. As a trans autistic person myself who has conducted qualitative research to better understand how queer, trans autistic folks create and define their identities, I want to be clear that I believe that autistic and trans are two identities that a person can have, but are not co-occurring medical conditions. With that being said, there are many societally biases against both trans and autistic people, and we can see that in the legislation being passed preventing trans youth from accessing gender affirming care. Some states, like Georgia, even want to prevent trans youth from access gender affirming care because of the fact that there are trans autistic people. I believe that there should be more services and policies in place to protect trans autistic youth and allow them to receive the gender affirming care that they deserve.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggression, self injurious behavior, and general lack of ability to regulate emotions is detrimental to daily life.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD makes it very hard for other early interventions to work. It makes it incredibly hard for families. Finding care and therapies for both is incredibly time consuming and extremely expensive. Parents need someone to help coordinate care and only the very, very wealthy can afford that. Schools are poorly equipped to support students with these co-occuring conditions and they are not given adequate support to learn. These is poor understanding of this occurrence in girls, in particular. It is very hard to distinguish autism symptoms from ADHD from anxiety so diagnosis and monitoring is very hard and, again, falls so much on families. There are not nearly enough providers or affordable providers. Family stress is significantly amplified and good parenting practices are not just logical. Good approaches require unique training - and that training is very expensive, usually offered by private practices if available at all.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Pervasive Drive for Autonomy (PDA) profile of autism. Gender dysphoria. PTSD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son's most significant co-occurring psychological condition is intellectual disability. This affects everything from being able to learn, remember, hold a conversation, navigate public transportation, purchase something, etc.. He will never be able to live independently because of this. The second most significant condition is attention deficit disorder. This keeps him from following a conversation, learning in a classroom or other situation, and following directions, which could be dangerous when he's an adult.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety and ADHD
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Name	Anonymous
Demographic	Autistic individual
Response	I have struggled with suicidality and an eating disorder, but I think experiencing eating disorder treatment was the most challenging thing I’ve faced.
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Name	Anonymous
Demographic	Autistic individual
Response	Being given the wrong treatment by mental health professionals, combined with (and likely caused by) a lack of mental health professionals who are themselves autistic, or at least educated about the autistic brain. I was diagnosed with depression and anxiety long before autism, but the treatments involved being more social, masking more, going to places with more sensory input, etc. I was also put on many SSRIs, which are known to affect autistic people differently. I now pay $160 per appointment to see an out-of-network autistic therapist, because I don't trust non-autistic therapists to understand what's actually going on in my brain.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	obsessive compulsive disorder, suicidality
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Name	Anonymous
Demographic	Other
Response	Most people don’t know how mental health conditions are affected by autism.
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Name	Anonymous
Demographic	Autistic individual
Response	Again it varies. But I do get anxiety and depression time & time
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	aggressive and self injurious bahaviors
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, self injurious behavior
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Since there is such frequent overlap in symptoms from one mental health diagnosis to another, it's difficult to parse out which symptoms are solely "autism" symptoms and which are symptoms of another diagnosis. The DSM-V-TR has yet to catch up with self-advocacy efforts from those on the spectrum and living with other mental health conditions, and providers from all disciplines tend to not receive training on neurodiversity unless they specifically seek it out. Additionally, mental health conditions including autism are so frequently caricatured in various media that public misconceptions and judgments about this population abound. There is an insidious assumption within society in general that having a neurodiverse brain is somehow a comment on one's intelligence or capabilities, especially in the workforce. Finally, self-advocates tend to receive a lot of pushback, and mental health is regarded as an extremely touchy subject by a lot of people.
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Name	Anonymous
Demographic	Representative of advocacy organization
Response	aggression, stressed, confused, anxiety
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Attention deficit injurious behavior
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Lack of understanding in schools and the community
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	When seeking out services of support, often they want to box people into neat categories. But when you have a child with Autism and ADHD, the boxes blend.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The lack of entry into traditional mental health services is massive-every wrong door. Providers lack the knowledge, training, and willingness to serve ASD and SMI jointly, find reasons to prevent admission, and often find many ways to prematurely discharge patients if admitted. Environments of care are not set up to address sensory issues, provide for sensory regulation spaces, and often place this vulnerable population in a position to experience distress. Crisis systems, including 988 are not trained effectively (or at all) to address this population and instead further increase the likelihood of police response and a negative outcome. CCBHCs and URCs are not accessible to those with ASD and SMI, again, many of the reasons listed above. State mental health systems and statutes exclude treating patients with ASD-pushing their care to human services agencies who are not equipped to address the mental health needs. This leads to unserved needs and continued suffering. We have so much work to do and need to force government systems to integrate-not merely suggest or show this as best practice-because left to choose to do better-the have not and will not.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	They are ALL significant challenges in that this culture and society does not truly accept our neurotype and phentoypes are a normal and natural expression of human genetics. This means that, no matter our co-occurring mental health conditions, or their co-morbid physical health challenges, we are constantly beset by devaluation, dismissal, derision, gaslighting, and more and this is FROM THE MEDICAL AND MENTAL HEALTH PROFESSION, before we even GET to daily interactions and engagements. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8115954/
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Trauma/PTSD; depression; anxiety; ADHD; suicidality; co-occurring developmental disorders such as Turner's Syndrome, Klinefelter's Syndrome, etc.; psychosis; bipolar disorder; dementia; intellectual disability, gender dysphoria
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Name	Anonymous
Demographic	Autistic individual
Response	Inability to hold jobs, discrimination in workplace, neuronormative bias, and failure of SSA to appropriately support these causes of autistic burnout and related depression.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Suicidality.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has behavioral pathologies that are pervasive and can severely compromise well-being, to the point of being fatal. These include aggression, property destruction, and elopement. Aside from death, these "challenges," are traumatic and potentially lethal. Besides being traumatic for everyone involved, this results in the need for emergency medical treatment, crisis and challenges locating staff assistance. This imposes enormous costs on families and care systems. Reducing the frequency and intensity of these pathologies needs to be a goal for autism treatment and research, as they can result in death or further serious disability.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	DDD needs to stop providing parents as paid providers to those under age 18 as it is causing mental health issues for the members. It is creating a reclusive environment, families quitting jobs and pulling kids out of school and day programs to get paid and capitalize off their children. Members deserve autonomy and need to be away from parents.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD, Severe Intellectual Disability, OCD, Specific Phobias, Elopement, property destruction.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our daughter is on medication for anxiety and depression. She did not like the side effects from the ADHD medication she was on. She also has thoughts of not wanting to be here any longer.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Pathological demand avoidance and aggression
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	my son struggles with aggression because of his limited communication skills and inability to focus on one task for more than a few minutes.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Severe challenging behavior like aggression to others, aggression to self, destruction of property, eloping (i.e., running away)
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Firstly, I do not see aggression or self injury as a stand alone mental health struggle, these are symptoms that are used to COMMUNICATE struggles. Anxiety is a MH condition that is commonly seen, this appears related to sensory needs, being overwhelmed in their environment, change and lack of structure or routine. Depression appears often and can be related to a lack of PERMA+ and the inability to engage in meaningful activities, build positive relationships with peers (as many relationships are with paid supports or family), and not being able to flourish in their life's. The lack of choice and decision likely also impacts the development of depression. In addition, I think the most underdiagnosed and often overshadowed MH condition that impact people with IDD is trauma.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Depression
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety, depression, auditory processing issues, sensory processing challenges, suicidal ideation and ADHD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Depression Suicidal ideation Anxiety
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Executive dysfunction making it hard to take care of basic hygiene (brushing teeth, bathing). Having a hard time making phone calls for appointments, going grocery shopping, cooking, and keeping up and paying bills which further exacerbates depression and anxiety. The anxiety makes getting a job difficult due to having anxiety and having to have interview to which eye contact and certain characteristics being more appealing to an interviewer which furthers ableism. Meltdowns due to sensory overload can cause autistics to self harm. All the these issues go back to the case of high suicide amongst autistic individuals.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, ADHD, Suicidality, depression
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	Aggressive behavior toward others, often intractable requires day and residential care from experts; not young people making barely minimum wage. Complex people need complex care solutions. Impulsivity leads to elopement and death. Self injury leads to blindness, skin injuries, open wounds - it is a terrible life for anyone and again, it is being ignored for deference to "neurodiverent" populations. They need to be heard, but those significantly impacted by ASD who cannot cross a street safely or be alone safely need YOUR attention - the federal government is ignoring this very difficult situation. Families need 3 or 4 people at home to be sure they can restrain their loved one when they become dysregulated. What does this mean? 911 calls, hospitals, ER - repeat. No one can work and can become bankrupted. It is happening every day throughout the country (and world). PAY ATTENTION. Write policy for increased funding and accountability to serve "complex autism" needs.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Everyone has their own unique challenges. I don’t think one stands out more than another
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	These co-occurring mental health disorders add a layer on top of autism that makes it difficult to function.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety is the most significant co-occurring health condition that causes challenges in autism. I struggle with mental health, and with my mental health a lot of the time it’s simply a challenge to get motivated to do things in public. I think the anxiety sets in when there is a lot of noise and many people. This makes it really difficult to concentrate and it also makes you feel uncertain of your own feelings. Anxiety can make you feel inadequate and that can cause sadness.
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Name	Anonymous
Demographic	Researcher
Response	As a suicidologist, we don't know much about suicide and autism. But casually we find that there are increased risks, and even more so if they also identify as a racial/ethnic minority or a gender/sexual minority.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Anger
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	As adult, developed schizophrenia, later, schizophrenogenic bipolar with seizure disorder. Never aggressive. Withdrawn and sensitive; could not tolerate any sight of aggression.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADD/ADHD,. It is so difficult to get medication. We have an incredible doctor, but everything month it is so hard getting the Rx on time and the availability. My son's ADD/ADHD is very severe and the dose is not strong enough and trying new Rx and different doses. If it was not for Medicaid we would not be able to afford as one medication is $700 for one month. And that is only 1 of his 5 medications.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	Limits engagement with the community. (interferes with activities, impedes taking advantage of opportunities, etc) Lack of understanding by others / diagnostic overshadowing (people assuming difficulties are due to autism), which can result in improper treatment. Reduced quality of life and, in many cases, longevity. Extended mental health difficulties will also negatively impact physical health.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety leads to physical sxs, meltdowns, increased perseveration on feared situations Low frustration tolerance leads to feelings of hopelessness, SI and suicide attempts, flight behavior, aggression, self-harm; prolonged screaming in childhood made it impossible to go to church, shop, get a babysitter, have social playmates ADHD-impaired ability to learn and respond appropriately to situation, increased danger socially OCD-difficulty with transitions, increased agitation with triggers, delays in accomplishing tasks
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	All of these co-occurring conditions mentioned can be addressed by OT and may be related to sensory functioning. ABA is trying to address these without proper training and causing detriment to children as a result. Anxiety is not a “behavior”, nor is depression or ADHD. These mental health co-occurring conditions can impact every occupation and role in a child’s day to day life- the occupation of play, leisure, sleep, daily living, reading, writing and the list goes on.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I believe my son's biggest challenges are tied to his combined ADHD. After [PII redacted] takes his extended release ADHD medication, he's able to focus for a few hours and really demonstrate what he knows and what he's capable of. Once that medication starts to wear off, he's unable to focus and to someone that wouldn't know him, they would think he can't do something (i.e. reading), but this isn't the case. As a mother of an autistic child and an employee of a nonprofit autism advocacy group, I see how challenging ADHD is for autistics with it. When their brains can't calm down, it makes it next to impossible to do things independently.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Agressive or self-injurious behavior, anxiety, trauma, suicidality
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety, adhd, being a people pleaser susceptible to narcissistic abuse
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, panic attacks, ADHD burnout, forgetfulness, autistic burnout (physical, mental and emotional).
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD was a huge problem when my son was younger - it made everything school-related extremely difficult. He started having anxiety & depression in middle school due to bullying, and was admitted to a psychiatric institution in 9th grade for suicidal ideation. He still struggles with severe anxiety that keeps him from going out into the community.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	health care providers and social services agencies do not know where the autism ends and mental health concerns begin. This is especially relevant when applying for SSI since symptoms presented from the autism (an eligible disability) could be interpreted as stemming from an ineligible mental health disorder, resulting in an erroneous denial of benefits.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression and anxiety are the co-occurring mental health conditions that a majority of autistic people have, and those conditions greatly affect autistic people’s ability to socialize, to find work, and to take care of themselves (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3355529/). Autistics tend to have higher anxiety due to sensory issues, communication issues, changes to routine, etc. Anxiety increases an autistic person’s social ineptness, leading to social exclusion, solidarity, and seclusion. Because of social anxiety and a lack of community and support, autistic people, especially autistic women and those with comorbidities, have a greater risk of depression. ASD individuals have a higher risk of suicidality than those who are not autistic or neurotypical (https://molecularautism.biomedcentral.com/articles/10.1186/s13229-023-00544-7). Accessible neurodivergent-affirming mental health professionals, early diagnosis/ASD evaluations, and inclusive practices to diagnosis can help many ASD individuals receive the mental health care that can combat these growing statistics.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	In the children and youth that I follow with ASD, their most common accompanying mental health conditions are difficulty with anxiety and with hyperactivity and focus/attention. Behavioral interventions and medication can be very helpful in helping the child cope with these conditions.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Appropriate emergency services, such as CCIS units, and PHP's for those with I/DD and metal health needs
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Name	Anonymous
Demographic	Other
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Self harm (cutting, punching self) Inability to choose or decide Confusion Persistent feelings of rejection and isolation, social ostracization, anxiety depression
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Name	Anonymous
Demographic	Autistic individual
Response	Borderline personality disorder is co-occurring for me. The most significant challenges are the emotional dysregulation & interpersonal challenges that I experience from both Autism & BPD. This causes a lot of suicidality/injurious behavior for me. It’s really hard to cope with these in the workplace
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Name	Anonymous
Demographic	Autistic individual
Response	Depression and anxiety are constant and not even medication helps. I've already had 2 suicide attempts in my past. Alexithymia and depersonalization make it more difficult to understand what I feel.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	My kids developed PTSD from an authoritative school program and seclusion and restraints and ABA. PDA hasn't been recognized here until very recently. They are all sad and triggered often and trying to recover from burnout. They can hardly tolerate going out much anymore either physically or emotionally. ADHD makes life difficult, especially with extreme executive dysfunction from ADHD and PDA. Demand avoidance from things that you WANT to do is distressing. It's worse in burnout. The emotional dysregulation is difficult. I've learned how to do drywall well.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I see signs of anxiety in both of my autistic sons ages 3 and 6. I think this is due to inflexible thinking and rigid senses of "right" and "wrong." They are both unusually distressed if there isn't a schedule or set of predictable and consistent rules. They feel comforted and confident when they know how things will unfold, or what they are expected to do. When this is unclear, they show signs of anxiety (e.g., wringing hands, holding breath, having an intense meltdown). Both children seem scared of making mistakes despite us as parents actively endeavoring to create a home life in which mistakes are seen as normal, as part of learning, as part of being human. An example involves our younger son. He went to a Montessori school when he was 2, and he sobbed and clung to his parents every time we dropped him off for almost a year. Eventually we changed to a preschool that had more structure, and on day two, he happily left us and he loves his school. We think that the Montessori environment overwhelmed him with choice and that he was worried about doing something "wrong." He needed more guidance (e.g., "now we're all going to play with blocks") and is now more confident in making his own choices. We as parents are worried because it seems likely that both of our boys are inclined toward anxiety BECAUSE their brains are inclined to black-and-white thinking.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Many concurring mental health conditions are difficult to address since mental health resources have generally been over capacity post-Covid. Getting ADHD medication and access to mental health care providers specializing in autism is impossible. We don't have enough access to specialized care in addition to having to wait for general care and supply chain issues. There are not enough general mental and behavioral health providers with experience treating autism (which I have seen first hand as someone working in primary care after working in hospital administration during Covid). That is, many behavioral health resources that are available and/or in network are not experienced with autism so autistic patients end up in referral hell. I had to wait almost two years for a neuro work up to get diagnosed with ADHD. By the time the referral processed, my insurance had JUST went out of network days before my appointment and I had to pay out of pocket. All of my mental health medications were difficult to figure out since my PCP was inexperienced with autism. I've had three new PCPs since 2020 and none of them have had long term experience with autistic patients, somehow.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, general anxiety, social anxiety due to a lot poor experiences, ADHD, suicidal ideation. The physical discomforts that come with autism can have a seriously negative impact on mental health too. Specifically for people who are diagnosed later in life because their autism was simply missed due to lack of access to knowledgeable medical providers, mental health challenges are greatly exacerbated by knowing they are somehow different, but not quite how or why, and being surrounded by other people who are also aware of these differences without being able to name the how or why, and feeling empowered to mistreat autistic people because of it. Or more simply, bullying. Being subjected to bullying behavior, without understanding why it's happening, throughout childhood and into adulthood, is very hard on the mental health of autistic people. Constantly feeling depressed, anxious, unable to focus, etc. makes it hard to find and maintain stable gainful employment. And being underemployed or unemployed just compounds those mental health challenges.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	They impact relationships, jobs, family life,
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Name	Anonymous
Demographic	Autistic individual
Response	OCD - skin picking OCD - contamination phobia Depression Anxiety
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has autism and bipolar disorder, adhd and has had aggressive and self injurious behavior. Getting help for him has been very difficult and we went through many providers before finding medications that have helped him. I think that most providers don’t see coexisting disorders or they would be more helpful. Also, finding educational programs and activities has been difficult. We have had to get psychiatric assurances that my son can participate because of fears about his psychiatric diagnoses. Also, because he can’t be responsible for his own medication he ends up in more restrictive programs than if he wasn’t on the medication.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, anxiety, and ADHD are some things I struggle with for example self harm that comes with feeling depressed and increased sensory input from anxiety and lack of liquids and foods is a major issue with my ADHD due to hyper focus
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding a doctor to treat the whole person.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	One of the biggest challenges that we have been faced with is aggression. Aggression is so difficult to treat and causes so much disruption in the life of the child and family.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have ADHD as well as generalized anxiety. I have had depression as well. Being a late diagnosed woman has a lot to do with this as I was not able to get the help that I needed or taken seriously as I didn't display stronger symptoms like my brother who is non-verbal. My sister who is diagnosed with level II autism has depression, anxiety, and OCD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety OCD ADD Aggressive/self-injurious
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Depression Anxiety Sudden mood changes ADHD
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Families of individuals with autism and co-occuring mental health conditions are overwhelmed by dealing with daily demands/ and other responsibilities to get through the day which can cause delays in seeking medical assistance. Parents are not always fully informed as to how to help and it can be difficult to sit down to do long term/short term support planning. Schools can be a great support in working with families.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My daughter has ADHD, SLD. She gets easily frustrated however, with therapy she has learned effective was to identify and cope with her feelings (most of the time). Regarding ADHD and SLD, I am starting to noticed (she is 14) that she struggles with grasping information from health professionals.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our daughter’s schizoaffective disorder made challenging behaviors that much worse. It was difficult to take her anywhere safely or leave her with a sitter, which was isolating. There was physical and emotional harm to us and our other two children. Our daughter also had multiple suicide attempts and inpatient hospitalizations. Most hospitalizations had no effect though. She had therapy that made little difference. Her psychiatrist tried a variety of medications, and they helped, but not enough. In short, we found that there were few resources or help available to us for decades. Another challenge we experienced was not being able to integrate our child into the schools we tried. She was in multiple different special programs, none of which worked for long. She would refuse to go, run away, or act out. She had a major crisis in early adulthood. One of her medications caused her to develop a complex delusion, and she was hallucinating daily. Her psychiatrist recommended a change, but she refused. It was impossible to put her on a 72-hour hold because she was not yet a threat to herself or others. We had to wait until a disaster occurred. When it did, she was arrested and taken to jail. Fortunately, no one was hurt, and she was released to a hospital where her meds were changed but we had to deal with the courts and legal system for a considerable time after that. The systems in existence simply don’t work for individuals with autism and mental illness.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son is an adult and people have expectations of him as being "normal" or "typical"...but he doesn't always understand directions and cannot read the room. He gets frustrated and anxious and acts more like a 5-year-old when things get really difficult for him. This doesn't usually get a positive response. Some health care providers don't understand the impact of his literalness on his ability to follow their instructions. He has become aggressively agitated lately as society has a set of norms and standards he can't meet, and no one extends grace to him.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression and Anxiety are super common among autistic people, me among them. I’m also trying to seek a diagnosis for ADHD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenge is maintaining the energy required to participate in family life in a “normal” capacity. This can be keeping up with household tasks, maintaining relationships, caring for oneself, etc.
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Name	Anonymous
Demographic	Autistic individual
Response	I feel an immense amount of guilt and shame around my executive dysfunction. I feel like I am seen as lazy and entitled for all the invisible ways in which I struggle.
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Name	Anonymous
Demographic	Autistic individual
Response	I have anxiety issues, ADHD, and recovering OCD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Adhd, depression and anxiety
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	OCD, anxiety, and adhd make it difficult and at times impossible to start and complete everyday tasks such as cooking, cleaning, showering, grocery shopping, and making phone calls. They also at times make it difficult to socialize, fall asleep, concentrate, and affect short term memory.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD Anxiety Depression OCD Visuospatial issues Maladaptive daydreaming Insomnia Misophonia Pathological demand avoidance Executive dysfunction
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Name	Anonymous
Demographic	Autistic individual
Response	Again this varies - extra stress, anxiety, perfectionism, and extreme confusion (thanks to taking things too literally and/or not learning at the same rate as Neurotypical people) are all possible.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Again, speaking for myself, I have ADHD, severe depression and anxiety, gender dysphoria (I am a transgender individual), as well as near constant chronic suicidal ideation. My suicidal ideation has never made me a danger to others, and has never even been a reactionary, "need to do something right now" type of feeling, but a drawn out, calm and conscious desire to not be alive anymore. This is largely a byproduct of having multiple chronic illnesses, compounded by extreme negative societal opinions and discourse surrounding my status as an autistic and trans individual. It should be no surprise that people like me, who feel both unwanted and targeted by the world at large, don't want to be a part of this world anymore. The only real solution to that is widespread acceptance and a constant, conscious effort to fight back against harmful, stigmatizing, and flat-out untruthful beliefs.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of understanding and education in providers Diagnostic overshadowing Lack of access to safe medical care, behavioral and psychiatric interventions
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Imagine being chronically disbelieved by those whose job it is to provide medical care or to educate you. We have had to have the Office of Civil Rights, US Department of Education investigate our school district several time -- several times -- because they ignore 504 Plans and IEPs. The stress of having to cope with physical illness is difficult in and of itself, but to have physicians and educators compound that is overwhelming. So, yes, depression, anxiety, and more.
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Name	Anonymous
Demographic	Autistic individual
Response	It's very difficult to find a therapist who understands autism beyond a very specific stereotype of the high support needs young boy.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Many co-occurring mental health conditions exacerbate autism symptoms. Opposition to change can go from dislike to a panic attack due to anxiety and emotional regulation issues. In general the impulse control and emotional regulation issues present in conditions like ADHD make autistic tendencies more fraught. These co-occurring conditions also make misdiagnosis more likely especially in girls whose autism presentation is less obvious. The combination also leads to medication being used for the non autistic condition and nothing being done to address the autistic needs.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, anxiety, ADHD, suicidal ideations and attempts, etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Very easy to be anxious and overwhelmed by trying to navigate day to day life, especially with no support systems in place for autistic adults. There needs to be government funding for autistic adults because working full time is not feasible mentally.
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Name	Anonymous
Demographic	Autistic individual
Response	Seeking professional help is a challenge due to many autistic children going undiagnosed. Professionals are unwilling to diagnose adults because they either believe all autistic people get diagnosed in childhood, or they have doubt as to their ability to diagnose an adult due to the diagnostic criteria being mainly for children. Seeking disability help without a diagnosis is impossible and discrimination because of a lack of diagnosis is extremely common.
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Name	Anonymous
Demographic	Autistic individual
Response	I have anxiety, depression, and ADHD along with my autism. Anxiety is a big struggle for me because I’m always worried about something. I feel like anxiety crippled me and makes me feel almost frozen. My ADHD is also really bad. It causes my thoughts to race and I have a hard time with emotional regulation and executive dysfunction.
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Name	Anonymous
Demographic	Autistic individual
Response	Autistic individuals, especially those who underwent harmful ABA “treatments” often struggle to trust mental health professionals. In my experience, once I have built trust with a therapist, it is very common that they won’t be sure how to help me because I understand cognitively what happens in my mind. That does not mean that I can process or necessarily emotionally understand what I am experiencing.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, self injury, anxiety, panic attacks, fight or flight, migraine, burnout
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Name	Anonymous
Demographic	Autistic individual
Response	Getting health care officials to take it seriously and being able to hold a job.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, anxiety, burnout
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding a child psychiatrist with experience with intellectual disability and autism. Getting an appointment with that psychiatrist (there are too few). Finding the best medication (we have tried many and had some severe side effects). Treating someone who can’t verbalize their experiences.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Lack of understanding from developmental disabilities providers
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	anxiety, ADHD, depression
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Having to constantly redirect his attention significantly cause challenges, since he is non-verbal makes it difficult to keep from aggression, and self-injury. Not knowing if he is going to lash out or accept that redirection. That challenge is a day-to-day basis on the behavior he reacts to, if nonsufficient sleep or irritability.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	aggression/self-injury, elopement, anxiety
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggression and self-injurious behaviors severely limit inclusion and participation in community for people with autism. More research needs to be dedicated to these behaviors that will improve lives and reduce costs in emergency rooms and law-enforcement involvement. Much caregiver burnout is related to these behaviors. Constant vocalization is another isolating behavior that needs research and treatment options so the person can live and thrive in the community. ADD/ADHD needs better treatment options in this diagnosis. Medications that work in other populations sometimes don't help people with autism.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Finding a good caring doctor and follow up with medical staff on patient health by setting up appointments fir the patient with testing and specialists asap.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Not being able to advocate for medical treatment, disability, or other social services.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, ocd, hyperactivity
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD depression anxiety temper issues meltdowns self harm picking disorders eating disorders learning disorders and also a different way of thinking and feeling that has to translate everything and it's exhausting
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Name	Anonymous
Demographic	Autistic individual
Response	Between the sensory overload from smells, lights, sounds etc. & social anxiety from always guessing how to respond correctly, I get fatigued easily. I miss out on many opportunities because of fatigue, headaches, & social anxiety leading to isolation. If I get overwhelmed by sensory input or large emotions, I lose verbal ability, shutdown & cry. I cry a lot & when in public, leads to more anxiety about not appearing normal. Masking takes a lot of effort to sustain otherwise I fear being rejected by others. I am hypervigilant of everything/one around me. When talking with people, I monitor sounds, lights, activity in the background, eye contact, how far away to stand, how uncomfortable it is in my body etc which is all draining on top of the pressure to respond verbally. I also process auditory input slower so I am slow to speak if at all, leading to isolation because of being so quiet. I have a hard time recognizing faces & voices so that gives anxiety when I feel expected to know someone. I also need to wear hats, sunglasses, carry water & coats around, medication, snacks, earbuds & other things to help manage sensory input that contributes to anxiety. In the past I've had depression but developed many special interests to fill the void of the lack of people. I feel sad when a social situation doesn't work out, if I embarrassed myself, or if I feel like there is no purpose to my life if it is this hard to even manage basic survival needs.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I think one of the most significant difficulties is the invalidation of autism symptoms due to comorbid conditions. I've seen it with myself an others where if a person has ADHD everything is attributed to that and ASD sx are ignored. If a person has trauma, that is presumed to be the cause of everything and ASD sx are ignored. My ADHD symptoms and ASD symptoms are constantly co-occurring which can make both appear less impactful externally, but, internally, both experiences are exacerbated by each other. It is also difficult to engage in things like CBT due to my ASD. Attempts to reframe thoughts tend to only make them more intense, for example. Additionally, the combination of ASD and a restrictive eating disorder is extremely difficult. In addition to my typical eating disorder symptoms, I also struggle with extreme sensory issues that makes eating intolerable at times. Foods will shift from being a safe food to being completely repulsive quickly which can worsen my restriction.
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Name	Anonymous
Demographic	Autistic individual
Response	I have adhd, severe manic depression and cptsd. I struggle daily to regulate my emotions and panic attacks from people verbally and mentally abusing me for being different when I was growing up.
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Name	Anonymous
Demographic	Autistic individual
Response	I have severe depression due to a lifetime full of rejection/exclusion and so have persistent suicidal ideation. I also have a terrible memory, likely due to the sleep troubles and depression.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The biggest challenge is being taken seriously and not looked at and dismissed because eye contact was made or certain characteristics were so heavily masked that the uncaring eye would miss. I have undergone a lot of abuse and my signs were missed or dismissed as "attention seeking." I had a mental health professional look at me and say "Why do you think its autism? Don't you think that is just anxiety?" after I asked for a referral for an assessment. I never went back to that doctor. I am a female adult, which makes it statistically harder for me to be diagnosed or taken seriously. After my son was diagnosed, I started seeing things from my past that were missed by my parents and those around me. I do have anxiety, but I have never found relief from medication at the highest dosage for years. I thought that I as really just making this up. I was taught to just sit down and be quiet and learn. I learned that self-diagnosis is valid, and sometimes that is all you have. The free tests online (RAADS-R among others) were how I realized that my experience in life was not normal. There are so many barriers to treatment, let alone diagnosis that need to be addressed before we can begin to heal.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety, depression and suicidality are some of the ones that have most directly impacted my family in relation to autism. A majority of my family (including aunts/uncles, grandparents, children and self) have all dealt with anxiety. This anxiety impacts social life, school, work and in some cases has resulted it several family members becoming more of what would be considered a reclusive person. Those people rarely leave the house and are prone to meltdowns/shutdowns if they attempt to leave the house or do leave the house. It has also resulted in them struggling to hold down a job or find a job. Depression and suicide attempts also has directly impacted our family with those with autism, especially with females who are going through puberty or menopause (please, please please someone study the impacts of puberty and menopause hormonal impacts on autistic women!!!). This has resulted in several family members requiring psychiatric or even hospital care and many were unable to work anymore during and after menopause.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	When people who are more severly on the spectrum and need extra help and the general public doesnt understand and calls the police who then are not trained to handle mental health or any mental challenges and then the police hurt or even kill the autistic person simply for not understanding they needed extra help.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Social anxiety and anxiety, in general, are huge challenges that affect ones ability to make and keep friends and relationships, and makes it difficult to find a job that doesn't exacerbate their anxiety and social anxiety. Depression is a huge problem for autistic people. All the other things that create anxiety and keep autistic people from finding a suitable job, making friends, being able to live on their own, living within limited financial means (on SSI/SSDI/Medicaid) all contribute to this depression. I see it with my adult autistic children--a feeling of hopelessness that life will never improve for them, feeling as if the assistance they receive and the lack of needed services (for us it's only SSI and Medicaid, no community services for them) only keeps them living in poverty and unable to climb out of it.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The mental health challenges are the most significant co-occurring issues for my family. The older of the two children obsesses over washing his hands and his bowel movements. He can also become very anxious, by stressing over negative news in the media, as well as negative comments made to him. The younger child who is a teenager has been diagnosed as also having ADHD and depression. There has also been passive suicidal ideation utterings.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD - because given tasks have to be novelty and interesting for most effective cooperation. If the task isn't interesting it becomes an uphill battle that can quickly cause disregulation/meltdowns and make even participation difficult. Aggressive and/or self-injurous behavior is a big one for us. Emotions are driving force and self regulating emotions does not come naturally. It has to be taught and it starts early and needs to be consistent. It takes a lot of time and a lot of patience and compassion
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) There are often multiple conditions that require multiple doctors and therapists. This can be very expensive for individuals and families 2) There needs to be much more research done concerning how gut biome affects mental health disorders and what can be done to improve the biome 3) As autistic individuals age, their health needs change. Robust research on autism across the lifespan, especially in older ASD individuals is required to determine how conditions such as, for example, depression, affect ASD individuals and what preventative measures can be done to reduce/eliminate the potential for conditions common to people over 60 4) Loneliness is a key driver of anxiety and depression for ASD children and adults. Continue finding and implementing solutions to help this population over the lifespan cope with social anxiety and feel engaged 5) The connection between gender identity and autism must be researched more robustly. This is a twice at risk population for harm and exploitation 6) Trauma informed care is vital for ASD individuals. PTSD, generational, and other forms of trauma are common in this population 7) Therapists, doctors, nurses, counselors, paramedics, social workers, etc. are not trained in how to effectively communicate with autistic individuals.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Suicidal ideation, depression, anxiety, adhd, sensory overwhelm
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son is also diagnosed with mental health issues (aggression, auditory and visual hallucinations, anxiety disorder, mood disorder etc) and attentional disabilities. When he was younger it was difficult obtaining a psychiatric facility in PCG Maryland that could provide mental health services to him. We had to go to Baltimore to obtain inpatient and outpatient care for him. Also, his educational needs could not be met locally, and he also attended school in Baltimore.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	For my daughter, there are many challenges related to her anxiety and perseverating thoughts. She gets very anxious easily and that prevents her from trying new things. When she is really bothered by something, she will make up situations/stories to create a reality that she is more comfortable with to help her cope. She also tries to convince others to do or say what she wants by pushing on their shoulder or saying that they said things that are not true (e.g. "mom said she wanted me to do that," when that was not the case or "what you meant to say was [what she wanted instead of what was said"). Transitions and change in routine are very difficult. Sometimes she will say things about people that are not very nice because she is upset about a change (e.g. about program staff or her family or her doctors because she does not like a proposed or actual change). It is very challenging to see her like this and also challenging to learn how to best help her get through these situations. She also picks at her fingers to the point of making them bleed or removing several layers of skin. She says it does not hurt, but her fingers are raw. She has tried multiple medication combinations, but none have seemed to really help all of this. I worry about the long-term effects of being on these medications as well.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring conditions can cause death, isolation, communication difficulties, missing work, transgressing societal norms, self-esteem and self-efficacy deficits, difficulty with keeping promises, reduced income potential, reduced perceived mate value, inability to improve your situation (because of lack of motivation, fear, or lack of focused effort), injury, disfigurement, increased dependence on others, direct discrimination (both for those which put you in a protected class (like gender dysphoria or same-sex attraction), and for those that don't (ADHD speaking speed)), vulnerability to structural inequality in education, housing, transportation, nutrition, the justice system, and health care.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	anxiety and adhd for sure. he really has a difficult time with focusing and paying attention in class. he really is in his own mind. I would say adhd is really difficult.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Impacts access to education [and overall care] for school age individuals Lack of appropriate services available to individuals with co-occurring conditions Lack of trained professionals Mental health conditions and needs are commonly disregarded in nonverbal/significantly impacted individuals, and this contributes to a lack of services for those individuals
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	The most significant challenges caused by co-occurring mental health conditions in autistic people is funding. Mental health providers argue that the individual needs to be served by developmental disability providers and developmental disability providers argue that the individual's mental health conditions also need to be addressed. Funding is typically at the center of this argument. Also, the prevailing methods of therapeutic intervention for mental health conditions is talk therapy and 30-50% of individuals with an autism diagnosis can't speak. Another concern would be that once individuals receive an autism diagnosis and gain access to ABA, their caregivers may feel like they have reached the end of their diagnosis journey and not consider a co-occurring mental health condition. Fewer and fewer mental health professionals are familiar with behavior modification and will not accept an individual where autism is the primary diagnosis for treatment.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Adhd Aggression
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Behavior that might damage things and injure others
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, burnout induced depression
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, ADHS, aggression, self harm, harm to others, trauma.
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Name	Anonymous
Demographic	Autistic individual
Response	I have ADHD, Autism, and Complex PTSD from my Autistic needs getting overlooked and dismissed as a kid. This led to me lacking a sense of self and feeling terrified of most things in the world. It got worse as I became an adult because all of a sudden I was expected to do things that I was not prepared for like navigate the doctor's office or apply for a job. I had never done these things before, and they were full of the most difficult things for me to do like navigating new systems, making phone calls, and talking to new people. It's taken me about 6 years to gain enough experience to start to feel competent in navigating some of these areas like managing doctor visits, but I still haven't been able to get a job. Before my Autism and ADHD were recognized, I burned out when attending college to the point of being hospitalized. No one understood why that had happened, not even the doctors at the hospital I was admitted to. It all makes sense now that I know about my Autistic and ADHD needs, and things are better now that I have more supports, but the strain I was under did lasting damage and I'm no longer able to do as many things before becoming exhausted and needing to stop. It's also a testament to how little is known about autism, even in the medical community whose job it is to know about things like this, that they would not have been able to recognize or troubleshoot an issue that culminated in me ending up in the emergency room.
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Name	Anonymous
Demographic	Autistic individual
Response	I meet the criteria for a PDA profile of autism. I can make eye contact. I am social. I have special interests. I am mono tropic. I also have executive dysfunctions. I was born this way. I can not 'do' things when I am overwhelmed, which is a lot of the time. My childhood was a nightmare. I appeared super smart (with a high IQ) and was placed in a NYC tag program. I could 'not' concentrate of the teacher for more than a minute or two. I could 'not' learn' in a classroom. I melted down daily at home. I could 'not' make my bed or do my homework. I made a serious attempt on my life at age 16 because I could 'not' do almost any of the things I was expected to do. By age 19 I was homeless and an alcoholic and was shooting up heroin. The more declarative the language used the less able I am to 'do' the request. I finally managed to get into Antioch college which had no grades and I only had to attend the first and last class. I could work with the profs one on one and I designed my own major. I learned to love learning and eventually got a masters and a tenured job teaching adults in a college. I'm over 70 now and missed so many opportunities to have a way better life thanks to PDA. There is an official website for this profile. Please check it out. It is in the UK. https://www.pdasociety.org.uk
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Name	Anonymous
Demographic	Autistic individual
Response	I have clinical depression, ADHD, PTSD, and CPTSD. The most significant challenges for me are: - not feeling motivated to do a task that needs to be done (i.e. finishing an assignment, doing chores) - maintaining structure to routines and punctuality - not getting anxious or getting aggressive/having a temper when there is a sudden change to plans - having a harder time confronting people due to past experiences - having intrusive thoughts that often involve harming others, especially to those that I feel have wronged me in any way even if we made up - perseverating on a situation for days on end - thoughts of suicide and attempting to do so - intrusive thoughts about memories from my childhood I'd rather forget - going into the same area as my ableist ex-roomates and their homophobic friends and having a panic attack - dissociating in loud, crowded spaces or certain social situations (i.e. going to a public event alone without friends)
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Name	Anonymous
Demographic	Autistic individual
Response	Complex ptsd from being undiagnosed, anxiety, depression, suicidality
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Name	Anonymous
Demographic	Autistic individual; Other
Response	ADHD, OCD, dermatalomania, trichotillomania, anxiety, social anxiety, depression, suicidal thoughts, restless leg syndrome, BFRB, skin biting, nail biting
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety, Depression often caused by overstimulation and burnout. ADHD. Suicidal thoughts
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggressive and self-injurious behaviors are the most significant co-occurring conditions in autism. They impact learning, interpersonal relationships, activities of daily living, and independence and are a significant safety concern for the individual with autism and their families and peers.
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Name	Anonymous
Demographic	Autistic individual
Response	ADhD
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Name	Anonymous
Demographic	Autistic individual
Response	As an autistic individual, I have additionally been diagnosed with CPTSD, anxiety, depression, skin picking disorder, and gender dysphoria and while it is not a formal diagnosis, I experience general issues with fine motor control. Of these issues, the most significant struggle of mine is CPTSD, or Complex Post-Traumatic Stress Disorder. I have experienced a variety of traumatic events within my life that have caused me to receive this diagnosis, but many of the traumatic events can be attributed to my experiences being autistic. Bullying and discrimination I faced from peers and teachers growing up, a lack of care and assistance in meeting my needs from family members, and infantilization and dismissiveness from doctors throughout my life have all contributed to the creation of the mental health conditions I have today. Additionally, my skin picking disorder occurs as I use skin picking as a self stimulating behavior and this has a negative impact on my physical wellbeing. Furthermore, I am a transgender man and as a result of my autism, people often believe that I am simply confused about gender and that I am just a confused woman. Finally, anxiety and depression stem from a wide range of autism related symptoms.
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Name	Anonymous
Demographic	Autistic individual
Response	my obsessive compulsive disorder, especially before medication, has a huge impact on my life. I am rarely free of intense and upsetting intrusive thoughts and compulsions, intense fear and unsafe, uneasy feeling.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Anger, depression (isolation), anxiety (fear of our self as there is little information on what the spectrum of autism is and how it impacts each person that experiences it. Also for females (women) the lack of diagnosis and the requirement to mask cause long-term anxiety that is not treatable with medication. Anxiety related to not fitting into society's requirements). ADHD, eating disorders, self-injury (hitting, cutting, picking as examples due to self-hatred and also stimming activities). suicidal ideologies and attempts. Educational disabilities, learning disabilities, executive functioning difficulties, and social difficulties lead to new disorders and can cause personality disorders. Substance Use disorders.
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Name	Anonymous
Demographic	Autistic individual
Response	Self harm, Regulation, Thought process, attention to a task, continued support for adults
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, showing up as hypersensitivity to noise, change in routine, crowd of people
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety, depression, ADHD, C-PTSD, hitting myself when I'm in a meltdown. Lots of trauma. Being yelled at, being hit for not sitting still. Trauma of being excluded from basic aspect of society & social interaction because I was "too weird" or "there is something wrong w/ you" & I'd like to add religious trauma, & punishments because I thought differently, because I was defiant, because I wasn't obedient. Feelings of being a failure because I'm not trying hard enough, so then I'm not good enough &never will be good enough.& then high masking. Feeling all of that, & I have to pretend everything is fine, & smile to make everyone else feel better, but what about me? I'm forced to work because I have no other option, but my mental health is suffering. Again, there are no community support programs, or support in general for us autistic adults. Yet there are a for school age children. Again, in my experience, mental health providers just are not experienced to deal with us late diagnosed autistic people on the spectrum. My husband, dx ASD, his co occurring disorder is bi-polar. I can see the bi-polar developed out of being unregulated & misdiagnosed. I see this with a lot of the co occurring "other" disabilities with ASD. My anxiety, depression, & c-ptsd all from being undiagnosed. Now, I barely leave my house unless I have to, & I don't know how to get better. Anxiety going to the grocery store because it is crowded w/ people & it is too loud & over stimulating.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	All of them, for different reasons. Aggression when my son was younger was very significant and disrupted his schooling for several years, until a combination of medication and therapy helped make it manageable, and what we are guessing is the onset of puberty has toned it way down. I had grown afraid of leaving him in the care of people I wasn't sure were equipped to handle him. ADHD in both of us has been another obstacle but getting him evaluated for it for an official diagnosis and supports has been impossible, due to his existing Autism diagnosis putting him at the lowest priority on waiting lists. Without diagnosis, we're locked out of medication as an option, and it's beginning to affect his grades. Anxiety for my son often leads to the meltdowns. He'll get anxious about something, and then the Autistic perseverance starts a vicious cycle that can be difficult to break him out of. Autism-related PTSD is the primary root of my depression and anxiety. As an adult woman, I went undiagnosed entirely until my late 20s. Jobs are difficult to retain, because people assume that because I'm smart and good at my core work, that I don't need support in other ways, and I end up failing to meet other expectations (and denied support for those things, because "you're smart, you can figure it out") or run afoul an unspoken cultural rule, resulting in me getting pressured out, if not outright fired.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	The ability to emotionally regulate, and communicate their needs to others who can help is the most significant challenge. With anxiety, poor function/planning skills, and the aggressive behaviors resulting in the speediest attention, the skill of self reflection "What do I need?", then communicating that need to a caregiver or loved one comes second to having aggressive behavior outward or inward.
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Name	Anonymous
Demographic	Autistic individual
Response	I would hazard a guess a lot of co-occuring mental health conditions in autistic people are not because of autism, but rather because of how society today is built in opposition to autistic people. Besides the sensory onslaught from urban society, the complex social navigation required to really excel in a career can also be hampering. Is it any wonder autistic people are depressed or anxious when it is difficult to navigate society? I cannot speak to aggressive or self-injurious behavior as I don't experience that, but I have seen friends suffer social ridicule and physical injury due to it.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD affects everything in my daily life. I have to constantly repeat in my head what I’m about to do, so that I don’t get distracted and start doing something else. If I add something new to my daily routine, I often forget to do something else. Finding a balance between self care, caring for others, and working can be quite challenging. Social anxiety can make shopping difficult. Shop keepers tend to notice that I am anxious and assume that I am going to steal things. One man followed and confronted me, causing a meltdown at a pet store. I was too anxious to explain and ended up calling the store after leaving. Depression comes from everyday life being so challenging, and the lack of understanding from most non-autistic people.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Autism-informed treatment for adults is nearly nonexistent, especially when co-occurring mental health conditions are directly caused by unmanaged symptoms and experiences of autism
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety and sensory issues often fuel aggression and self-injury. It is hard to pull these issues apart, even for professionals. I have a very small adult child, but they can still seriously injure me or themselves. I cannot stress what a frightening experience that is, to love someone that is not capable of understanding their behavior and can cause a lot of physical harm and destruction. This makes things like doctor visits incredibly dangerous. It can make getting simple lab work done impossible without sedation, and most places don't offer sedation. So, a lot of folks aren't getting the medical care that they need because it is impossible to get basic labwork done.
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Name	Anonymous
Demographic	Autistic individual
Response	I have emotional disregulation, sensory processing disorder, ocd, depression, generalized anxiety, and alexythymia. Because I have asd level one, I went undiagnosed for a long time and I get very little support, most of the work I have done including finding a useful therapist, finding a boss that will advocate for me, and getting formal diagnoses I have all done and payed for on my own with the exception that you could consider my income subsidized if you take into account my parents or my partner have always been there to take care of me with rent and food ect. I would like to become more independent and contribute to society more. I'm seeking professional help now because a lot of strategies I learned growing up have been maladaptive and held me back, and have become less useful as I have gotten older. Challenges include: 1. Attendance at work 2. Keeping jobs 3. Keeping a healthy social net work 4. Finding therapist who won't turn me down 5. Finding sensory friendly environments to improve and learn new skills 6. Attendance and performance at university 7. Maintaining client relationships at work 8. Executive dis funtion and trouble remembering anything outside or routine 9. Creating and keeping routine as an adult 10. Having someone to call when I'm having a melt down and I need to calm down. 11. Self harm 12. Bullying by others 13. Manipulation from bosses, Co workers or companies.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Anxiety, depression, ADHD, PDA, restrictive eating, suicidality, aggression, alexithymia, Aphantasia, ARFID
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Name	Anonymous
Demographic	Autistic individual
Response	My most significant challenge is retaining consistent and supportive employment. Nobody really understands how difficult basic communication and participation can be. Prone to depression, anxiety, brain fog, distraction issues, and sound/feeling induced panic.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety Inattentive type ADHD Isolation
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	aggressive behavior, inability to communicate, emotional disturbances, elopement, sleep disturbances, inability to keep self safe
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I've collected mental health conditions like stamps and all of them significantly impact me in different ways. ADHD makes time management or focusing near impossible (even with treatment), depression and anxiety (mostly stemming from PTSD) are extremely debilitating and prevent me from even being able to sit up in bed some days, I have suffered head trauma from self-injurious behaviors... I could go on forever, but the one thing I want to emphasize is that I was diagnosed with "High Functioning Autism," but it does not accurately describe my struggles and makes it even harder for me to find appropriate services because people assume all I need is social skills training or CBT, when in reality I'm in need of much more intensive supports. Just because I have a high IQ doesn't mean I don't also have a developmental disability that affects my brain functionality. I can't access my intelligence if I'm overwhelmed, stressed, or burnt out.
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Name	Anonymous
Demographic	Autistic individual
Response	Social anxiety resulting in complete lack of desire to be out in public
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Motivation for anything
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Name	Anonymous
Demographic	Autistic individual
Response	delusions hallucinations paranoia, ocd especially moral and scrupulous, anger, impatience, no tolerance for frustration, everything makes me mad everything frustrates me and i don't understand anything and no one's nice about it ever, lack of empathy
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Self harm, extreme behavior screaming
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety- reduces opportunities for learning both socially and educationally. In our situation I’m not sure if it’s anxiety related but child “picks”, bites fingernails, lip for sensory input or anxiety management. This is complicated by the fact child will NOT take any medication and has a limited diet of less than 10 foods.
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Name	Anonymous
Demographic	Autistic individual
Response	Adhd and ocd are my co occurring conditions. They are what i was born with and they are not in the same category as environmentally caused conditions. I experience anxiety, depression and suicidal thoughts. They come from living in an unaccepting, bigoted world thats conditioned to refuse to change their views when facts prove them wrong. Researchers need to listen to people like me and think about the chicken and the egg question.
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Name	Anonymous
Demographic	Autistic individual
Response	Extreme sensitivity to teasing, criticism, bullying, etc. Extreme social anxiety and difficulty making friends. Issues with confidence and self-esteem. Loneliness due to never having a partner. Depression and feelings of worthlessness.
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Name	Anonymous
Demographic	Autistic individual
Response	I almost died in high school as a result of autistic burnout, which presented similarly to severe depression and anxiety. The autistic community usually defines burnout as a regression in abilities along with intense mental, emotional, or physical exhaustion as a result of continual overwhelm. I was completely unable to function normally. Ordinary mental health interventions (medication, therapy) did not help much; I had to give my brain time to recover to resolve the burnout, and being pushed harder to just think happy thoughts didn't help. It took me a long time after the fact to realize that burnout was the problem. I wish that more research on autistic burnout was done, and that more mental health professionals knew it existed. Otherwise, anxiety is an ongoing struggle, as is dealing with the effects of trauma. I was diagnosed in adulthood, and the lack of awareness from family and friends in childhood about autism led to a lot of conflict and problems that still affect me today. The skills I learned to cope are the same skills I'm having to unlearn to improve my mental health. I learned to hide everything about myself to make others happy, and that my core self was wrong. The focus on assimilation over acceptance destroyed my self-confidence, trust in others, and sense of safety in the world. I wish that acceptance were the focus instead, and that autistic children were not forced to change themselves to be loved.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Working or going to school full time. Care tasks. Chore tasks. Social activities. Skill regression or skill loss.
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Name	Anonymous
Demographic	Autistic individual
Response	Lack of motivation to complete tasks, difficulty managing tasks, executive disfunction (extreme difficulty completing basic daily tasks such as eating, sleeping, bathing, dressing, etc.), difficulty with focus, self-harm, difficulty in social situations, difficulty advocating for oneself, difficulty self-regulating, difficulty eating, difficulty navigating most forms of transportation, panic attacks, difficulty staying still for periods of time
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Name	Anonymous
Demographic	Autistic individual
Response	Depression and anxiety from Autism affect every aspect of my life. Sleep, relationships, work, daily life, personal hygiene, and generally being a functioning member of society. My mental health has been a struggle my entire life, even as a child. The main challenge can be summed up by saying that society and the world in general is not designed for autistic people. The result is low self-esteem, depression, and anxiety which are caused by being different, misunderstood, disrespected, and ostracized by society. This even happens with family and close friends. Basically, we feel alone in every sense of the word. This escalates over time and begins to affect to every aspect of our lives. The result is isolation and being unable to work.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD - this and ASD are kind of at odds. I have two very opposite sides of my brain. One enjoys a gallery wall with no method to the madness or theme or layout, the other gets easily overwhelmed by a single image. Trying to balance these two- particularly during the recent medication shortage for ADHD meds, is a huge challenge in terms of just getting through a day and being able to manage yourself, or at a minimum, set realistic expectations for yourself. Autism - duh Anxiety - I never know if my anxiety is for a legitimate reason (I also have panic attacks and cardiac issues), if it’s because I’m feeling insecure around neurotypical people, or if it’s just my broken brain. I tend to overcomplicate things when I simply need to process them, which causes further anxiety. Bipolar disorder - hard to know how to manage appropriately between the highs and lows, especially with the self-regulation challenges that ADHD and autism present Depression - all of these things combined put me into major burnout mode where I cannot bring myself to do anything for days. Work is a challenge, but not an option because things like FMLA for conditions like this are next to impossible - and even if they weren’t impossible, who can afford it?
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Other
Response	Anxiety with co-occurring panic attacks has been the biggest challenge for me. They stop me for going new places, trying new things, or even doing basic things like seeking out a new therapist or doctor. The fear of being looked down on or shamed because of who I am keeps me away from people. The challenge here also extends to things I can't work around or find ways to make work. The most recent example of that was a summons to jury duty, there wasn't a safe place to decompress, there was a lot of waiting which gave me a lot of time to get more and more anxious, the building was so unfamiliar so i didn't feel like i could leave and grab lunch or find a place to decompress so even being given a map of the building would have helped with the experience.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	CPTSD often caused by long term ABA therapy (which more research needs to be done for the long term negative side effects). Anxiety/depression is often caused by long term masking (leads to suicidal ideation) and not being accommodated or supported. Autistic individuals are comfortable at home and feel less anxiety/depression when their needs are met (mostly sensory and executive dysfunction). ADHD also contributes a lot to the executive function dysfunction.
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Name	Anonymous
Demographic	Autistic individual
Response	-Having psychiatric conditions that exacerbate the symptoms of another -Being misdiagnosed due to the similarities between two coexisting conditions -Being prescribed overly sedative medication
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety Meltdowns
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Name	Anonymous
Demographic	Autistic individual
Response	Feeling isolated from my piers growing up has planted doubts in me about my ability to socialize, and more significantly how others view me. I’m very self conscious about my weight, how I look, what I’m doing, and I’m very prone to paranoia and rejection sensitivity. I was severely bullied despite my best attempts at masking/trying to appear “normal”, and I developed suicidal ideation and manic depressive disorder as a result. I used to self harm, but more as a coping method with overstimulation (like biting, kicking, hair pulling) rather than self harming as a way to cope with depression.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety seems to be the most outwardly harmful issue. Their anxiety leads to isolation, which then leads to other issues. This is one of the problems discussed with a healthcare provider that was dismissed.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, suicidality and anxiety.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety and depression are unfortunately deeply connected to my Autistic experience of life and the trauma of growing up undiagnosed and unaccommodated. Depression makes any level of functioning difficult and anxiety is miserable and debilitating. I live with major-depressive disorder on top of my Autistic struggles.
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Name	Anonymous
Demographic	Autistic individual
Response	For me there is significant overlap with the last question. Anxiety, depression, and ADHD work in tandem to make self care difficult. This combination makes navigating bureaucracy of any kind challenging, and often leads to decision paralysis that makes me miss deadlines. Behavioral addictions are easy for me to develop and difficult to stop, especially around video games and sex. This largely stemmed from childhood social isolation; as an adult with a stronger social network they are much more manageable. Periods of stress cause me obsessive thoughts about other people similar to OCD, largely involving sex and race. When I am more anxious, all of my sensory issues get significantly worse. Severity of sensory issues is tied strongly to my mood. Periods of loneliness significantly exacerbate all mental health issues. Many people on the autism spectrum have heightened empathy and acquire vicarious trauma quickly. They also seem to be generally more susceptible to PTSD. Changing behaviour through masking to adapt to social situations is highly stressful and physically exhausting.
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Name	Anonymous
Demographic	Autistic individual
Response	I'm a very anxious and depressed soul. I have self injured in the past, but have learned coping skills to avoid this behavior.
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Name	Anonymous
Demographic	Autistic individual
Response	Autistic people are extremely likely to have depression, anxiety, CPTSD, DID, BPD, ADHD, OCD, etc. Just as likely we have adopted dangerous coping mechanisms to soothe the overwhelming amount of pain we receive frequently in many ways due to our brain's needs, its environment, and trauma. When we have a mind that is constantly drained to empty all of the time, and we are put into the pressures of the world, with no help, no support, no one listening to us, no one believing us, no one showing us we are worth anything, everyone showing and telling us how much of a failure we are and constant insulting harassing attacking from people beating raping and killing us for being different, we don't want to be here. We cut, burn, drink, smoke, vape, attempt suicide, and have sex to soothe the mental pain, or to punish ourselves, or to try and feel some sense of worth or happiness for ourselves being alive. We are given and entirely negative self image from birth and it is ingrained into us which leads to the common co-occuring mental health conditions. We don't know how to help ourselves because no one teaches or helps us. We can't upkeep the amount of self care we need because our nervous system is sucked dry after one single task of the day. We deserve happiness and stability and we can not give that to ourselves without external support.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD is a big one. There’s some real symptom overlap and it feels like most low support needs autistic people get an ADHD diagnosis at some point. Another weird overlap is bipolar 2–lots of us seem to wind up having bipolar 2.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I experience the following mental health challenges: Complex-PTSD(CPTSD) resulted from persistent bullying throughout childhood, social rejection and isolation, being physically attacked and assaulted, neglected, and gaslighted throughout my life. Depression is persistent, and I have experienced ongoing suicidal ideation for most of my life. ADHD-PI causes issues with forgetfulness.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	All of the above listed, and SUDs.
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Name	Anonymous
Demographic	Autistic individual
Response	My largest challenges are caused by late intervention. I got diagnosed at 21 years old, so my support needs were not met. As a result, my cooccurring challenging conditions are: ADHD, EDNOS, OCD, C-PTSD, generalized anxiety disorder, depression, self-harm, trichitillomania
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Name	Anonymous
Demographic	Autistic individual
Response	It affects my social life the most. I already struggle to socialize, which flares up my depression, and my anxiety. I also struggle with emotional regulation and when my PMDD or MDD act up I compulsively self isolate out of fear of having an extreme reaction over something minor and having to face social backlash for it
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD, forgetfulness, anxiety and depression
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	being diagnosed with autism at a young age gave me nothing except for horrendous abuse from teachers and bullying from peers. i have dissociative identity disorder and one of my largest struggles with that is the lack of research and understanding from mental health professionals. there is also a great deal of stigma surrounding the disorder and it keeps me from being able to healthily express myself as a person
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Name	Anonymous
Demographic	Autistic individual
Response	the Brain Soup of depression, anxiety, OCD, and ADHD (honestly better labeled as an executive functioning disorder) make it incredibly difficult to maintain a household, personal relationships, jobs -- it's often even difficult to maintain hobbies and things i find enjoyable. that there is no "safety net" if i were to lose my job means that in the back of my mind im often thinking "if i ever stop working myself to exhaustion like I currently do, I will probably lose my home and be unable to feed myself." so that's extremely stressful which only exacerbates the mental health conditions.
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Name	Anonymous
Demographic	Autistic individual
Response	Doctors not understanding that there are physical side effects to anxiety, adhd, and depression. Doctors not knowing the full extent of those connections or the various symptoms such as the vast lack of knowledge or sharing knowledge on how impactful ADHD can be, with difficulties managing impulse, executive disfunction,
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Name	Anonymous
Demographic	Autistic individual
Response	n
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Name	Anonymous
Demographic	Autistic individual
Response	When you have autism, ADHD, depression, anxiety, PTSD and more, the worst part is not knowing which is which. We need much more study on what it looks like for symptoms of multiple disorders to show up all at once, otherwise we will continue to be put in the box of "we don't know what's wrong with you": a BPD diagnosis.
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Name	Anonymous
Demographic	Autistic individual
Response	I am autistic and I have adhd and treatment-resistent depression. The depression is a direct result of autistic burnout living in a fast-paced, inadequately structured, capitalist society. The lack of resources available to autistics who cannot afford the expensive process of diagnosis exacerbates this issue-- the less support available, the worse the burnout and subsequent depression becomes. Taking my ADHD medication, although it helps with focus, executive dysfunction, and energy levels, ultimately makes my sensory processing issues worse and leads me to burnout earlier Social anxiety accompanied by intrusive thoughts Burnout seeking some form of control-- I have used tattooing as a form of self-harm. A way of feeling in control over my body when I don't have the capacity for anything I need or want in that period of time. These needs and wants can include the most basic forms of self care such as feeding myself, brushing my teeth and taking showers, or going to class, work, or social functions. In these periods of extreme depression I have experienced suicidal ideations.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	As a Special Education Teacher, I am advocating for my students who are non-speaking with limited verbal language and high support needs who are unable to access and fill out this form independently who are Autistic as this is inaccessible for people with complex communication needs. Sensory Processing Disorder- affects capabilities of accessing the community due to oversensitivies to noise, taste and touch. Going to a restaurant and grocery store can be deemed impossible due to safety. Children may often elope out of buildings which causes major safety concerns. Unable to regulate and communicate emotions. Anxiety- unable to attend doctor appointments due to high anxiety and oversensitivies to noise and touch. Since many people with Autism are complex communicators, they may particpate in self-injurious behaviors such as hitting other and self, banging head on objects or walls. May throw objects that could cause injury to self or others.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenges that have been caused by co-occurring mental health conditions are anxiety. My son struggles with social settings due to being seen by others, he doesn’t like for people to see him if he is getting pulled from class or has to participate in a group where he is called on. Connections with other individuals is difficult as he shuts down around new people or in new environments. When he shuts down , he becomes nonverbal although he is verbal and can communicate with others he is comfortable with. When he shuts down, or is overwhelmed by sensory input he exhibits challenging behaviors that impact him in a classroom setting or even public setting. He will hide under furniture, he will lay on the floor and refuse to move even if the area where he is laying is unsafe due to other people potentially walking on him. When he is overstimulated additional behaviors are noticed such as escaping the area , being disruptive if he wants to be somewhere else or if there is a change in the routine that he struggles to transition with.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	ADHD Anxiety Depression Self injurious behaviors Passive suicidal ideation Misdiagnosis of personality disorders Misdiagnosis of bipolar disorder
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Name	Anonymous
Demographic	Autistic individual
Response	The most obvious one is that suicidal ideation/depression makes every aspect of your life harder, you can't work if you can't get out of bed. My OCD is also very detrimental to my ability to work, there are some jobs entirely off limit to me because of my symptoms. Misophonia is one of the ones that seems like it wouldn't affect you as much, but if I can't even sit in a break room during lunch without being miserable and agitated at the sounds of people chewing their lunch, I can't further my connections in a place of employment.
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenges caused by co-occurring mental health issues would probably be the loneliness. Having autism or mental health issues (depression, anxiety, etc.) can be isolating, having both is extremely lonely. Also, as it relates to ADHD as well as autism (what many of us refer to as “AuDHD”), it’s extremely challenging feeling pulled in such different directions. At times I can be meticulous and extremely rigid and other times I can be impulsive and careless, and there’s not always a pattern or method to it. There’s also a lot of executive dysfunction to contend with. It’s a lot.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Self-care tasks such as brushing your teeth, brushing your hair, taking a shower, and eating. Being able to communicate which directly influences the ability to have access to job opportunities, meaningful social interaction, and meaningful day today activities.
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Name	Anonymous
Demographic	Autistic individual
Response	The symptoms are often mixed up within the common co-occuring mental health conditions, and not enough health care professionals are accurately trained to diagnose autistic individuals, often ignoring the co-occuring mental health conditions.
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Name	Anonymous
Demographic	Autistic individual
Response	I have ADHD, chronic depression, trauma, generalized & social anxiety, phobias & chronic suicidality. ADHD is difficult because of the stigmas about being lazy when I’m trying but my brain disagrees with what is highest priority (executive dysfunction & interest-based nervous system). Many ADHD people fail to meet expectations & are villainized for symptoms out of their control. Most neurotypicals don’t know what ADHD is, especially because the name suggests it’s a deficit of attention (which it isn’t & inattention is the least of our problems). Chronic depression & trauma are common in autistics because you grow up in a world made for neurotypicals. You’re lonely & upset that your life isn’t going how you had expected. I’m still grieving the life I thought I would have. Medication doesn’t eliminate my depression because it’s situational & the situation is permanent. Therapy never helped; I was so self aware that I already recognized how I functioned but still felt the way I felt. A lot of therapists don’t know how to work with a bottom-up processor who is so self aware that pointing out how they behave & think doesn’t give them any new information. Without medication, my anxiety is crippling. A lot of it could have been avoided if there hadn’t been so much pressure to act, speak & move a certain way (masking). Like my depression, my suicidality is difficult to treat because it’s permanently situational. I don’t want to die; I just don’t want to live.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	High self harm and suicidality rates are well documented, but what isn't is the ubiquity of trauma and its impacts on the mental health side of things. Trauma is a primary predictor of all kinds of health outcomes, and most autistic people I personally know have at least PTSD. Many (especially those of us who are more highly sensitive) have more complex traumagenic disorders. It's not studied yet, but based on my own experiences and the community that I engage with, I'm confident there's a statistically significant overlap between autism and DID, OSDD, and other conditions of complex trauma. DID as a condition on its own is already so widely misunderstood and misrepresented. The most significant challenges are varied and numerous, are often very individual in nature, but are compounded by the lack of trauma-informed healthcare, rampant misdiagnosis and prescription, and the negligence of healthcare professionals who aren't equipped to help autistic people but work with them anyway.
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Name	Anonymous
Demographic	Autistic individual
Response	Parents gaslighting and hypercritical—in denial or lying due to respectability politics, ADHD, SPD, GAD, CPTSD, speech impediment and swallowing issues, ear issues, social anxiety, panic disorder, self-destructive behavior to avoid harming others, depression, SI (after a decade of being misdiagnosed in early 30s), bulimia during episode of partner violence, clinical PPD with dysphoria
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Name	Anonymous
Demographic	Autistic individual
Response	Depression and anxiety, self harm and suicidal actions, aggression when misunderstood and/or belittled.
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, borderline personality if traumatized in childhood, attention deficit disorders. High risks of suicidal ideation during burnout or if overstimulated. Eating disorders and obsessive compulsive disorders both related to having inclinations towards special interest and excessive shame and guilt.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD, anxiety, mania, memory issues,long term hyper fixations, burnout, lack of ability categorize priorities
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Name	Anonymous
Demographic	Autistic individual
Response	In my life I have experienced depression, ADHD, and disassociation. Relatedly to the first and last, I’ve experienced periods of injurious behavior, suicidality, memory loss, and unresponsiveness. Several years ago when this was at the worst it’s been, this provided challenges to my functioning.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Self-reports for my Autistic self and my Autistic teen are for anxiety as the most significant co-occurring mental health struggle. As the parent of an Autistic teen, I would argue it’s the suicidality that my child struggled with in middle school (pre-dating her autism diagnosis).
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Name	Anonymous
Demographic	Autistic individual
Response	Many have depression, anxiety, and PTSD due to trauma (often from bullying or abuse). ADHD is also a common comorbidity. These conditions make it hard to function in daily life. We feel scared and stressed all the time.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD is significant. It is difficult to differentiate between ADHD and autism as far as inattention and executive functioning. Depression including seasonal affective disorder. It is difficult to maintain a bright outlook when unable to function in our society that rarely provides adequate accommodations. Inability to work enough hours to self-support because of disability is a source of sadness and impacts self-esteem. Anxiety- overstimulation and hypersensitivity to environmental factors like noise and light combined with slow processing of verbal commands increases anxiety. A case manager would be helpful. The health care system is difficult to navigate. Autistic people with executive dysfunction face a lot of barriers to getting mental health care.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring mental health conditions in autistic individuals can present significant challenges. Depression and anxiety may exacerbate social difficulties and impair daily functioning. Aggressive or self-injurious behaviors can emerge, necessitating specialized interventions. Suicidality highlights the critical need for tailored mental health support for individuals on the autism spectrum. Addressing these challenges requires a comprehensive approach that considers both autism and associated mental health conditions to provide effective diagnosis and treatment.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Speaking as my son’s caregiver, I worry for his future, with his mental health in regards to anxiety and depression. This runs on both sides of our family, and he is non-speaking, which will make things 100 times more difficult for someone like him. I do my best to protect and navigate for him and his future but as he continues to get older, and when he hits puberty age, this is truly frightening for me as a parent. My child when he gets excited, he can show some aggressive behavior like grabbing or biting. You can see that his body doesn’t know what to do with all that energy and since he’s only four now, it’s still considered to be appropriate, especially being non-speaking but what’s going to happen as he continues to get older? We are always redirecting, giving him access to chews and Z-vibes.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Challenges come when there isn’t a good resource to help those with autism who also have these conditions. Extra time and research needs to go into how being autistic affects treatments for those conditions.
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Name	Anonymous
Demographic	Autistic individual
Response	Similar to my last response, I believe that no matter the course of treatment that it will feel fruitless in the end. Despite finding productiuve therapists and/or medication, we're all still very different and have a different level of autonomy. Most are intelligent and misunderstood. A lot of us are gifted and if we are given the opportunity to carryout tasks in a way that allowed us to be productive we would be able to make large contributions and perform optimally. If this was all taken into considertion, I'd be willing to bet that most of us would easily out perform others neurotypical minds. Also, it'd likely alleviate pressure from any commorbidities.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Having Autism and not being treated as a child lead to significant anxiety and depression issues. Trauma added to that eventually gave me the diagnosis of BPD. It builds difficulty in processing emotions and physical sensation for life.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I used to self harm for years. It was sensory seeking. When I was able to stim more freely I stopped. I don't even have a desire to now that I have other options. I have a lot of anxiety due to not understanding social situations. I have a lot of depression around being a liar. Having to pretend to be allistic (for example the way I choose to stand or my vocal range). I hate being a clown preforming for others but it's the safest in many situations.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety, adhd, and aggression (aggression caused by anxiety)
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autism is under-diagnosed, especially in women. It is very common for women to end up being misdiagnosed as having highly stigmatized mental illnesses such as borderline personality disorder or bipolar disorder. I was never misdiagnosed, but feel that my anxiety and depression would have been better managed had I known I was autistic.
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Name	Anonymous
Demographic	Autistic individual
Response	Doctors are un-educated on the current research of co-occurring mental health conditions. Many still believe ADHD and autism cannot co-occur despite the DSM-5 having been released over 10 years ago. This issue is especially prevalent in the treatment of women and girls.
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Name	Anonymous
Demographic	Autistic individual
Response	More often, my ADHD diagnosis overshadows my autism diagnosis and prevents others from seeing my autism diagnosis
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I think the most dangerous mental health side effect with having autism is suicidal idealization. We are one of the top group most likely to commit suicide, even as children. most parents are not warned about that. With women there's so many of us that aren't even diagnosed that we fall under the radar and nobody notices that we may be in trouble. Autistics are frequently diagnosed with PTSD. constantly failing does damage our self-esteem. If we're at a job we constantly want to make it more streamlined and easier but others want to just do it the way it's always been done. we notice when somebody says that's not the way we do that around here. It hurts as if we were hit. with children at a young age we need more help learning how to manage our emotional barrage. We don't get help with that in elementary school. And we need it. Teachers don't have the ability to handle the emotional well-being of autistic children in school settings. Every elementary school should have its own psychologist. Usually one psychologist per district. They only handle things like diagnostics. not able to handle the emotional needs of these children.
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenges tend to involve interacting with people around you. Many people particularly teachers, bosses, and those in positions of power, don't understand why autistic people have special needs and react the way they do to things. Particularly though ADHD and autism tends to be the hardest to deal with because they work mix in a way that can make anxiety, depression, and insomnia worse, and also make it harder to function in day-to-day life.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Having depression, anxiety, suicidal thoughts and so much more make even the simplest of tasks such as brushing my teeth, showering, cleaning the dishes, vacuuming, etc. impossible to complete.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety, depression from loneliness and bullying
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Name	Anonymous
Demographic	Autistic individual
Response	*depression/ anxiety/ suicidality- sensory needs are not met, natural stimming behavior is "trained away", and or a lack of understanding and resources about Autism. *poor executive functioning and slow pace of life are disabling in our modern society, and there is not enough actual help or resources to be able to live life as we need. *ADHD co-occuring in a high percentage of Autistics
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Other countries recognize PDA but the U.S. does not. PDA is pathological demand avoidance. We live this every day. The more we demand, the more he retreats. If we give choices, he is more likely to engage. We struggle with anxiety more than depression and also have ADHD. We have sought out education about demand avoidance and have tried to learn new communication methods that offer more choice.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety, PTSD, and disassociation. These are wrapped up together, most autistic people are traumatized because society is centered around things wr can not do and we are forced to interact with that. It starts as soon as you're born as most parents don't know how to parent autistic children properly
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Name	Anonymous
Demographic	Autistic individual
Response	Awareness. It is extremely hard to get diagnosed with autism and ADHD even though it is very clear that the rate of autism in society is much higher than anyone ever thought. And that's just those two. Having a diagnosis of those two can make it both easy and hard to get diagnosed with other things. And once again doctors do not know the rates of comorbidity of anxiety and depression to be on the lookout for it and treat it as such.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Due to autistic symptoms including problems in emotional regulation, it causes a larger struggle with managing mood disorders like major depressive disorder and anxiety, often causing either longer periods of time dealing with these symptoms or more severe and intense episodes of these emotional disorders. In terms of ADHD, it increases issues with regulating stimulation and stress levels regarding the ability to keep my attention on either hyper-fixations or special interests.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	having an autoimmune disease and being on the spectrum has made life hard since i was a kid. I had suicidal thoughts by age 12 and since then have struggled with depression and anxiety to this day (age 22). I have always felt stunted in terms of social etiquette and am treated as if im stupid. there is no space for me at school or at work and accommodations still do not work for me. They are more focused on lessening the burden on the people who aren't ill or who are neurotypical. all throughout highschool i was seen as a lazy student. i was diagnosed with adhd after i graduated and i couldnt even go to college because I hadn't done well in highschool. my only option was to work until something changed. I couldnt hold a job more than 3 to 6 months. I could last longer at jobs that included my interests. I became a mural arts apprentice in 2021. My attention to detail and creative direction was something that astounded my peers and supervisors. after a month i became a teaching artist and mural designer. Still, i was expected to do the same work as everyone else. i ended up burning out and since then have not been able to work much. the only other job i had after that, i was fired from for having too soft of a voice. my anxiety makes it really hard for me to hold conversations or even speak sometimes. i dont leave my house very often. I cant tell when im hungry or when im hurting. if i fill a day with necessary tasks and errands, i cant do anything for about another week.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	There is a lack of accessible resources and support.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I struggle with anxiety, which can lead to meltdowns and aggressive outbursts.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	CEASEFIRE NOW FREE PALESTINE END MEDICAL APARTHEID IN USA FOR NON WHITE FOLKS
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Name	Anonymous
Demographic	Autistic individual
Response	I have ADHD, Social Anxiety Disorder, an unknown depression disorder. I've struggled with suicidal tendencies, and aggression problems. These things have made my life extremely difficult as long as I can remember from being seen as a rebellious youth and that causing friction in my household to struggling to hold friendships because of my behaviors. Over the years, the ADHD has made it nearly impossible for me to finish school and any effort I did make took significantly longer than the average or just outright failed. While I was lucky enough to get a job in something that I've been obsessed with my entire life, it doesn't mean it's easier for me to get through the day to day. Often, I just can't hold my focus no matter how hard I try and even with medication sometime it's just an impossible task to be able to get up and do the job. It's taken me years to get my aggression under control and to stop reacting physically to things that upset me for one reason or another and even longer to understand why I would get so angry all the time. I've tried to kill myself more times than I can count and in countless ways only being lucky enough to seem to be bad at it. While, I've gotten control of my suicidal tendencies I still struggle with passive suicidal ideation and don't have a great view of life and my reason for living.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	On top of ASD, I am diagnosed with BPD (Borderline Personality Disorder) as well as DPDR (Depersonalization Derealization disorder), both stemming from traumatic experiences. I have been working hard to improve myself, but i have mostly had to do this on my own. I have been to many doctors and therapists and tried many mental health drugs, but I don't feel I am really taken seriously by doctors, especially after I disclose i am a diagnosed autistic. I feel as though I either get "babied" by doctors, who don't take me seriously that I have BPD, or the other way around, where I am treated like just another "crazy" woman and am making up having autism for attention. There is so much stigma regarding BPD even in hospital and mental health settings as well as autism and stereotyping. All I want is help, not judgement...
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Name	Anonymous
Demographic	Autistic individual
Response	Because we are not so great at picking up signals including ones from our own bodies, we often don't recognize symptoms of mental health conditions. Lack of diagnosis and cynicism over diagnosis probably are the biggest factors in sustained mental health issues.
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Name	Anonymous
Demographic	Autistic individual
Response	I have depression, anxiety, and ADHD along with my autism which leads to extreme emotional instability that make it excessivly harder to function throughout the day. It makes it hard to be social. I have felt suicidal and used to cut myself in the past. Relating to self harm, meltdown often leads to repeatitive self injuring behaviors as attempts at regulation such as hitting myself and biting myself enough to leave bruises.
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Name	Anonymous
Demographic	Autistic individual
Response	I have both autism and ADHD which can cause a distressing dichotomy. It often feels as if my brain is at war with itself and it is exhausting. I also experience self-injurious behavior in the form of skin picking caused by anxiety or OCD-like intrusive thoughts. The feeling of something "wrong" on my body like a bump or a flake can cause great distress until I can't control my actions. I also have been diagnosed with depression since a very young age that I only recently have realized, along with my doctors, was in reality a response to being undiagnosed autistic. The fundamental misunderstanding that we have of autism and subsequent ignorance of the neurotype caused me so much distress in my formative years that it led to suicidal ideation. It is not my autism that causes me distress, it is the systems around me that led me to believe I was fundamentally flawed.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	I must first list depression, as this is the number one mental health condition that seems to follow my entire life. I believe it stems from the exhaustion of never feeling normal, not accepted despite all my efforts, and my own intense standards placed on myself. I was also frequently isolated, as family did not understand my sensitivites for most of my life. As an adult woman now, I have always "hidden in plain sight," causing emotional distress throughout my entire life. I have always appeared to have "social anxiety" but my Dr. now calls this stage fright, from the performative nature of my outward personality. I have difficulties learning and focusing, but an intense need to learn which causes inner turmoil. I have never been aggressive, however as a teenager I struggled with sucicidal tendencies and self injurious behaviors, as I knew something felt wrong in me. Most people subconsciously try to protect me or shelter me from the world, which causes isolation. Mental stressors cause a great deal of havoc on my body, and I also can fall into executive dysfunction often. I work in the beauty industry because I try to hide this struggle, which in turn causes inner turmoil. Feeling incapable of holding a job, even when I am holding a job, is mentally taxing. I know that I have much to offer, but I am held back by this struggles.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have combined type ADHD and a lot of anger issues, the latter likely stemming from childhood trauma. I also struggle severely with depression and anxiety, especially relating to the symptoms of my autism because I feel isolated/disconnected/incapable in comparison to non autistic people. My father had bipolar disorder and spent most of his adult life in active addiction. Both my father and I always struggled with skin picking.
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Name	Anonymous
Demographic	Autistic individual
Response	All of the above.
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Name	Anonymous
Demographic	Autistic individual
Response	I have adhd, anxiety, mild depression, paranoia, and trauma associated with being autistic. Anxiety is the one that gives me the most issue, i cannot walk outside without panic. talking to people is something that takes 15 minuets to recover from and it stacks up every person i talk to.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding appropriate interventions for an autistic person can be very difficult. Their brains work differently enough that standard protocols need adjusting to prevent the autistic person could be harmed. Depression is common, but shouldn’t be confused with autistic burnout.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The most challenging aspects are those that involve the schizoid or schizophrenic-type elements, for those who demonstrate that pattern of autistic overlap. These are disabling at a level that often prevents any kind of typical functionality. For those who do not have that symptom cluster, the comorbidity of ADHD and insufficient treatments related to it often become the most challenging. The lack of sufficient research of the patterns present in comorbid Autistic/ADHD patients when there is up to a 50% rate of comorbidity is near criminal. Undiagnosed, Untreated, and Under-treated ADHD is often what feeds into resistant "depression" and other forms of self-harm. Far too many clinicians still believe that people identifying ASD/ADHD is more of a fad or that you can only have one or the other and refuse to diagnose both despite the clear presence of both conditions.
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Name	Anonymous
Demographic	Autistic individual
Response	The trauma of being put in behavioral therapies that force you to mask your autistic traits. Pretending to be non-autistic can lead to severe anxiety and depression, and we need a serious look into the emotional health of those who received ABA as children.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety, PTSD, self injurious behavior, suicidality, substance abuse disorder
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I don't experience these so much as just co-occuring, but as a result of living with autism for almost 40 years. Depression comes from the experience of always being misunderstood, having difficulty starting and maintaining connection, and things keep going wrong because you don't understand how things work.
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenge as a result of co-occurring mental health conditions that I experience as an individual autistic person is more so reflective of the amount of education and protections given in society to autistic people. Our country could do a lot better about educating people on the experiences of disabled people and people with autism so that we don't enter into unsafe environments because no one thought to consider helping people learn about what it's like to exist in a body that behaves like mine. This would help people give better accommodations for things that can't be changed
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Name	Anonymous
Demographic	Autistic individual
Response	Suicide is a huge issue. Right now the average age of mortality is 30 years. Between autistic burnout to social isolation we are under supported and made to feel like aliens that are not good enough to exist in this world.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	When it feels like you can not possibly manage ALL of the things wrong with you, managing anything can be discouraging. Being suicidal in particular, encourages you to ignore problems rather than work towards solutions that are kind to yourself. Also, many people do not believe you if you have "too many" things happening. Which can socially isolate you further. Many times, autistic people need change in structure or expectations, not to change their own behavior, and this is often not an option and can make mental health challenges more difficult.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Again, doctors. Doctors are the gateway to getting help. Being believed by doctors is very difficult especially since I am a cis female on top of it. I didn't get diagnosed with autism until I was 26 despite having very clear signs. And I STILL had to fight with the psychologist because I wasn't "autistic enough" for him. I have ADHD and IIH. He did diagnose me with autism but only after I had to question why he left the entire autism assessment out in the first place. Being believed and treated as a competent adult is another big one. I am 27 years old. I have been autistic my entire life. I have navigated this society without the tools I needed and it led to additional problems. Being treated differently because someone knows that I am autistic is a sure fire way to ensure I never go back there. I communicate directly and honestly. The around the tree talk doesn't work and usually ends up making my life more difficult in the long run. Communication is so much easier without interpersonal politics.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Depression and rejection sensitivity lead to high levels of suicidal ideation. Lack of emotional regulation training that is effective for autistic individuals also leads to aggressive & self-injurious behaviors as well as self-harm actions. It's also an undeniable factor that miscommunication impacts things severely: we need things communicated in ways that often make non-autistic people uncomfortable because it 'breaks' unwritten social norms (ex: directness).
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I've struggled with drug-resistant depression for my whole life. It made graduating from high school and college challenging, and makes it challenging to hold down a job. My partner, who is also autistic, has been hospitalized several times for suicide attempts. Obviously this makes work difficult.
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Name	Anonymous
Demographic	Autistic individual
Response	I have been hospitalized in a psych ward 5 times in my life, starting at the age of 12. Autism is a very lonely disorder. You experience the world differently than most people and therefore face challenges other people don't understand. Growing up autistic and trying to make friends is a minefield. I had severe anxiety since I can remember. It was so bad I would be too scared to ask to use the bathroom and soil myself. For most of my life my anxiety has been crippling and has kept me from leaving the house. I have been suicidal for most of my life and have struggled with self harm. It is painful to exist in society as an autistic person
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Name	Anonymous
Demographic	Autistic individual
Response	I have depression. anxiety, and ADHD. My depression effects my mood, sensory issues, and abitlty to do hygyine things when it flares up. My anxitey is mainly soical when it comes to talking on the phone, talking to new people, and public speaking. My ADHD makes it hard to keep rountines and sechuadles.
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Name	Anonymous
Demographic	Autistic individual
Response	Being autistic can make managing things much more difficult and when the thing to be managed is a mental health condition that has similar impacts on ability to manage medications and daily life compounds the issues of both and can make one unable to care for themselves in many, if not all, ways.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD, intrusive thoughts, anxiety, depression
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Mental health providers who are not knowledgeable about autism and who do not know or utilize neurodiversity affirming practices. Some aspects of therapeutic techniques may be inappropriate or even harmful to autistic people. Also it is nearly impossible to find a therapist who is knowledgeable about and willing to work with autistic clients.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have 3 boys. i’ve struggled to maintain the will to live since 2019. I struggle with SI, Depression, Anxiety, CPTSD, ADHD and all the hoops to get [profanity redacted] meds. I think of ways to kill myself and escape all day everyday and i’m just waiting for my 9 year old to get a little older. i’m waiting to be another [profanity redacted] statistic and it disgusts me that every time i try to find something worth living for, i am surrounded by obligations to everyone but me. and then ppl say it’s selfish? let ME be selfish for once! I don’t want to live for anyone else anymore. i hate it here. ADHD costs ppl a lot of money. we throw away food we can’t cook but bought cuz we know we need to take care of ourselves, we throw money at systems to help us be “Normal” only to fail cuz this world isn’t made for us and we aren’t welcome here I physically hurt myself during meltdowns and struggle to maintain relationships cuz meltdown me and normal me look very different and people can’t handle that. my whole life i’ve been too much, too sensitive, too combative, too loud, too childish. i just want to be nothing.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I have depression, anxiety, and ADHD. I have a history or self harm and suicidal ideation. Occasionally when having a melt down I will hit myself and have racing thoughts of wanting to die. It makes my thinking black and white. My anxiety often leads me to avoid social situations
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Name	Anonymous
Demographic	Autistic individual
Response	Many autistic individuals do experience anxiety and depression. This can cause suicidal thoughts and actions. I also notice many autistic individuals have other conditions such as OCD, ADHD, Sensory Processing Disorder, Bipolar Disorder, Eating Disorders, and in my own personal experience many autistic individuals including me have developed Tourettes Syndrome or some type of Tic Disorder.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression Nightmares all night Anxiety Severe sensory issues! Obsessive compulsive Meltdowns, even in adults Isolation
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Name	Anonymous
Demographic	Autistic individual
Response	Finding anyone at all who understands and takes you seriously. Even medical professionals have a tendency to dismiss us. And employers don’t seem to care or be willing to help or work with you to get help.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son also has ADHD and General Anxiety Disorder. His ADHD is more an issue with focus and distraction and does not create any behavioral issues. He is also one of the most emotionally resilient people I know for major issues, but has complete meltdowns when needing to multitask because it's input overload for him.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Autism can make it difficult to communicate symptoms to a provider. Doctors expect an allistic description of a symptoms that may not be how an autistic person perceives their status. For example, the common pain scale used in most emergency rooms is too vague and doesn't correlate to how many autistic people experience or describe pain.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	For me it's depression and anxiety. There's self injurious desires and sometimes behavior, but that is sourced from depression and anxiety, and I feel like I have an okay handle on the adhd.
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Name	Anonymous
Demographic	Autistic individual
Response	depression, anxiety, self-harm
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Name	Anonymous
Demographic	Autistic individual
Response	Depression, anxiety, CPTSD, ADHD, schizophrenia, self harm, suicidal ideation, OCD, eating disorders, alexithymia
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges caused by co-occurring mental health conditions in autistic people is the increased likelihood of having a co-occurring mental health condition such as anxiety, attention-deficit hyperactivity disorder, aggressive or self-injurious behavior, suicidality, etc. Aggressive or self-injurious behavior for example could be a symptom of autism and one's ability for emotional regulation or it could be a symptom of an anger problem or depression which, while neither can be cured it can be managed with affective therapy, medication and healthier ways of coping with aggressive or overwhelming feelings. It is more often that an individual is more likely to have an anger problem and have autism rather than the idea that the individual has an anger problem because they have autism. To effectively know the difference it must be known if the condition is linked closer to one's passed down in the genetic lottery or if it the result of the outside environment they have been subjected to.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	With my child we struggle going out in public. If there is too many people he gets over stimulated this causes him to cry uncontrollably. He also self injures and anywhere we go we have to tie him in a seat or he will elope without any understanding of danger.
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Name	Anonymous
Demographic	Autistic individual
Response	The gaslighting by mental health professionals who don’t know how to identify or treat autism, who don’t understand the daily trauma of living with or masking autism or adhd and the impacts that has & how standard CBT/ACT can be re-traumatizing and invalidating and ultimately, leaves autistic/adhd patients worse off than if they’d never received mental health treatment—it leaves one feeling hopeless and alone, likely contributing to further mental health decline.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I have been in a constant state of burnout from the pandemic and I’m not able to recover because this country is demented and would rather me show up to work half dead every day than waste a dollar trying to let me have a life worth living.
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Name	Anonymous
Demographic	Autistic individual
Response	So far as I can tell, existing mental health practices are based entirely on allistic people. There doesn't seem to be any recognition that common therapeutic paradigms like cognitive behavioral therapy often don't work—or are actively harmful—for autistic people. The impression I've gotten from therapists is that they're taught that viewing oneself as fundamentally different from or alienated from allistic society is a cognitive distortion that should be corrected—and that if we try new social experiences we'll have positive experiences. However, there's abundant evidence that this is incorrect for autistic people—we are different, we're frequently excluded or rejected because of it, our social experiences are often negative. We know it; therapists don't. Being told that your hard-won understanding is incorrect is invalidating and harmful. I've been able to access some useful medication related to mental health issues, but have not found any useful psychotherapy. Regarding suicidality—the risk of involuntary hospitalization is a barrier. I've never really talked to anyone about my suicidal ideation because it doesn't feel safe to do so. I haven't found anyone in the mental health care world who I trust enough, and who I think understands me well enough, to feel safe talking about things that could lead them to take this kind of action against me.
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Name	Anonymous
Demographic	Autistic individual
Response	Having ADHD and autism is like having two people fighting all the time inside my head. My autism likes things to be a certain way and my ADHD likes it completely differently. Executive dysfunction gets more challenging I think. It causes a lot of self doubt which leads to anxiety. I think having better mental health services in this country would overall help. One condition can lead to another and lack of access can be deadly. I know the suicide rates for autistics are higher than gen pop. And it’s under diagnosed in girls and women. Some people don’t even want a formal diagnosis because of the loss of rights for disabled people in the US. That stuff contributes to poor mental health.
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Name	Anonymous
Demographic	Autistic individual
Response	Yes, it IS social isolation again! And the reasons are the same! Because mental illnesses are ALSO disabilities! Secondly part 2: Social safety net, death of communal life, etc etc. [profanity redacted] you, pay me; love me and never let me go.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety, depression, ADHD, and suicidality have all impacted my life in different forms. Anxiety and depression had led to an increase in suicidal thinking especially in younger years as I had only received and diagnosis in my early twenties. This did improve after starting therapy and medications to treat the depression and anxiety. ADHD has effected how i process information as well and made going through the k-12 education system difficult, especially since teachers had not caught on to my autistic or ADHD traits that held me from fully understanding and absorbing learning materials. I believe being female has impacted this as well, since I did not appear to be like other autistic/ADHD children or the boys with “textbook” traits. This also held me from perusing higher education as I had felt there was something wrong with me not being able to learn “properly” prior to receiving my diagnosis.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Depression Anxiety
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Name	Anonymous
Demographic	Autistic individual
Response	many autistic people consider suicide as a result of social isolation and unstable interpersonal relationships. They may also suffer from CPTSD from trauma faced throughout childhood. Catatonic symptoms such as verbigeration, echopraxia, grimacing, and withdrawal can lead to further communication difficulty. dissociation/depersonalization can often disconnect autistic people from reality. And substance abuse leads to further feelings of emptiness.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	CPTSD, ADHD, major depressive disorder, generalized anxiety, and suicidal ideations.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Depression Anxiety Bipolar Borderline personality Disorder
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have ptsd, depression, anxiety, OCD, ADHD, and I have struggled with anorexia as well as dermatilliomania. Finding treatments that works for me took over a decade as my depression is treatment resistant and that had to be treated before I could really work on everything else. My anxiety kept me from socializing with new people for 4 years at one point and even seeing old friends was hard. My mental health conditions keep me from feeling secure in any job I might have. My child has anxiety and is suspected to have ADHD (we’re scheduled for testing). Their anxiety makes going anywhere impossible at times and contributes significantly to their sleep issues. They have had panic attacks since they started preschool at 3 years old.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	ADHD Aggressive behavior OCD Anxiety
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Name	Anonymous
Demographic	Autistic individual
Response	Conflicting needs to cope or improve both conditions. Hard to find appropriate medication.
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Name	Anonymous
Demographic	Autistic individual
Response	Navigating life with both autism and co-occurring mental health conditions like anxiety can feel like walking a tightrope. For someone who's autistic, the everyday social challenges and changes in routines become even more daunting when anxiety is in the mix. It's like being in a constant state of alert, where every social interaction or unexpected change can set off intense worry or stress. This heightened anxiety can amplify the inherent difficulties of autism, such as communication struggles or sensory sensitivities, making them feel even more overwhelming. Finding the right support can also be tricky; it often feels like you're trying to explain what's going on in your head to someone who's speaking a different language. So, dealing with autism and anxiety together is about more than just tackling each issue separately; it's about understanding how they intertwine and affect every aspect of life.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Symptoms of ADHD can often clash with symptoms of autism— adhd asks for more stimulation which can set off autistic overstimulation. Most public spaces are not designed to accommodate the mental health needs of people with autism and co-occurring mental health issues; it’s not even considered when planning spaces. Traditional and the most accessible forms of therapy also do not effectively treat mental health conditions plaguing autistic people.
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Name	Anonymous
Demographic	Autistic individual
Response	drug addiction and alcoholism.
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Name	Anonymous
Demographic	Autistic individual
Response	The combination of anxiety, depression, ADHD, and autism wreaks havoc with my brain. I have never been able to sustain a relationship with another human because I’m terrified to be myself with them and hyper vigilant for bullying and betrayal. Bullying from other people is not listed, but the most devastating part of autism is how other people treat you. I find myself completely alone now and probably the most comfortable I’ve ever been.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	ADHD, anxiety, PTSD (specifically from the need to mask AND high risk of early childhood abuse). All are federally financially unsupported past childhood / age 26, particularly when the person/person's caregivers cannot financially afford proper testing and assessments for autism and comorbid psychiatric disorders.
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Name	Anonymous
Demographic	Autistic individual
Response	Inability to verbalize what is wrong, very self aware making it hard to change behaviors or thought patterns/attitudes, self-harming behavior caused by meltdowns, meltdowns in generally are traumatizing and physically exhausting, easily frustrated
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Depression, Anxiety, ADHD, Suicidality, Schizophrenia, Bi-polar Disorder, NPD
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Name	Anonymous
Demographic	Autistic individual
Response	Again, as an Autistic individual, I do not feel comfortable speaking on behalf of others but, my experience indicates that social anxiety has been the hardest as well as not getting a diagnosis until I was 31. I spent so long struggling and I did not know why.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have treatment resistant depression, anxiety, adhd, and very very bad siucidality. Because of the extent of my depression, I'm unable to get a job or finish my college degree even though I only need 5 more credits to finish. Getting up in the morning is nearly impossible as I'm immediately plagued by aggressive suicidal thoughts.
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