Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 1

Question: What are the most significant challenges caused by co-occurring physical health conditions in autistic people? (Examples of co-occurring physical health conditions: gastrointestinal disorders, sleep disturbances, epilepsy, sensory and motor challenges)

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	I am already perpetually exhausted and feel I never get quite enough sleep, rest, or recovery time from my obligations. Adding in the co-occuring physical health conditions exhausts me further. I have to push back on the idea that sensory challenges are some separate, co-occuring condition rather than something baked in to autism. Sensory challenges are just a part of autism, and those have to be mitigated with aids such as headphones/ear protection and sunglasses. Creating a world in which people are not so controlling of others that they balk at someone wearing headphones should be the ideal goal. I'm also concerned that scientists think they can or should make our sensory challenges go away because in the correct environment those can be an asset. It's just that none of us lives in the correct environment. Motor differences are interesting as not all autistic people have them. I certainly do and it would be nice to fall down less I suppose. Dyspraxia is the one piece of my autism I'd like to completely jettison. It's legitimately dangerous and I've had so many injuries over my lifetime that would not have happened if I didn't have motor challenges.
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Name	Aaron
Demographic	Autistic individual
Response	My sensory issues make it harder for me to stay calm out in loud public spaces like clubs/bars without being overwhelmed. I have trouble falling asleep and staying asleep most nights between sensory issues and insomnia. I also have to be near a bathroom most times of the day in case my stomach issues flare up.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sensory challenges seem to be most significant in both children and adults with autism. While the school system is improving in providing sensory accommodations for children, it seems most adults don't know how to advocate for this in the workplace and/or are not allowed sensory accommodations in the workplace.
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response	It varies for each autistic person. Personally, my biggest challenges are all sense related. The world is loud, like my sound sensitivity has been turned up to eleven, but the sounds all get jumbled in my head so I often can't understand spoken words. I also can't tell the direction sounds are coming from.
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Name	Abi Lea
Demographic	Autistic individual
Response	A lot of autistic people have mobility issues caused by co-occurring conditions like dyspraxia and connective tissue disorders like HEDS (Hyper-mobile Elhers Danlos Syndrome) and HSD (Hyper-mobile Spectrum Disorder). This can cause significant challenges, such as difficulties driving or obtaining a drivers license and difficulties maintaining employment. For me personally, poor co-ordination and spatial awareness has meant that I have never been able to drive. Joint pain and mobility issues caused by connective tissue disorders can make working very difficult, painful or impossible for some autistic people. Sleep disturbances like insomnia, vivid nightmares, having Delayed Phase Sleep Syndrome, and sleep apnea, can seriously impact our quality of sleep and make it more difficult to participate in and handle the activities and stressors of everyday life. This can in turn impact our ability to work, complete daily care tasks and lower our overall quality of life.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	There is lack of interdisciplinary study of neurodevelopmental disabilities (NDD). There are studies of higher lead level in autistic individuals, but yet, there is no mandatory lead tests, no interventions. Most people on the spectrum have low skeletal muscle mass and there are studies correlating poor skeletal muscle mass and executive functioning, which most autistic individuals struggle with. Poor muscle mass also leads to other health problems and physical disability. Most children on the spectrum are sensitive to certain food groups and are likely to have nutritional deficiency and gut issues. However mainstream medical community does not address this. Same with sleep issues. Studies point that individuals with NDD have sleep issues including sleep apnea. There is not cultural competent interventions to ethnic minorities. Most families struggle to access services. Waitlist for diagnosis is almost a year long, and same for most of the services. Most individuals with NDD and their families struggle with poor mental health, mostly due to lack of support.
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Name	Adam
Demographic	Autistic individual
Response	It is harder to keep a schedule because of my sleep issues. early mornings I have lots of energy but by mid day I am drained and can not keep up with social demands, My sensory system gets overwhelmed easily it affects the type of food I can eat to the fact I can’t swallow pills , I have to have soft things to keep me calm, and I can’t handle large crowds.
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Name	Adam Wehn
Demographic	Autistic individual
Response
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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	Gastro issues interfere with work consistency impacting performance reviews
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Name	Adrienne Benjamin , Parent/Gaurdian
Demographic	Family member of an autistic individual
Response	Sleep disorder: My daughter has Level 3 Autism, she is currently 27 yrs old, totally non-verbal. For most of her life she has had a severe sleep disorder, waking up after an hour like it's morning, or not falling asleep till 2am. She is currently on a lot of medication to help her sleep. Ambien, Estazolam and Melatonin. Irritable Bowel Syndrome: Terrible episodes of diarrhea for years. Allergy testing revealed lactose intolerance. Changes made did not solve IBS. Currently on Viberzi which helps. Self Injurious Behaviors: Hand biting, hitting her head when frustrated, or annoyed. Obviously related to her non-verbal autism.
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Name	Advocates of Autism of Massachusetts
Demographic	Representative of advocacy organization
Response	This comment is submitted by Advocates of Autism of Massachusetts, a state-wide grassroots association of self-advocates, families, service providers, and concerned citizens advocating on behalf of autistic people in our state. Many people with autism face a diminished quality of life on a daily basis due to co-occurring health conditions. The impact of certain co-occurring conditions can even result in premature death (e.g., catatonia, epilepsy and seizures). Moreover, due to communication difficulties and other manifestations of autism in an individual, these conditions can be challenging to diagnose and treat, leading to chronic discomfort and pain and a worsening of the co-occurring conditions. Medical conditions are not always observable, and many individuals on the spectrum cannot describe their discomfort or pain with any specificity. Due to sensory challenges, many devices and tools used for diagnosis and treatment may be unavailable (e.g., inability to tolerate attachment of leads to complete an EEG in connection with seizures). Oftentimes, the symptoms of co-occurring conditions are dismissed as “just part of autism” and go untreated, are treated with inappropriate behavioral interventions, and may worsen and lead to further complications.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response	I have intense bodily pain and joint problems from the co occurrence of hEDS. I struggle to be able to work not from home because of this. My gastrointestinal issues make it difficult to live my life and little my diet beyond the sensory issues autism causes.
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	One of the most significant challenges is recognizing that these co-morbidities are common with autistic individuals - and that these co-morbidities affect both health and the quality of life. Research on how to treat co-morbidities has been sparse. Here is a list of co-morbidities that I have observed after 30 years in the autism trenches. 1. Gastro-intestinal Issues. A sizeable percentage of individuals with autism have issues related to eating, digesting, and eliminating food. For eating, this can include everything from severe allergies to foods, to extremely restricted diets (malnutrition), to pica (eating non-food objects and needing surgery to remove them). I've seen problems with explosive diarrhea, fecal smearing, and constipation. 2. Epilepsy and Seizures. One key point is that seizures affect approximately a third of autistic individuals - and seizures are rarely perfectly controlled. 3. Sleep problems. 4. Hypo-Hyper sensory sensitivity. Many individuals with autism have difficulty with sensory overload due to inability to handle light, sound, or texture. Others have "hypo" systems - like my son, who didn't feel pain.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	All of these and I didn’t know they were related. Sensory issues are probably the worst.
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	Sensory challenges. Ringing in the ears from hearing multiple frequencies affects concentration and wears you out. It is like you using energy when you are doing nothing. This is especially bad when multiple noises overlap or you need to concentrate on multiple things. It can affect your sleep as well. I have sleep apnea, but in addition to that the ringing from a previous over stimulation can affect my sleep and as a result the next day I could be more tired. It is very frustrating that when I am off of work I still have to expend energy from being constantly overloaded during driving or doing tasks I cannot control.
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Name	Alan Owen
Demographic	Autistic individual
Response	Sensory issues. Many meltdowns and difficulties with work are caused by sensory issues, and they exacerbate social difficulties, making it harder to interact with others
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Sleep disorders, eating disorders, sensory processing disorders, OCD
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Name	Alex
Demographic	Autistic individual
Response	Sleep disturbances which cause emotional disturbances, sensory over load, gastrointestinal disorders, heightened sense of touch, Elohs danlos syndrome, hyper mobility, hypothyroidism, struggle with allergies to the point of avoiding vaccines due to allergies.
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Name	Alex
Demographic	Autistic individual
Response	The most significant challenges are receiving care insurance forces doctors to listen so little they dismiss or refuse to test or treat these conditions confusing pattern recognition ans years of research for trend following. Having these symptoms untreated also leads to an inability to work or an inability to work without being discriminated against. Only 15% of diagnosed austic adults carry on successful stable careers while most are unemployed and chronically I'll despite having the ability to be incredibly diligent and overworking employees.
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Name	Alex
Demographic	Autistic individual
Response	In my particular case, sound and (non-epileptic) light sensitivity are on the severe side, causing pain like stabbing needles in my brain, eyes, and ears. Base from heavy machinery and loud music can cause crippling discomfort, even in my own home without significant recourse. I can wear earplugs and sunglasses when I can reasonably predict it, but i cannot wear both all day every day.
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Name	Alex Curtis
Demographic	Autistic individual
Response	Sensory, motor, and sleep disturbances are the most common I have found. I take melatonin at night to help avoid waking up repeatedly, not being able to sleep, etc. For sensory I wear sound canceling headphones and avoid certain textures. Sometimes this makes it difficult to go to certain loud places.
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Name	Alexandra Carlson
Demographic	Autistic individual
Response	I can only speak to personal experience. It can be hard to sort out where the problem is. And a problem with one part can cause a cascade of problems with the others. Am I depressed because there's no sunlight? Because my thyroid is low? Because my insulin resistance is graduating to diabetes and I'm starving while gaining weight at the same time because government nutritional information told us fat is bad and shoved tons of extra sugar in all foods? Or is it autistic burnout... which was never a possibility because nobody recognized I am autistic until I was 30. Getting anything diagnosed and finding a treatment was difficult because of this. My pediatrician told my mother being moody at age 10 was normal, but then we discovered my thyroid was low, so solving that should have solved everything, but it didn't... etc.
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response	Understanding of complex health needs by medical professionals, lack of autism accessibility in physical health care providers offices and lack of physical condition accessibility in mental health care provider offices,
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	Undiagnosed Ehlers Danlos syndrome or HEDS, possible POTS, sleep problems (getting to sleep), sensory issues.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Epilepsy, connective tissue disorders, hypotonia, fine and gross motor challenges, sleep issues.
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Name	Alia Campagnone
Demographic	Autistic individual
Response	Gastrointestinal disorders, vascular compressions
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
Response	Insomnia, sensory issues, food sensitivity, digestive issues, headaches, widespread pain, functional regression
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
Response	Our son’s sleep challenges began in infancy when we had to resort to using the sound of a hairdryer to soothe him and continued into adolescence with significant anxiety at bedtime every night. At age 15, prescription medication finally brought it under control. However, that medication has side effects that we must continually watch. Diagnosed with Sensory Modulation Disorder at age 4, he put in 3+ years of OT work, yet still struggles to cope with the noise, smells, and visual overwhelm of everyday life. As a hidden disability, it is particularly insidious at school, as staff don't understand how difficult just being at school is for him.
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
Response	To me keeping calm when it is needed by others. To be experiencing issues caused by or in tandem to autism and then having others not understand and now have to shove it down and essentially pretend they aren't happening or to have a doctor tell us there is nothing wrong its in your head.
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response	Fibromyalgia/chronic pain, ME/CFS, dyspraxia, insomnia, IBS, food intolerances, and misophonia/sound sensitivity.
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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	This response is being submitted on behalf of AGENDA, or the Alliance for the Genetic Etiologies of Neurodevelopmental Disorders and Autism, a group of patient advocacy groups, parents, researchers, and stakeholders with rare genetic forms of autism, many times either de-novo or recessive inherited mutations. Almost all these individuals meet the criteria for a neurodevelopmental disorder, which is not surprising because of the function of the genes impacted. A high percentage also meets the criteria for an autism diagnosis. These genes are pleiotropic, and in many cases are biologically linked to the co-occurring conditions. Therefore, it is critical that those with these conditions have genetic testing to better understand and possibly treat the condition. ● Epilepsy / Seizures ● GI ● Catatonia ● pulmonary/respiratory ● Hypotonia - scoliosis, difficulty coordinating cough response, musculoskeletal issues ● Susceptibility to infection ● Sleep problems, ● Pain tolerance
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response	Gastrointestinal disorders make it difficult to work outside of the home. Sleep disturbances make it difficult to reliably make it to work at 8 a.m.
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal issues, sensory needs, sleep problems, issues with eating
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances are very challenging as a lack of sleep makes it impossible for both the child and parents to function well. Sensory challenges are also difficult to carry out daily tasks and have children calm.
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response	sensory challenges, especially overstimulation of noise and touch. I also work with patients who seem to have much more serious/common hypermobility disorders that greatly affect their functioning.
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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	co-occurring illness is a huge issue for my family member who has both autism and mental illness; finding treatment is next to impossible as doctors want to treat one illness/symptom at a time rather than treating the entire person. They have gastro issues, a sleep disorder, sensitivity to chemicals against their skin & additional sensory disturbances.
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Name	Amanda Kulesza
Demographic	Autistic individual
Response	Sensory and motor challenges
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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	Sensory processing disorder. The feeling of a shirt can feel like you are physically on fire. Eating challenges. Being physically incapable of eating because food is the wrong texture for days. The inability to find something to eat is maddening.
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep apnea, insomnia, ARFID, sensory sensitivity, ADHD are all often co occurring. Sleep apnea and insomnia limit the sleep necessary for functioning. Autistic people do not rely on 8 hours of sleep and can often function extremely well with 6 or less. Autistic people may sleep in short intervals more frequently. ARFID and sensory sensitivities make eating more ritualistic. Autistic people often prefer the same foods and textures over new options. They will have patterns of eating because the brain will eventually process the food as “different” and a new cycle will start. This is most likely due to our evolutionary history as hunter gatherers when a bison could last weeks, or we were in an area with more edible vegetation. Co morbid ADHD points to this ancestral commonality as well. The intervals of sleep, food and sensory intake, and ADHD functions would have been highly beneficial in humanities primitive development. I would argue that a lot of our “challenges” are only challenges in our current society and environments. In the right environment most autistic people would not see them as challenges but beneficial skills.
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The most significant challenges I face daily are sensory issues, sleep challenges, and gastrointestinal problems. I am hyper aware of every sound and feeling in my environment, and am very sensitive to light. It's like my nervous system is constantly on high alert. The sensory overwhelm from leaving my home to do basic tasks like grocery shopping or sitting in the parent pickup line can cause me to be extremely anxious, exhausted, and frustrated. Meanwhile I struggle to sleep when I'm supposed to, and generally can't sleep until I'm too exhausted to be upright anymore, and then I struggle to wake up. Unfortunately I have paradoxical reactions to medications I've been prescribed to correct this. Finally, my stomach is always upset. If I eat anything, I'm nauseated. These things together make it challenging to function daily.
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Name	Ambree
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Amelia
Demographic	Autistic individual
Response	I have difficulty working in group settings due to physical pain, need for urgent bathroom breaks, and the sensory problems that come with hearing others fidget/chew/cough as well as the lighting and temperature. I have terrible sleep habits and often either need to work night shift which lowers my life expectancy or I go to work tired everyday on day shift. With my constant physical pain, I can't do a lot of manual labor jobs but am also told that sitting jobs are bad for me too. I feel like I cannot succeed in my own country.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	I have a long history of gastrointestinal issues that went largely unexplained for most of my young life, as well as lifelong issues falling and staying asleep. My primary concern when it comes to co-occurring physical health conditions and autism is the tendency for the symptoms of autistic people to be ignored or not believed. I am a late-diagnosed autist (diagnosed in my early 20s). When I was growing up, the things that bothered me were often written off as me being "too sensitive." The lights hurt my eyes? That's me being dramatic. The TV is on too loud? I'm the one being disruptive. This principle also applied to physical health issues. I would complain about gastrointestinal problems and I would be dismissed. Several years later, I discovered that my gallbladder wasn't working correctly, but I didn't learn about that until I had to get it surgically removed. Many autists have severe co-occurring conditions such as epilepsy, but I do not. There should be ample resources for those who do.
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	One common challenge is delayed access to care related to the misinterpretation of physical symptoms that present in an autistic individual. Co-occurring physical health conditions can cause pain, but pain can be difficult for autistic people to communicate, which often results in delays in care and delays in intervention. Additionally, metabolic syndrome and obesity are significant challenges as a result of nutrition and/or feeding difficulties and side effects from medications. For example, weight gain and metabolic issues are common in older youth and adolescents, as food is often used as incentives for desired behavior, which can be exacerbated with poor access to recreational activities. Other co-occurring physical health conditions that coincide with many individuals on the spectrum having fine motor deficits, sensory sensitivities and oral motor deficits include gum disease, tooth decay, and total tooth loss. These conditions create challenges with eating, communication, socialization and their overall physical health. These conditions also coincide with access challenges because many individuals on the spectrum do not have the appropriate access for medical or dental treatment for these conditions and/or their autism-related symptoms, such as behavior issues, or touch, taste and texture sensitivities. This makes it very difficult for them to receive appropriate medical care, preventive care, or other programs and services needed to address these conditions.
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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	Given that many physical health conditions co-occur with autism, one of the most significant challenges is increasing medication complexity (PMID: 28750547). This represents clinical challenges for the individual taking medication due to high pill burden as well as for providers prescribing medication who must manage complex drug-drug interactions and drug-disease interactions. Co-occurring physical conditions may limit medication options available to treat symptoms of autism or co-occurring mental health conditions. Additionally, increasing the number of medications can lead to more side effects, which can lead to a medication prescribing cascade where medications are added to treat a side effect from a medication. Another significant issue is the difficulties in communication between specialties, which could potentially lead to drug interactions or a fear of making medication changes to avoid exacerbating a physical condition. Board Certified Psychiatric Pharmacists (BCPPs) may serve as the bridge between multiple specialties to assist with medication management for autistic individuals in outpatient and inpatient settings. This public comment response has been compiled by BCPPs who work with autistic individuals, on behalf of the American Association of Psychiatric Pharmacists (AAPP).
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response	Maintaining gainful employment is difficult because of sleep issues. Also, getting accommodations for sensory issues is difficult as employer's see noise canceling headphones as a safety issue (not able to hear fire alarms).
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
Response	Visual impairment
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Name	Amy Cox
Demographic	Autistic individual
Response	Severe sensory issues, rampant anxiety.
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Trying to walk a tight rope to manage competing needs followed by an exhausting cycle when I inevitably slip on the rope.
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Name	Ana Pereira, Mother of an amazing autistic boy
Demographic	Family member of an autistic individual
Response	My son is three years old. He does not sleep thru the night, I don't know what a full nights sleep feels like anymore and that causes issues in the family. He has GI-issues and is very picky eater. he also self injures himself. Cant be taken out in public without some sort of restraint (due to eloping). We have not had the ability to rest or vacation in years. Also deters us from family reunions or functions that have a lot of people or noises so we don't have much of a social life as he begins to scream or hurt himself.
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Name	Ananya Rishi
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- Healthcare management. - Routinely self-care once provided with treatment plan. Organising and adjusting schedule based on sudden health flare-ups. - Commitment to preventive care. - Managing health-care and daily life. - Communicating accommodation needs.
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Name	Andie
Demographic	Autistic individual
Response	My sensory challenges cause significant challenges during my day-to-day life. College classes, especially those in large lecture halls with very close proximity to peers and lots of sensory stimuli, can be very difficult and can cause long lasting dysregulation. Many social events are simply not doable for me due to loud and unpredictable volumes and crowded conditions. This has made forming connection and friendships difficult.
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Name	Andrea Barlass
Demographic	Service provider, health provider, or educator
Response	I have observed to see several children diagnosed with Autism Spectrum Disorder (ASD) also have a diagnosis of a developmental disorder, speech delays, sensory related concern and delays in ADL's (which are common symptoms/characteristic associated with ASD).
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	Sleep challenges ongoing (my child is 13), early gastro issues lasting until age 8, misophonia
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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
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Name	Andrea Hammond
Demographic	Autistic individual
Response	Personal Experience: Sleep Disturbances, mainly insomnia. This makes it hard for me to enjoy life and hold down a job, and even drive. Sensory. Noise and light are my greatest struggles though I do struggle with the other senses as well. Constant exposure to noises and light cause me to have migraines and feel physically fatigued. I also struggle with motor like challenges, for example, I struggle with vertigo and balance, perceiving the distance of objects correctly, like running into walls, accidentally hitting my head on cabinets and counters, parking away from other cars because I can't tell how far they actually are, etc. This causes me to accidentally injure myself constantly or damage my car on curbs, poles, etc. if I am not very cautious. Other physical health conditions I struggle with are tinnitus and ear aches, and GERD. To my knowledge, other Autistic individuals have a high comorbidity of things like Ehlers Danlos Syndrome and POTS. I personally have not been diagnosed with these but I know of many other's who have.
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	He has not lived with me in a long time but I do know that he can be up all night.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	To be completely honest there are quite a few. 1. Hyper photosensitivity allow sudden bright flashes of light or glare to cause me physical pain and even temporarily stun my body physically I call it the "Flashbang" affect. 2. Poor Interception and Preprioception, Random Spasms and Affects on Motor Skills. Autism has many physical effects people don't see, everything from issues which slack muscles, to the inability to sense when you need to go to the bathroom until it's too late or not sensing it at all until it's already happened. This is why many autistic youth and adults wear incontinence products / diapers some adults may have an issue with it their entire life with it worsening into adulthood. You can imagine what this does to on social life if you don't find people who accept you. One of the bigger problematic things is how it affects your ability to move through the physical aspects of executive dysfunction.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	Of the examples listed, my spouse displays issues with her gastrointestinal system and bowel movements on a regular basis, great difficulty getting meaningful sleep due to waking up (and also frequent heartburn), has issues with sensory overstimulation (particularly noise, but also the taste and feel of certain foods). She also experiences minor issues/"klutziness" with general motor functions on a daily basis.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response	When I was much younger, I struggled with insomnia. Sometimes, it would take hours for me to fall asleep. When I was about 16, I started to have the opposite problem where I could easily sleep for up to 14 hours straight. I also have sensory issues such as extreme sensitivity to sunlight, sensitivity to sound, and a strong aversion to the sensation of being wet. I also can't stand the sensation of my skin touching grass. And yes, walking in the grass with wet feet is a literal nightmare for me. In fact, just writing that sentence makes me cringe so hard that I viscerally feel the need to throw up. I always carry some kind of noise reducing/noise cancelling device with me at all times and I wear sunglasses religiously. The most difficult sensory issue to live with is my aversion to getting wet. This makes it incredibly difficult to shower, wash my face, do the dishes, wash my hands, and/or brush my teeth (my personal sensory hell). Unfortunately, I also struggle with an obsessive need to constantly rinse or wash my hands which I believe is OCD. In eighth grade, I washed my hands so often that they would crack and bleed. One of my biggest struggles, though, is my digestive system. When I was about 14, I started experiencing constipation, gas, bloating, inappetence, occasional nausea, occasional diarrhea, and all sorts of abdominal pain (dull, sharp, chronic, etc). I'm 22 now and I still deal with these symptoms almost daily (not all at once, usually 2 or 3 at a time).
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	onstipation, celiac disease, catatonia, obesity, restricted eating and sleep disorders are just some of the health conditions that commonly affect the autistic community. Restricted feeding in particular can lead to more medical issues, specifically lower bone density causing concern for osteoporosis. Often, the symptoms of physical co-occurring conditions can lead to diagnostic overshadowing, a clinical error wherein physical symptoms are misattributed to autism, leading to inadequate treatment. Sensory sensitivities further complicate matters, as they can alter the expression of physical symptoms and pain, making diagnosis and treatment for co-occurring conditions more challenging. Autistic people may also experience medication sensitivities, further complicating treatment plans. Health disparities in autism, coupled with increased risk for conditions like epilepsy and GI disorders, underscore the need for timely and appropriate medical intervention. Failure to address physical health conditions can lead to early morbidity and mortality. But accessing care remains a challenge for many. Addressing complex needs requires a team of specialized physicians who understand autism and can provide a level of care that is inaccessible to many autistic people, particularly in underserved communities. Many are forced to seek care in the ER, where staff often lack the necessary expertise to serve autistic patients.
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	Obesity due to lack of activity, social engagement, and sensory issues. Partially addressed during school years with PE and Unified Sports programs. Need additional programs to promote life long physical fitness. Hiking, biking, swimming, pickleball groups for adults with ASD.
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Gastrointestinal dissorders. It's not just an upset stomach. Crohns' disease, in particular is a serious auto-imune dissorder that shortens one's lifespan and puts them at high risk for cancer. I am atuistic, my daughter is autistic as well. My daughter has had 2 surgeries for Crohns and has also had cancer twice. She is only 36. My own greatest struggle is the sensory problem of coping with light and noise. I am a high-masking autistic person but too much noise, light, or garish color can rob me of my ability to mask or even speak. Bright, noisy public environments are not accessable to me unless I can prepare to navigate them and allow recovery time after.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response	Just some of my everyday personal physical health challenges: Sleep Issues, Sensory Issues (Sound and Touch), Speech Issues, ect.
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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 have ADHD, SMDD, PTSD, OCD, GAD, and other chronic mental and physical health conditions. I only sleep 0-90 minutes daily, which greatly inhibits my cognitive window, my body's rest and digest, and resetting my system through restorative sleep. There are many foods I cannot tolerate either due to anaphylaxis or texture / taste, which impacts my diet and weight. People often yell at me to stop stimming, which increases anxiety and depression. I am hyper flexible / hyper mobile, which impacts my stationary stability and agility.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances, sensory motor challenges and trouble addressing them due to housing inequity and noise pollution, and epilepsy.
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Overstimulation causes me to be very tense and in physical pain. Very sparse sleeping hyper mobility and joint issues. Can not stand for very long
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response	For our son sleep disturbances and sensory challenges have been a constant.
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response
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Name	Ann, Parent
Demographic	Family member of an autistic individual
Response	Inability to communicate results in aggressive behaviors and undiagnosed medical conditions.
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	I work at two jobs with children, adolescents and young adults diagnosed with Autism. One a school that requirements a diagnosis of Autism and the students also have extreme behaviors and clinically at an inner city clinic providing individual and family therapy to persons diagnosed with Autism. Physical issues related to sleep, gastrointestinal and seizures seem pronounced but certainly sensory issues are present with many. Challenges encountered by the individuals that I work with are most times related to an interference in the individual's ability to socialize (sensory and communication), engage with others (communication, social skills), maintain emotional control (sleep, communication, coping skills). Judgement within the community is prevalent related to repeated behaviors/self-stimulatory and self-soothing behaviors which often are age-inappropriate and inability to self-regulate in the community. Sleep is significant in supporting self-regulation but seems challenging to treat. Gastro issues are often managed with diet and medication but put demands on families financially and to maintain consistency. Seizures seem common among those with whom I work but most respond favorably to treatment with medication but place stress on families. Most sensory and motor issues are treatable but finding replacement behaviors is difficult, coping strategies require CBT training and treatment and with non-verbal persons, this is more challenging.
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Name	Anne Marie Price
Demographic	Autistic individual
Response	Sleep..sensory sensitivities, stomach issues and joint issues.
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Name	Anne Nagel
Demographic	Autistic individual
Response	The biggest challenge is that many healthcare providers focus on my autism and downplay any other medical condition. By attributing everything to my autism, other medical conditions get worse. Sensory dysregulation is the biggest thing. My old doctor attributed increased sensory issues to my autism. I got a new doctor who did a cheap blood test and found a bigger physical issue that had nothing to do with autism. I wasted two years of my life dealing with a problem that was solved by a cheap medication because my old doctor only saw my autism.
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Name	Annettr
Demographic	Family member of an autistic individual
Response	Sensory challenges, sleep disturbances
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Name	Anonymous, public schools
Demographic	Service provider, health provider, or educator
Response	picky eaters Sensory challenges
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Name	Anthony
Demographic	Autistic individual
Response	I struggle with sleeping consistently and find myself in a complete sensory overload state when around other people
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Name	Arianna C
Demographic	Autistic individual
Response	It is very common for autistic people to have issues with our joints and stomachs. Gastrointestinal diseases as well as Ehlers-Danlos, scoliosis, and hypermobility are common.
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
Response	Sleep disorders and sensory needs
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Name	Arushie Nugapitiya
Demographic	Other
Response
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Name	Ash Keen
Demographic	Autistic individual
Response	Autism impacts my interoception making it difficult to sort out what I am experiencing in my body. It also impacts communication which makes it hard to communicate with my doctors
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Name	Ashleigh
Demographic	Autistic individual
Response	For me the biggest issue is whilst we are more likely to have these conditions e.g: epilepsy, the doctors who are more likely to deal with those kinds of things don’t understand how autism works.
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Name	Ashley
Demographic	Family member of an autistic individual
Response	Sensory challenges, focus and attention, pica, sleep issues
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Need for accommodations and compassion from allistic people.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	Finding doctors who are familiar with autism and not just focused on their one expertise. Going to and through appointments, procedures and medication with an autistic individual who needs routine, familiarity and doesn’t like unknow experiences.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Helping people understand the interrelated dynamics between their symptoms and experiences. Help provide effective and sustainable improvements/outcomes.
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Name	Audrey
Demographic	Autistic individual
Response
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
Response	Some of the most significant challenges caused by co-occurring health conditions in autistic people includes gastrointestinal disorders such as IBS (Irritable Bowel Syndrome), issues with chronic musculoskeletal pain, and disordered sleeping, like insomnia and narcolepsy.
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	I have serve GI track issues which cause serve pain and can cause me to be bed ridden by Dr orders. Along with getting to much sensory input causing me to get overwhelmed very easily when I public places.
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Name	Autism New Jersey
Demographic	Representative of advocacy organization
Response	Many individuals with ASD must grapple with increased prevalence of co-occurring medical conditions but experience more unmet health needs. Some cannot find a provider to care for them or they report lower satisfaction with healthcare provider interactions. Their healthcare costs are higher, and their outcomes poorer. There are many challenges to diagnosing/treating medical conditions in ASD patients. Without formal training to treat ASD patients, healthcare providers struggle to effectively provide even basic ASD-friendly care, let alone diagnose/treat co-occurring conditions. Communication differences make it difficult for many ASD individuals to give information vital to diagnosis/treatment. ASD patients without speech may be unable to express internal states/pain or may be unable to use nuanced language to accurately describe symptoms. ASD individuals without speech may express pain behaviorally and potential medical causes for challenging behaviors are commonly overlooked. ASD patients may also receive substandard care because they cannot tolerate the needed procedures. The persistence of undiagnosed/poorly treated medical conditions has more negative impacts than physical deterioration. Pain expressed as challenging behaviors may have a significant impact on educational, vocational, and living options for the ASD individual. A condition undiagnosed/untreated may require more intensive and expensive treatment and may be more difficult and traumatic for the patient.
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Name	Autism Society of Idaho
Demographic	Family member of an autistic individual
Response	Epilepsy Low Tone
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	An under-recognized and often overlooked challenge caused by co-occurring conditions is food selectivity (picky eating), as well as restrictive eating and trouble recognizing hunger cues. Eating difficulties arise as early as 6 months of age in some individuals with ASD and frequently persist into adolescence and adulthood with few options for intervention and support, sometimes associated with gastrointestinal health issues, nutritional deficiencies, and increased stress among individuals and their families. The act of eating is not just a necessary behavior for sustenance but is also a crucial component of social and sensory development. Research is needed to better understand the impact of prolonged eating challenges in autistic adults, how eating challenges relate to co-occurring disorders such as ARFID and anorexia nervosa, how such challenges develop, and how treatments and supports can be developed and refined for autistic children and adults alike.
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Name	Ava
Demographic	Autistic individual
Response	Chronic overwhelm from sensory overload - leading to daily headaches and fatigue. Also comorbid conditions: hyper mobile ehlers danlos syndrome, POTS, MCAS etc.
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Name	Azure
Demographic	Autistic individual
Response	I have EDS which is more common in autistic people. The physical pain it causes me significantly impacts my life. My autism makes me more sensitive to pain in some ways. Many people with higher support needs, who would likely have difficulty finding out about this survey and possibly completing it, have more sever comorbidities.
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Name	B
Demographic	Autistic individual
Response	Co-Morbid disorders. I have Insomnia, IBS, Gluten intolerance, sensory issues that relate to touching things and eating them. Long term motor and physical issues, like toe walking turning into issues with my knees and collapsed arches when standing. Hypermobility is also an issue. I have issues not understanding my body cues, such as hunger, bathroom use, water intake.
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Name	B. Blair Braden, Arizona State University
Demographic	Researcher
Response
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Name	Barbara Baker, parent
Demographic	Family member of an autistic individual
Response	My daughter has gastrointestinal issues, poor sleep, epilepsy and sensory challenges. All of these variables are constantly changing. It is difficult to tell which of these (if not some or all) are contributing to her changing behaviors and moods. I am constantly in "fix it" mode, trying to figure out where to focus attention. It is extremely complicated and something that only I can do. This makes me nervous as we think about her living away from us. No one else will know her and be able to help her like I can.
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Co-occurring health conditions are especially difficult for some autistic people to manage. This is especially significant for individuals that suffer from the sensory, communication, and poor interoception. Autistic folks may have difficulty realizing there is something wrong and even more difficult deciphering what the location or body system is affected. Even if they know what’s wrong they may not have access to medical care or the communication supports needed to access care. Further, because medical professionals have little, wrong, outdated, and/or (often) bigoted views of autism, the patient might not be believed. Autistic patients have medical trauma from being denied informed consent and not being believed. Autistic folks may not reach out for help due to all of these issues which can make comorbid conditions much more significant without intervention.
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Consistent GI issues that require prebiotic & probiotics, sensory issues with clothing softness, not able to tolerate socks, hair intolerance
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Name	Bella
Demographic	Autistic individual
Response	Definitely sensory and motor condition's. Mainly because for major stuff like learning how to drive, leaving the neighborhood on my bike, etc. I have a literal mental blockage that prevents that ability from happening unless I physically push pass it. Along with the fact that I have meltdowns from time-time if something acts as a trigger. Caffeine & sugar also make me pass out.
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Name	Bella Taylor
Demographic	Service provider, health provider, or educator
Response	Fibromyalgia
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Name	Bellamy
Demographic	Autistic individual
Response	I have alot of sensory issues that affect my ability to take care of myself as well as perform the requirements of my job. Smells, lights, and sounds, and textures all become overwhelming very quickly.When my nervous system gets overwhelmed I usually begin to experience muscle ticks that are involuntary and have resulted in dangerous working conditions for me in the past. I also get what I call "tick attacks" where a particular tick gets stuck in a loop and I am unable to stop it for a length of time usually resulting in joint and muscle pain.
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Name	Ben Yerys, Children's Hospital of Philadelphia
Demographic	Service provider, health provider, or educator; Researcher
Response	One of the most significant challenges is identifying speciality care providers who treat co-occurring physical health conditions. The lack of access to care is a major barrier across the lifespan, but felt the most in adulthood.
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Name	Berkeley Fisher
Demographic	Autistic individual
Response	Sleep challenges, sensory issues.
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Name	Bern.W
Demographic	Autistic individual
Response	Dyspraxia Dysgraphia Sensory Processing Disorder Rejection Sensitvity Disorder Tourrettes Syndrome Food allergies Asthma and sinusitis chronically Unable to make enough melatonin, serotonin Depression and high anxiety Demand avoidance
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	The motor and sensory issues affect one's ability to retain employment and the people they live with.
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Name	Beth Greenspan
Demographic	Autistic individual
Response	1. Getting the medical care I need including: support to and from doctors, hospitals for non-drivers, support at the medical facilities, and dealing with medical staff. Because I am not getting the treatment I need, my conditions are worsening as I age. I am sixty now and I have more ailments and less care. 2. Paying for care. As a person on a fixed income with Medicare and Medicaid, and they do not cover many things, such as many good quality dermatological care, dental care, progressive lens eyeglasses, etc. 3. Doctors who have no understanding of challenges for people on the autism spectrum. Doctors who will not work with my needs. And insurance companies, who do not care about actual human beings at all. For instance, I know I have sleep apnea. It was long ago witnessed by a relative. But my doctor says I must go to a sleep clinic, which I cannot do for so many autism-related reasons.. So I am not being treated for this disorder. 4. Self-care. I have so many challenges in this area, and I have no way to improve them. No adequate support, no money, and a whole long list of aversions, rituals, sensory issues, that prevent me from taking better care of myself.
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Name	Beth Malow, Vanderbilt University Medical Center
Demographic	Service provider, health provider, or educator; Researcher
Response	Sleep problems affect 50-80% of autistic people. They not only impact health, but also daytime behavior for the autistic individual and quality of life for the autistic individual and their family. It's a terrific opportunity to be able to impact daytime functioning through improvement in sleep and should be given full consideration in research.
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Name	Bethany Coop
Demographic	Service provider, health provider, or educator; Other
Response	Gastrointestinal issues can make it difficult for families to go out into public. Having a child with incontinence, reflux, and other health related conditions can cause embarrassing situations such as vomit on a restaurant table. We have sought out medical support for these issues and have been told that "its just something children with disabilities must learn to live with." My child has constant sores in his mouth. We never know from day to day if he will be able to keep food down. He has constant stomach aches from the symptoms of encopresis. These physical health conditions can also lead to mental health and behavioral issues.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	Etiology of autism is incredibly important. Neonatal hypoxic ischemic encephalopathy is an understudied etiology for autism, but we know that HIE increases the incidence of autism and autistic traits. In HIE, co-morbidities include a wide range of impact areas including cerebral palsy, epilepsy, autism, hearing and vision issues, learning and attention issues, GI, speech, swallowing and feeding, dysautonomia, and more.
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Name	Betty Lehman, Lehman Disability Planning
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Gastrointestinal disorders: especially in nonverbal; much suffering leading to self-injurious behaviors Hypotonia resulting in kyphosis: low tone is very common yet gets no attention to long term disabling outcomes
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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	Sensory and motor challenges, specific learning disabilities, despite high IQ inability to care for self, mental illnesses, depression.
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Name	Beyza
Demographic	Autistic individual
Response
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The biggest challenge is a lack of knowledge and screening of some of the co-occurring conditions of autism. Namely, Ehlers Danlos Syndrome- Hypermobility Type is a co-occurring condition to autism, and, although my family member had loose joints, frequent subluxes, loose, stretchy skin, and extreme hypermobility, no one ever mentioned it until they had multiple dislocations. Screening would have gotten us PT interventions sooner. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7711487/ The same can be said for a lack of both knowledge and screening of POTS (postural orthostatic tachycardia syndrome). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8756818/ These common co-existing conditions can be rare in the general population, but are not as rare in the autistic population and therefore there should be screening and education. For our family hEDS has profoundly impacted our lives and we are constantly educating physicians who are unfamiliar with it and/or best practices for treatment.
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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 Non epileptic Seizure disorder
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response	In my 10 year old it would be his sleeping patterns. He is able to stay up for days
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Name	Brandy Joy Leigh
Demographic	Autistic individual; Family member of an autistic individual
Response	Finding providers who are trained/specialise and are sensitive to providing comprehensive care across disciplines.
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Name	Breana Turic
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances impact me on a daily basis. I cannot fall asleep like a neurotypical person, sometimes my brain will not stop working for 2-3 hours after laying in bed. Other times I will wake up to use the bathroom and then be unable to fall back asleep for the remainder of the night. These disturbances lower my threshold to adapt to everyday environmental stimuli and social situations making it easier for me to get overstimulated or have a meltdown during situations I may have been able to adapt to if I had proper sleep. For my autistic daughter, motor challenges are one of the issues that impacts her attempts to interact with other children the most as she is unable to play sports, run, do kart-wheels, etc. like the other children. She still cannot grasp riding a bike while all of her peers can. Being unable to engage in many activities that her peers are doing makes the already difficult process of making friends even more challenging for her.
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Name	Brian
Demographic	Autistic individual
Response	Physical health - from pain to GI, all of it.
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	The belief that we are not capable of autonomy and independence. We are more capable that we are given credit for and we can and want to be included in decisions that affect our life. I would like more emphasis on how apraxia interplays with autism and how we can work in partnership to develop solutions to this non-talked about challenge among me and my friends. The stress of being "judged" and labeled causes so much stress which then causes sleep disturbances and other physical struggles
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	There are so many diet restrictions for my son’s gastrointestinal issues. Sensory Processing controls his life. He has to wear headphones and have a chew anywhere we go. The public isn’t educated enough on these issues.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	Some of the most significant ones in my experience have been structural disorders (I have genu valgum "knock knees", medial plica "excessive inner knee tissue", scoliosis, anisomelia "short leg syndrome") Although they've been more minor in treatment, living in society where the symptoms are not as accepted has been very difficult, time consuming, and costly. I've had to see 4 orthopedists before being properly diagnosed for many of my conditions and have been put through physical therapy to no affect to be able to get insurance coverage for my specialist visits and treatments. Being low-income, self-supporting, and a full-time student, this is especially challenging. I would say almost worse than dealing with the conditions themselves. However, the conditions do make it especially hard to work entry-level jobs as often I don't receive physical accommodations and have to do physically intensive labor for several hours, making these co-occurring conditions worse. With sensory issues, I've been able to manage, but as for many of my friends with autism, I know that they have been discriminated against in the workplace, such as being fired or denied a job for having sensory/motor challenges, even when the job was not physically demanding.
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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. Something my clients and I have heard a lot it "Oh, thats common for Autism" blaming whatever ailment on having ASD, with no desire to investigate.
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The most significant challenge is medical providers not having an understanding that everything is linked (I.e POTS and EDS impacts all systems and are not properly diagnosed nearly enough) misdiagnosis and inappropriate treatment plans from GPs who treat every system separately (GI, Neuro, musculoskeletal, Gynecological, etc.)
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Name	Brittany Daniels
Demographic	None Indicated
Response	What about getting needed OT (occupational therapy), PT (physical therapy) and/or needed speech therapy covered under health insurance including Medicaid for autistic adults 21 years old and older?
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Name	Brittany Shidham
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances - I can’t figure out how to get my kids the sleep their bodies need. They just don’t sleep well.
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Name	Brixton Moss
Demographic	Autistic individual; Other
Response	I have POTS (postural orthostatic tachycardia syndrome), and I have noticed that many other autistic people do as well. I have had lifelong insomnia issues, a lot of problems with digestion when I was a child. I have always been extremely sensitive overall. I can feel everything in my body way too intensely all the time. I almost never feel “good”, I’m always uncomfortable and feeling something too much. I have a lot of sensory processing issues. I have to wear noise-cancelling headphones and/or earplugs (Loop earplugs, specifically) when I’m in public, especially places like grocery stores with a lot of ambient noise. I also have sensory seeking behaviors and stim, which helps the stress of sensory overload/“bad” sensory input. I’m not diagnosed with these, but EDS (Ehlers-Danlos syndrome) and MCAS (mast cell activation syndrome) are also extremely common.
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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	Demand avoidance affects all autistic people, especially when co-occurring conditions accumulate stress. Pathological Demand Avoidance especially needs more research to help clinicians differentiate between extreme demand avoidance that occurs during burnout and the unique neurotype of PDA.
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Name	Bryanna
Demographic	Autistic individual
Response	Underdeveloped fine motor skills Food sensitivities Sensory processing disorder Comorbidities such as Adhd or Ocd Insomnia Gluten intolerance Lactose intolerance
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Name	Bryanna, self
Demographic	Autistic individual
Response	I have Migraines, Dysautonomia, Postural tachycardia syndrome, Attention-deficit/hyperactivity disorder, Pervasive Developmental Disorder – Not Otherwise Specified, Attention Deficit Disorder, Depression, generalized anxiety disorder, level one autism, Asperger's syndrome, Obsessive-compulsive disorder, Post traumatic stress disorder, panic disorder, Rejection sensitive Dysphoria, Unspecified Mood disorder, Alexithymia, Oppositional defiant disorder, disruptive mood dysregulation disorder, Pathological Demand Avoidance, insomnia, parasomnia, dream-reality confusion, Body Dysmorphia, Polycystic ovarian syndrome, tachycardia, Pseudobulbar Affect, Premenstrual dysphoric disorder, Premenstrual syndrome, dyspraxia, sensory processing disorder, Avoidant/restrictive food intake disorder, pill dysphagia, Chronic sinus infections, Allergic rhinitis, Orthostatic hypotension, Metabolic syndrome, Insulin resistance, Mixed hyperlipidemia
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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	Bpd, ocd, cyclothimic d, traits, adhd impulsiveness and dysphoric dysregulation. Al dough I still live in a terrifying day to day due to sensory issues and social phobia my greatest challenge from co-occurring conditions is in this lifelong social disabling, which bans me from any kind of co-op on every project I've ever started (as an adhder they mostly never see conclusion😔 anyway)
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response	Doctors are unfamiliar with co-occurring disorders and can be dismissive of autistic individuals self reported symptoms. Our family struggles with gastrointestinal issues which impact our ability to participate in the community. SLEEP IS HUGE. It impacts every facet of life. It is so hard for us to get good sleep. I have spent HOURS trying to find a doctor to listen about my 4yo lack of sleep. No one wants to prescribe anything due to her age. So our family is left not sleeping. This means missed work and school and well as impacts our general health.
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Name	Calen
Demographic	Autistic individual
Response	I struggle with fine motor skills and I am easily overwhelmed by loud noises and bright lights
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response	Connective tissue disorders. Gastrointestinal problems.
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response	a big problem i have is that autistic people experience pain and sensory stuff differently than other people and i’ve never met a doctor informed in how to treat me as an autistic person. for example: i had very rare chronic appendicitis and they thought i was dehydrated for 5 years when i was experiencing what some people call the worst pain of their life
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Name	Callista Markham
Demographic	Autistic individual
Response	In my experience the most challenging co-occurrences are with Ehlers Danlos Syndrome. The condition when combined with neurodivergence are crippling, that initiates a cycle of pain and inflammation that drastically decrease movement and negatively effect digestion to the point that I would rather starve than make myself food. In addition to EDS, POTS makes physical exertion almost unbearable. Having communication deficits increases the potential harm of both of these by not being able to properly communicate needs.
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	Gaslighting from medical community because of communication differences, stereotypes and lack of education on neurodiversity.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response	Gastrointestinal, mental health, sensory processing, motor challenges, sleep disturbances. These all effect my son and the lack of research and provider services for a person effected is completely unacceptable.
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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
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Name	Carolyn T
Demographic	Autistic individual
Response	The most significant challenges caused are through the lack of consideration of these conditions and resources to foster inclusion or assistance.
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	The biggest challenge are behavior related issues associated to Patholigical Demand Avoudance. More definition and explain on ways to support these nervous system issues and greatly needed.
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Name	Caryn Cramer
Demographic	Family member of an autistic individual
Response	Sleep deprivation. Also, when the PDA profile of autism is involved, it overrides a person’s ability to eat, have hygiene (bathe, brush teeth, etc), toiletting, be properly clothed, have basic needs and safety
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Name	Casey Foster
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal disorders can cause alterations of blood sugar levels leading to behavioral challenges as well as risks for other associated health complications. Sensory challenges associated with diet may make having a balanced diet more difficulty and often there is increased cost burden to to accommodate food related sensitivities. Sleep disturbances can affect relationships, place additional burden on care givers, and cause challenges with blood sugar levels and other dietary difficulties.
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	Public spaces are often too stimulating in both a visual and auditory manner. I rapidly become overstimulated, leading to extreme agitation, lack of focus, and headaches.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The biggest challenges faced are both within and outside the home. Having a child with comorbidities makes it harder to determine which behaviors/ conditions to manage first, as well as what strategies to use based on said comorbidities (ADHD vs Autism vs PDA vs treating for sleep apnea). Outside the home, the challenge is the constant educating of other people about Autism/ADHD/PDA and dispelling incorrect information of such.
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response	1) There is the issues of reoccurring ear infections, resulting in several sets of ear tubes, or the concern of it turning to a staph infection..Im speaking from experince. 2) Child having nerve pain. 3) Another issue is GI problems. 4) Being nonverbal, having to have speech therapy, OT as well 5) ADHD/Anxiety 6) The issues of elopement are very scary for a parent. 7) Sleep issues, Sleep Apnea
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastro and toileting issues are the biggest challenges for us
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Name	catherine martell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	sensory and motor challenges
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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 had gastro issues most of his life. He also has sensory challenges, mostly that he does not like anyone too close to him. He also has to have socks on at all times, and will not go barefoot.
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep Disorders Gastrointestinal disorders Sensory POTS Ehlers danlos syndrome PMDD
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Sleep issues (insomnia, delayed sleep phase syndrome, restless leg syndrome, etc), Ehler Danlos Syndrome and other connective tissue disorders (VASTLY underdiagnosed), chronic pain, sensory issues, POTS, PCOS, PMDD, Mast cell activation syndrome, motor challenges tied to EDS and hypermobility, muscle differences resulting in issues with gait, breathing, strength, back pain, joint issues. None of these issues can be separated from the massive rated of co-occurring issues related to complex PTSD and somatic expressions of various additional mental health struggles, including dissociation, nervous system sensitivity and regulation issues, 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	Co-occurring physical health conditions add another layer of complexity to the challenges already facing those with autism. Appropriate diagnosis is challenging, leading to misdiagnosis or a person with autism not getting the appropriate treatment. They may experience pain or discomfort which makes it more difficult to complete everyday tasks and if their expressive language skills are poor they may not be able to convey how they are feeling. Undiagnosed issues can lead to significant health issues later. Certain issues like sleep disturbances disrupt the entire household and can affect a parent's ability to work or care for other household members.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Can't speak for the majority, but based on personal experience and clinical observation, concurrent conditions with ASD create diagnostic complexity that causes some professionals to misdiagnose individuals (as in, diagnostic overshadowing). Concurrent conditions create the opportunity to do things in different ways than others, but they also create problems of feeling more physically and mentally exhausted, and misunderstood by others.
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	My daughter suffers from Autism, Intellectual Disabilities, gastrointestinal disorders, sleep disturbances, many other medical and behavioral condition as some described in the question. My daughter suffers from transitioning impediments and communication delays. We live in Massachusetts. The ASD and IDD adult services are diminishing and, in some cases, non-existing. Presently the adults in our population are not covered by MassHealth for Applied Behavorial Analysis therapy which is a critical Home Base ABA therapy program. When she matured to the adult system MassHealth doesn't cover ABA therapy for adults. ABA therapy is very effective for individuals, their caregiver and families in understanding behaviors and how best to treat the client, their environment, caregivers and families. DDS has been unable to provide a Day Placement. DDS states lack staffing for no opening of Day placements and some cases closing of day placements. It has been reported that there are at least 6,000 people in need of services. This number will continue to grow as what happen to my daughter when she moved to the adult system in Massachusetts. We have tried to find a private day placement; however, we are having extreme difficulty in the state of Massachusetts Transportation Department providing a van transportation company with a driver and female monitor which our daughter requires to travel for safety and decency issues resulting from potential disrobing incidents.
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Name	Charli Barraza
Demographic	Autistic individual
Response	Autoimmune diseases are incredibly common among us and pose a very real threat to our well-being, functionality and livelihoods. Connective tissue diseases, Poly-Cystic Ovarian Syndrome, Celiac and other gluten sensitivities are anecdotally too common in our community to be a coincidence, and tend to flare up later in life after decades of unsupported and unaccomodated attempts at living.
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Name	Charlie B
Demographic	Autistic individual
Response	My insomnia makes it very difficult to navigate 9-5 professional life
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Name	Chris Bruner, Family
Demographic	Family member of an autistic individual
Response	The biggest challenge facing autistic children is a comorbidity of symptoms that is always changing. Example: Comorbidity of sleep disorder, find an effective treatment for sleep, patient then has flare ups in mood control, self stimulation, information comprehension, binge eating, or any multitude of other symptoms. The Dr then treats the newly flaring symptom(s) and then the patient goes back to having sleep disturbances.
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Name	Chris Knobel
Demographic	Family member of an autistic individual
Response	Anxiety and Pathological Demand Avoidance
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Name	chris patton
Demographic	Autistic individual
Response	badass needs in me fearful, hard to get my body moving, nasty beastly body is shadow of me.
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory issues make it difficult to focus and can also push me to avoid situations that lead to overload. Public transportation to a job (that likely has its own sensory challenges) is often too loud, crowded, and smelly. Throw being exhausted from sleep disruption in there and it's a perfect storm for task avoidance and meltdowns or being worn out from coping and masking to the point where it's hard to enjoy personal time.
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response	-Absences (school/work) - Issues in any of the above exacerbate the Autism (ie., less sleep, higher tendency for communication issues, dysregulation, etc) - Cultural stigmas
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	Chronic fatigue, asthma, loss of functioning of daily duties, muscle pain
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	Doctors do not look past autism to understand behavior is communication and a person who has limited verbal communication may self injure or exhibit other maladaptive behavior when sick or in pain. They dismiss people who have autism dx. If a neuro-typical person came to an appointment with same symptoms they would run diagnostic tests.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	When my son, now 19 years old (Level 3 ASD), was about 15 months old, he began to exhibit severe gastrointestinal symptoms as a sensitivity to dairy. We switched pediatricians several times after being dismissed and advised things like, “He’s probably drinking too much juice”. We were finally referred to a pediatric GI specialist. While we waited for doctors to take this issue seriously, I researched and tried an elimination diet, which worked (with agreement from the GI specialist afterwards). We were eventually able to reintroduce some dairy foods. I felt very alone in my journey to help my child. In addition, my son has epilepsy, which started when he was 9 years old. He must take medication several times a day to keep seizure activity under control, and there are times that he refuses to take his medication. We have limited ability to explain how important his medication is because his comprehension of language is low. In addition, his expressive language has huge deficits, and he is unable to express words/details about how his body and mind are feeling, so with medical/psychiatric symptoms, we are always guessing how to change/modify his treatment.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Sensory and motor because they are not addressed by doctors whereas GI issues, sleep and others are. Also a mainly mental health issues. It is hard to find and retain a good psychiatrist and/or psychologist. It’s hard to get medications filled and heaven help you if there is a problem
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	Gastrointestinal Mental health
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	I have trouble sleeping which affects my mental health, relationships, physical health, and ability to focus and function. My autism makes me hyper sensitive to sounds and textures and small irregularities with either one will wake me up throughout the night.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	Allergies to skin and many food intolerances, GI issues, getting them to take their medicines, toilet training (or lack thereof), sleep disturbances like sleep apnea (there’s no way my son would sleep with a c-pap mask), we haven’t been able to even complete a sleep study in years. Dangerous and Aggressive behavior towards people and property, which I detail in the next answer block.
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Name	christine smallin, orange county dmh
Demographic	Service provider, health provider, or educator
Response
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Name	Christopher M Sculley
Demographic	Autistic individual
Response	I was always different and I never seemed to fit in. So I became very reclusive into my adult life. At 51 years old I still bight my nails and am very fidgety. It’s very hard for me to even write this. But if there is anything I can do to help I will do what it takes.
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Pain, Illness/Injury, and Fatigue - caused by sensory overload, social and professional masking, POTS, Hypermobile Ehlers Danlos Syndrome, Mast Cell Activation Syndrome, insomnia/circadian rhythm disruptions, etc. Many autistic people experience fatigue at significant levels, but also desire fulfilling and meaningful careers. Currently, the system is set up to where if you want to achieve "the American dream," you must also ride the line of burnout while working full-time. Riding that line is extremely difficult and requires foregoing much of what makes life itself meaningful - time with family and friends, traveling, creating, etc. One's life is relegated to strict systems and strategies to merely survive. Autistic people are also more likely to acquire all different kinds of illnesses, some mentioned above, that require significant time off of work for surgeries, illnesses, and flare-ups.
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	Ignorant and prejudice institurions e.g. schools, mental health services, doctors, police, social services
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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	This is a broad generalization because autism presents differently in each autistic person, and each autistic person receives a different slate of co-occurring conditions. Speaking solely for myself, the most significant challenges I face from co-occurring health conditions are related to sensory processing issues and sleep disturbances - though the latter may be connected to co-occurring mental health concerns rather than a direct product of my autistic neurology.
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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	The inability for public school systems to provide the care and support for children with co-occurring conditions without outside professional assistance.
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Name	Colette
Demographic	Autistic individual
Response	I was diagnosed with autism at age 72 and I am now 78 and have just been diagnosed with sleep apnea. I started to use cpap 11 days ago. My memory has been deteriorating since 2002 when I first complained to my doctor about it. A at home sleep study was done and I was told I did not have apnea but I had fragmented sleep. Likely this was an incorrect diagnosis and my memory has continued to deteriorate and it is quite bad presently. It is my hope that using the cpap will cause my memory to improve as it usually does but my apnea has likely been present for 22 years so…..
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Name	Colleen
Demographic	Family member of an autistic individual
Response	Sleep always running believing people was used as a mule for drugs
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response	Access to healthcare - providers and health systems trained in autism to sufficiently support need for services - informed/trained providers, ADA accommodations, sensory friendly environments, reimbursable (private insurance & Medicaid) extended visits for people with autism. Access to quality crisis care - psychiatric, trained behavior analysts, facilities, etc.
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	I think the most significant challenge to physical health is that we approach healing conditions from a top down, rational to body approach when the problem is in the body. Cardiac health perhaps being chief among the most potent risk factors to autistic health and lifespan continues to recieve little funding and remains deeply misunderstood in our population. Additionally there are an increasing number of grant applications seeking to see polyvagal theory research in autistics, but there is little to no guidance on what is considered accurately captured Respiratory Sinus Arrithymia. Solutions ranging from bleach consumption to behaviorism make these claims with little to no knowledge of how to actually collect or current neurophysiological literature. What may be helpful is research to establish non-autistic baseline data across ages 3-18 for heart rate benchmarks to serve as a measurement for heart rate against.
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Name	Connie Fitler
Demographic	Family member of an autistic individual
Response
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Name	Coordinated Care Alliance
Demographic	Representative of advocacy organization
Response	Based upon our membership data, over 12% of all individuals with Autism also have a chronic gastrointestinal or genitourinary tract disorder or disease. In addition, approximately 20% of our Autistic population, have a co-occurring respiratory or circulatory disease.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders Sensory integration challenges Motor planning
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	The most significant challenge for autistic individuals with co-occurring conditions is receiving diagnosis and receiving and maintaining care for those conditions. It can often be difficult for autistic individuals to navigate the medical community in order to be diagnosed formally with many co-morbid health conditions. In the case of my own child, because of his communication differences, his complaints were not taken seriously until I had to push for testing after 6 months of active GI symptoms. The GI at UK was more concerned with my son’s psychiatric state. My son did end up having a condition called Eosinophilic Esophagitis and a lot of internal damage. He has dealt with diet restrictions, daily medication’s, and regular endoscopies since which are necessary, but cause him additional trauma. My son is verbal but as many Autistic people do, he doesn’t make consistent eye contact and can be selectively non verbal and unwilling to engage with new people. This has regularly led to difficulty dealing with physicians as many providers feel he should be at an age to speak on his own behalf. My son also struggles with communicating his general health, because he only discusses the symptoms he is immediately experiencing and will not take into account symptoms he is having off and on or the night before which makes it difficult to be screened for regular illnesses. My son also has a sleep disorder and a genetic Allergy trait
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Name	Crow
Demographic	Autistic individual
Response	Sleep disturbance, sensory and motor challenges
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Name	Crystal Neihart
Demographic	Family member of an autistic individual
Response	My son has sensory issues (sounds, new surroundings, etc.) I try to bring him places for example the zoo, or family gatherings, birthday parties, train expos, he loves trains. He gets overwhelmed by all the people, the noises. He has on multiple occasions ran away in fear and put himself in dangerous situations or has panicked so bad that he falls and hurts himself. He has run into the road with traffic not realizing that he could get hurt.
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Name	Crystle
Demographic	Autistic individual; Family member of an autistic individual
Response	Managing multiple conditions and trying to figure out which one is causing symptoms. A stomach ache because you have anxiety isn't treated the same as an IBS stomach ache because you ate dairy.
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	Hypermobility disorders are common among people with autism, and have wide-ranging ramifications, because ALL connective tissues in the body are affected. Ironically, this may manifest as restricted range of motion, as the muscles tighten under the burden of compensating for loose joints and ligaments, to protect against injury. This hypermobility can also affect the vascular system, up to and including Postural Orthopedic Tachycardia Syndrome, a posture-based increase of the heartrate to compensate for a drop in blood pressure when blood pools in the elastic vessels of the legs – most experience this drop in blood pressure as a faintness upon standing, without loss of consciousness, and as a sudden onset of anxiety due to the biofeedback of the racing heartrate. Hypermobility can also cause sensorimotor challenges for hand-eye coordination and balance, because the loose joints deprive us of useful feedback about the orientation of our limbs – this leads to a general lack of bodily coordination, which may cause accidental injury at a disproportionate rate for autistic people.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	Epilepsy, Celiac and Diabetes mean that we need to constantly monitor all food/drink intake and be sure that meds are taken regularly. Any GI or A1C disruption means poor sleep which triggers seizures. Constant observation for seizure activity. Our son's life is monitored every hour he is awake and we sleep with an ear to any unusual sounds/activity. We need to remind day staff about his dietary restrictions. Group home providers in our state will not accommodate his diet restrictions so he remains at home as we age.
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Name	Cynthia Macluskie, Autism Society of Greater Phoenix
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders, feeding issues due to sensory issues resulting in limited diet and interfering with social relationships, ADHD, Obsessive Compulsive disorder, epilepsy, mitochondria issues and genetic abnormalities, sleep issues, sensory issues, epilepsy that presents as violence, motor planning issues, articulation and social pragmatic issues,
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Name	Cynthia Tyler
Demographic	Family member of an autistic individual
Response	As the mother of an autistic child, I have witnessed the co-occurring physical health conditions from nearly the birth of my child. Sensory and motor challenges, including potty training, food aversion, educational structure challenges, and lack of societal support and understanding abound. As my child has grown and aged, it has changed to include gaining a tremendous amount of weight, which has contributed to sleep apnea. Food aversion means that there are only a limited amount of foods my chidl will eat, and those have become more expensive. The types of food also can't be swapped out for cheaper brands, due to the additives like bleached wheat flour and high fructose corn syrup which contribute to heartburn and reflux. Sensory issues also cause skin-picking, which can become infected. We have to carefully monitor hygiene, in order to prevent any further hygiene related issues. Dental problems have occurred, as tooth brushing is its own type of sensory issue, which have only resolved through therapy work and supports. It also extends to psychological health, as media has to be carefully curated to prevent exposure to concepts that my child does not have the current capacity to process, understand and interpret. These will only continue as my child ages into adulthood. This will impact my life as I age and will have to care for him until I die.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	Lack of quality and qualified services. Critical lack of individuals properly educated and trained to care for autistic individuals with co-occurring physical and behavioral needs. There is a critical need to develop college-level curriculum that focuses on caring for these inidividuals.
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Name	Dale
Demographic	Family member of an autistic individual
Response	Constipation creates enormous discomfort and makes life and learning miserable and difficult. Limited motor skills, apraxia, dyspraxia, means inability to complete everyday self-care and basic tasks required to live independently. It also leads to inability to communicate verbally and makes communication using AAC difficult.
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	The most common conditions I see in myself and other autistic people, as well as those in the community are ADHD, sleep, sensory and gastrointestinal disorders.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	Insurance coverage for the conditions and the availability of therapies on public insurances. The availability of resources for families, to make all the pieces fit together (work and home life) while still providing the needed care for person.
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Name	Dana Haff
Demographic	Autistic individual
Response	Autism is frequently associated with hypermobile Ehlers-Danlos Syndrome (a genetic link is being studied). I have been diagnosed with autism, hypermobile Ehlers-Danlos Syndrome, hyperadrenergic postural orthostatic tachycardia syndrome, mast cell activation syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, nonepileptic seizures, metabolic syndrome, a multinodular goiter with carcinoma that required a complete thyroidectomy, degenerative disc disease, an annular tear of a disc, adenomyosis, an adrenal adenoma, and more. I have yet to see a provider who has any understanding of autism and frequently associated comorbid conditions.
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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	I have concerns about mental health conditions and people with autism. There are problems integrating developmental disability systems and mental health systems. I worry about suicide in the autism community, lack of good crisis response systems for this population, and long ER stays while autistic people wait for mental health treatment. I also think more attention should be paid to substance use prevention and sexual health promotion for autistic people.
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Name	Dani
Demographic	Autistic individual
Response	Sensory challenges and gastrointestinal problems
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Name	Danica Allen, Educator
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Limited ability to accomplish the things I want to accomplish.
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Name	Daniele Armstrong
Demographic	Autistic individual; Family member of an autistic individual
Response	All of co-occurring physical health that are specific to each individual affect them differently and to varying degrees. Focusing on a few specific conditions does a great disservice to autistics who have other conditions that they need more medical, emotional, physical and tangible support needs.
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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	Sleep disturbances, seizures due to epilepsy
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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	Challenges caused by co-occurring physical health conditions can significantly affect all activities of daily living. The need for families to change their environment to adapt to the needs of this autistic children and family members. Co-occurring conditions can lead to significant challenges accessing appropriate healthcare, & financial barriers.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Ehlers Danlos connective tissue disorders, joint laxity and instability, problems with dislocation, subluxions, poor skin healing, bruising easily. Fibromyalgia, pain in muscles and chronic fatigue. Issues with POTS balance / dizziness, palpitations varies with degrees of nutritional deficiencies at time as to how bad suffer. Gut biome issues and gastro issues like IBS, constipation, problems with internal organ and soft tissue issues, GERD Sphincter not closing, gas, bloating, chronic coughs, sore throat. Often issues with allergies. Issues with gut also play into being able to digest/swallow food . Also gynecologocial problems extremes periods menorrhagia bladder problems . Back / neck and muscular skeletal problems in general after poor posture strength in muscles and soft tissue impacted by stress and strain and also inability to gain right nutrition. Also, stress and strain impacts peoples ability to utilize and digest the necessary protein and aspects of lactic acid for collagen production from Lysine. Also issues with dyslexia and dyspraxia can cause terrible self worth and issues feeling like failure or not able to do things and problems with parents, peers and teachers when not seeing or understanding hidden disabilities and thinking lazy and getting punished. Also sleep disturbances, issues with ADHD and concentration too. Sensitivity to foods and ingredients and also medicines.
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disruptions, sensory processing Would also love to see research into any connections with hypotonia and hyperflexibility
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Name	Danny Schaible
Demographic	Family member of an autistic individual
Response	Hyperactive catatonia that co-occurs in ASD, particularly with individuals with profound autism. We need better identification, treatment, access to treatment including ECT, and better catatonia scales for neurodevelopmental individuals.
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Name	Danyale Sturdivant
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Gastrointestinal disorders because they are often overlooked and can cause issues such as sleep disturbances as well as behavioral issues. Additionally, ADHD is another co-occuring disorder that is often missed
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	We had to start my son on antipsychotics at age 3 because he was walking my countertops and would not sleep. No safety awareness,elopement
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response	Dear National Institutes of Health, I write to share my struggles with autism, epilepsy, severe sleep disturbances, and sensory issues. These affect my communication, privacy, and work life significantly. Explaining health issues is a major challenge. For instance, mentioning a generalized seizure is often necessary to justify absences, requiring detailed explanations unfamiliar to most. This issue extends to the workplace, especially when seeking ADA accommodations. The process often feels like a battle, making it hard to ask for what I truly need without feeling cornered into accepting less. Moreover, epilepsy-related executive function deficits limit my economic contributions. In a predominantly allistic world, these challenges are magnified. Autism affects communication, so clear understanding of my needs, like missing events due to seizure risks, is vital. When these are overlooked, it exacerbates my struggles. I urge you to consider these experiences in your research and policy-making. Understanding the unique challenges of co-occurring conditions like autism and epilepsy is essential for a more inclusive society. Thank you for considering my perspective. Sincerely, Dave
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Name	David
Demographic	Autistic individual
Response	Sensory issues. Smell. Taste. Touch. Over react to loud noises. May be trauma. Sleep issues. Often average 3 to 4 hours pn for extended periods
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	Sensory Issues Sleep Disorders
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	All issues are important. Also important to consider is the severity of the autism diagnosis. Reports of sleep disorders and its impact on family is significant, but dietary needs/restrictions, behaviors that have a link to obsessive compulsive disorder needs consideration.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response	1) Motor challenges 2) GI disorders 3) Sleep disturbances (usually tied to GI disorders it seems) 4) Sensory 5) Epilepsy/Seizures
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Name	David McWaters
Demographic	Family member of an autistic individual
Response	1. Diminished mental and emotional resiliency that limits time able to do tasks and perform work tasks 2. Dysgraphia affecting ability to write
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Name	Dawn Werner
Demographic	Family member of an autistic individual
Response	GASTROINTESTIONAL DISORDERS
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Name	Day, Autistic, ADHD, Dyslexia,and co
Demographic	Autistic individual; Representative of advocacy organization; Other
Response	sensory- constantly overwhelmed and overbearing feeling sleep disturbances- causes extreme fatigue or insomnia motor challenges- shakes, twitches, paralysis gastrointestinal disorders
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response	Being able to communicate these difficulties to a doctor. Being able to engage in therapy
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Epilepsy - adherence with medication administration Fibromyalgia & Osteoarthritis - pain management and reljable assistance as nèeded
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Name	Deb
Demographic	Family member of an autistic individual
Response	Mental health
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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
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Name	Deborah Gill
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	When sensory issues trigger aggressive behavior it is difficult to help my son manage his behaviors. He is often triggered by rain which we cannot control. He also is frequently up a lot at night which is hard on his staff in supported living and even harder on us when he lives with us as we still need to work the next day.
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response	My son [PII redacted] is 22 and his significant challenges caused by co-occurring conditions include everything mentioned plus self injurious behaviors & sudden loud explosive outbursts which is his common response to these challenges. These make it difficult for [PII redacted] & his caregivers (me) to participate in our community, visit the grocery store, go to church, visit family & friends, etc. All of that but especially GI disorders, sleep diaturbance, & sensory challenges
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Name	Delia Ruiz
Demographic	Family member of an autistic individual
Response	My 10yr has sensory challenges. He constantly has to smell my cheek or my pillow. I have been unable to find resources or any types of supports or replacement behaviors. It can be frustrating for me and embarrassing for him.
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Name	Deon
Demographic	Autistic individual
Response	GI issues have caused sensory issues, but because GI issues were constant I didn't realize something was actually wrong until almost 30. I've developed ARFID due to long term sensory issues with food possibly due to unconsciously labling foods as unsavory because of GI upset
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	anxiety, social challenges
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response	Sleep disturbance, anxiety and sensory challenges are the most challenging.
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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	Significant sensory sensitivity which tend to diminish with age since family/school personnel stop trying to force the individual to deal with noise, lights, fabrics, et al. Lots of gastrointestinal issues noted, almost like some kind of autoimmune disorder. Often have sleep disturbances - worse when autism co- occurs with ADHD.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	Sensory challenges and sleep disturbances
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response	Being nonverbal and having issues with sensory processing is very difficult. When your child cannot express what he is feeling and cannot process that feeling at the same time it is very frustrating!
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Name	Doreene Donald
Demographic	Family member of an autistic individual
Response	Sensory and motor challenges
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Name	Dr Christopher Pyne and Holly Swan, Parents
Demographic	Family member of an autistic individual
Response	Our son has not slept through the night but possibly once or twice a year since he was a baby. He is now 26. He wakes every night and is up for a couple hours, so we are up. He walked in the house today and fell asleep in a matter of minutes because he is so sleep deprived. This causes the sensory issues (needs trampoline, etc inside and outside) to be even more extreme as well as his motor challenges.
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	Unspecified auto-immune conditions, Ehlers Danlos and other hypermobility problems, POTS, IBS, sensory sensitivities (including ARFID) are all areas of significant concern for many autistic people and need more attention and research. Because some of these conditions are difficult to assess for and treat, many people experience these conditions and have no idea why, or that it can be related to autism. 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	The assumptions that service provider staff make regarding behaviors/actions as a choice rather than seeing them as expressions of excruciating pain and discomfort related to digestion, exhaustion from sleep disturbance, and unbelievably irritating sensations from movements that bodies need to make. It's not JUST the physical health experiences, it's that professionals honestly believe there is a way to "just get through it and move on" that Autistic people are choosing not to do for the sake of making that person's day more complicated.
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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	The most significant challenges is a prognosis of premature death. There is so much gaslighting by primary and specialist physicians, that autistic people often quit asking for help. As neuromuscular disorders are so prevalent, little research is done to manage the progressive decline in adulthood. For example, I can no longer toilet independently due to complete bowel dysmotility at age 37.
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Co-occurring physical health conditions are prominent in the autistic community and warrant extensive research, as they exacerbate challenges across domains and significantly impact quality of life. Some of the most common physical health challenges faced by autistic people include gastrointestinal disorders (e.g., IBS), dysautonomia (e.g., POTS), mast cell activation syndrome (MCAS), hypermobile Ehlers-Danlos Syndrome (hEDS), fibromyalgia, chronic pain, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), autoimmune disorders, asthma, allergies, and sleep disturbances. When any of these conditions are present, physical discomfort can be amplified by autistic people with sensory sensitivities, which can include heightened interoception. When this occurs, attention tends to shift toward pain/discomfort, stress levels increase, and the bandwidth for navigating daily stressors decreases. For those with less access to interoceptive cues from within their bodies, these physical health conditions may not be as apparent until they become worse. Autistic people with limited or no speech can have difficulty sharing their physical experiences with providers, especially if the environment is not accommodating of their communication and sensory needs. Also, many autistic people describe not being listened to or believed by their providers (“medical gaslighting”), which is a major problem that is important to address through further research and education.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Our diagnostic protocols need review, based on client report, especially for girls and women, BIPOC, and older people. I have gastritis and IBS and compulsion to eat as a stim. So eating disorders. I have a delayed sleep cycle of 3-5 hours, even with CPAP, Trazadone, and cannabis. Sensory issues include high volume or shrillness; not being able to smell or smelling synaesthetically; skin sensitivity to chemicals (hives and rashes) and materials (synthetics); attraction to certain food textures and unable to tolerate food smells and tastes; and most of all, needing music or solitude in order to self-regulate. Midlife onset (H)EDS; this seems to be the internal version of what's developed differently in me: I bruise, sprain, pull, and break my limbs and spine often, despite flexibility and attention. My skin is a strangely soft texture and is elastic. My hair follicles are perfectly round. Essentially, my body and brain design in all ways seems slightly off the norm. I think EDS and ASD are related. The trauma of being autistic in the world has long confused me and had an impact of my mental health. Most of us have developed full blown mental illness, spurred by this stress. We need a better understanding that ASD in itself is neurological difference, not the same as mental illness, but our experiences in this world is so difficult as to cause strain and burnout.
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Name	Dulce
Demographic	Autistic individual
Response	Sleep disturbances, sensory issues, motor control caused by spasms, muscle and joint pain, the inability tell internally what's wrong, and fatigue both mentally and physically.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	Autistic individuals often face challenges associated with co-occurring physical health conditions. Examples, such as gastrointestinal disorders, sleep disturbances, epilepsy, and sensory and motor challenges, contribute to a complex set of hurdles. These challenges can significantly impact daily life, comfort, and overall well-being, requiring tailored approaches in healthcare and support services.
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Name	E.R
Demographic	Family member of an autistic individual
Response	Pathological DEMAND Avoidance struggles & managing as well as anxiety
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Name	Elena, Mother
Demographic	Family member of an autistic individual
Response	My 30 year old “child” has co-morbid conditions that overlap or are in addition to his autism. He has ADHD, which causes difficulty focusing and/or hyperfocussen, making him inconsistent when performing tasks. He’s sensitive to sudden loud noises, exacerbated by a past experience of being sat under a bell in a school, while it was being tested and suffering PTSD as a result. He also has a sensitivity to tags in clothing, which need removal before holes are torn. He also has mild OCD and gets obsessive about things in his surroundings. He also suffers from mild depression. Sleep has always been an issue: he cannot close his eyes to rest and will not sleep until exhausted. Due to his ADHD and OCD, he awakens often and runs through the living area to check on things before going back to bed. Gastrointestinal issues include Proctitis (in remission),and a years-long battle with IBS- which makes carrying a second pair of underwear a necessity. He is also lactose intolerant, and takes lactase enzymes before consuming dairy. He can and will eat everything. However, he has difficulty knowing when he is full. Twice in his life he has eaten until he vomited, but fortunately has a better handle on it as an “adult”. As an aside, he also has developmental issues, processing difficulties, and speech problems that make it difficult for him to make himself understood at times. All of the aforementioned mean that finding a job (and he is a hard worker) somewhat impossible.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Gastrointestinal distress is a very serious issue between both my brother and I. My younger brother has Celiac which is more common in autistic people and access to safe food in public services is a major issue for him. He also has a very restricted diet due to sensory issues. Food labeling and standard care is an issue as some foods labeled as "gluten free" are not celiac friendly and my brother's other difficulties are less manageable when he is in pain. Additionally, my own sensory issues are aggravated by my own menstrual cycle which makes it difficult to work, complete daily tasks, and take care of myself. I alleviate this by taking hormonal birth control at a low dose continuously, which helps, but birth control access is frequently at risk due to decisions by Federal and state lawmakers or my own access to insurance. This medication makes it possible for me to function without aid and is critical to my survival. Additionally motor challenges are an issue as they make driving difficult or impossible for some people - my younger brother cannot drive and paratransit is unreliable as is. Alternatives to driving are necessary to help autistic people participate in society.
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Name	Elio McCabe, Autistic Women & Nonbinary Network
Demographic	Autistic individual; Representative of advocacy organization
Response	Weight discrimination has made multiple headlines this year thanks to the AAP’s decision to encourage intentional weight loss for young children. For autistic people who experience multiple forms of discrimination and are more likely to experience abuse and violence, a punitive attitude toward food and nutrition adds insult to injury. The practices used to get larger people to lose weight are counterproductive and demeaning. There is an increasingly large body of research suggesting weight discrimination itself explains some of the adverse health outcomes associated with high weight. This is a form of allostatic load. We recommend that researchers conduct more participatory action research about autistic people, weight discrimination, racism, and other factors that lead to detrimental health outcomes. It is time for researchers and practitioners to rethink their vocabulary for larger people. We encourage autism/IDD researchers to lead the charge in changing the way we talk about weight and health. The first step is to end the use of the word “obesity.” For people with IDD, this term is analogous to terms like “idiot,” “moron,” or “imbecile.” It is rejected by the people it describes, especially Black people—just as the word “[redacted]” was rejected by people with intellectual disabilities. Listening to disabled people, or people thought to have health problems because of their weight, means using vocabulary that affirms their humanity. Anything else is epistemic injustice.
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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	I believe more research should be done on the co-occurrence of joint hypermobility disorders (like Ehlers-Danlos Syndrome) and autism. Many autistics experience lack of coordination or underdeveloped muscle tone, which affects the way we move. Additionally, we often desire physical pressure like hugging ourselves or stretching our bodies in atypical ways to regulate anxiety. Bringing one’s legs into one’s chest or other ways of over-extending our muscles might lead to greater physical joint pain down the road. Ehlers-Danlos Syndrome often features gastrointestinal issues, which may contribute to its greater prevalence among autistics.
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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	I think sleep has the most immediate and profound impact on families. It's hard to ask them to work on anything else when everyone's sleep is disrupted.
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	Sleep disturbances as younger child Has Rectal Prolapse as a consequence of trying to force his stool out which then became a behavioral issue he could not stop doing Skin sores from picking at skin or picking at wounds which makes them bigger and take longer to heal
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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	More research/validation in the US mental health system is needed for the PDA profile of Autism. This is an underlying nervous system difference that is not embraced or known for many of the individuals seeking psychiatric services and dealing with persistent mental health conditions. When Autism is unrecognized, which is due to many societal factors such as stereotypes about autism, limited diagnostic criteria that focus on deficits and miss other differences, and the reality of high masking and low social support needs, harm is done. To answer this question accurately, there needs to be a focus on accurate training and evaluation of autism that is non pathologizing. The PDA profile of Autism is at the root of complex persistent individual mental health and substance use disorder problems as well as systemic challenges, as unidentified autistic individuals who are high masking often have not been identified as having a disabled nervous system, and instead are viewed through a neurotypical lens so that when they experience social stressors or stressors to their nervous system they are pathologized in the behaviors that result. Most people are not aware that biological experiences that differ from what we are typically taught to expect, (sleep, eating, stress response) impact behavior and that these behavior differences can be indicators of autistic neurotype traits that mean other physiological differences in how the individual exists in the world.
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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	ehlers danlos syndrome, a connective tissue disorder commonly co-occuring with Autism. It's underdiagnosed, and is usually written off as laziness in adults, or an unwillingness to try physical activities in children. They're not lazy, they're undersupported.
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	It’s very difficult to operate in society when you have co-occurring health conditions with autism. The health conditions are often not taken seriously by doctors or by society at large making it difficult to get accommodations, diagnosis and support. It’s also very expensive and difficult to get medical care in this country.
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Name	Ellen
Demographic	Autistic individual
Response	Sleep, sensory problems, auditory problems
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Name	Ellen Kopel-Puretz
Demographic	Family member of an autistic individual
Response	EPILEPSY!
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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	People in the autism community report a higher incidence of gastrointestinal problems than the general population. Autism correlates with delayed development in gross motor skills, which most of us outgrow eventually but not before sustaining negative childhood experiences of physical education and participation in sports. As a result of these frustrations, autistic people are likely to avoid exercise and physically demanding recreation, which makes the consequences of insufficient exercise not an inherent symptom of autism but another dimension of how many of us experience alienation from important areas of life.
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Name	Emilee
Demographic	Autistic individual
Response	Sensory issues, sleep disturbances, but usually society in general causes the most issues
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Name	emily
Demographic	Autistic individual
Response	Much of my physical distress is disabling due to treatments administered under the assumption of inaccurate diagnoses. Key realms of distress: GI - unbearable esophageal spasms. Mobility - impaired by normalized abuse. Obesity - unable to thrive nutritionally or with regards to physical fitness after misguided pharmaceutical treatments. A way that all of these issues are made further distressing, however, is the emotional impact of my awareness of rejection from others around me. This becomes a prominent issue in my physical reality because of rejection I faced from a thin mother as a fat child. It may seem silly, but because the rejection has been felt by my body physically, it manifests in disease. I'm not exaggerating when I say acceptance changes the experience of my physical symptoms. The threat that rejection from others poses to my body and its ability to survive has kept me indoors. I am in very poor health from the isolation. These confluxes of emotional and physical symptoms also present a risk to me when it comes to seeking any medical guidance. The emotional reality of medical gaslighting is not something my body can survive. I hope this makes sense. I'm not claiming that autists experience a different mind-body connection than allistics, rather, that connection is more sensitive, and therefore plays a role in autism as a disability.
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Name	Emily
Demographic	Autistic individual
Response	I have IBS and i recently had two polyps removed in a colonoscopy that were precancerous. I have a hiatal hernia that was discovered in an endoscopy. I have irregular sleep patterns, and I experience sleep paralysis and night terrors. I’ve dealt with depression and anxiety for as long as I can remember and have autistic meltdowns frequently do to exhaustion. I have sensory sensitivity to lights, sounds and texture and have a hard time focusing and executing tasks because of it and it makes it difficult to communicate my discomfort.
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Name	Emily
Demographic	Autistic individual
Response	gastrointestinal distress, sleeping too much or too little, vivid dreams, lights being too loud especially in public places, lighting in general being wrong in most places, makes it difficult to focus on anything else.
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response	My son has autism and multiple co-occurring health conditions. He has sleep disturbances, sensory issues, and mental health issues. These make it difficult or impossible for him to have a job, maintain his hygiene, have relationships with others, attend school, drive, and live independently.
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	While I'd consider sensory and motor challenges intrinsic to autism and not "co-occurring," inertia and auditory hypersensitivity/auditory processing challenges are the most significant physical challenges related to autism I face. Of conditions I would consider truly "co-occurring," personally, I would say gastrointestinal pain, sleep disturbances, and for most of my life although not currently, painful menstrual periods.
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication challenges with an individual with autism can make self reporting difficult.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response	Depending on the meaning of the term “most significant”, whether it refers to “most serious” or “most prevalent”, I would conclude that epilepsy is the former, and sensory processing disorder, the latter. I do not have epilepsy, but I experience significant challenges accessing public spaces due to the severity of my sensory processing difficulties. The fluorescent lighting, overhead music, and bright white walls and floors that are most commonly observed in large department stores or grocery stores, are too much for my sensory system to integrate appropriately, and I am prevented from remaining in these spaces long enough to complete errands without getting overwhelmed, even when I have my support worker with me to help me manage my sensory responses.
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Name	Emma
Demographic	Autistic individual
Response	The lack of medical providers with awareness of autism when seeking care for related conditions (in my case, hypermobility, POTS and MCAS). Simply knowing that someone is autistic can tell you a lot about what their immediate and potential future health concerns might be, including important stuff like how we metabolize medications, and how difficult lifestyle changes are for us, but this is not taught in med school or in training for most specialties, and this is a factor in our life expectancies being so much shorter than allistics’.
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I have Ehlers-Danlos Syndrome in addition to Autism. Ehlers-Danlos Syndrome is a connective tissue disorder, the most significant challenge cause by it is mitigating the ease with which my joints dislocate or go into subluxation. Because of this I have to walk with crutches, forgo different types of physical activity - eg running or weightlifting- that put excess strain on my joints. One thing is that because of Autism I have worse proprioception then other people with Ehlers-Danlos syndrome this means I get less of the feedback from my body about when I am about to dislocate or sublux a joint and often push by body harder than I should. I also have Celiac’s disease which leads to a lot of gastrointestinal problems especially in settings when others are cooking for me and are as not careful with my dietary restrictions as I am.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	My son has never slept through the night. He is 24 years old. He has OCD in addition to many other manifestations of autism and OCD. He can’t be left alone due to his OCD- accessing food, technology, a want to leave the house.
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory challenges. However, impairment in their ability to communicate any type of pain may result in behavioral outbursts, as well as self-injurious behaviors. My brother would kick walls - this resulted in wounds which would not heal for years. The inability to communicate dental pain, as well as other types of pain, could result in the complication of sepsis, requiring hospitalization (a very unpleasant experience for them), or even death.
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response	GI issues, Sleep, Sensory over stimulation with day to day things.
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Name	Eugenia Ramsey
Demographic	None Indicated
Response	Health issues become acute as early signs are not addressed because the person with autism is not understanding them to let a person know that something in their body has changed. Acid reflux learned from enamel on back teeth were etched. Constant bowel movements with no control found person with autism had Chrones disease. Testing in blood can help diagnosis. Please study sounds, body positions of the autism person to give doctor clues as to what area to examine and test.
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	GURD/IBS, sleep difficulties, GAD (generalized anxiety disorder), PTSD, most of which occurred after the age of 18 after years of trauma from parental abuse and school mistreatment. These compounded by office politics and other neurotypical niceties, backstabbing, and other nonsense that creates a toxic environment to get work done. Masking becomes a necessity to survive, but ultimately causes burn out. After years and years of burn out after burn out this causes severe disability. Parenting, schooling, and work life needs to change for us to function. Medication is NOT the answer.
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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	In addition to co-occurring medical conditions listed, communication and language challenges are a significant issue that needs to be addressed more effectively.
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Name	Fin Finney
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I struggle with vertigo, joint pain, pelvic floor dysfunction, and untreated eyesight dysfunction due to passing regular exam methods.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	my daughters 14 year, most challenging part on physical health, she is not able to tolerate any pain and become very hyper active if she has any especially during her periods. Lack of eye contact, have sleep problems.
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	Sensory challenges, motor challenges, sleep challenges, gastro intenstinal challenges and feeding and eating difficulties, social engagement difficulties, self regulation difficulties.
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response	From my lived experience as an autistic person with an autistic father and autistic friends, sleep issues are a core, if not the core issue with being autistic. Yes, sensory challenges can be disabling, but putting on gloves and noise cancelling earphones are viable treatments for those issues. If I can't sleep (which I can't, as autism has blessed me with treatment-resistant insomnia) then all the other challenges that come with being autistic become impossible to navigate. According to recent meta-analysis of autism sleep studies, there are no treatments outside of melatonin that have been researched for autistic minds, and most neurotypical methods won't help because of the changes that autism brings to the Default Mode Network of the human brain. Currently, I am a college educated software developer that was making 150k+ in 2022, but could not work in 2023 because I cannot functionally sleep. That's ~30k in tax dollars that the government has missed out on.
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Name	Freya
Demographic	Family member of an autistic individual
Response	Sensory issues Behavioural challenges Sleep trouble Disordered eating
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	Gastroenterological comorbidities (in my case CIPO). And I am prone to (vasomotor) migraine attacks
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	Food. Extremely restricted diet, a lot of struggles around eating. Losing foods. Struggling to eat a healthy balanced diet. Limited food choices under 5 options for a non speaking autistic child. Need better development in food programs. Sleep. Years and years without proper sleep. Needs medication to sleep. Up frequently. Toileting, suffers from constipation issues constantly because of inability to use the toilet.
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders, sleep disturbances, sensory issues (from my experience with my son).
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Name	george knoth
Demographic	Family member of an autistic individual
Response	sleep disturbances and severe aggression
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	Issues with proprioception. This led to poor coordination and was a barrier to play and sports.
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Name	ginamarie
Demographic	Other
Response	finding doctor in home area base that function my needs level to safe guard and health care me propers. i be the told go to morristown for my complex health needs so i be have better qualty life... no transport services to get me there never the mind there be hospital 3 miles from where i be lives and many network doctors. this no okay. blue envlop for the police - this be wonky no train inform propers and u poop the bed thinking when we stress trigger etc that we be remembers calm blue envlop give police never the mind the police lack of training for us this be sensory stress direct relates back our health. if we no feels safe and have proper doctor we no have qualty life. sleeps extreme import, isolation connection to health conditions, my function level impair to receive understanding doctor to listens. i be go ER and no respects no have call button ask for social worker - it no until the doctor come down visits me - he be say i be see you here want come check in you and then the care improve for me why no treat with the same respects - it no matters be on the spectrum label. and yet you wonders why people of color have more complex health issue - it be yet another box that be dismiss no respect proper.... snowball hurt our health complex issues etc
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Name	Glen , The Jewish Guy Business venture PTY LTD
Demographic	Autistic individual; Family member of an autistic individual
Response	Indeed, knowledge is power and malongi ma ndona madungu... positivity is accepting reality rather than living in false hope
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Name	Glenda Hayes, Grandparent
Demographic	Family member of an autistic individual
Response	Textural issues related to types of foods eaten. He tends to only eat certain foods which creates concern with getting a balanced diet. Other issues include the "walking chicken gait" and uncoordinated chewing which causes bits of food to be expelled during meals.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	My daughter has Pitt- Hopkins , a rare severe form of autism she has severe gastrointestinal issues, needs daily medication, and a bowel program.suffers quite a lot of daily physical pain due this She also receives daily medication for a sleep disturbance, sometimes it works, sometimes she will be awake 24 hours a day for 6-7 days per month She is non verbal, has no communication system, despite many years of efforts by therapists and teachers She takes medication for a type of seizures She in not mobile, uses a wheelchair
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Name	Grace, Autistic person
Demographic	Autistic individual
Response	Sensory sensitivities can exacerbate physical health conditions and also cause the individual to experience conditions more severely.
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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	Sensory overstimulation stands out as the most impactful physical health condition that autistics experience, as the overload of the nervous system dysregulates all other physical, mental, and emotional systems within the human body. Overstimulation often leads to “meltdowns”, which leads often to the inability to regulate whatsoever or a complete shutdown of outward functioning. This impacts hygiene, health and wellness, diet, exercise, communication, sleep, motor function, and all other elements of a person’s physical health. Often, overstimulation leads to a state of catatonia that renders all other elements of physical wellbeing moot.
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Name	Greg
Demographic	Autistic individual
Response	Sleep and eating. If I manage 6 hours of sleep it's a good night. Once I wake up I cannot go back to sleep as my mind snaps awake and nothing short of chemicals can shut me off. Avoidant eating and maintaining weight is difficult.
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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	Co-occurring health conditions can be significantly downplayed given an ASD overarching diagnosis. For instance, neurodevelopmental disruptions that manifest in motor differences which are in turn required for many mind plus body actions linked to independence (driving, hygienic, writing, etc.) can be under treated or ignored. For school aged children with Autism in K12, many states have guidance that prevents school based therapists from working holistically with children as they are restricted to narrow clinical focus. Too, given the dearth of developmental pediatricians available to families, parents are often directed to ABA as an end all be all therapy, rather than therapies that include a range of treatments for co-occurring conditions.
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Name	H
Demographic	Family member of an autistic individual
Response	Anxiety, demand avoidance or inability to do most things during times of shut down or burnout, sleep disturbances
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response	Gastrointestinal issues, migraines; allergies Child can not express pain and acts out with SIB or grabbing others.
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Name	Heart of Texas Behavioral Health Network
Demographic	Service provider, health provider, or educator
Response
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Name	Heather
Demographic	Autistic individual
Response	It can be difficult to get adequate help for them because of difficulty communicating; doctor's not really paying attention to us when we talk; lack of understanding. a HUGE problem are self-diagnosed autistics completely changing the conversation on these things, denying they are related in any way to autism, and damaging public perception on what autism is and how it impacts us.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Inclusion in tasks such as going to the grocery store, or leisure activities. Not enough places are doing sensory hours, all grocery stores do not offer Caroline's carts making it near impossible to take some autistic indiviuals to the store. My daughter cannot go to Chuck. E. Cheese because they don't have sensory friendly hours at our location for example. More businesses need to have sensory friendly hours. Gastrointestinal issues and incontinence. Many public spaces will prohibit use of their restroom and you have nowhere to change a diaper for an older autistic child or adult who is unable to hold their bowel movement or urine. We were refused the bathroom at a Family Dollar when I needed to change a diaper.
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory processing issues have been the most significant difficulty in my own experience and in the experiences I have observed in other autistic/neurodivergent individuals.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Sensory, GI issues, Sleep issues, anxiety, ADHD.
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Name	Heather Bourne
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	the narrow range of tolerable foods can present nutritional challenges
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Diet and gastrointestinal challenges and sleep disturbances impact nutrition intake as well as energy requirements for daily functioning
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Name	Heather Gray
Demographic	Autistic individual
Response	Gastrointestinal issues, sleep disturbance, sensory and motor challenges
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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	The lack of understanding regarding how cooccuring conditions impact the way an autistic individual interacts with the world, how they experience things and therefore how they may behave in their interpretations and responses to what is happening around them. If there is no insight into what other factors influence and compound some of the struggles autistics face, then limitations will remains with how to actually help support them in the most optimal way.
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	My daughter was diagnosed 2020 with schizoaffective, 2023, gastroparesis and rheumatoid arthritis
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	Aggressive behavior and conditions such as intermittent explosive disorder accompany many people with autism. Aggression hinders these people from being able to live in group homes and to work either in the community or in a sheltered workshop. Research is desperately needed in order to curb aggression and to find ways to address it successfully.
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Name	Holly
Demographic	Service provider, health provider, or educator; Researcher
Response	Its effect on everyday functioning - but more specifically the effect on challenging and severe behaviors (aggression, self-injury).
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Name	Holly Connor
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	The conditions all get lumped together and not addressed as its own issues. Not saying it's just a symptom of autism. For our son the challenges with sleep have been ongoing since birth. Resources to have accurate sleep studies are needed. Lack of specialist that are willing to take on the unique needs of ASD and trying to take further diagnostic test to find any underlying causes. Distinguishing between lack of sleep or underlying cause of behaviors. Another issue is having to travel to an office that only causes more stress and anxiety that then alters the outcome of any testing or diagnostic tool. Having option for house calls that could provide a more relax and natural state, might lead to less testing needed and better results to then develop a treatment plan. Sensory issue and food aversions is the need for more testing on Nutrional needs and depletions. Families should be able to get regular testing done of gut biomes, vitamin and minerals, and in-depth analysis on a functional level to be able to best support their nutritional needs. Then consideration of if diet changes are even possible and alternatives for supplementing nutrition.
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Name	Ian Morris
Demographic	Autistic individual
Response	Strangers incorrectly judge us. When a therapist told me in 2000 that I am autistic, I said that I want to keep it a secret because people will misjudge me. Since we autistics are considered freaks, we waste tons of energy masking. Masking is exhausting. Some individuals who know I am autistic tell me to mask all the time. That is ableism. We autistics deserve to be treated fairly in society.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	Many challenges caused by co-occurring physical health conditions in autistic people stem from difficulties communicating pain, discomfort, symptoms, or side effects from treatment. For example, challenges communicating sensory sensitivities during medical procedures can be an issue. Difficulty separating autism spectrum disorder (ASD) signs and symptoms with symptoms from undiagnosed or undertreated medical conditions is also a significant issue and can severely impact quality of life as well as delay diagnosis and medical interventions. Other challenges include disruptions in daily routine due to physical health issues and difficulty with transitions between home, school, work, or other programs while also managing visits to health providers. Many autistic people also struggle with falling and staying asleep, which can impact physical and psychological well-being and can also exacerbate ASD symptoms, such as aggressive behavior. Sleep problems also greatly impact parents’ sleep, which in turn can impact a parent’s ability to co-regulate and utilize treatment plan interventions.
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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	The fact that when co-occuring physical health conditions do present themselves, they lead to Autistic Shut Downs that are interpreted as Depression, when they are not Depression. And that leads to worsening shut down and/or health conditions. It's a serious vicious cycle that needs to be addressed.
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Name	Irene Tanzman, parent/guardian
Demographic	Family member of an autistic individual
Response	I am the almost 70-year-old mother and guardian of a thirty-five-year-old man named Isaac, diagnosed with severe autism, intellectual disability, and Crohn’s disease. Isaac’s individual support plan (ISP) and his Home and Community-Based group home placement is not adequate to support Isaac’s needs and keep him safe. This is particularly true in terms of accommodating his inflammatory bowel condition, a serious and chronic problem. His plan does not include a clinical assessment which explores his medical needs. The Massachusetts Department of Developmental Services has been aware of Isaac’s issues but sees no need to address these. Isaac is also at high risk of developing colon cancer due to family history on both sides of his family and because of his inflammatory bowel disease diagnosis. Isaac’s Home and Community Based placement does not have the health services essential for addressing his special health care needs. There is currently no plan in place for his need for regular colonoscopies. When I am no longer able to prepare him for colonoscopies, there is nobody with the expertise to do this in his current programming.
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Name	Izabella Pulvermacher, Dental Coordinator Department of Developmental Services
Demographic	Service provider, health provider, or educator
Response	When discussing co-occurring conditions and autism most agencies forget oral health. There must be programs that address oral health for individuals with autism,
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Name	J Maust, HUB 302
Demographic	Family member of an autistic individual; Other
Response	Sleep disturbances, sensory & motor challenges, diabetes, GI issues
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Name	J Olson
Demographic	Family member of an autistic individual
Response	Co-occurring physical health conditions exacerbate Autistic/sensory challenges and affect every aspect of the child’s life. A major lack of understanding and acceptance, particularly in the educational setting. People are not understanding of what they can’t see and have the mindset that the challenges caused by these co-occurring health conditions are willful and purposeful because they are not always apparent.
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Name	Jack Brownn
Demographic	Autistic individual
Response	Sleep disturbances, Visual Snow Syndrome, Sensory Issues
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Name	Jackie
Demographic	Autistic individual
Response	Workplaces are not equipped to accommodate autistic individuals in most cases. Disability is hard to get so most of us end up working jobs that severely overestimate us and lead to melt/shut downs. These episodes are unpleasant and exhausting, for me personally it's affected my depression and anxiety negatively. I've also had to call out a lot due to the reasons above.
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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	Sleep deprivation I believe causes so many other challenges with autism. I feel it exacerbates all the other issues- certainly can make epilepsy worse, no one has a good day when they have not slept. The other big issue with sleep issues is this affects everyone caring for the person also. An exhausted caregiver can’t really do their best. I often say to people let’s deal with the sleep issue first and then we can deal with everything else.
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Name	Jaime
Demographic	Family member of an autistic individual
Response	Sensory and motor Challenges for my child. He doesn't sense things as a normal child and he lacks the normal motor abilities of a normal child. For instance: Myself and wife have struggled since his early childhood to assist him to illustrate him to objects and physically point his head into the correct direction of things as he's constantly looking up in to the empty air, directing him while he's walking as his attention is limited and he is constantly looking up, playing with his hands or looks back as he walks and is constantly stumbling. We have struggled teaching him over and over how to hold on to a spoon, difficulties in getting him to sit still when is time to eat, teaching him how to hold a pen in school, making him to pay attention to teachers-to boards- or screens. Difficulties to get dressed as he's 5 and I still have to help him dress and he doesn't distinguish a right side from wrong side, constantly and countless trips to the bathroom potty training him which has turned to be one of two most difficult tasks so far as well as getting him to talk or communicate as he has a short attention span and it is hard for him to pronounce many words. This is not only a difficult challenge but an endless mission which doesn't have an end date to be completed. The challenges are countless and constant.
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Name	James V. Bradley
Demographic	Autistic individual; Family member of an autistic individual
Response	Clumsiness, sensitivity to light and sound, difficulty becoming physically comfortable, nausea from gastrointestinal discomfort.
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Name	James Weingardt
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sensory motor preferences and differences are grossly not understood especially by school and medical personnel outside of sensory based occupational or vision therapy. Gastrointestinal disorders are not understood by general practitioners. Referral to specialist with emphasis on gasterolintestinal is rarely given. Slipped disk from not knowing boundaries or pushing self to limit/dangerous behaviors leads to obesidy or heart disease.
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	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 people with severe and profound autism 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. He is 21 years old and still needs help with daily living needs, will elope with no safety awareness and has been hospitalized without proper healthcare his entire life. When we lived in Minnesota we had to travel to Prairie St. John Hospital in North Dakota for sub par care. Now living in Illinois we have had to go to Indiana where our son lost over 50 pounds in 3 weeks and at discharge the nurse asked us what medication to give him? What? We had left a full page list on what to do and what foods he will eat and even bought the foods and told them about his restricted diet. His needs were once again not met. We had to get an attorney to get him appropriate education and in the least restrictive environment for him after he ran away from a licensed school and was lost in the same month the Heartspring School had a death of an autistic adult student due to elopement. Please we need knowledgeable medical Doctors, services and housing.
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	Significant challenges with co-occurring physical health conditions: depression lack of interest in speaking more than 1-3 words sound sensitivity Biggest challenge with co-occurring conditions-- a. finding doctors who know anything about serving our kids/adults with these challenges. b. finding doctors willing to serve our population
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Name	Jana Young
Demographic	Family member of an autistic individual
Response	PDA, Anxiety, sensory
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Name	Jane Horn
Demographic	Family member of an autistic individual; Other
Response	Echolalia is a significant barrier to communication for many autistic children. It is not unique to autism, but often alerts providers that the problem may be autism.
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Name	Jane Roberts, University of South Carolina
Demographic	Researcher
Response	Anxiety is an early emerging feature that has significant negative effects on these children, their families and the communities that support them. Intellectual impairment (ID) is a huge factor that constrains all areas of function, and sensory issues are pervasive.
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Name	Jane Seymour
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Jane, County AE
Demographic	Other
Response
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Name	Janet Callahan
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Doctors often refuse to look for reasons other than autism. For example, we have heard, "well, all autistic kids have X, so there is no solution" even through there are known treatments and other possible causes for X that are being ignored.
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	Many individuals on the autism spectrum have physical health conditions that cause pain and distress to themselves and their families. These include significant sleep disturbances, seizures, gastrointestinal conditions such as constant constipation, chronic diarrhea, and reflux, feeding issues and food aversions/restrictions, sensory hypo- and hypersensitivies, and catatonia. These physical health conditions negatively impact the quality of life for the individual and their families. In some cases, these conditions lead to premature death.
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Name	Janice
Demographic	Family member of an autistic individual
Response	I would say motor skills and joint pain
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response	My daughter did not sleep well even as an infant. Could not nap, difficulty falling asleep, frequent stomach aches.
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Name	Jared Goodrich
Demographic	Autistic individual
Response	Sensory Issues with crowds.
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep, sensory, gastrointestinal, diabetes, eating / nutrition / weight, stress, lack of physical activity.
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	The most significant health challenge I see in my son who has autism is his sleep schedule. He is 23 and unable to keep a normal sleep schedule. He often sleeps 12+ hours, and his schedule shifts from sleeping in the morning to sleeping at night to sleeping in the daytime. It seems to be his biggest challenge, and he is often exhausted.
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal issues, anxiety and learning disabilities.
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic people have deficits in communication skills to express pain, discomfort, or other issues related to medical conditions. As a result, conditions are usually not caught as quickly as when it affects a neurotypical person which affects treatment. Also, the healthcare system or lack thereof for these issues make getting treatment difficult
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Sensory processing disorder completely distorts reality and makes noises seem louder and scarier and lights at night are too bright for me to drive safely. I also have OCD and anxiety which significantly impacts my day to day executive functioning.
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Name	Jeffrey Poms
Demographic	Autistic individual
Response	many autistic people experience physical illness among which are sleep disturbances which can lead to a lack of focus, mental fortitude and ultimately burnout. Sleep disturbances are also a large contributing factor to persistent, treatment resistant depression and anxiety.
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	For me it is a struggle with alcohol issues. I so wish that it made me a dominant alpha male tough guy, but it makes me more depressed and confused and it is chemical dependency and not a fun party. That's all that I can think of for myself.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety/depression, ADHD, alexatxymia
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Sensory and motor challenges, creating comorbidity of eating disorders or substance use disorders to ease the sensory input. .
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Name	Jemima J
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Some of the most significant challenges I have noticed, as sensory issues and GI issues
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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	I have an adult son who has had multiple ED visits as well as inpatient psychiatric admissions. I have had to beg, usually unsuccessfully, for physical health issues to be evaluated. I'm quite certain many incidents of crisis behavior are due to dental problems, constipation, and/or other health issues. It is not possible to get him to a dentist if there was one. We rely mostly on telehealth for doctor visits due to behavior. My son has ASD, bipolar disorder and IDD.
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Name	Jenn
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety
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Name	Jenn Raley Miller, Parent
Demographic	Other
Response	Differences in sensory processing, sensory integration, and sensory perception.
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Name	Jennifer Colberg, Grandma
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory and motor issues, sensitivity to food and safe foods they are willing to eat, stomach issues
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Name	Jennifer Higgins
Demographic	Autistic individual; Family member of an autistic individual
Response	anxiety, depression, sensory issues, repetitive behaviors, noise sensitivity, intense, eating disorders, narrow interests, acting without thinking, emotional dysregulation, OCD, over eating
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Name	Jennifer Proffitt , Parent and Teacher
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My son has gastrointestinal issues, as a child he had baby hemorrhoids and bloody stools. He also has a hard time using the restroom as a teenager. He slept so hard that he could not wake himself up to use the restroom and would wet his bed until age 14. We have had him on medication now that helps with that. He also has sensory sensitivity to sounds and needs to wear headphones. He does OT, ABA therapy, and mental health therapy.
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	For my child, medications for autism has caused significant weight gain leading to increased isolation and decrease in social skills. His gastrointestinal concerns have also caused him to miss school and have issues fitting in with his peers. Sleep disturbances causes troubles meeting a normal school schedule. For my son he gets up at 5am and is ready to start school and can get frustrated by having to wait.
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	The biggest challenge is that the medical community cannot get on board for treatments that are outside the box. To get actual healthcare therapies and protocols, we have to seek those doctors who have taken it upon themselves to delve into the medical treatments that are out there and the new research that is coming out every day. They don't take insurance because insurance stifles the healthcare that our children need. Our son had gastro issues when he was younger, and we took him to a gastro doctor - he said there were no issues, take some laxatives, and sent us on our way. The "in the box" doctors check their boxes and shuffle us out, not helping us AT ALL! So I pay monthly for pharma-grade, highly bio-available supplements because the gastro issue stems from gene issues called MTHFR. No doctor checks for this EVER unless you ask, and some refuse. It turns out that both my autistic son and my ADHD son have this problem. So, they cannot dispense toxins from their body or ingest the proper nutrients from their food. Many of these nutrients are imperative for the GI system to work correctly. How about the medical community catch up to where we are? I’m tired of fighting with our medical professionals because they have ZERO clue. The GI tract is essential to the other examples listed above - sleep issues, skin issues, stemming, and brain issues due to substances getting into the blood and ultimately breaking the blood/brain barrier.
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response	My son has significant issues with sleep and having Autism. He does not have a regular sleep schedule and has to rely on medication in order to fall asleep at night. When he does sleep, he often does not sleep through the night. He also has significant sensory challenges that make going in public difficult. He is challenged by noises that most of us would not be troubled by and because of this, he looks for those sources when he goes out and avoids them to the point of disrupting his day.
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastro discomfort nausea IBS symptoms migraine symptoms insomnia nocturnal body clock fatigue
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	EDS, sleep disturbances, lack of supports for adults, late realized, lack of access to official diagnosis, danger of obtaining diagnosis and social determinant of health as well as medical gaslighting, medical trauma, ableism and racism in they system and the individuals in the medical system, lack of reproductive care, lack of agency, lack of access to thriving wages, lack of stronger ADA protections. Many employers allowed to discriminate because most of us can't afford to sue or have the energy to do so while we are trying to survive and not become homeless, which is on the verge of becoming illegal so they can criminalize us and put us into modern day slavery (aka the prison industrial complex). Lack of access to Occupational therapy's and accommodations in everyday public life including mask mandates, ADA compliant spaces, broken equipment, untrained staff, equipment not withing accessible range (aka miles away), no reliable public transportation, no funding for in home care, no funding for transportation, no funding for adaptative supplies, or prohibitively priced, and unable to be gainfully employed or keep employment due to lack of all accommodations and supports and ablest employers and coworkers.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	Joint pain/hypermobility causes SEVERE pain. Esophagogastric dysmotility causes swallowing difficulties, gastroparesis, SIBO, malnutrition, leaky gut, constipation, bowel impactions, bowel obstructions. Sleep disturbances cause daytime sleepiness, preventable incidents/accidents, brain fog, cognitive dysfunction Sensory challenges cause SEVERE meltdowns if not appropriately prepared for: everything is either TOO or NOT ENOUGH. Too bright, too loud, too smelly, too scratchy, too much in general causes overloaded senses. OR not enough stimulation causes the "stims" that non-autistic people hate so much and wish to "treat out" of us. Things like hand flapping, finger flipping, toe and foot movements, spinning around, watching spinning things, fascination with little parts of objects, lining things up by color, category, etc. Motor challenges cause instability, lack of coordination, and result in falls, dropping things, etc.
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Name	Jesse Scott
Demographic	Autistic individual
Response	Sensory overload from public restrooms (toilets and hand dryers)being too loud, sensory awareness of the urgency to go before an accident happens, bladder and bowel incontinence. Chronic constipation.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	Since childhood I’ve had sensory issues which made it impossible to wear certain fabrics and eat certain foods. I can remember varying forms of insomnia as early as elementary school. These problems have persisted into my thirties where I experience difficulty falling asleep and staying asleep. Before falling asleep I also often have an extreme falling sensation which causes me to jerk violently. I also have gastrointestinal problems which include constipation, and as I’ve aged, severe heartburn. I needed glasses before the age of 22 due to nearsightedness and an astigmatism, and I experience something known as visual snow. My bladder also hurts, and I pee ALL THE TIME. The problem I deal with most, however, is constant pain. Since I am also female this pain is often ignored, and I’m often treated as if I’m drug seeking so I’ve learned to just deal with it. My joints used to be hyper-flexible, and some still are, but they are now locking up as I’m aging. Doctors don’t seem to care. These are not my only issues unfortunately. At 18 I had a tonsillectomy. At 22 and 23 I had vascular surgery to remove varicose veins from my legs. At 29 I was diagnosed with PMDD and at 32 had a hysterectomy because my periods got so bad I was passing blood clots the size of tangerines for days each month. When I was 33 I was diagnosed with IIH and had brain surgery to treat the underlying veinous stenosis at 36.
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Name	Jessica Bearden
Demographic	Service provider, health provider, or educator
Response	The most significant challenges in my work as a counselor include the self-injurious behavior that is a result of sensory processing issues
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Name	Jessica Blackmon, Just an ADHD dyslexic autistic girl
Demographic	Autistic individual
Response	I deal with problems with sleeping racing thoughts during nights where I'm so exhausted that I cannot fall asleep though.
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Name	Jessica Iverson
Demographic	Autistic individual
Response	Even more time home alone and resting than participating in society. Communicating with healthcare staff to get needed care, including diagnosis and treatment. more brain fog from chronic pain and fatigue, symptoms of many if not most physical health conditions.
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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	Joint hypermobility (i.e. Hypermobility Spectrum Disorder or Ehlers Danlos Syndrome) occurs more frequently in individuals with ASD than in the general population. The chronic pain and mobility limitations caused by these conditions can negatively impact mental health in individuals with ASD, as well as their ability to access needed supports in the community.
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response	My son is almost five and around 2/3 he was struggling with waking up 1am and want to start his day. Along with food diversions and will only eat limited food along with temper tantrums that can last two mins to thirty.
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Name	Jessica Smith
Demographic	Autistic individual
Response	SPD (sensory Processing Disorder), Gastrointestinal disorders ( sometimes caused by the trauma we get being autistic living in a world not designed for us) theres some research that being autistic effects us all the way down to how we breath, we could be breathing wrong a not even know it.
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	depends on the day. (allergies can play a big role in some of the things i experience and how my body developed in incubation and growing up) but from say a scale on 1 (low) to 10(high) they tend to be around a 5 or 6.
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Many in our severe/profound autism population suffer physical pathologies that can severely compromise well-being, to the point of being fatal. These include catatonia, epilepsy and seizures, gastrointestinal distress, insomnia and sleeplessness, and sensory overload. These pathologies can be ruinous to quality of life for the individual and family. They cause suffering and often, premature death.
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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	for my son and most of the people I serve, it is sensory challenges, followed closely by sleep disturbances, and then gastro disorders.
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response	My son has a high level of anxiety in part due to his life experiences through ASD and the world around him. He is constantly learning (and re-learning) the unwritten social rules.
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory & motor challenges. Sleep disturbances. Additionally UTIs and incontinence due to interoception difficulties. **Dental issues from executive functions struggles.
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Name	Joanna
Demographic	Family member of an autistic individual
Response	Poor sleep , general crippling anxiety , poor diet , sensory issues such as struggles bathing and hygiene , changing clothes , brushing teeth . My boy has PDA which should have its own recognised profile under the ASD diagnosis as it has its own set of traits , these traits to manage need different strategies than an individual with ASD alone . Professionals are not aware of PDA even in SEN schools which makes our kids unable to manage in mainstream or SEN schools and parents have to home Ed instead .
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Name	Joanne Miller
Demographic	Service provider, health provider, or educator
Response	Professionals often do not see beyond the autism diagnosis to consider any other medical condition/issue that the person may be experiencing. Professionals often attribute any physical health condition to "autism" and do not spend the time or effort to listen to what is occurring.
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Name	Joanne Van Hoosear
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory and motor challenges: sensory challenges that impact movement and balance, interoception. POTS: Dizziness, heat sensitivity, impact on self care when standing in shower is so exhausting. Ehlers-Danlos: Joint pain and needing joint replacement at a young age
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Name	Jobless autistic
Demographic	Autistic individual
Response	GERD, gastroparesis, insomnia, POTS, epilepsy/ photosensitivity, sensitivity to stimuli, lack of balance, difficulty reading and writing, polyneuropathy, costochondritis/ tietze syndrome, slipping rib.
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Name	Jody McCormick
Demographic	Autistic individual
Response	The most significant challenges I face is sensory overload. Being in a crowded space where there are a lot of different things happening around me often requires intense focus to be able to do the simplest of things. For example, when checking out at the grocery store all of the "boop"s of the scanners around me, the mom in line behind me trying to keep her kids from touching all the candy on display, and the facial expressions of the cashier... I notice all of them and more along with the thoughts they all produce in me. Why that *specific* "boop" sound? It certainly cuts through the noise. I'm sure that's why. Wow, being that mom right now looks hard. I remember being a kid in line and wanting some reward for not eating the blackberries I saw back there. I wonder what the cashier looks so aloof to it all. She's underpaid. The economy will probably get better eventually... All of the sights and sounds around me produce full-fledged, in-depth, internal discussions that I have no control over. My brain cannot cut the unnecessary connections between neurons as easily as others'. Getting through all of that sensory information to realize that the cashier is now staring at me because I haven't pressed "The Green Button" on the card reader can be very, very difficult.
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Name	joe valenti, parent advocate
Demographic	Other
Response	The biggest challenge for those in this category is the behavior challenges which occur. The staff training and education in the needs of those with co-occurring conditions is lacking with community providers.
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response	In addition to ASD, I also have ADHD, and find it very difficult to fall asleep & stay asleep, which result in lower energy and emotional regulation during the day.
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	Finding clinicians experienced with profound autism, non-verbal. Coordinating care. Lack of research available on patients with profound autism with co-occurring health conditions. Lack of inclusion for profound autism people on public committees. Their challenges make participation nearly impossible, so they are ignored.
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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	Sleep disturbances and sensory challenges can interfere with and even prevent autistic people from engaging in valuable therapy sessions, medical treatment appointments, and day support activities intended to address their other diagnoses including autism. Losing eligibility for these services and having to constantly delay and reschedule them effectively reduces their efficacy.
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Name	John Yacks Jr.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The biggest challenge is communication and management. Dietarily speaking, it is incredibly problematic to break bad habits or even have a desire to change, because at our core hate change.
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	As someone who could not speak when I was younger, it was difficult to explain to caregivers and medical professionals that I was having issues with sleeping and eating as well as facing sensory and motor challenges. I still struggle to this day with these issues, which have impacted my quality of life and my ability to be among my peers and community. I have co-occuring physical health conditions such as scoliosis and hypopituitarism. Some of the symptoms are fatigue and muscle weakness. It is difficult to get others to understand that when I am tired, it is not because I am being lazy or that due to my autism, I am not following social norms and behavior when in public. My physical health conditions are also overshadowed by my autism as I have difficulty explaining what I am feeling or having issues with, which can make my conditions worse or left untreated. 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	I'm highly masking which delayed diagnosis of my gender dysphoria for decades. I think my educators recognized in the 60's that I had (at that time) Asperger's syndrome, but not my doctors. I also remained undiagnosed for Ehler's Danlose despite many dozens of sprains and a recommended operation to shorten some ligaments. My autism mostly manifested in positive traits, gifts, but I do suffer from sensory overload and lack many social skills like the ability to recognize non-verbal communications.
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Schizophrenia anxiety
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	Attending to task. My sons OCD like tendencies interupt the smallest tasks. This makes getting through the school day very hard and increases anxiety.
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Name	Joye, service coordinator in HCS program
Demographic	Service provider, health provider, or educator
Response	who wrote these questions? we don't say autistic people. the question should be, "how does autism affect someone's physical health?
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Name	Jude
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response
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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: GI “It's challenging to determine what will help your children when they can't tell you exactly what is happening with their digestive systems. We have been through several specialized diets & supplements & have finally settled on what we think is helping them, but both have struggled with chronic constipation.” “They dismissed my concerns because he wasn’t celiac, but chronic constipation during early development prevented potty training; at 14 years old, he’s still in pull-ups.” Sleep “My kid used to sleep for 4 hours every 3 days. Almost 30 years into this, she sleeps 4 hours daily, sometimes in several pieces. Staying up through her insomnia has been soul-shattering & brutal. My health has deteriorated, as I was left to monitor her during all waking hours plus figure out how to work while sleep deprived.” Sensory “It is hard to find a dentist who will adapt to sensory & behavioral issues & if you need sedation dental work. My son went without for years, & then when we found a dentist, he had to get 5 teeth removed at one time due to decay.”
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Name	Judy Stoltz
Demographic	Family member of an autistic individual
Response	My son has motor issues and apraxia His body does things that he doesn’t want it to do Sometimes minor like pacing or making involuntary noises But other times dangerous like jumping in front of speeding cars or throwing object at family members or self injurious behavior like hitting his head again the wall or door-jam When asked what he wanted to tell the regional center at his annual meeting, my son spelled “ AUTISM IS NOT A COGNITIVE OR BEHAVIORAL ISSUE, IT IS A MOTOR ISSUE. WE NEED PEOPLE WHO KNOW HOW TO COACH OUR BODIES” Not people who are trying to teach us to talk “I AM NONSPEAKING, I AM NOT NON VERBAL”
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	We thank the IACC for the opportunity to comment. We note that given the importance of these issues, it is unfortunate that the submission format for this RFI significantly limits respondents’ ability to provide thorough, meaningful comment. Please visit https://bit.ly/48eGZzO to view our comments in full, including citations. Difficulties during pregnancy and birth are a common issue for autistic people. According to an NIH meta-analysis of 13 studies on pregnancy experiences in autistic people, we are more likely to experience “preterm birth, cesarean delivery, and pre-eclampsia”. Given what we know about Black maternal mortality, we can extrapolate that Black autistic birthing people experience these issues at an even higher rate. More research is needed in this area. Forced birth is known to cause adverse health outcomes, especially for disabled people. Given abortion restrictions in the wake of Dobbs v. Jackson and the fact that many autistic people are on Medicaid/are, which does not cover abortions, these adverse outcomes are becoming a bigger problem for our community. Police violence is an often-fatal threat to the physical health of Black autistic people and has been recognized as a public health issue. Police violence is never the victim’s fault and no amount of police training can solve this systemic issue on its own. To reduce this threat to our community, we must decrease police encounters and hold officers accountable for the harm they cause.
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response	The most challenging part of co-occurring disorders is that often traditional treatments such as medication and surgery don't work or don't work well enough.
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	My child has autism. She experiences gastrointestinal disorders and sensory disorders.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Sleep Disturbances: Lack of quality sleep not only impacts the person diagnosed with autism but also the parent/family. Brain function, including emotional regulation, impulse control, ability to make decisions etc. are all negatively impacted by lack of sleep, including sleep with nightmares, which are often the side effect of medications. Example: when it is time to make a medication adjustment, if the person with autism is sleep deprived, you cannot tell whether it is a problem with the medication, or just because the person is sleep deprived, which then can cause an incorrect decision to discontinue a medication. In addition, when an individual is awake at night, that person is not necessarily safe, so that situation then impacts the family member who must also be awake. This in turn impacts the family member's ability to function. Innovative methods of treating sleep disturbances - could brain ultrasound be utilized as it has been for addiction for instance? Sensory Challenges: There is not enough research and new ways to work with individuals that have autism with sensory issues. Innovative new treatments are needed that are NOT medication based. Sensory challenges can impact literally every moment of a person with autism's life. Think about it, if your hearing, smelling, feeling, seeing, tasting and touching are all either on hyperdrive and ultra sensitive or muted which can set a person up for a dangerous situation, life gets very scary.
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response
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Name	K
Demographic	Autistic individual; Researcher
Response	GI disorders, sleep disorders, and sensorimotor challenges affect almost all autistic people. GI disorders can be particularly frustrating because they stack on top of existing difficulties with food and eating. Similarly, sleep disturbances can worsen mental health, reduce tolerance for sensory stimuli and changes, and increase the risk of other physical health problems. Many of us also have issues with joints that are less often talked about. Headaches, including migraine, are also more common and can be triggered by or increase sensory overstimulation, and they might be under-recognized because of their seeming similarity to sensory overstimulation. Dysautonomia may also be under-recognized and can be very disruptive when present. Epilepsy is less common among high functioning autistic adults but very common among those with ID and is a potentially very serious issue when it is present. Finally, stress, poor eating, poor sleeping, and poor self-care can increase the risk of type 2 diabetes, autoimmune diseases, heart problems, or similar conditions.
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Name	K
Demographic	Autistic individual
Response	I find that I don’t know everything about health related conditions to autism. There isn’t enough available information for me to access, and when I’ve asked for medical advice I’ve been shoved to the side. I do deal with gastrointestinal problems, questionable sleep patterns, and as of lately, sensory issues are a huge problem for me. Some days I wake up with my senses in hyperdrive, and smelling anything is enough to make me throw up—even if I like the thing the smell is associated with. (Fried fish and lemon, espresso, coffee vanilla extract, etc) other times I have to wear sound-cancelling headphones because the sound of someone’s breathing, another person’s chewing, someone’s laugh, the radio over the loudspeakers—is too much—and makes me want to tear my hair out. I also have audio processing troubles—if someone doesn’t enunciate their words clearly or let me watch the way their mouth moves when they speak, I can’t articulate a single thing they said. It’s even harder when I’m trying to talk to people with stronger accents, and it’s not their fault, but I feel absolutely terrible that I can’t understand what they are saying.
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Name	K
Demographic	Autistic individual
Response	Maintaining a healthy diet while having GERD, food aversion, anxiety and ADHD as well as autism impacting ability to grocery shop. Hard to get consistent sleep due to sleep apnea and insomnia Difficulty with fine motor skills, balance, coordination due to dyspraxia
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Name	K
Demographic	Autistic individual
Response	I would say my biggest co-occurring conditions would be daily gastrointestinal issues including IBS as well as the overall joint and muscle pain. My closest comparison is HEDS right now but its immensely tight muscles that get pulled or strained due to weak joint that cant hold up. My hip has popped in and out since i was a teenager (~15) and i would say I pull a muscle weekly.
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Name	Kaalyn
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Pain conditions, light sensitivity, auditory processing disorders, visual disturbances, and temperature dysregulation make outings, doctor's appointments, socialization, and general independence a near impossibility. The overstimulation maxes me out before I can even leave my home. The need for captions, low light, quiet places of reprieve, and operational hours later in the evening (the darker hours) are just non-existent in aggregate. I'm additionally a wheelchair user and that alone is a barrier to society independent of the autism.
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	Ehlers Danlos Syndrome (hypermobile type), Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, Gastrointestinal processing disorders, auditory processing delays, chronic fatigue, sleep disturbances, heightened nervous system reactions, dopamine driven addictions
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Name	Kaela
Demographic	Autistic individual
Response	I'm extremely impacted by exhaustion, gastrointestinal distress, anxiety, migraines, and joint pain. I find it very hard to eat nutritionally consistently, not only because of sensory preferences, but also becuase I am often nausesous for no reason that doctors can gifure out. I struggle to ever feel rested no mater how many hours of sleep I get. My anxiety has a negative impact on most areas of my life. My biggest source of pain is from migraines, and it has been a multi year journey to get any sort of reliable and effective treatment for those migraines. Part of it was discovered to be due to join issues, but most my bodily issues I learn about conenctions from people within the autism community and doctors never seem to know that information or how to help.
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Name	Kai
Demographic	Autistic individual
Response	Sleep disorders. Every symptom of my autism is exasperated by my lack of sleep but I have struggled my whole life to sleep more than 4 hours a night except rare days when I sleep 12 hours or more. I've been put on sleeping pills before but their effectiveness diminishes rapidly if they work at all. So much would be easier if I could just sleep
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Name	Kai C.
Demographic	Autistic individual
Response	Personally I have a combination of autism and ADHD. The worst physical symptoms I deal with are in relation to things like my dysautonomia. I have a hard time sleeping and getting comfortable in bed. My heart rate is irrationally high at different times even when mentally I’m relaxed. I have frequent body aches and pains and I’m not sure if it’s because of my dysautonomia or of some other medical condition like being so desensitized to pain at this point that I don’t usually register it when I hurt myself.
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Name	Kaisi rolfe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Karen
Demographic	Family member of an autistic individual; Other
Response	For us the most significant challenges were and still continue to be behavioral challenges and the level of functioning due to intellectual disability. The lack of awareness of self and of danger significantly impacts my son.
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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	Dental care is an ongoing and lifelong need that is not well served in the training of dental care staff, including dentists and is very hard to find in many communities. Often many miles away for dentist experienced in the needs and ways to provide basic care for this population, as children. Working with several other children in the room is problematic for these children but is often part of routine Pediatric dentistry. The need for sedation during some routine and many complex procedures is also a problem getting permission from insurance. Dentists with experience working with autistic children do not let their patient families know when they move to another practice. This should be done for consistent care and for best standards of care practices so families can find alternatives for emergencies and routine care.
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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	Invisible disabilities such as a delay in executive functioning, and pathological demand avoidance predisposes the individual to the misguidance of well-meaning institutions, such as the education and judicial systems. As per atpeaceparents.com 'Pathological Demand Avoidance (PDA) profile is often missed by professionals or misdiagnosed. There are two reasons for this: It is not yet a category for diagnosis in Diagnostic Statistical Manual (DSM-5) and because PDA produces paradoxical behavior that challenges the conventional wisdom on what is defined as "Autistic" (e.g. These children can often make great eye contact, have strong verbal skills, and a strong interest in social engagement).' My son has several comorbid conditions enabling all of his functionality which includes being able to ace material on tests however is unable to fully implement the skills necessary to master material. This type of disability masks the true achievement level of the individual being evaluated and the evaluation criteria of eligibility requirements to continue to be able to receive a free and appropriate education are skewed, even bias, masking real results. We need to changes these violations of human rights asap, thanks.
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Name	Karen Gee
Demographic	Family member of an autistic individual
Response	Gut health, sensory issues,
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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	autism with psychosis and OCD
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response	The medical community acknowledging co-occurring conditions is a problem. Too often they just say "it's autism" and don't dig deeper. If the underlying health conditions were addressed, the "autism" often is easier to address. You must take care of basic needs FIRST before education/learning can occur, and those basic needs include dealing with underlying medical issues.
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	Increase in seizure disorders during puberty caused issues in our school because school was not knowledgeable of this increase in diagnoses at this age and they were not prepared with enough nurses available at the middle school level; sleep disturbance is extremely important and significant. Leads to other problems with behavior, health, desire to eat, increased depression, etc. Weight gain after exiting traditional school and not having as active a schedule.
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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	Chronic illness leads to loss of income/work, loss of social support, and early morbidity. I have seen a high rate of stage 4 GI cancer leading to death in people in their 40's in this population; factors to consider include lack of close health care, unhealthy lifestyle habits, impacts of trauma and marginalization on health.
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Name	Karey
Demographic	Autistic individual; Family member of an autistic individual
Response	Digestive issues- constipation, sleep disturbances, Skin irritations (when washing is a struggle), teeth and gun issues (when tooth brushing is a struggle)
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Name	Kari Johnson
Demographic	Autistic individual
Response	Sensory difficulties, hyper flexibility.
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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	Demand avoidance, mood disorder, Pathological Demand Avoidance
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Name	Karoline Moxham
Demographic	Family member of an autistic individual
Response	Stomach related issues. My 2 ASD kids suffer from reflux and IBS related issues
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Name	Kat
Demographic	Family member of an autistic individual
Response	I have several autistic family members, and many of them really struggle with sleep disorders. They don't get enough sleep, which causes all sorts of long-term health risks and issues. My husband has comorbid ADHD, and his sleep issues complicate his attention issues and put him at huge risk for accidents and for long-term health complications like Alzheimer's. My son doesn't get enough sleep, despite his 90 minute long sleep hygiene routine and everyone working together to help him sleep. He's a young child, still growing, and we just cannot get him enough rest. I worry for him.
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Name	Kate D
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory issues, gastrointestinal problems, anxiety, depression, delayed sleep cycles, chronic pain, chronic fatigue, ADHD, memory issues, low libido, low energy/motivation, audio processing issues, POTS, hypermobility, disordered eating
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Name	Katelyn
Demographic	Autistic individual
Response	Having gastrointestinal issues causes a lot of problems when in at work. I end up taking a lot of time out of my day for this issue and it's really distressing. I also have sleep disturbances and that causes me to be extremely exhausted starting my day and it causes a lot of issues at work and making mistakes because I'm so tired. Sensory challenges were also a huge factor when I was a teacher and couldn't function with all the noise and had to take time when I should have been working to calm down.
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	Impulsivity and sleep disorders come to mind. Having to watch someone every minute of every day to keep them out of harm's way is exhausting. Many families do not have the means or the opportunity to get help or relief to keep their loved ones safe. With sleep disorders this makes them unsafe even overnight.
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Name	Kathleen Walker
Demographic	Autistic individual
Response	From my personal experience, sleep has always been a significant challenge. I also have Type 2 diabetes and sensory issues make it harder to manage my diabetes. For example, it's difficult for me to get blood tests done and I can't tolerate many vegetables due to texture issues.
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Name	Katie
Demographic	Autistic individual
Response
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Name	Katie
Demographic	Autistic individual; Family member of an autistic individual
Response	My son and I both have trouble connecting with and using our muscles effectively. When we walk, we tend to just move our bones through space, instead of properly supporting our frame with flexed and toned muscles. This led to numerous joint problems and long-term chronic pain. After 1000 hours of yoga, I finally understand how to move.
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances and executive dysfunction make it hard to keep an hourly entry level job. I and my child thrive in environments where the quality of the work is what matters and we can complete it in our own time, such as in salaried positions. Sensory issues and low social battery make me require shorter but more frequent vacation times. For example, taking a 4-day weekend once a month as opposed to a 2 week vacation twice a year.
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Many co-occurring health issues are invisible disabilities, and autistic people may explain or experience symptoms differently than allistic people. Most doctors are completely inequipped to pick up on differences in symptom presentation due to sensory or communication differences.
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response	I personally feel like the pain experienced from these conditions are amplified due to my autism and others don’t understand that and think I’m overreacting.
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Sensory hyper/hyposensitivity, communication differences, sleep disorders
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Name	Kayn L
Demographic	Autistic individual
Response	Hypermobility Syndrome: chronic moderate to severe pain in hips, knees, lower leg, back, elbows, and wrists
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Name	Kd
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory issues Seizures / epilepsy Genetic conditions Gastrointestinal disorders Migraines
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Name	Kelley, parent
Demographic	Family member of an autistic individual
Response	The inability to get medicine in a preferred form, such as having a sensory aversion to pills, yet cannot find medicine in any other form.
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Name	Kelli
Demographic	Autistic individual
Response	Getting overwhelmed and overstimulated very often. Eventually causing burnout and lots of stress on the body/mind.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response	Difficulty falling asleep, audio and visual sensitivity, especially in places with fluorescent lights,
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response	Many of the co-occurring health conditions in autistic people cause aggression towards themselves, known as self-injurious behavior; or others like close family members, teachers, and therapists.
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	GI, lung differences, microbiome differences, lack of dental - particularly sedation dentistry, sleep issues, sensory and motor issues, intense behaviors of properly destruction, aggression and SIBs, speech and apraxia. Practitioners of all types commonly lack genuine care, flexibility and willingness to serve those with severe ASD, recognize underlying conditions, and to treat them holistically - they are unprepared. Diagnostic overshadowing is common and procedures, labwork and appointments can themselves be problematic. Facilities are ill-prepared to address the sensory, daily living and behavioral challenges. Hospitalizations add another layer of problems. Access to services, quality of life for the entire family, and heath equity are all compromised. Waits for diagnoses and services can be long. School MH supports are variable and usually inadequate. Psychiatry, nursing, and density are a challenge; sedation dentistry means a year’s wait. RTFs and ICFs have no space. Group homes are rife with abuse and neglect with low quality, poorly trained staff, lack transparency, and internal BS and incident handling are flawed. Group home to exclude and villainize families is commonplace.
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response	lack of understanding/education regarding what co-occuring conditions to expect/look for and how to treat effectively causing delays, under treatment or no treatment lack of care coordination of the co-occurring conditions lack of access to the services
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Name	Kelly Tabeling
Demographic	Family member of an autistic individual
Response
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Name	Ken
Demographic	Autistic individual
Response	I do not know if this is related to autism, but I have three autoimmune diseases: Crohn's Disease Celiac Disease Type 1 Diabetes I attribute my autistic focus to learning the mechanism of action for each of these diseases in order to manage them to non-disease levels. My methods do not follow the medical establishment, however, they are successful, resulting in symptom and complication free.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Nervous system disabilities presenting as behavioral challenges (Pathological Demand Avoidance), sleep disturbances (including narcolepsy), sensory challenges
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	Gastrointestinal disorders are one of the most challenging physical health conditions that affect me, followed closely by sensory issues. They have an immediate and daily impact on my ability to function as required by society and the quality of my life.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	The biggest problem is being listened to and having these co-occurring physical challenges acknowledged. I wish there was more understanding and acceptance. Poor sleep and hyper sensory challenges mean being wiped out: physically, mentally and emotionally and therefore overly wired and on edge. This makes interacting and relating positively with others an additional challenge.
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Name	Kerry
Demographic	Family member of an autistic individual
Response	Gastro/metabolism of nutrients
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Name	Kerstin Powell
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Other occurring disorders disrupts the patient's ability to self regulate. Sleep issues, anxiety, GI issues, even a common cold, can send an individual on the spectrum into a spiral. Many autistic individuals struggle to communicate discomfort, and, even if they can intimate that they don't feel well, they may not be able to tact body parts or conditions that are making them uncomfortable, adding to the communication frustration that manifests in maladaptive behaviour.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	My son is severely autistic/non verbal, and some of the co-occuring health conditions that he demonstrates include pica, self injury behavior, gastrointestinal disorders, (infrequent) seizures and inconsistent sleep patterns.
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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	Research demonstrates that individuals diagnosed with Autism experience frequent gastrointestinal symptoms, and those symptoms are associated with “an increase in self-injurious behaviors, somatic complaints, reduced sleep duration, and increased parasomnias (Restrepo, et. al, 2020). Initiating sleep and being able to maintain sleep are known challenges for Autistic children, as is sleeping for excessive periods of time and night sweats (Romeo, et al., 2021). Epilepsy prevalence is much higher in the Autistic population than in the general population, and experts believe there to be a connection between the two disorders (Besag, et al., 2017). GI problems, sleep disturbances, and sensory differences all correlate with anxiety. Substance abuse and eating disorders have become more prevalent in the Autism community over the last few decades. While typically categorized as psychiatric disorders, these disorders clearly affect physical health and life quality when they co-occur with Autism.
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Name	Keyunna Harris, Caregiver
Demographic	Family member of an autistic individual
Response	Sensory and motor-challenges when the autistic individual is non-speaking and do not have the motor strength to work with a standard AAC device. Gastrointestinal disorders due to limited diet and sensory challenges, but no means of communicating those problems.
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Name	Khalila
Demographic	Autistic individual
Response	Low energy, orthostatic intolerance
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	As a provider of services of some individuals with Autism who are also nonverbal, the most significant challenge is understanding when they are in pain and where the pain is. We are often unaware that someone is in distress until its really bad or too late. It is very frustrating and upsetting for the individual, their families, and loved ones. Many individuals have not received proper medical care from healthcare professionals who understand where and what to look for. .
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Name	Kris Guin, Queerability
Demographic	Autistic individual; Representative of advocacy organization
Response	As an Autistic person recently diagnosed with Type 2 Diabetes, I have found most forms of treatment for diabetes inaccessible to me.
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Name	Kristen Brake
Demographic	Family member of an autistic individual
Response	Sensory motor coordination
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response	Binge-eating/obesity
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances - difficultly falling to sleep and frequently waking up in the middle of the night.
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Pain not addressed or believed. Sleep disorder from childhood to late adult either never addressed or treated then medication removed. Various gastrointestinal problems. Hyper-mobility in joints becoming more disabling with age. Postural orthostatic tachycardia syndrome not addressed or treated.
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	sleep disturbances, disregulation (both physical and emotional) that is unpredictable and can turn into dangerous behaviors (both self-injurious, to others, property damage) within seconds, seizures
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response	Sleep disturbances and sensory challenges. I've always had sleep issues since I was very little.
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	ARFID has minimal resources available to navigate nutritional deficits. Parents and individuals should have safe and neuroaffirming guidance available to help expand dietary options that may alleviate gastrointestinal issues, increase immunity, assist with interoception challenges, and lead to a more satisfying and fulfilling life. Motor differences such as apraxia and dyspraxia are often overlooked yet highly impactful. It seems everyone is focused on behavior but lack the understanding of motor differences that can directly correlate to intense feelings of frustration and sensory overwhelm that motor challenges and their being misunderstood or unrecognized can lead to.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA
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Name	Kylie
Demographic	Family member of an autistic individual
Response	Sensory motor and gastrointestinal issues
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Name	Kym Pettitt
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	For my son, it is: Type 1 diabetes Celiac Disease
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Name	L. Void
Demographic	Autistic individual
Response	Gastrointestinal Disorders- IBS-D (Stress is a major trigger. Every day I go to work, I get sick to my stomach) Gerd Episodes of pancreatitis Sludge reported in gallbladder Other- Insomnia Deviated septum Impacted wisdom teeth Severe allergies
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Laura
Demographic	Autistic individual
Response
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	Celiac, leaky gut, EDS, autoimmune diseases, anxiety, depression, hyper mobility, fibromyalgia, chronic pain, GERD, insomnia, SPD, dyspraxia, ADHD, OCD, PDA
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	Sleep disturbances, sensory integration, balance issues, and executive functioning.
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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	When people experience physical health challenges, it is difficult to function at school, at work, at home, in relationships, as parents, and as community members. Suffering related to physical health conditions and difficulties fulfilling our valued social roles can then affect our mental health. In our field, we have often focused on academics, employment, and independent living, without the foundations of freedom from pain and physical suffering coming first, and I hope we put more focus into helping autistic people identify, manage, and cope with physical health conditions in the future.
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Name	Laura Mansdorf, Mother of an Autistic Child
Demographic	Family member of an autistic individual
Response	My daughter has had casts, braces on her legs and botox to try and reduce the likelihood for surgery on her heel cords in the future. Her idiopathic toe walking and mixed muscle tone leads to unsteadiness, which results in falls. She has been diagnosed with insomnia. Her sleep issues make it difficult for her some days to attend to tasks and to learn. Her sensory issues and anxiety over food have required her to continuously work with therapists so that she doesn't backslide into only eating 3-4 things. She's made an incredible amount of progress, and it takes a lot of continual effort to maintain it.
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Name	Laura Mewbourn
Demographic	Autistic individual; Family member of an autistic individual
Response	I think for both my son and I, our most significant physical challenges are related to sensory difficulties in the public sphere. This is one of the least understood yet aspects of being neurodiverse and can be frightening both for the person on the verge of meltdown as well as a stranger witnessing said meltdown. I would order groceries and have them delivered, but I cannot afford the extra costs associated with delivery fees, tips, etc.
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Name	Laura Saenz
Demographic	Autistic individual; Family member of an autistic individual
Response	Hypermobility and connective tissue disorders like hEDS contributing to gastro, sleep, POTS, MCAS, PMDD, endometriosis, poor healing of wounds, hernias, migraines due to cranial cervical instability and chiari malformation. But #1 is the medical gaslighting telling us it’s just anxiety then prescribing meds that don’t work for our neuro type.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	My PDA son’s ability to access basic needs of sleep, eating, toileting and hygiene practices due to the accumulation of stress bought on by his nervous system threat response means that his disability requires increased amounts of care giving support.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response	Physical aggression to others s the worst in profound autism, invidualized care is important,. My son bites, kicks, push us.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	I’ve had lifelong GI issues, disordered sleep, dander and pollen allergies, and migraines. The latter two get worse in periods of stress and often coincide with times when I feel overwhelmed. Eating can be difficult for me as well, which has worsened the GI issues. With the exception of the allergies, my autistic partner experiences all of these to a greater extent; she also has more sensory and motor challenges, which all impact her day-to-day life. Overall, I think that these all contribute to stress and anxiety; for example, when eating and food are already hard, GI issues make them even more of an ordeal. Problems with food, problems with sleep, poor self-care, and the stress caused by all of these compounding with each other, can lead to a general increased risk of additional physical health issues.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Fibromyalgia, sleep disturbance, AFRID, eczema, ehlers danlos
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	As far as physical conditions, the two most commonly cited are seizure disorder and gastrointestinal issues. In addition, health disparities and discrimination exist for people with developmental disabilities . We appreciate the NIH designation of people with disabilities as a population with health disparities. We participated and highly suggest IACC examine the Center for Dignity in Healthcare for People with Disabilities, now called Think Equitable, recommendations on prenatal, mental health, transplant, and end-of-life care. Finally, we would add the risk to children/youth with autism and other developmental disabilities having limited access to good oral health providers.
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	PDA (Pathological Demand Avoidance) is a subtype of Autism that much more research is needed to understand and better provide accommodation and services for.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response	It is a challange as these co-conditions often exacerbate and trigger the health/mental co-condition(s) that my daugher has. An example is she struggles and has since birth with sleep disturbances . When her sleep is sporatic it interferes with her abilities to manage anxiety/depression , ADHD . When she has gastro intestinal issues , she can not longer eat and doesnt feel well, retreats socially and this triggers her anxiety and affects her sleep
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Collagen disorder - joints unstable and resulting chronic pain. Having to take weeks of disability off to rest hands, back, hips from seeming normal use. Postural Orthostatic Hypotension likely secondary to collagen disorder - unable to maintain adequate cerebral perfusion when standing. Fainting or "blacking-out" when changing from seated position to standing position.
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Name	Leanne Maidment
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disorder has had the biggest impact on our family. Both I and my two autistic children have had problems with sleep and lack of sleep impacts so many other areas of life.
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Name	Leanne-Claire Civiletti
Demographic	Autistic individual; Other
Response	I find that the most challenging aspect is the lack of education and experience in the medical profession of Ehlers Danlos Hypermobility and autism. I have always had sensory difficulties with sound and fabrics, light , the inability to hear and process information over the phone. I’m 67 years old, I was adopted at birth and I wasn’t diagnosed with Autism until I was into my late 30s. I learned to mask my symptoms , since I have become profoundly sick with CFS-ME and have been with several unknown rare diseases. My psychiatrist has diagnosed me with delusional disorder thinking that I have diseases that most medical professionals have not had experience treating. My visits have all been over the phone, when I requested that my psychiatrist look up Ehlers Danlos syndrome she couldn’t understand why that disease has anything to do with psychiatric disorders. Trying to educate individuals on the complexity of the inter connected relationship of systematic diseases.
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Name	Lee S.
Demographic	Autistic individual
Response	Honestly, the health effects of the items listed (stress created, lack of sleep and sudden, severe conditions that can occur in random situations), coupled with the challenges Autism already presents can make processing one's environment nearly impossible in both the short and long term.
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Name	Leeann
Demographic	Autistic individual; Family member of an autistic individual
Response	There are many physical ailments that effect the autistic community ranging from gastro intestinal issues to ehlers danlos syndrome. I suffer with many and find that it is difficult to keep up with a regular 9-5 work week and keeping a consistent routine due to the inconsistencies that coincide with these ailments. Regular daily functions become almost impossible at times because these ailments also affect our mental well being and ability to form a healthier lifestyle
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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	Bipolar and significant sensory challenges, in addition to autism and ID, cause my son to have severe behavioral challenges. There are no programs and services in ECF that are remotely appropriate for my sons needs. By their design, the day and supported living services in ECF will NOT be able to manage my son's behaviors. Sadly, they will cause him extreme mental anguish and duress that will escalate his dangerous behaviors over and over again. He needs supports designed for lifelong high behavior support needs. This does not currently exist.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	my son has a sensory delay, and also sleep disorder
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Name	Lesley
Demographic	Family member of an autistic individual
Response	Epilepsy, sensory and motor challenges and anger
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Name	Leslie
Demographic	Autistic individual
Response	Communicating clearly. Doctors like make up their own idea what I'm saying
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response	Epilepsy is the most severe challenge for us bc my son has been hospitalized 3 times for uncontrollable seizures. He’s on 3 medications now to prevent them but we are worried about his risk factors each day (is he overtired? Overstimulated?) and managing his medication is complicated w 5 doses daily. We cannot bring him to events past 6pm due to seizure risk. He also has GI issues - obstipation - do watching his intake and output each day and managing GI meds too. He cannot speak or indicate if he is in pain so often we are guessing about how he feels.
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	Have to keep on a strict diet so they don't get sick, which means hyper vigilant monitoring of all made and purchased food and drinks. Getting to see the right specialists when dealing with bi-polar disorder as well as autism and medication. Very hard to get in with a provider who doesn't just throw medications at you.
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Name	letitia smith
Demographic	Autistic individual; Family member of an autistic individual
Response	constipation (gastrointestinal)
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Name	Lewese, Child with ASD with PDA profile
Demographic	Family member of an autistic individual
Response	Severe Sensory and emotional anxieties linked to PDA profile, mismanaged at school leading to violent outbursts to the point my son is now refusing to attend school due to extreme anxiety. Locks himself in room, and barely interacts even with me. It is very stressful with no support as a single parent, while waiting for NDIS .
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response	Our family deals with sleep issues - both myself and my child, and PDA (Pathological Demand Avoidance) - my child.
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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	My son has severe constipation, and apraxia which makes it impossible for him to communicate verbally and perform daily care tasks. Both of these conditions lead to extreme anxiety at times and difficult behaviors. My son is on a very special diet which requires cooking most food at home and can limit opportunities for social activities. He needs support 24 hours a day to help with cooking and shopping and self-care. He cannot drive or take public transportation. He cannot communicate his wants and needs verbally. He is learning how to communicate more by spelling out words and this gives us some hope.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	Mental health disorders, gastrointestinal disorders
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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	When staying overnight with Special Olympics they have a no prescription medical cannabis regulation which is problematic because conventional prescription drugs didn't work for my son's sleep disorder and off of those pills he was lucky to get 0 to 3 hours of sleep per night, prescription medical cannabis always 6-10 hours.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	Lack of understanding of processing, sensory and communication sensitivity which effects behaviors.
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Name	Linda Schepis
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory regulation challenges impede attention and learning.
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Name	Linda, Parent
Demographic	Family member of an autistic individual
Response	GI problems- co Stilton and GERD mainly Sensory and motor challenges. Unsteady gate. Sleep issues. Too little and trouble sleeping. Frequent pain. Headaches and stomach aches mostly.
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Name	Lisa
Demographic	Autistic individual
Response	I personally experience gastrointestinal issues, motor challenges,and insomnia
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	The biggest physical impact on my son is gastrointestinal, hypermobility, weak muscle tone and sleep issues. I am undiagnosed but likely on the spectrum. I also have gastrointestinal issues, chronic pain issues, hypermobility of joints, and migraines.
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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 because it is so common and impacts so many people
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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	Epilepsy, anxiety taking medication
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Many in our severe/profound autism population suffer physical pathologies that can severely compromise well-being, to the point of being fatal. These include catatonia, epilepsy and seizures, gastrointestinal distress, insomnia and sleeplessness, and sensory overload. These pathologies can be ruinous to quality of life for the individual and family. They cause suffering and often, premature death.
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Name	LizC12, Self
Demographic	Autistic individual
Response	I'm currently getting further testing due to chronic pain. Part of said pain is severe gastrointestinal pain that also causes extreme nausea and even severe vomiting. I do not sleep well. I also. Have sleep issues, either i cannot fall asleep or I cannot stay asleep without the aid of a prescribed muscle relaxer. Not to mention certain textures, sounds, smells, flavors, and lights make me extremely uncomfortable, or icky
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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	The Evolutionary-Stress Framework (ESF) from the Center for Adaptive Stress views autism as part of a complex adaptive system, focusing on neurodiversity as an adaptive response to environmental and internal stressors. In this context, co-occurring physical conditions in autistic individuals, such as gastrointestinal issues, sleep disturbances, epilepsy, migraines, and sensory or motor challenges, are deeply intertwined with mental and cognitive health. These conditions are seen as part of a spectrum of inflammatory regulation issues, reflecting neurotype-specific stress responses and trade-offs. Understanding these conditions through the ESF lens suggests that both physical and mental health issues are interconnected, necessitating a calibrated approach to treatment. This involves fine-tuning various health aspects to achieve a balanced state, recognizing the unique stress adaptation patterns of each individual. An ESF-based approach to care emphasizes ecosystem-focused, personalized interventions, considering the complex interplay of factors influencing health in autistic people. This perspective shifts the focus from treating isolated symptoms to addressing the broader adaptive context of health and well-being of emergent allostasis.
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	trouble sleeping due to compulsive thoughts; motor challenges, particularly when walking (sometimes just falls down)
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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	As an autistic adult, some of the things I struggle with most because of my current co-occurring conditions are pain, fatigue, motor control issues , and worse quality of life. The symptoms that I have make it so it is difficult for me to hold a job, to focus in school, to maintain an income above the poverty line, be mobile around my daily tasks, and I struggle with activities of daily living. Other experiences as an educator and advocate support many of these same struggles, though the reasons behind the struggles may differ slightly. For example, while my gastrointestinal issues do cause me great discomfort and can interfere with life, I have seen other autistic individuals who have lack of bowel control or extreme pain. This, similar to my co-occurring conditions causes dysfunction in both basic and instrumental ADLs.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response	A lack of understanding from healthcare professionals. Difficulty in using verbal communication to give a clear history to healthcare professionals. A tendency to underestimate the severity of symptoms due to the different ways autistic individuals communicate.
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Scoliosis and other skeletal differences are more common in people with autism. I had a full spinal fusion when I was 11 due to severe scoliosis. I have chronic pain twenty years later and permanently limited mobility. My liver is unable to process certain medications. A low dose of sertraline caused me to enter serotonin syndrome. My concerns were dismissed by my psychiatrist as my flat affect led her to doubt my self-reported symptoms. I suffered sterile meningitis. I was unconscious or in status epilepticus for 2 days before being found and taken to a hospital. I still have seizures and must take medicine. My diet and behavior are limited due to sensory issues. I love to cook well-rounded meals, but I am not able to eat them. My diet is mostly processed foods as they are uniform and consistent. I eat too little and my digestive system is slower than most. I am frequently bloated and constipated. I must plan my errands for when there will be little traffic, and when stores will not be busy to accommodate my sensory needs. I can only manage one errand a day usually, and must nap after. I sleep approximately 3 hours at a time, with a few hours of wake time between. This is incompatible with work or life, but I am not able to make myself sleep more. 1.5mg of melatonin leaves me tired the next day, more gives me night terrors, less and I will not stay asleep. My brain’s preferred sleep schedule is 2-4 hour naps, 2-3 times a day.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response	My situation with son is 2-fold. His epilepsy, sleep disorder, sensory challenges and self-injurious behaviors cause his pain and discomfort as well as significantly limit the activities, even so-called disability friendly activities, that he has available to him. He in turn becomes more isolated and less likely to do any activity. In addition, due to the fact that he's nonverbal is it very difficult to find a medical practitioner who is willing and able to treat him and take our concerns seriously.
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	getting accommodations discrimination Sensory challenges finding healthcare
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Name	Mabel Thomas
Demographic	Family member of an autistic individual
Response	Restricted eating, interrupted sleep, sensory and motor challenges, behavioral expression of disability
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Name	Maci Barbour
Demographic	Autistic individual
Response	Joint dislocations, Gastroparesis, chronic pain
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Name	Madeline Lodge
Demographic	Autistic individual
Response	The most significant challenges are sleep disturbances and sensory challenges. The autistic mind is always going at high speed and thus needs heavy sedation to fall asleep. In regards to sensory challenges, our senses are so fine-tuned that we are very selective with our food and drink (which means that we are choosy even when we are beggars) and we find bright lights overwhelming (like the ones in every public place ever)
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Name	Madison
Demographic	Autistic individual
Response	Sensory processing issues, sleep disturbances, stomach and bowel complications, co-occuring ehlers danlos syndrome, co-occuring Postural orthostatic tachycardia syndrome, panic attacks, autistic meltdowns, extreme periods from PMDD
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Name	Maegan Hayes, Social Science Specialist
Demographic	Autistic individual; Family member of an autistic individual
Response	The significant troubles I suffer from are gastrointestinal issues. My ulcerative colitis becomes hard to manage when other aspects of my mental health are suffering, such as my depression and ADD.
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Name	Maeve Sherry, Pan-End-It!
Demographic	Autistic individual
Response	Long Covid
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Name	mags, diagnosed autistic
Demographic	Autistic individual
Response	As I understand it, many autistic folks develop joint problems, namely a higher likelihood of ehlers-danlos syndrome.
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Name	Maija Vance
Demographic	Family member of an autistic individual
Response	The inability to attend school due to a nervous system disability called PDA. My son is unable to access school due to Pathological Demand Avoidance. This has caused our family to have to rearrange our lives including dropping my work so I can stay home with him. It also disturbs his sleep and can cause him to stay up all night.
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Name	Mara LaViola
Demographic	Family member of an autistic individual
Response	I believe for many autistics the sensory issues are significant, global, and often overlooked. Much like Blindness and Deafness, autism is a sensory based disorder that is minimized, but the visual and auditory deficits that co-ocur with autism are severely disregarded. Many autistics have visual and auditory impairments that make accessing the learning environment extraordinarily difficult and they need explicit and intentionally designed instruction in concept development, auditory listening skills and other items blind and deaf students get from the Expanded Core Curriculum. My son has cortical vision impairment and a functional loss of hearing that is so severe it is analogous to deafness. Both are functional losses of sight and hearing that are significant and woefully unidentified in individuals with autism. My son just got DeafBlind eligibility at the age of 19 because everything was attributed to his autism. I know you will hear more about the other physical health conditions so I wanted to emphasize these as they are severely underidentified and significant. In Europe, 40% of autistics also have cortical vision impairment.
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Over 40% of individuals with a diagnosis of ASD also have a major mental health diagnosis. The healthcare system aims to provide whole person care while also stating it is concerned with continuity of care yet behavioral health is separated from medical care. One effects the other and there cannot be true whole person care when the needs of the individual are treated separately. Additionally, there are typically more than one co-occuring condition with people who are autistic. For example, my daughter has a mental health diagnosis, she is autistic, has GI issues, connective tissue issues, learning disability, to name a few.
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Name	Maresa
Demographic	Family member of an autistic individual
Response	Sleep disturbances and sensory and motor challenges
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	Treatment that works
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	I am a bilingual Care Manager for people with Developmental Disabilities and receiving OPWDD services. The physical health conditions presented by individuals in the Autistic spectrum are: 1. Gastrointestinal disorder 2. Sleep disorders 3. Allergies 4. Epilepsy 5. Skin problems
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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 physical 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 , and behavioral needs. Many children will come into school and fall asleep due to not sleeping at night, making it difficult to learn anything during the school day, others may have sensory and motor challenges making it difficult to show safe behaviors throughout the day. The most significant I would say are any co-occurring physical health conditions that present to be frequently dangerous based on the individual person.
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response	I think that many of these co-occurring health conditions are caused by the extreme anxiety that many autistic individuals suffer in navigating a world that seems hostile to how their brains and nervous systems function. My teenage daughter has two gastric ulcers, trouble maintaining a regular sleep schedule, AND sensory and motor challenges. It seems that perhaps these co-occuring conditions might be part of being autistic?
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Name	Mark Byam
Demographic	Other
Response
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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	Mental health is health, which is more often than not is separated out in terms of looking at the complete health picture. Challenges for people with Autism are health/mental health professionals both recognizing how someone may be affected by mental health, versus challenges being related to Autism.
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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	In response to this question, the IACC may wish to review the following article, Al-Beltagi, Mohammed. “Autism medical comorbidities.” World Journal of Clinical Pediatrics, 2021 May 9: 10(3): 15-28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8085719/. Accessed January 10, 2024. This excellent article provides a detailed list of autism comorbidities. There are 205 articles on this topic in the PubMed database at the NIH National Library of Medicine, National Center for Bioltechnology Information. In the PubMed Central database at NIH there are an additional 22,227 articles on this topic. Thus, there is plentiful information about this important topic. A very important outcome of these medical comorbidities is that they are difficult to diagnose because the child is often nonverbal, plus there may be competing behavioral problems which mask, or are the result of, underlying medical comorbidities. A huge and significant impact of these problems is that they deny children and adults with autism access to medical and therapeutic treatment and impose a staggering care burden on the family. Parents face huge obstacles in getting access to coordinated medical care for their children, and in having the child’s problems properly treated.
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Name	Mary
Demographic	Family member of an autistic individual
Response	Day and night are turned around for my 42 year old son. Concern with early onset dementia.
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Name	Mary Jane Reis, Parent
Demographic	Family member of an autistic individual
Response	In infancy and early childhood, my daughter struggled to sleep, often getting in fewer HOURS of sleep than the minimum number of hours suggested by pediatric guidelines. More research into infant and toddler sleep is desperately needed, as less sleep suggests less time for necessary brain "wiring." Could it be that sleep disorders in early childhood exacerbate or even cause autism? Today, my daughter's sleep is much closer to norms, but she still struggles to fall and stay asleep (see next section, anxiety) Note: My daughter was treated for infection/ spent 10 days in NICU - is there a link between infant infection, autism and / or poor sleep?
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	universal access, space for durable medical equipment, and assistive technology. Built environments that are not person centered or not trauma informed causing the physical environment to exacerbate behavioral responses instead of facilitating independence and agency
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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 suffer the most from every condition possible Know To Man
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Name	Mattie Wentz
Demographic	Autistic individual
Response	hypermobility is a big issue for me. doctors are too quick to dismiss our complaints or blame them on autism/gender/other things.
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Name	May
Demographic	Family member of an autistic individual
Response	Sensory voices, texture
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I am a socialized female Autistic person and my co-occurring physical conditions include; Sensory sensitivities (light, temperature, noise resulting in burnout. Sleep disruptions, food allergies, Autoimmune Condition (Lupus + Hashimotos), POTS,
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	We see some random gastro issues, but the families we work with access medical care for that. Sleep, or lack there of, is most common. This can cause mixed moods each day with a person who is not able to communicate being tired or not able to recognize less tolerance of triggers due to lack of sleep. We also struggle with participants not being able to identify and then communicate pain/discomfort/problems with their body. e.g., tooth pain, headaches, upset stomachs, etc.
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Name	Megan
Demographic	Family member of an autistic individual
Response	Constipation, insomnia, poor coordination
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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	Sleep disturbances, restricted eating (ARFID)/ disordered eating, pathological demand avoidance
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	In my experience, sleep disturbances and sensory challenges cause the most problems. No one can function well without enough sleep, and sensory issues can cause all sorts of problems in school, the workplace and at home.
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	You are doing this public comment for autistic people, yet these questions are not worded in plain language to make it accessible to answer them, so I will do my best. The most significant challange is accessibility to be at work and school. There is a huge lack of accommodations for these issues. The need for flexible schedule, mobility devices, sensory aids, access to bathrooms. Autistic individuals like myself are unemployed at a high rate. Things like making remote work the norm would greatly increase the ability of autistic individuals to work and go to school.
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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	My insomnia has caused significant disruptions to my ability to work as I often have periods of insomnia that go on for weeks at a time with little to no sleep. I found that the primary reasons for my insomnia were my sensory sensitivities: small noises in the house, light peeking through my window, or temperature changes.The solutions have been: trying a weighted blanket, playing white noise at night, wearing noise-cancelling earplugs to bed, and having a separate duvet from my partner. I work with autistic patients and many including myself have GI issues - most commonly IBS or GERD. I find that supplementing with a probiotic helps both my emotional regulation, gut regulation, and social anxiety. I also find that I have vestibular issues - it is hard to keep my balance. My noise and light sensitivity make it essential for me to work from home or in an office with dim light. I must wear noise cancelling headphones when going to an overstimulating environments such as the grocery store. My tactile sensitivity makes it difficult to have jobs where I must shake people's hands or wear tight clothing. I have poor interoception and this makes it difficult to identify my own emotions - I do not realize that my heart beating faster for example is happening because of anxiety. There is a disconnect between my physical body and my emotions.
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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	Epilepsy GI disorders (e.g. IBS) Sleep disturbances Hypermobility spectrum disorder / hypermobile Ehlers-Danlos Syndrome Chronic pain / Fibromyalgia Chronic fatigue POTS / dysautonomia Long COVID OSA ME/CFS Migraine Vitamin deficiencies Metabolic disorders Mast cell dysfunction / mast cell activation syndrome / mast cell activation disease Sensory/motor challenges
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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	I am an Autistic family physician, providing primary care to Autistic patients across the lifespan. I am the founder and Executive Director of All Brains Belong VT, a nonprofit 501(c)(3) organization in Vermont that is pioneering a novel model for neuroinclusive healthcare delivery. We integrate medical care with social connection, employment support and community education so as to holistically address multisystem barriers to health and quality of life. With support from the Organization on Autism Research and the Health Resources and Services Administration (HRSA) of the US Dept of Health and Human Services (HHS) under the Autism Intervention Research Network on Physical Health grant, All Brains Belong’s task force of interdisciplinary clinicians and 100+ neurodivergent people co-created a free resource about the constellation of intertwined medical conditions commonly afflicting Autistic people. This includes hypermobility, mast cell dysfunction, dysautonomia, pain syndromes, gastrointestinal conditions, sleep disorders and more. The constraints of the healthcare system often interfere with clinicians addressing multiple medical problems at a time. Often the standard management of some parts of the cluster makes other parts worse. When viewed as a whole, many patients make more progress. This free resource presents content in text, graphics and video, and includes content for both patients and primary care clinicians: https://allbrainsbelong.org/all-the-things
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response	Sleep disturbances, motor challenges, physical growth of tongue/mouth muscles (from lack of speech) ADHD
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	not sure if depression would count as the co occurring physical health condition. My son has Developmental Delays, depression and autism (and a host of other things). The challenges come in interpersonal relationships at school, work and home. Also challenges finding employment when skills are compromised and interpersonal and judgement and attitude is compromised. The world is always correcting and fixing his behavior which leads to greater depression and hopelessness.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	I have always had trouble sleeping , getting restful sleep, staying asleep, sleeping too much. I have joint hyper mobility, my knees have been dislocating since I was 12. I have chronic pain that treatment doesn’t help. I have stomach issues. I have severe CPTSD from abuse. The world feels like it was not made for me.
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response	sleep disturbances and behavioral issues.
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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 relate to activities of daily living which can include education, work, social connection - the toll taken on emotional well-being can be high.
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Name	Melissa Sanchez
Demographic	Family member of an autistic individual; Other
Response	Sensory challenges. Much of the world is not designed to accommodate people with sensory challenges. Or we have to jump through hoops too be accommodated.
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Name	MG Chappell
Demographic	Autistic individual; Family member of an autistic individual
Response	In my experience as an autistic individual, I have gastrointestinal issues as well as sensory challenges. The sensory challenges sometimes make participating in public settings difficult. My issue is primarily with scents. Experiencing things like vape and cigarette smoke make it very challenging to interact with people emitting it. This has even impacted my marriage and other interpersonal relationships.Having to mask or fight through the need to lash out at the disturbance causes me anxiety and stress. I also have sleep issues, including chronic fatigue and sleep apnea. My gastrointestinal issues include having trouble if my diets varies in any way. In my children, they have textile sensitivities, including not being able to wear certain types of fabrics. My daughter needs chewy devices for her oral needs while my son prefers weight and pressure for comfort.
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Name	Mia
Demographic	Autistic individual
Response	I personally have hypermobility and an unspecified dysautonomia. Hypermobility has caused chronic pain for me. Walking as much as a typical person results in my knees/ankles aching at night, so I avoid it as best I can. That avoidance has caused deconditioning and probably has contributed to my depression. I have not been diagnosed with a sleep disorder but I very frequently do not feel rested after I sleep. I dealt with hypersomnia for a while (1-2 years) where I'd sleep 12+ hours and still want to sleep more. I am particularly sensitive to some sensory inputs, such as bright lights, noise, and smells. I cannot relax in most stores, school, or work. There is a great sense of anxiety that I get from that kind of overstimulation. I am uncomfortable going most places. Having to mask sensory overwhelm is exhausting, and when I return home from doing so my energy levels are very low, and can very well stay low until the next day. Consequently, I stay at home most days to avoid feeling so depleted. I will also get meltdowns when sensory overwhelm becomes too much.
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Name	Michael
Demographic	Autistic individual
Response	For me personally, I have mobility and pain management issues from an injury so each day is quite painful physically as well as stressful. My work environment is extremely loud, which causes me stress and hearing loss. I am burning out faster as I get older.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	Needing speech therapy
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Name	Michael Raney
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety and stress on nervous system
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Name	Michael Rathbun
Demographic	Autistic individual
Response	I experience GI disorders, motor challenges, prosopagnosia/prosopamnesia, topological agnosia, aphantasia, and Severely Deficient Autobiographical Memory (SDAM), various manifestations of executive dysfunction.
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Name	Michaela
Demographic	Autistic individual
Response	It's definitely difficult to get to sleep. I've had to medicate and do deep breathing exercises just to get my body to go into sleep mode. "Sensory challenges" is the biggest thing. If I become overstimulated, it can lead to severe irritability, up to a meltdown, in which I need to separate myself from any company in order to just let it out. Overstimulation can be caused by loud sounds, too many different sounds at once (i.e. several people talking while the tv is on, an itchy tag on a shirt rubbing against my neck all day, conflicting scents, etc.)
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Name	Michelangelo molina
Demographic	Autistic individual
Response
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Name	Michele Brady
Demographic	Family member of an autistic individual
Response	It is very hard to get comprehensive care for autistic individuals. Parents must coordinate care with many specialists who are not autism specialists and do not understand how these health conditions interact on the individual as a whole. Pediatricians and primary care doctors are very under educated in treating autism and co-occurring conditions. It is very hard to get medical guidance that considers the whole child or adult.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Sleep disturbances, sensory processing disorders (including Avoidant Restrictive Feeding Intake Disorder), gastrointestinal disorders (including Acid Reflux, GERD, Chronic Constipation), Gross and fine motor issues
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	Constipation, lack of sleep
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Name	Michelle Grochocinski
Demographic	Other
Response	I want to elevate that hypermobility and associated disorders, including hypermobile spectrum disorder (HSD) and Ehlers-Danlos Syndrome hypermobile type (hEDS), is significantly more prevalent in individuals with autism than the general population. EDS is a genetic connective issue disorder that can impact all bodily systems and cause a variety of symptoms, including joint pain, chronic pain, fatigue, sensory issues, GI issues, and sleep disturbances. MCAS and POTS are frequent comorbidities. EDS is underdiagnosed and frequently misdiagnosed. It is important to educate providers about hypermobility disorders and screen individuals with autism for hypermobility and EDS.
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Name	Michelle Harris
Demographic	Family member of an autistic individual
Response	Gut/GI issues, motor coordination and low core tone, sensory aversions.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	sleep disturbances, gastrointestinal, anxiety
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Name	Michelle Linn, Parent, Provider
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Headaches, neurological issues (epilepsy), gastrointestinal, and sensory and motor difficulties are all significant challenges for us. Autism needs to be diagnosed biologically, not through the subjective DSM-V. We need science to distinguish between autism and the co-occurring health conditions with specificity. As it stands, there really is no hard science to differentiate between autism, epilepsy, or any other psychiatric disorder. It's a subjective pile of nonsense. All research should be directed toward biological markers and the cause of autism. The fields of psychiatry, psychology, and neuroscience should not be involved in or directing autism research. Unfortunately, these professions have monopolized most what has been published on autism, which is why we have had such little progress during my son's lifetime (he is 29). We need a radical shift in the autism research strategy.
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The lack of practitioners with specialized training to support the adult autistic population. Parents and caregivers seem to continually dismissed as historians for their adults with autism experiencing co morbid issues
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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	Anxiety, depression, PTSD autoimmune issues (higher stress levels tied to genetic predisposition)
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	Sleep disturbances, sensory challenges
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Managing care with providers that do not have enough training or knowledge in neurodiversity. Doctors, primary care providers and therapists do not use a neurodiversity affirming lens and it creates a huge medical bias that harms neurodivergent individuals and creates more disabled people.
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Name	Mikol Bailey
Demographic	Autistic individual
Response	GI disorders, EDS, Sensory and motor challenges.
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	These co-occuring conditions amplify each other & show up in asd trait presentation & the standard is to keep throwing medications at a person to try and stop the worst of the behaviors & trait presentations that cause problems for them in society instead of treating the actual problem from an asd standpoint. Mine have the toileting/gastro problems, sleep disorder, extreme sensory disorder, dyspraxia(medically klutzy but meant they also have problems writing/rendering) one has epilepsy, another has a seizure disorder, extreme migraines, and require therapies as older teens even. We need ABA access as adults, social skills help too
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Name	Mina
Demographic	Autistic individual
Response
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Name	Minela Fernandez MD
Demographic	Service provider, health provider, or educator
Response	When I was running a feeding clinic, many infants were sent to me around 9 mos of age with feeding difficulties, and most of them, during the f/up period with their feeding therapist, where then diagnosed (or referred for further evaluation) with Autism.
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Name	Missy Garcia
Demographic	Autistic individual; Family member of an autistic individual
Response	For me, the most significant challenge lies in diagnosis. There are so many overlapping symptoms, so it’s hard to tell what is the autism showing itself and what is an actual physical health condition. I think, second to that, is the paralysis that comes with trying to figure it out. That can lead to missed diagnosis of medical conditions that do need to be treated.
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Name	Misty Cameron
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Hypermobile Ehlers-Danlos is really difficult to deal with as it causes increasing joint pain and stiffness; many doctors know little to nothing about it and I have been medically gaslit by my providers for years bc they did not recognize what was happening to my body. I might have been able to get help sooner and not be in as much pain as I am if doctors were better educated on this.
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Name	Molly
Demographic	Family member of an autistic individual
Response
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	As a parent of an autistic child, sleep and sensory challenges have been the most difficult to help my child manage and have created major stressors for our 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 physical health conditions, my daughter has experienced or has currently - GI symptoms, sleep disturbances, epilepsy, sensory & motor challenges. I think there needs to be more education about these conditions available to the public and health care providers. The specialists for these conditions must have training about all of the other possible comorbidities that Autistic people experience, and 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	Our son demonstrates the PDA (Pathological Demand Avoidance/Persistent Drive for Autonomy) profile of Autism. His nervous system disability causes him to perceive threats to his safety in common/banal everyday situations that neurotypical or non-demand avoidant individuals do not perceive. This greatly compromises his functionality and causes a great deal of anxiety for him. It affects some of his access to basic needs (hygiene, toileting, sleep, protecting his own safety). It has profound effects on the mental and emotional health of his family members (parents, sibling, extended family).
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	abdominal pain and trouble digesting (gastrointestinal disorders) especially connected to preferring only certain kinds of foods and textures, and connected eating disorders, Extreme/Pathological Demand Avoidance
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Name	Myles Davis
Demographic	Autistic individual
Response	Low energy caused by insomnia/sleep disturbances, and higher possibility of meltdowns or shutdowns from poor sensory and motor function/regulation
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	I personally have dealt with chronic pain, stomach issues (IBS, reflux, stomach pain), a weak immune system, joint pain, and chronic insomnia my whole life. It's also important to understand that the sensory issues associated with autism itself can be experienced as physical or somatic symptoms. For example, when I am in a noisy place my ears and head hurt, my eyes burn, and I often feel nauseous. This can make it difficult to differentiate between symptoms caused by overstimulation, and those caused by other health conditions. It also makes it very difficult to get accurate diagnosis from doctors, who often will say the physical symproms are "just stress" for example. For my daughter, who has had sleep issues her whole life, we cannot parse whether her insomnia is caused by physical conditions like apnea and asthma, or by her autism. Personally, I have gone undiagnosed with medical conditions like anemia because I thought my exhaustion and dizziness were caused by autistic burnout.
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Name	N/A
Demographic	Autistic individual
Response	Sensory challenges has to be one of the most significant challenges for me, I can’t count how many times I get overstimulated on a daily basis weather it’s because there’s no many things happening around me, too much sound too much light the way that my clothes feel ect it is truly hard to learn how to cope with these things and the feelings that come with being over stimulated in normal everyday life.
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Name	Nancy
Demographic	Family member of an autistic individual
Response	Motor challenges, epilepsy, sensory and motor challenges are some of my son’s challenges. He also has very limited speech. Difficult to communicate needs. My biggest concern (we live in Massachusetts) is the horrifying lack of staff in adult day program. The system has fallen apart due to a few reasons. Health and HumanServices have deserted the Disabled, autistic and other disabled adult citizens. Prior to Covid they had barely acceptable services from staff that had none to limited training. After Covid many potential and entry level staff “went away”, left their jobs for more pay. The problems are astronomical. The whole Federal/State Human Services needs an entire overhaul. That includes Ma Dept. Of Develompmental Servises also. My son has been out of his day program for 4,4,4, I’ll say it again FOuR YEARS. A SIN
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	I have 52 years of experience working with people of all ages with legal blindness, total blindness and partial sight (low vision). Approximately 15-20% of the people we serve identify on the autism spectrum with the highest percentage of people under age 30 and the lowest percentage of people age 60 and older. Two big problems are that people who are receiving services or enrolled in programs for their autism who are also blind, do not routinely get referred to the blindness services. If they do get referred for blindness services, the blindness service system is often not prepared to serve them appropriately. If they start in the blindness system, they may not get properly diagnosed on the autism spectrum losing out on those services. There needs to be increased funding and adequate number of trainers for cross training between the two service systems and funding streams.
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Name	Nancy Hauprich
Demographic	Family member of an autistic individual
Response	Finding providers/physicians that are trained to treat individuals with autism.
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Name	Nancy Williams
Demographic	Family member of an autistic individual
Response	Sensory issues are challenges including food textures resistance, sensory pressure seeking, sensory movement seeking for regulation and sensory seeking for close, tight spaces.
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response	The most significant challenge for my child's life has been her Non-24 Sleep-Wake Disorder. This condition is more common in the blind population, but over the past five years I have seen that there is a large segment of people with Non-24 who are not blind and are autistic. Non-24 is a circadian rhythm sleep disorder which affects the person's sleep and wake times since their days are over 24 hours long (often 25-26 hours long). When a person is able to follow their own body clock and sleep when needed, their sleep/wake times will go around the clock. For my own child, she goes to sleep and wakes up and hour later each day. She has had sleep issues since infancy and I believe she's lived with Non-24 her whole life. It wasn't until I was able to let her sleep as needed and kept a sleep log, that I noticed the typical Non-24 pattern. After 4 years of keeping records, I was able to get a diagnosis from Dr. Bushnell at UW Medicine here in Seattle. My daughter has been homeschooling since I understood what Non-24 was and concluded that receiving accommodations from the public school system would be difficult. There are other co-occurring health issues, such as gastrointestinal problems (GERD, hiatal hernia), and sensory overload. But her Non-24 has had the greatest impact on her daily life.
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	For me it is sleep disturbance and ADHD. I consider ADHD a physical issue because it is, as I understand it, a wiring/neuron occurrence and not a mental health problem. Furthermore, ADHD is not a mental illness.
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Name	Natalie
Demographic	Autistic individual
Response	I have chronic gastrointestinal problems and my lack of interception often exacerbates the problem because I don't feel internal body sensations until they turn into pain. For example I don't feel hungry until I'm sick and my head hurts. On top of that I also have eating disorder ARFID so my diet is lacking in proper nutrients.
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Name	Natalie , Woman
Demographic	Other
Response
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Name	Natalie Mason
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep difficulties. I'm seeing a large number of anecdotal reports of a connection to Ehler's Danlos, POTS, gastroparesis.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Sensory challenges, mental health challenges, poor dental hygiene, lack of effective treatment options
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Name	Nathan Blenkush, The Judge Rotenberg Educational Center
Demographic	Service provider, health provider, or educator; Researcher
Response	In many cases, co-occurring physical health conditions affecting people with autism spectrum disorder are addressed in precisely the same way such conditions are addressed in people without autism spectrum disorder. However, for patients with autism spectrum disorder and concurrent, severe, treatment refractory aggression, self-injury, and other destructive behaviors, receiving routine medical care or medical care for physical health conditions can be complicated and challenging. First, such patients are often difficult to transport and require restraint, protective equipment, and high levels of staffing simply to safely bring the patient to the outpatient appointment. Second, some patients do not tolerate routine diagnostic and assessment procedures including venipuncture, x-ray, dental exam etc. Third, some outpatient offices do not tolerate disruptive behaviors in their waiting room or offices and ask the patient with autism spectrum disorder to leave. In many cases, patients with ongoing aggression self-injury receive less than optimal care because of their severe problem behaviors. Creating situations where medical specialists can assess and treat patients in environments comfortable for the patient (e.g. day/residential treatment program) may be helpful for such patients.
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Name	National Council for Mental Wellbeing
Demographic	Representative of advocacy organization
Response
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Name	Nele Van hemelen
Demographic	Family member of an autistic individual
Response	Sleep disturbance ARFID/eating disorders Hyperactivity Sensory overload
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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	Sleep disorders Gastrointestinal issue, constipation, cyclic vomiting syndrome, food aversion Stim vs Tic : tourettes Speech development: nonverbal Sensory needs : proprioceptor stimulus input demands
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	Sensory issues, electrolyte imbalance, insulin resistance, memory issues, fainting, muscular pain, anxiety, gastric issues. Please refer to the research completed by Kimberly Kitzerow, writer of Discovering Autism and the Comorbidities Along the BH4 Pathway.
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Name	Nicholya Crockett
Demographic	Family member of an autistic individual
Response	For my child, diagnosed with autism with demand avoidant profile, we have found sleep disturbances to be the top physical condition that affects him daily. He will stay up late every night, despite being very tired. This is not something he chooses.
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Name	Nick McCurdy, Patient/Advocate
Demographic	Autistic individual; Family member of an autistic individual; Researcher; Other
Response	Dealing with disability, overwhelming stimuli, and loss of executive function with medical issues
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	All these co-occurring conditions manifest themselves in personalized ways for each individual.. This means that, in addition to a clinical diagnosis, we need to assess the interactions among them.
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Name	Nicole Corrado
Demographic	Autistic individual
Response	My menstrual cycle disregulates my mind and body. I get very emotional, cry easily, get more stuck, and more agitated. I often make poor decisions around that time. I also have a lot of anxiety and OCD.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Mental health, sleep, and sensory
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	LONG COVID IS A BIG CHALLENGE IN AUTISM WORLD, COVID19 CAN CAUSE PTSD WORSENING ANXIETY, GUT THYROID DYSFUNCTION IN AUTISM WORLD. TMJ, HIGH RISK GLACOMA, WEIGH GAIN. INSOMINA, UNRESTFUL SLEEP, FOOD ALLERGIES, INTOLERANCES
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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
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Name	Olivia
Demographic	Family member of an autistic individual
Response	Sensory challenges
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response	Behavioral challenges where they have socially unacceptable behaviors including physical aggression against others, yelling, throwing things, eloping, hygiene concerns.
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances affect every aspect of a person's (and family's) daily life. Our child is almost 6 years old and has never been able to sleep more than 1-2 hours without one of his parents with him. He just doesn't feel safe alone or with a pet, stuffed animal, with or without nightlights, etc. Consequently we are all tired all the time. It's well known that sleep issues can also negatively impact behaviors and ability to self soothe, etc.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Sleep disturbances, avoidant restrictive food intake, sensory and motor challenges,
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autistic individual not being able to recognize or communicate the symptoms and/or discomfort of the experience. The result can be awful constipation that is hard to control, vomiting or diarrhea without any notice. After several years, I now recognize that my daughter has awful pms and accompanying pain. But she was never able to tell me. She no longer has seizures, but some of the behaviors related to past seizures remain, eg. night wetting. Sleep disturbances are particularly difficult as she wanders around the house and tries to get out. We had to lock all the doors, refrigerators, food and toiletry cabinets, and of course, everyone is tired.
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Name	Parent
Demographic	Family member of an autistic individual
Response	My 16 year old son has always had sleep difficulties and was diagnosed with severe sleep apnea last year. Had his tonsils out and just got retested for apnea and is now considered moderate. Will definitely need a CPAP because he falls asleep in school.
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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 was born with significant neurological deficits, swallowing & GI issues. Sensory and motor issues were so pronounced, he had total head lag and didn't use his right arm at all. Later came the expressive speech issues. All these improved (except the food allergies) due to access to therapies beginning at 8 months & because we had health insurance & received help from UHC Foundation. He could use more therapy for gait issues, stamina, postural and oro-motor challenges.
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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	While all of the COD above are challenging to individuals with ASD, I think the larger problem is the lack of clarity of how COD mental health challenges are identified and treated. In my work I am surprised that it is not seen that there are high rates of sexual trauma and PTSD in this population, emotional dysregulation, etc, and a lack of attention to this side of the person. 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 on that basis.
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response	The treatment and services of these issues, are not the same for the neurotypical population. The autistic thinking processes are different, and therefore must be treated and serviced differently. Communication can be limited, both receptive and expressive, which means traditional procedures, need to be adapted. It can be difficult for someone to find the words to describe what they are feeling when recovering from or beginning to have, a seizure. The sensory input received from the autistic individual can be greatly exaggerated and painful/confusing/traumatic for the individual. When providing services, all environmental conditions need to be considered and understood, to allow for a successful experience.
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Name	Patricia Wright, Proof Positive
Demographic	Representative of advocacy organization
Response
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Name	Patricia, Student
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory related disturbances can stop an individual from engaging in necessary day-to-day tasks, and impede regular and necessary function. Some affected areas are personal hygiene, excursions (grocery shopping, appointments, etc), work related tasks and socialization.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	The most significant challenges that are caused by co-occurring physical health conditions are sensory circumstances, motor challenges, loneliness, and sleep disturbances.
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Name	Payton
Demographic	Autistic individual
Response	Some of the common challenges autistic people face in physical health is usually a heightened sensory experience, meaning that people on the autism spectrum are more sensitive to sights, sounds, smells, and sensations than the average person. This obviously has a wide variety of ways that it displays in others but it does limit experiences for a lot of people, movie theaters are too loud so they never go, clothes with tags cannot be worn, certain foods can't be eaten because of the sensory feel in one's mouth. This can obviously lead to dietary restrictions and dietary issues that can lead to gastrointestinal problems, and the sensory around hearing can prevent one from having a proper deep sleep and in some cases develop insomnia. These all lead to more extreme results but ultimately the cause is heightened sensory awareness and sensitivity to the point one can hear the sound of electricity moving through lights and other equipment.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response	orthostatic intolerance (POTS and non-specific) & pre-/syncope, disordered sleep, GI disorders, disordered eating from sensory limitations and/or poor interoception, propioception deficiencies and hypermobility-exacerbated injuries
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Name	Person with Autism
Demographic	Autistic individual
Response	sleeping disorders, co-existing mental health conditions and epilepsy
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	In my son's case, sleep disturbance followed by sensory concerns followed by motor challenges. Sleep disturbances probably have the greatest long term impact to variable mood, anxiety and depression.
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Name	peter mazure, parent
Demographic	Family member of an autistic individual
Response	Anxiety is a major issue, particularly regarding large crowds, loud noise, and small spaces (inside a car). Skin disorders are also a problem.
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Name	Pon kavitha Anbarasi, St. Mary's College
Demographic	Family member of an autistic individual; Other
Response	Physical illness include : motor challenges, unable to respond quickly, digestive problems, urinary tract problems.
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	People with autism are unable to communicate how they are feeling or talk about their symptoms and this can be really challenging not just for them but also for their health care providers. This can cause a delay in accurate diagnosis.
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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 Ehlers Danlos, chronic pain conditions, sleep apnea and other parasomnias, sensitivity to fluorescent/LED lights, Sensitivity to mold and sensitivity to synthetic chemicals. As more studies come out about the prevalence of PFAS and forever chemicals, I think we will see sensitive populations, such as autistic people, be negatively impacted first.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response	When an adult with autism is tasked with assimilation to an allistic (non-autistic) society, not built for their needs to begin with, the navigation of symptoms and inherent ableism they face at home, school, work, or even the doctors office is not aware of the possibility for autistic co-occurrence, we are doomed to be symptomatic. How can one manage symptoms if the underlying issues (both autism, and implied co-occurrence) is not noted? How are you to heal? How are you to cope? How can you ask for help, if your providers and peers and colleagues do no understand that these things are connected? It is alienating. I have been sickly my whole life, and been told numerous times that it is based in mental health; not neurodiversity, nor underlying co-current conditions. I wish more providers knew to even consider the physical aspects of living with autism; and the trauma that lives in your body, alongside it.
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Name	Rachel
Demographic	Family member of an autistic individual
Response	Makes treatment difficult
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response	For myself I struggle with my sleep, sensory and gastrointestinal issues. Which all have made my life very difficult. I can’t sleep through the night, I struggle with falling asleep, which when I’m not sleeping well my sensory issues are harder to cope with. I also have migraines, which are also disabling. It gives me vertigo, nausea, throwing up, changes in my vision, etc. My sensory issues have made my life extremely difficult between becoming over stimulated with simple life, but I do not handle change well. I need a rigid routine or I have meltdowns. It’s exhausting and frustrating.
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Name	Rachel
Demographic	Autistic individual
Response	I have a gastrointestinal disorder called irritable bowel syndrome. In my experience, it causes random vomiting and stomach cramps. It can be one of the reasons I stay up at night. It can also add to my selective diet because something’s hurt my stomach more.
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Name	Rachel brown, University of Kansas school of medicine
Demographic	Service provider, health provider, or educator; Researcher
Response	Many autistic individuals respond to pain differently including with severe behavior. I have seen horrible self injury and aggression in autistic individuals experiencing pain and discomfort. Understanding more about why this happens and why resources for physical care including dental card are difficult to access is a priority for me
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Name	Rachel Goodman
Demographic	Autistic individual
Response	medical professionals lack of knowledge about co-occurring conditions with autism is the biggest challenge. I wasn’t diagnosed until age 40 after suffering a lifetime with known co-conditions. It makes me think why didn’t my physicians put it all together? It wasn’t until I was diagnosed with ehlers danlos syndrome that I found out about the co-conditions of autism. Suddenly my list of conditions were no longer occurring independently but they were now part of a whole series of connected conditions.
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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	Sleep disturbances are quite traumatic on the caregivers, feeding concerns affect our quality of life a lot, and being non-verbal is the 3rd most Difficult comorbidity of autism.
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response	For my son, it is the GI issues. Sensory and motor challenges are difficult, but with therapies can be managed.
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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 physical disabilities. This means they will 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 the doctor for getting these conditions examined or appointments for recieving treatment. Doctors 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 physical 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	There is a lack of knowledge from some practitioners about the correlation of physical conditions and autism, which can lead to specific treatment styles that end up not working, as there can be an improper case conceptualization. The strongest conditions I see are ARFID (often mistyped and treated as anorexia), GI issues due to lack of appropriate nutritional care and understanding, hypermobility disorders, dysautonomia, and mast cell/histamine conditions.
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Being victim of bullying and infantilization, being called in derogatory terms, being advised, spoken over, and misguided.
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Sensory and motor challenges
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Name	Rashelle
Demographic	Autistic individual
Response	I suffer from depression and anxiety that has made it difficult to function in day to day life at work and in society. I get massive panic attacks in form of dreams that have me waking up tired and exhausted, usually not ready to function in the day.
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Name	Reagan
Demographic	Autistic individual
Response	I suffer from sensory issues on a constant basis. It has given me anxiety that I’ve been diagnosed with. Sounds are often too much, especially when it’s as a surprise.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep, stomach, and attention issues along with sensory. My husband and I are both autistic and both have various traits. He has adhd for example as well and I’m the one with the sleep and stomach issues. I’m on a journey of discovering all what is wrong but I have many stomach conditions diagnosed such as diferticuli, esophogitus, history of ulcers but no H pylori, so on. I’ve had many surgeries as well, Interesting note was my autism was diagnosed well after all these issues. My husband got his diagnosis much earlier in his life
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Not being believed by health professionals. Not being offered treatment. Conditions being labeled psychosomatic.
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response	Sensory and motor challenges that impact feeding and safe swallowing.  Challenges in conducting evaluations for AAC and other communication interventions, requiring additional time and observations to provide comprehensive and person-centered recommendations for individual needs.  Hearing loss or other hearing-related challenges may impact the delivery of services. Equipment must be available, individualized, and tolerated due to sensory needs.  If physical conditions impact overall health and ability to attend therapy sessions, progress may be interrupted or slowed.
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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	Accessing mental health practitioners and other health professionals willing to see (feel confident and trained) in seeing adults with autism. Many refuse, especially mental health therapists who can do adaptive CBT and Exposure and Response Prevention (ERP) for people with autism AND OCD and anxiety. They actually can treat folks with ASD. Out family found that all it takes is a therapist who uses creativity, visuals, and trial and error like any good therapist they work with families and they can do it. Sadly too many just say NO> and families are left without help when their children are in worsening mental health crises. We need to train MH therapists to have confidence and some proven tricks of the trade we have from the skilled educators out there of autistic children/adults.
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	Significant sensory challenges, especially when out in public with large crowds Pain and discomfort from comorbid Elhers Danlos syndrome
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Name	Rebecca Farrell
Demographic	Family member of an autistic individual
Response	In our household, sensory and sleep disturbances are the most common challenges faced by our 10-year-old son. He requires a long bedtime routine, melatonin, and still wakes as early as 6am, even on weekends. His sensory issues cause problems with noise, even those that are pleasant, e.g., seeing a musical. On a recent trip to Disneyland, he constantly had his fingers in his ears.
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Name	Rebecca Jukes, Mom of Autistic Child
Demographic	Family member of an autistic individual
Response	Disordered eating that creates a host of issues ranging from only eating a certain number/type(s) of foods, eating all day or not at all for days and those issues create weight, mental health issues and nutrient deficiencies. ADHD and anxiety goes hand in hand with lots of autistic people. Medication backorders, the lack of support in the school systems, wait lists over a year long, lack of staff and income restrictions make it hard to find support workers, therapies, doctors, aides and education.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	My son has been home from school since October (4 months) due to severe GI symptoms. He has regressed in his skills over that time and has been very uncomfortable. He also has epilepsy, which is scary, as it can cause brain damage and even death.
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Name	Rex Frasier
Demographic	Autistic individual
Response	Trying to get treatment for the co-morbid health issues has been the biggest hurdle. Most autistic people seem to be hyper aware of where their ailments are coming from and what the cause might be related to through communicating with each other and heavy research. Sometimes the tests involved in this is less focused on what the individual NEEDS to be tested for and instead doctors want to test for EVERYTHING ELSE it could be FIRST. It has been my experience to strongly and calmly suggest to my doctor that I am acutely aware of the situation and that the combination of certain symptoms relates to these more "Rare" medical cases that are actually QUITE COMMON across autistic and neurodivergent people alike. Most of us, especially late diagnosed individuals, have spent MOST of our life trying to identify what is causing our issues just to find that the issues we have are very common across our neurological community even though the things being diagnosed are listed as RARE amongst neurotypical communities. People tend to infantilize us and not take what we are saying at face value because they assume we are just overreacting when we are not.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Chronic Pain Hypermobile Ehlers Danlos Sleep disturbance obesity menopause
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Name	Rick Grossman
Demographic	Autistic individual
Response	Adhd Insomnia. Isolation leading to emotional problems
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	Challenges for autistic people exacerbated by co-occur physical health conditions, revolve around daunting diagnosis process&barriers to healthcare access. Financial constraints due to insurance hurdles lead to hopelessness &mental paralysis in diagnostic journey. Privilege of diagnosis compounded by complexities in co-occur conditions, results in arduous path. System's inadequacy in providing immediate &compassionate aid hinders ability to function/thrive. Interplay of autism &co-occur physical health conditions complicates matters. Trigger events, like lacking time, energy, support for diagnosis process impact mental health. Gaslighting w/in the healthcare system exacerbates situation leading to conditions like PTSD. Persistent issues at root level including insufficient financial aid &restrictive regulations, perpetuate crisis for the diagnosed &undiagnosed. Repercussions of systemic failures contribute to alarmingly high suicide rates among autistic individuals. Research shows higher prevalence of suicidal thoughts/actions. Mental disorders, particularly depression/anxiety linked to unaddressed co-occur conditions, contribute to suicide attempt. A proactive approach to aid is essential, involving unrestricted monetary support, accessible healthcare practitioners embodying empathy, awareness/understanding. Redefining &implementing genuine "help" is crucial to addressing the urgent needs of autistic individuals, promoting well-being&preventing tragic outcomes.
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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	Please read my recent article that addresses the cause of autism spectrum disorder: Bransfield RC, Mao C, Greenberg R. Microbes and Mental Illness: Past, Present, and Future. Healthcare (Basel). 2023 Dec 29;12(1):83. doi: 10.3390/healthcare12010083. PMID: 38200989; PMCID: PMC10779437.
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Name	Roberta Kane
Demographic	Family member of an autistic individual
Response
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Name	Roberta Lincoln, Parent Advocacy Group and lived experience
Demographic	Family member of an autistic individual
Response	SPD, gastrointestinal, seizures, MH issues, behavioral health issues, asthma, ADHD, learning disorders, anaphylactic food allergies, seasonal allergies, enuresis, hypoglycemia
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	In addition to those listed above: -Disorders related to autonomic dysfunction/dysautonomia -Neurologic conditions, including migraine -Connective tissue and autoimmune disorders, including EDS, arthritis, lupus, etc. -Metabolic disorders -Endocrine disorders, including thyroid disease The interactions/relationships between these disorders is also noteworthy.
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Name	Robin Blitz
Demographic	Service provider, health provider, or educator
Response	Sleep disorders are a significant co-occurring health condition because they can negatively affect an individual's physical and behavioral health, as well as the impact on the family and caregivers. Access to in-home behavioral health providers that can be present around bedtime is unavailable for many, due to lack of providers and access to payment for this.
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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	Sensory challenges and sleep disturbances
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Name	Robin Weisman
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory. The multiple 7vsendory impacted areas, some researchers now say 9, can create significant challenges and inpact behavior, communication, emotional regulation, employment, etc.
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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	Many individuals with IDD have gastrointestinal disorders and frequently experience inadequate treatment for abdominal pain. This problem is especially acute for individuals with communication challenges. For example, the mother of a nonspeaking autistic individual in Milford Connecticut reported that, after a sudden spike in self-injury behaviors indicated her son might be having GI related abdominal pain, numerous GI doctors refused to run tests or provide treatment. People with IDD report that their pain is often discounted by medical staff, they are not considered to be ‘reliable’ judges of their pain, prescriptions for pain killers and/or muscle relaxants are often denied, and they are frequently accused of drug-seeking behavior. In some cases, medical staff assume that people with IDD cannot consent to treatments that could potentially address their pain. For example, one individual with autism in Milwaukee, Wisconsin reported that it took 20 years for medical staff to diagnose and treat her severe menstrual pain. They said, “I was refused a hysterectomy and told I had to try every birth control available multiple times because I couldn’t be trusted to choose the hysterectomy for myself.”
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Name	Rose Baumann, Parent advocate
Demographic	Family member of an autistic individual
Response	When an individual with profound autism is unable to reliably communicate, it becomes very difficult even to assess what issues might be impacting their physical health. This often results in self-injurious behaviors that only exacerbate the condition. For example, toe walking causes misalignment in the joints of the feet, legs and hips often resulting in pain. Some individuals, like my son, will kick or punch the areas that are painful as a way to either communicate that the pain exists or to try and change the pain experience in some way, Without the capacity to understand that hitting the affected body part will only cause further damage and pain, caregivers are forced to use padding or other restrictive means to protect the individual. When restrictive means are not possible, are not tolerated by the individual, or are prohibited by existing policies, the self-injurious response to bodily discomfort often requires medical treatment. More research on self-injurious behavior as a coping response to physical health issues needs to be done in order to save individuals with these behaviors from serious health outcomes, which may include death.
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	Sleep is challenging in young people pre diagnosis because melatonin and support in general can only be accessed via a paediatrician. Waiting list are very long
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep and sensory issues -struggling in school and work places due to this
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response	I have a hard time with both too much noise, and too little noise. I find it very hard to concentrate when I can't have my noise canceling ear phones on. Many times I've run into not only jobs, and testing centers, but also other spaces where I've been asked to remove them. They are literally keeping me from hearing EVERYTHING around me that leads to over stimulation and meltdown. I also have to deal with some undiagnosed gastro issues, sometimes I need to find the nearest restroom to deal with the pain I am in. Sometimes, the toilets are set too high for me to clean myself correctly (I am also obese), and that's just embarrassing.
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Name	Rowan Gibson
Demographic	Autistic individual
Response	Lam a 27 year old autistic adult. Iam nonbinary, and was assigned female at birth. Due to sexism in the medical and psychiatric fields, my myriad symptoms and presentations of autistic traits were ignored, dismissed, and undiagnosed until l advocated for myself to receive a diagnosis at age 22. There are many conditions or disorders I experience that are often comorbid or co-occurring with autism, including: chronic migraines, sensory processing issues, anxiety, brain fog, depression, dyspraxia, sleep issues, vitamin deficiencies, and potential OCD. lalso have experienced gender dysphoria, although this has lessoned since I was able to receive gender affirming surgeries such as a double mastectomy and a hysterectomy. In general, many of these issues are not fully studied in autistic adults, especially when it comes to the inclusion of trans and nonbinary autistics.
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Name	Rowan Leshy
Demographic	Autistic individual
Response	My ability to work full-time, maintain relationships, and my ability to have joy in life.
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Name	Ruby Bard
Demographic	Autistic individual
Response	The biggest issues with autism are the lack of accomidation and the wide discrimination for the health issues not the issues themselves. I have Ehlors Danlos Syndrom, Ulcerative Coitus, Postural Tachycardia Syndrome Mast Cell Activation Syndrome and Ulcerative Coitus. I already deal with the classics "Loud noises and bright lights hurt" but when my whole body is in pain at all times and I'm always on the edge of a meltdown. Its the fact that I am not accommodated for in public or professional settings. Doctors dont believe me when I say anything, or if they do they infantalise me about my own conditions and think im being over dramatic. Its hard to explain how a sound or texture or bright light can cause actual physical pain. Its the public reaction (and beliefs) that causes me the most harm. I don't feel supported in my disabilities. Nor do i feel like I have assess to the accommodation I need to have a healthy workplace. Ive lost jobs because they don't want to accommodate my needs.
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Name	Ruth Hevelone, PDA North America
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	nervous system challenges due to pathological demand avoidance (PDA) create severe functioning issues for anyone with this co-occuring issue. It creates severe eating, toilieting, sensory & sleep issues which make it challenging for PDA people to function in society.
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Name	Ruth Horowitz, Author of Living With Autism Undiagnosed
Demographic	Autistic individual
Response	Insomnia, and severe pain create increased risk of autistic burnout and suicidaliity. Loss of executive function. Physical challenges in general impede coping skills and increase risk of autistic burnout.
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	Gastritis makes it painful to eat at times and can make me feel full after I've only eaten a little bit. When I was in high school I was misdiagnosed with anorexia. It was just painful to eat so I often didn't eat for many days because it felt better to do that. I also wouldn't always eat because of my depression. It took many years for me to get a GI doctor because my doctors always said the pain was just psychological. About a week before my first appointment with a GI doctor I was in the ER because I had lost 15 pounds in 2 weeks because my esophagus was extremely swollen so I was even choking on cheerios so I could only eat liquid like stuff. Since I'm autistic my sensory system does work differently but I don't feel like that is a bad thing. I am sensitive to loud noises, too many smells, certain textures but I mostly able to deal with the things. Sometimes brushing my teeth can be difficult thing to tolerate. But in middle school I started using an electric brush and that helps me tolerate it much more. Also sometimes my GI stuff causes me to vomit a lot and have reflux. Back in October I had vomited constantly for 3 days and lost 3 pounds and then the first day I wasn't vomiting I had a 45 minute meltdown (with hitting my head, rocking, banging my head on the wall and screaming) which I think happened because my GI system was messed up. I also have Klippel Feil syndrome which causes chronic neck pain.
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Name	Ryan Bradley
Demographic	Autistic individual
Response
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Name	Ryan Erdozain
Demographic	Autistic individual
Response	I walk, talk, and write differently than my neurotypical counterparts due to my co-occurring conditions. My co-occurring conditions also make it hard to get around because I have a delayed reaction time and I choose not to drive for the safety of myself and others on the road. My disabilities affect many other parts of my body such as my eyes. They make it hard to see fine print when reading things from across a small space and from farther distances.
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response	EDS, gastroparesis, POTS, sensory processing disorder,
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Name	S.
Demographic	Autistic individual
Response	Finding proper help
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	Sleep, POTS (postural orthostatic tachycardia syndrome), hEDS (hypermobile Ehlers Danlos) and dysregulated nervous sytem
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Name	Sacha
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Sam Stern, either individual person or democrat-center
Demographic	Autistic individual
Response	getting people, even medical professionals, to believe you long enough to let you speak your piece.
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Name	Samantha
Demographic	Autistic individual
Response	These conditions cause us to disconnect from ourselves, others and the environment. They make normal daily living more of a challenge and necessitate more support and rest.
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response	EDS, POTs, sensory issues, gastrointestinal issues Tongue tie - needing therapy pre/post surgery, benefits of surgery as adult Dyspraxia- coordination fine motor skills issues.
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Name	Samantha
Demographic	Family member of an autistic individual
Response	For our case, severe ear infections landed us in the hospital many times. He had four sets of tubes. Many times due to him being non-verbal he could not even tell me he was sick until his fever was high. He also has many sensory issues which his preschool did not address and when his public school wanted to instill a uniform he was not able to wear it.
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Addiction to multiple substances. Sleep disturbances due to constant overstimulation. Low energy levels in the day due to the resulting insomnia. Frequent headaches. Frequent anxiety attacks.
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Name	Sandra
Demographic	Family member of an autistic individual
Response	Gastrointestinal issues, Sleep disturbance, Sensory issues with just the sleep disturbance along not including any other issues it is hard to make plans and abide by them.
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response	Not always being able to determine that I’m having a bad day because my stomach is upset. Or not being able to express it.
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Name	Sandy
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal issues. Hypermobilility issues. Sleep issues
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Name	Sandy Wormald
Demographic	Autistic individual
Response	I find that for those of us who are high masking we have no extra energy to mask. This can add more stress as those who are close to us try to make us mask back up instead of helping when we need it most.
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Name	Sara
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Sensory differences, ADHD (which I believe is on the same spectrum, not a co-occurring disorder), and differences in anesthesia! Pain meds and surgery meds work SO DIFFERENTLY! It is quite painful and frightening.
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Name	Sara
Demographic	Autistic individual
Response	I didn't know I was autistic until I was 48. The same year I saw a rheumatologist because I thought I had Lyme disease. I was tested for all auto-immune disorders, and tested off the chart positive for Celiac disease. I also have hEDS, and have had a multitude of physical injuries because of it (ankle rolling, unexplained bruising/cuts, thin, stretchy skin, LOTS of dental issues).
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Name	Sara Brown, Prevent Blindness
Demographic	Representative of advocacy organization
Response	Prevent Blindness is the nation’s leading nonprofit, voluntary organization committed to protecting and expanding access to sight-saving care for patients of all ages who live with a multitude of diseases, conditions, and circumstances that may affect their eye health or impair vision. Children with neurodevelopmental disabilities (NDD), including those with autism spectrum disorders (ASD), are at increased risk for vision disorders. Studies show that children with ASD have a number of visual system processing disorders and are at greater risk (up to 5 times) for refractive errors, strabismus, and other eye diseases such as optic atrophy and retinal dystrophies. Vision care is one of greatest unmet needs for these children. According to the 2022 National Survey of Children’s Health, only 41.9% of children with special needs ever (if under age 5) or in the past 2 years (ages 6-17) had an eye exam. Barriers to eyecare for children with ASD include:  Poor fixation and challenges with wearing eyeglasses for children  Lack of knowledge, skills, and equipment for examining children with ASD  Family lack of awareness of the importance of vision care  Lack of uniformity in requirements and guidance for eyecare for children with ASD  Lack of education for special educators and healthcare providers around the need for a comprehensive eye examination for children with ASD
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Name	Sara CdeBaca
Demographic	Family member of an autistic individual
Response	Sleep issues.
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Name	Sara Trovinger
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory and motor challenges lead to increased anxiety with our son. This makes it hard for him to leave the house and participate in normal activities that he should otherwise be able to be a part of. This increases the isolation of our family and just further compounds the problem. It is seeming impossible to break out.
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Name	Sarah
Demographic	Service provider, health provider, or educator
Response
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Name	Sarah
Demographic	Autistic individual; Family member of an autistic individual
Response	I believe a large proportion of autistic individuals are also experiencing hypermobility disorders which cause a constellation of other physical symptoms such as joint pain, allergies, GERD, insomnia.
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Name	Sarah K.
Demographic	Service provider, health provider, or educator
Response
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Name	Sarah Kelly
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	A lack of resources to help autistic individuals manage co-occurring conditions. A lack of public knowledge that the typical/well known autistic challenges do not encompass the challenges that occur with comorbid conditions.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response	Elhers Danlos Syndrome
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Hypermobility including chronic pain and frequent injury and postural orthostatic tachycardia syndrome - these have caused far more distress, grief, difficulties with school attendance for my 15 year old than direct autism or ADHD challenges
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Gastrointestinal
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	PMDD, allergens & food sensitivities, gastrointestinal disorders, sensory overstimulation, weak immune system/ prone to illness & infection, injuries from lapses in motor functions, fatigue, adverse effects of burnout and meltdowns
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Sleep disturbances, eating disorders, constipation, failure to thrive, low weight
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Name	Sarah Muecke
Demographic	Autistic individual
Response	Differing circadian rhythm, anxiety and depression, having to be around people, work life balance while maintaining daily life tasks.
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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	Myself and quite a few other autistic individuals I know of have hypermobile Ehlers-Danlos Syndrome and associated comorbidities like POTS, MCAS and spinal instability. This affects my entire nervous system from seizures to gastroparesis. As a life sciences research director and rare disease patient, I see from both sides how disconnected our medical system is. I’m uniquely qualified to navigate the diagnostic/treatment process and still feel completely lost trying to get care.
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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
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Name	Scott Jones
Demographic	Autistic individual
Response	research has shown joint issues, gastrointestinal issues, and sleep issues are the major physicals problems affecting autistic people
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	The patterns I have seen remarked within the autistic community are as follows: - IBS (commonly attached to the word 'stress'). - Sleeplessness. - Stimulation issues surrounding having to 'pretend' during work or social interactions (in the community, we call this 'masking'. Masking translates over time into 'burnout' and significantly decreases quality of life. To put simply, imagine an actor that never gets a day off for years. - Hypertension often results from the stress of masking and having to perform socially as expected. - Eating comorbidities, whether it be overeating/comfort eating to compensate for stress or lack of eating due to stress. - Dysregulated personal connections. Personal Story: During my 20's, I worked 2 jobs almost constantly plus a full social life. It was an average of 18 hours per day of masking, followed by an immediate 3-4 hour nap then house chores. This grueling pace is common throughout the autistic community, because we collectively want to be involved socially, but we only hold so much capacity. My imminent break-down occurred in 2018 at the age of 33, after a major life event tipped the scale of personal balance, and recovery spanned 4 years.
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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.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges I face are sensory, gastrointestinal motor skills as I also have ehlers danlos and sleep disturbances.
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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	sensory challenges
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response	Chronic/severe constipation. Requires medication to have movements.
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Sleep deprivation impacts everything else ! Aggression …. Being non verbal and having limited cognitive capacity ; self injurious
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	I experience significant challenges due to co-occurring physical health conditions like Polycystic Ovarian Syndrome (PCOS), hypermobility, acute eosinophilic asthma, seasonal allergies, sleep disturbances, and gastrointestinal issues. A flare-up of any of these conditions has causes significant distress by amplifying my sensory issues and flooding my nervous system with cortisol making me much more easily prone to meltdowns. I also deal with chronic pain which makes working even a part-time retail job very difficult as I cannot stand for long periods of time without experiencing significant pain and my many physical symptoms are a constant distraction from my duties.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Shawn Sullivan, Autistic adult
Demographic	Autistic individual
Response	The most significant challenge is finding medical providers who believe us. Most of my medical needs are not met. I have a lot of physical health conditions that persist because I have yet to find a doctor or insurance that will treat more than one problem at a time. Medical providers do not provide accommodations for people on the spectrum. They insist on verbal communication and will not provide follow up in writing. It is impossible to find a medical practice who will not discriminate against us because we are autistic.
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Name	Shawna Strickland, American Epilepsy Society
Demographic	Representative of advocacy organization
Response	For those with autism and epilepsy, the ability to obtain a history directly from the patient and to perform a physical examination in those with limited communication skills can be difficult. In such cases, the providers rely more heavily on objective testing. For example, EEG to establish epilepsy diagnosis from behavioral outburst is common. In addition, some patient behavior will limit obtaining standard testing without extreme methods (e.g., sedation for brain MRI or EEG). Another significant challenge is trying to figure out how often they are having seizures. For adults with autism who live in group homes and may not always be observed or be interacting with others, subtle seizures can easily be missed. Also, if staff are not diligent about writing down seizures in a log, it’s quite difficult to know the seizure frequency. Group homes can also have trouble distinguishing seizures from various types of behaviors.
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Inability to function in everyday life. One of the main issues we face is the lack of diagnostic criteria for the Pathological Demand Avoidance profile of autism (PDA). It is debilitating and schools will not recognize it forcing youth with autism to go through traumatic truancy court processes. Also, so few doctors know about PDA making it doubly difficult. We have no doubt our daughter has a PDA profile and desperately need help and have so few places to turn. other than PDA support groups and websites.
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response	Emotional regulation & sensory challenges
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	The inability to fall asleep, sensory issues that make you physically sick.
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	Being an autistic individual, I face many physical challenges as well. For example, I experience gastrointestinal pain and sensitivities, trouble falling asleep/staying asleep, nightmares and night terrors, auditory/visual/touch intolerances, and many more. My cardiologist has stated I present textbook POTS and am referred to a facility for a tilt table test for the official diagnosis as I faint if upright or walking too long. I cannot be standing/walking long.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response	Trying to medicate or treat both physical / emotional conditions without causing autism symptoms to worsen
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	The autism dx is primarily what unlocks resources and support, but sometimes it’s the co-occurring issues like PDA that require higher support levels, which can make it tricky navigating support systems when the autism dx says “level 1” but the PDA requires much more support than level 1.
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Name	Shelly Moss, Atypical
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The most significant challenges in my experience has been the unwillingness of the medical community to acknowledge that I have co-occuring conditions. I was diagnosed with SIBO and then told by my primary that I needed to lose weight before they could treat my bacteria overgrowth. My primary said "you don't have sleep disturbances" despite my sleep study confirming it undeniably. I still have yet to be referred to ANYONE to confirm or deny whether or not I have Ehler's Danlos Syndrome because "we don't know how to diagnose that." There should be a standard of practice and treatment for these well known common issues for people on the spectrum. As a female, I have had so many issues getting any kind of diagnosis that didn't pertain to my weight or gender. Everything gets blamed on those two things.
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	Sleep. Schools start too early. My son has a difficult time getting to sleep and then can't get up and going for school. If we force him out the door then he won't function in class. So if he doesn't sleep well, he stays home.
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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	-Anxiety (often not diagnosed) -feeding disorders; restricted diet -auditory processing disorders -apraxia -sleep disorders -OCD -difficulty learning due to lack of attention
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response	Rigidity and repetitive behaviors. These can be debilitating and hard to move on to another task and just get through our day.
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Name	Shiloh
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Not only the above mentioned, but also looking into the way medications can affect us differently. Especially, with mental health conditions and demand Avoidance.
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Name	Shonda
Demographic	Family member of an autistic individual
Response	Motor, sensory and sleep disturbances
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response
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Name	Sleep Research Society
Demographic	Other
Response	Sleep disorders are very common in autism, affecting up to 80% of individuals. Sleep problems are one of the most common co-occurring conditions that parents report to children’s pediatricians. Improving sleep is not only an avenue to improve health, but has profound effects on daytime functioning for the child and family. For example, daytime alertness and attention are higher with better sleep, and aggression is lower. Lower family stress and higher parenting sense of competence are also affected when sleep is better We would like to advocate for more research to address sleep problems in individuals with autism across the lifespan, as well as improved access to treatments, such as cognitive behavioral therapy for insomnia, in this population.
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Name	Sloane Walters
Demographic	Autistic individual
Response	I struggle with insomnia and IBS but the most difficult are my sensory issues. My sensory issues make it difficult to go out in public with bright lights, loud noises, babies crying, or even the hem of my pants getting the slightest bit wet from a rainfall. All of these things will send me into sensory overload and makes me never wanting to leave my house.
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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	Difficulty obtaining diagnosis and treatment for co-occuring physical health conditions due to 1. Doctors do not give diagnoses even when symptoms are presented, and may make the autistic person think they are over reacting to "normal" health experiences, and/or the symptoms are due to a lack of self-care and good health behaviors. For example I was told to eat a balanced diet, get enough sleep, and exercise when I presented all of these symptoms: fatigue, back pain, menstrul pain, pain during sex, frequent UTI's, frequent yeast infections, frequent upper respitory infections, hair loss, heavy periods, stomach aches, bloating, constipation, rosacea. I was later diagnosed with multiple chronic health conditions and auto immune conditions. 2. The autistic person is not aware that there symptoms are abnormal and/or important. For example, stomach aches, severe period pain, fatigue. I thought "doesnt everyone have that?" about a lot of my symptoms. 3. Its hard just keeping up with day to day life so autistic people have less time and energy to seek out diagnosis and treatment for health problems.
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Name	Special needs mom
Demographic	Family member of an autistic individual
Response	Chronic constipation.
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response	Sleep disturbances impact his day to day most. He is unable to sleep until 3AM on some nights
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	I cannot speak to autistic people generally, but I can speak about my son. At age 26, his greatest challenge is his anxiety, which has affected his ability to obtain full time employment. I think it also has contributed to high levels of stimming, including at work, which have affected his life.
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Name	Stephanie
Demographic	Autistic individual
Response	Sleep difficulties like insomnia often poses a significant challenge in autistic individuals. Sleep disruptions can intensify core autistic traits, influencing communication skills, social interactions, and emotional regulation. Simultaneously, the challenges inherent in autism, such as sensory sensitivities and repetitive behaviors, can contribute to the development or worsening of insomnia.
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	sensory challenges ADHD Growth hormone deficiency small anterior pituitary
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	GI disorders causing severe constipation. Sleep disruption causing lack of focus and irritability. Sensory processing- leading to binge or overeating and health issues like obesity, diabetes, and fatty liver. Restricted eating leading to nutrient. Rejection sensitivity dysphoria which lead to explosive anger and mental health issues and affect social interactions. Echolalia which can severely limit communications and the ability to creat connections.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory issues and anger issues. Not being able to regulate emotions.
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Name	Steve
Demographic	Autistic individual
Response	That medical carers neglect or dismiss our symptoms, because we're autists ... and no-one likes autists, do they? Autists are got rid of ASAP, hence neglect.
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Name	Steven Lunseth
Demographic	Autistic individual
Response	All in all my biggest challenge is sleep and sleep is my worst enemy. For all my life sleep has been a major struggle and has directly effect every facet of my life negatively.
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response	Working is very difficult. Noise and sensory issues and sound processing, overwhelm and GI issues causing me to find coverage or leave clients to use the restroom. I also have POTS which sometimes makes me lightheaded, dizzy and leaves me feeling like I will pass out. Driving is also difficult with sensory overload and processing. It's almost impossible or at least extremely unsettling to drive at night. Sleep. I sleep with earplugs and a eye mask. I need brown noise going in the background to drown out any sounds I can hyperfocus on. Relationships. Unless we have a long history because of being family or childhood, I can't ,maintain friendships and sometimes feel very lonely despite not wanting to socialize.
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances make it difficult to keep a schedule that can support education, employment, etc. Having more than one autistic person in the household can exacerbate sleep problems, because household members will keep each other awake. Pain from physical conditions can also disrupt sleep. Lack of sleep can worsen autistic challenges.
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Name	Susan
Demographic	Autistic individual
Response	I've suffer from gastrointestinal issues that have sent me to the ER more than once. I have had sleep difficulties fir most of my adult life. The stresses of growing up undiagnosed in the 79s and 80s and being bullied have ked me to develop fibromyalgia. The comorbid conditions along with anxiety and periodic depression have led me to be underemployed. I live my job the the stress of trying to make ends meet, paying more than 1/2 my taxes home pay on rent, the stress if working in the care during the pandemic and dealing with long haul covid issues have probably shortened my 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	Co-occuring mental health conditions (depression, anxiety, anger management) are common and yet not acknowledged by many agencies serving individuals with primary diagnosis of disabled or cognitively impaired. Individuals with autism can range on the intelligence scale from gifted to average to below average to showing intellectual deficits. Support services must acknowledge the importance of "dual" diagnosis and services that address mental health and quality of life regardless of assessed intellectual skills. Too often services are siloed as for developmental disabilities or for mental health-- these must be merged or at least coordinated to accomodate the "whole individual and address range of needs. Specifically my son has been turned away from DD services and community supports for individuals with DD because of mental health concerns and has been turned away from mental health supports because of perceived cognitive impairments--this is a no win situation. INdividuals with autism can have complex needs across multiple domains--all should be addressed and not discounted as the responsibility of a different agency or specialty.
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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 and sensory issues
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	Sleep disturbances, aggression, danger to self and to others, elopement, impulsivity, chronic pain.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response	My son is challenged by sleep disturbances, gastrointestinal, and epilepsy co-occurring conditions. He is non-verbal, which means we have to rely on our instincts when it comes to how he is feeling. If he has not had good sleep or feels off at all it affects his entire day. Which means he does not get anything out of his therapy or school for that day. If he doesn’t sleep, I as his caregiver doesn’t get and it means we both have a hard day.
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autoimmune problems, gut health problems,neurological problems.
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Name	T. Gittleman
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Tanina Cadwell, Unaffiliated
Demographic	Autistic individual
Response	I was born with a congenital diaphragmatic hernia (CDH) which came with a number of co-abnormalities (a likely origin of where my autism came from). My most severe physical challenges can be boiled down to autistic burnout, leading to fibromyalgia, difficulty going to sleep / staying asleep, adrenal fatigue, maintaining personal hygiene, and gastro-intestinal troubles. I work myself too hard in order to maintain a semblance of a neurotypical personae. As a result I completely exhaust my body and manifest a slew of physical and mental issues, many of which are difficult to resolve in the small amount of time I have available to recuperate. I have much more to put here, but the character limit 1500 is incorrect. I had a long passage under the limit, and it refused to accept it.
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Name	Tara
Demographic	Autistic individual
Response	For myself sensory processing can lead to extreme headaches,dizziness,nausea so environments that are loud and/or have strong smells and bright lights can trigger a very exhausting anxiety attack. It is currently making my job search very difficult.
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	The challenges associated with autism and my co-occurring conditions (Marfan Syndrome, GI issues, sleep disturbances, diabetes, and high blood pressure) are synonymous with my behavioral challenges. For example, lack of sleep, high glucose levels, high blood pressure, and or GI issues can add to my irritability and make it more difficult for me to function in an overstimulating environment. Marfan Syndrome also contributes to my challenges in that my physical well being is compromised due to the complications associated with Marfans and that autism is now being identified as a co-occurring diagnosis along with other connective tissue disorders including but not limited to Marfan Syndrome.
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Name	Tempest
Demographic	Autistic individual
Response	Some Autistic people are hyposensitive to stimuli and struggle with interoception which can make identifying issues and symptoms difficult. Personally, I tend to be more hypersensitive and am almost always over-aware of any discomfort in my body which can make managing symptoms difficult as I don't tend to get much relief, especially with my sleep disturbances. I struggle with insomnia, sleep-paralysis, and nightmares that regularly affect the quality of my sleep most nights, which makes managing sensory overload more difficult. My GI tract is also sensitive and nausea, constipation, and diarrhea are common issues that affect my life daily. I also have POTs syndrome which contributes to my sensory issues (temperature dysregulation, "air hunger" aka feeling like I can't get enough oxygen, racing heart rate, etc) and exacerbates my GI issues.
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	The most significant challenges caused by co-occuring physical health condition is blurring of the lines between causes of each symptom and gaslighting of the medical community.
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Name	TG
Demographic	Autistic individual; Family member of an autistic individual
Response	Delayed sleep phase syndrome Postural orthostatic tachycardia syndrome Due to these I not only function on a much later schedule than others, i also have at times extreme fatigue. This makes life very difficult and the judgement from others is debilitating because they think I look fine and should be able to do everything they can do.
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Name	Thomas
Demographic	Autistic individual
Response	It is very hard to plan a day. I get anxious about having to run to the bathroom or some stomach pains. It is hard to plan for that as my body can be unpredictable so surprise plans give me anxiety. Also my sensory issues can make going new places hard or overwhelming. High Support needs so it is often hidden from others. I
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of understanding and lived experience information guiding practitioners/providers and immense stigma around autistic experience with co-occurrence of other neurodivergencies/conditions.
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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	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
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Name	Tova
Demographic	Family member of an autistic individual
Response	For my kid, PDA, Sensory issues of putting things in mouth and fidgeting roughly to break or tear apart most items picked up, and picky eating to an extreme.
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response	Sleep disturbances/insomnia is one of our more pressing issues with our 26 yr son with autism. This past weekend he decided he wanted to go swimming at 11:30 pm in our community pool. My husband and I had both gone to bed but I was able to hear the door chimes after he left the house. Although our son is "water safe" he is unable to differentiate when the water is too cold or too hot. He also makes loud stimming noises and plays his videos somewhat loudly. We have had neighbors complain due to the noise and the late hour. If we were not with him, he would be unable to answer any questions, handle an angry neighbor, respond to police or heaven forbid if he fell, hit his head or was hurt in any way - he does not have the communication skills to come tell us. His inability to sleep "normal" hours causes us undue stress related to his safety and requires us to be "on call/awake/responsive" 24 hrs a day. Despite our efforts to utilize as many safety net features as possible (door chimes/alarms on every door, Ring cameras, endless social stories and reminders to not leave the house without mom or dad, our son continues to have sporadic episodes .
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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	Co-occurring epilepsy is a major issue in autism community and nearly always represents a worse course of the autism, including risk of premature mortality.
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response	Severe, chronic GI issues Severe Anxiety Emotional outbursts, meltdowns rigid thinking Chronic ENT issues
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The fact that co-occuring physical conditions are dynamic, i.e., they change over time and space, and can be more/less debilitating depending on the situation. It is complex and difficult (impossible) to predict.
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Name	Ty Shields
Demographic	Family member of an autistic individual
Response	My autistic daughter gets gastrointestinal issues frequently. We have to make sure her fiber level doesn't drop below certain levels or she could have physical discomfort which leads to emotional dysregulation, which leads to getting in trouble in school. If we had more research (preferably including input from autistic people), we could solve so many problems.
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Name	Val
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep issues - not being able to get to sleep or sleeping too much. GI issues - specifically from dietary issues.
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Name	Val Luther
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The lack of understanding and recognition of Pathological Demand Avoidance in the US has negatively impacted how my son is treated by health care professionals and in school.
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Name	Valerie Beckwith
Demographic	Autistic individual
Response	Balance and coordination issues, insomnia, sensory overload in public spaces (aggressively brightly-colored advertisements, harsh lighting, lack of personal space, too many smells etc)
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	Sleep disorders. Learning disabilities. Eating improperly. Lack of drive to want to learn. Not being seen in the classroom my child is high functioning and gets treated like a burdon and like they are in the way in all 3 public schools they have attended so far. Staff like to act my child is just constantly overreacting. Educators need to be better trained. The attendance policies are counter productive to our specific needs.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Sensory processing issues are something that I see troubling children and adults. And are not receiving enough support.
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response
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Name	Vee Crowe
Demographic	Autistic individual
Response	The most significant challenges would be everyday life. I can't be independent, I can't work as I'm in constant pain and have very limited energy(this effects me physically), I can't sleep as much as I need due to insomnia and when I finally can sleep, I can't do anything when I do wake from an appropriate amount of sleep because everything important(ie postal services, dental services, hospitals, etc) closes at 4/5/6pm, I have a very limited amount of food I can eat due to sensory issues. Eating and talking and socializing can put a strain on my body, put me in more pain than I already was in. A single bad sensory experience could ruin my entire day and make it so I can't do anything, especially if it causes a migraine, for the whole day.
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	Anxiety and how it can affect an individual that is neurodiverse . Both of my children developed debilitating OCD that required hospitalization. I think parents need to be educated about the affects of untreated Anxiety . More mental health providers are needed . It took me 3 years to find an ERP therapist . We had to leave the state for treatment for my son.
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response	Sensory challenges and demand avoidance- my son has PDA profile and hasn’t attended school since 2021.
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory challenges which impact food acceptance, hygiene, getting dressed, specific activities, i.e. being outdoors, being wet, enjoying music or activities with loud sounds.
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Name	Vienna
Demographic	Family member of an autistic individual
Response	Constipation, sensory and motor challenges, hyperactivity and learning disability
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	My son does not sleep through the night and never has. He struggles to fall asleep and even with supplements and medications to help, he is still unable to sleep independently.
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Name	Viktoriia
Demographic	Autistic individual
Response	I dont know a lot of autistic people outside of my family. Of the things, mentioned above, I do have insomnia from time to time, and symptoms, similar to irritated bowel syndrome, I think, it is related to me stressing out all the time. Also I am pretty clumsy and often get injuries like burning my skin or sprained joins, bruises. Also I have a hear loss.
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Name	Virginia Fox
Demographic	Autistic individual
Response
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response	Sleep disorders
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Co-occurring conditions are often more impairing than the Autistic characteristics. For instance, most Autistic people also have ADHD and that interferes with Autistic goals as much as it interferes with neurotypical goals. Motor coordination problems cam impact speech, language and the perceptions of others, inviting rejection and negative impressions before people even get to know the Autistic individual. This happens in very important environment in the Autistic person's life: family, school, work, recreation, and of course social. Low IQ is not a part of autism, but when it is a co-occurring condition it makes life much more difficult.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response	1.Lack of awareness and research in to hypermobility conditions in Autistic women and people assigned female at birth. 2. Healthcare professionals not being educated on helping Autistic clients and how the spectrum is multifaceted and dynamic. Including not being equipped for AAC, and that speech does not mean communication.
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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	The focus on the co-occurring condition apart from the neurodivergence is causing myself, my peers, and my clients a lot of issues. Specialized medical professionals do not have the training and competency on autism in order to best understand the context of the co-occurring condition, let alone the impacts of the specific differential biological function related to neurodivergence (which affects both the way that medications/treatments work/don't work on ND individuals and also the way that the co-occurring condition appears for ND people as compared to neurotypical folks). This is especially problematic for gender/sexual minorities, women, people of color, and folks whose autism looks atypical (for example, those with a pathological demand avoidance profile).
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Name	Whitney Voltz
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The most significant challenges caused by co-occurring health conditions in autistics include the limited ability to engage in meaningful, paid work and the ensuing stressors of material and financial instability.
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	ARFID is one of the most significant, particularly in individuals with PDA profile, as it may cause significant issues due to malnutrition. *Consistently* exercising in any capacity is also extremely difficult, which leads to many other health difficulties.
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Name	William Spell
Demographic	Autistic individual
Response	I am prone to gastrointestinal issues like acid reflux and irritable bowel syndrome as well as difficulty sleeping. I also sometimes get sensory overstimulation.
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response	Proprioception, gastrointestinal issues, allergies of all kinds, issues with sleep (insomnia or hypersomnia) symptomatic of a mental health issue.
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Difficulty articulating emotions translates to difficulty explaining what is wrong and/or why when sick or impaired.
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Name	Wylder, Autistic
Demographic	Autistic individual
Response	I have a lot of gastrointestinal problems, making it hard for me to function in public without knowing exactly where a bathroom is. I also have ehlers danlos which makes my joints very painful, preventing me from participating in many activities
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response	Co-occurring issues can be more debilitating than autism. Ibs and POTS can stop you from living normally before any autistic trait.
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response	Finding adequate profesional compassionate caring therapists, as well psychiatrists. I continue to see immense lack of training in this area and it is extremely upsetting. Myself trying to get my master because of this in healthcare management and policy.
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Name	Zachary Kopel
Demographic	Autistic individual
Response	Epilepsy
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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	Our response focuses on the impacts of residential care over ten years for our severely autistic and developmentally disabled child. We have observed the following co-occurring health conditions as a result of our child’s residential care: (1) health issues related to hygiene while in residential care, including a neglected MRSA infection and an ongoing e-coli contamination (EAEC). (2) sleep disturbance issues for which he is treated through off-label prescription of a blood-pressure medication. Environmental factors contributing to successful sleep management are more challenging to execute in institutional environments. Physical impacts: (1) medications were prescribed that were effective in reducing maladaptive behavior but which also exacerbated his tic disorder. The increased frequency and severity of violent head and neck tics has resulted in permanent musculoskeletal damage which has now been diagnosed as a source of chronic head and neck pain; (2) from time to time our son has needed to be physically restrained, which has generally been well executed by trained caregiving staff but which occasionally has resulted in significant injury. (3) neglected hygiene during the pandemic that led to chronic physical pain (e.g. ingrown toenails; chronic diaper rash; (4) significant motor challenges which require constant and significant attention by caregivers to monitor (e.g. fall risk).
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sleep disturbances associated with sleep apnea are an issue for me. However my need to sleep more hours than most is likely not only related to apnea. This is an issue that interferes with me being able to work all of my scheduled hours at my University research job. I have a very flexible schedule and am able to work from home or in my office but needing a nap for several hours many days of the week is difficult to manage with a full-time job. I have GERD that is managed but it does not cause any challenges. My sister and three of her six adult children have ASD. All are obese, none have been screened for diabetes. None have had regular physicals as adults, though they all have medical coverage.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has autism with a PDA (pathological demand avoidance) profile. While its not recognized in the DMS, there is a very signficant difference between "standard" autism and autism with a PDA profile. First of all, its hard to diagnose, especially since providers aren't aware of it. It often gets mistaken for ODD or DMDD which has recommendations that are the polar opposite of what a child with autism needs. I've found success using "low demand parenting". My son is highly intelligent, and high masking. However he struggles with emotional regulation due to the every day demands placed upon him. He can be explosive when people aren't expecting it. He also struggles greatly with sleep. He is medicated to help him relax at night and on top of that we have to use melatonin to help him sleep. If he does not sleep well, he is unable to function at school. I cannot send him to school when he does not sleep well. There are no social supports for these challenges and without education about PDA, no one understands. They just see a lazy, angry child and a parent who just needs to show him who is boss.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The co-occurring physical health conditions I would recommend focusing on are sleep problems, sensory regulation and processing, bullying, intersectional identities(e.g. race), and poverty. Yes, I consider poverty a physical health condition given it's a primary social determinant of health(SDOH). The challenges caused by sleep and sensory issues are the ones that, in my opinion, cause the most problems in interactions with neurotypical people. Sleep problems are a particularly nasty set because sleep problems go undiagnosed, have no physical manifestation like a rash, and have such a dramatic effect on mental and sensory processing. Similarly, the challenges caused by under or over stimulation are mentally taxing to attempt to balance, usually include factors completely outside of an individual's control, and are best handled through isolation, which causes other problems.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Physical health, autism, and mental health, it is ALL physical/medical health issues. All these conditions impact someone's physical health so no need for the false dicotomy just because our systems of care are siloed. The most challenging health/ medical conditions were a rare seizure disorder and early onset psychosis. The suicidality, depression, aggression, trauma, discrimination, have been more challenging then the autism which was also difficult.Mania and paranoia were the scariest and most life threatening. The state psychiatric hospital releases individuals manic and paranoid. We need to totally revamp how we deal with families and support networks. The Federal government MUST take a more active role in psychotic disorders and reclassify them as the neurological disorders they are. Individuals that have anosognosia are in grave danger and the Federal government needs to develop policies to protect these medically complex individuals and their families. These individuals deserve the same care as other individuals with life threatening medical needs. And early onset psychotic treatment programs should not exclude individuals with autism. Ohio State's early onset pyschosis program excludes individuals with autism. This is not acceptable. We need Federal policy on ADHD/executive functioning. It is a neurodevelopmental disability and can significantly impact someone's life. Please develop a Federal policy paper and train your UCEDDs and LEND programs.
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Name	Anonymous
Demographic	Autistic individual
Response	I have a connective disorder called hEDS, which is commonly co-morbid with other conditions. For years, I was misdiagnosed with Fibromyalgia, and my symptoms were dismissed as normal. Recently, I discovered that my lax connective tissue has caused visceroptosis, leading to chronic bacterial overgrowth and allergies requiring multiple bouts of emergency care. I also suffer from Mast Cell Activation Syndrome, which can trigger life-threatening reactions without true IgE allergies. Additionally, I experience adrenaline surges and high blood pressure when standing due to unspecified dysautonomia. I have undergone multiple surgeries for endometriosis and adenomyosis. Dyspraxia adds to my challenges, causing coordination difficulties and constant dropping of objects. Sadly, these conditions were not diagnosed until my late 30s, and I endured decades of pain due to medical ignorance and dismissive doctors. Living with severe sensory issues further complicates my daily experiences within my own body.
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Name	Anonymous
Demographic	Autistic individual
Response	sympathetic nervous system (stuck in fight/flight/freeze/fawn), gastrointestinal disorders, sleep disturbances (not able to sleep through the night), sensitive to chemicals in the air like laundry detergent sheets (coming out of homes), chemicals worn like perfumes, deodorants, chemicals in homes like cleaning products, plugins, etc., hEDS (connective tissue disorders), extreme fatigue, physical pain walking, standing, sitting and lying in bed due to hEDS, hives, headaches from environmental chemicals, muscles clenching, jaw clenching, throat issues, sensory challenges
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Name	Anonymous
Demographic	None Indicated
Response	• Determining what behavior manifestations are related to physical conditions or pain • Increased aggression towards self or others and how to ensure safety for all • Lack of communication system related to pain, discomfort, or medication side effects • Difficulty with transitions between home/school/work/other programs which can be challenging in initiating and behaviorally managing visits to health providers. • Disruptions in daily routines due to physical health issues • Ruling out medical concerns/conditions and separating from ASD signs and symptoms increasing the possibility of diagnostic & Intervention delays • Staff training and consistency • Lack of parent support and resources • Communication difficulties about sensory sensitivities that occur during medical procedures
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In addition to autism, my son has sleep disturbances, GI problems (acid reflux, frequent constipation, food sensitivities), sensory integration disorder, allergies (peanuts, eggs, soy), and asthma. He misses a lot of school due to these co-morbid conditions, especially GI issues and asthma (which prolongs his respiratory illnesses). Because he is nonverbal, he is unable to communicate effectively how he's feeling. This prolongs his discomfort and the resulting behaviors (like meltdowns and self-injury) until we figure out what's wrong and how to treat it.
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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	Getting diagnosed. It took two years for my niece. She was lucky enough to be diagnosed young enough to have support. Not only that, I as a grown adult, am trying to get assessed and the process is so costly and long, and I have absolutely no support. A diagnosis should not be considered a luxury and it should be so much more available than it currently is to be assessed. I’ve struggled my entire life possibly being neurodivergent in an atypical society, and now things are beginning to make sense that didn’t before. It is an injustice, how many people have gone undiagnosed just to have to figure it out alone.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Motor, sensory, and anxiety
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances Sensory issues Social emotional issues
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Gastrontestinal due to low.lotility, poor.diet due to sensory issues, sleep disturbances, attention issues, impulsively related to sensory.motor.needs (running away, not standing still)
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Name	Anonymous
Demographic	Autistic individual
Response	Most importantly is how we are treated by health care professionals. The second one finds out that I'm autistic, they immediately begin to treat me like an idiot who doesnt know anything. Second, we dont have the same scale of intolerance that neurotypical people use. I rated my meniscus tear as a 3/10 so i was dismissed, then i walked on it for 2 months until it required major surgery. Third, very rarely does a place accommodate people with multiple disabilities. If my wheelchair fits, it's too loud and bright. If it's a calming environment, the walls are too narrow or there are steps.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	becoming overstimulated and not being able to move on with the day can be a real issue. bright lights, loud noises, or other specific triggers can absolutely halt an autistic person's routine, which has the potential to heighten chances of a meltdown or shutdown. not getting enough sleep leads to easier overstimulation, overstimulation leads to less sleep, it feels like an endless cycle.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances, speech disorders, sensory and motor challenges, and multiple severe food allergies that could cause anaphylaxis cause challenges. All of these physical health issues greatly impact success with autism treatments and therapies. Many treatments and therapies only seem to work if physical challenges are not present.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I find that my sensory issues are the hardest part of day to day life. If I don't monitor my noise sensitivity, I could end up dissociating for an entire say and not really remember anything by the end of it. Similarly, my aversion to particular textures and tastes can make finding something to eat very difficult to do. As a result, I don't feel like I eat enough every day even though I want to be. My issues with sleep also do not help with all of this. Because I'm not getting enough deep sleep or restorative sleep, I often wake up with a lot of pain from muscles that never relax and tiredness.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Seizure disorder, food allergies, Pediatric Feeding Disorders, Failure to Thrive, lack of coordination, hypotonia, sensory processing disorders
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	One of the biggest challenges faced by people with Autism is that there is a misconception that this neurological developmental disorder is some sort of a mental or behavioral health problem. Like people with stokes, neurological damage and differences can be observed and have impacts on mental health (frustration, mobility issues, despair, etc.) but at its core, Autism is well recognized as a neurological disorder with developmental aspect that will not be resolved in talk therapy, group therapy, or with psychiatric medication. AN autism diagnosis must immediately be prompting a full medical work up for potential medical causes, genetically related causes and conditions, and proactive prevention of further physical complications. Endocrine, especially thyroid interactions as well as auto immune and immune deficiency concerns are critical elements, especially as sleep and communication disorders can be resolved in this axis, and are common among the autistic population. We have to look for these problems with the known statistical association to lessen their impact and resultant suffering and further damage.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Researcher
Response	sleep disturbances and sensory & motor challenges
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Sensory (integration) differences, sleep disturbances, AFRID, MCAS, POTS, Ehlers-Danlos
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders; environmental and food allergies
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders, specifically constipation, and obesity resulting from aversion to appropriate foods
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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. The physical result of his continual heightened anxiety during puberty included debilitating GI cramping and vomiting that, after many invasive medical tests, was determined to be Functional Abdominal Pain. He missed most of several years of school due to both discomfort and extreme anxiety. Unaware of the concept/diagnosis of PDA, we essentially stumbled into creating a low-demand household and schooling situations that over time has enabled him to physically feel well most of the time. My son also has co-occurring encopresis and nocturnal enuresis (bed wetting). He was in pull ups until age 6 and continued to have embarrassing pee accidents until about age 10. At age 19 he still pees the bed several times a week, and has all of his bowel movements in his underwear. We suspect his PDA presentation of autism underlies why he isn’t able to use the toilet. The shame of his encopresis has been immense and very impactful on his mental health and ability to try to fully function in society. He has been accepted to college, but has taken a gap year to try to figure out how to deal with these conditions in a dorm setting. He has not physically been able to make much progress and, due to the PDA anxiety and shame, is unable to access medical help (e.g. OT). These conditions cause huge amounts of laundry, which his PDA prevents him from being able to do. He requires extensive parental support.
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Name	Anonymous
Demographic	Autistic individual
Response	Personally I haven’t had any nor has my family that aren’t a result of increased sensitivities of negative influences (stress ulcers panic attacks etc) though there have been many of this nature when situations could understandably cause them. (Increased susceptibility to stress induced conditions). We do all suffer from difficulty with daily sleep routines demanding consistent times.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	in order of severity 1) Sleep disturbances = unavailable to appointments, school, social time, keeping other household members up and/or intermittent sleep 2.) Inability to live outside of bedroom if unregulated. 3.) Body cleanliness = skin issues, body odder, infections
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	a) communication between professional and care team b) as young person can read/write/talk (but may not fully understand) care team think she is deliberately naughty when having a meltdown.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety. Nutrition. Education. I am the parent of a 12 year old autistic boy with a PDA (pathological demand avoidance) presentation. My son has been "in burnout" for several months. During this time, he has not been able to access school; in fact, he has left the house only a few times. He struggles to eat, to get dressed, and to perform basic self-maintenance tasks like washing his hair and brushing his teeth. He has been able to do all of these things in the past, up until the burnout trajectory turned into a crisis and he became unable to do these basic things. He will now only eat a small number of foods and can only eat them in a very narrow set of conditions. We are concerned about nutrition. School has always been a source of anxiety for him, and he was misdiagnosed for years with performance anxiety and anxiety/ depression. He is a typical PDA child, in that he is extremely good at masking his autism and getting by-- we were not aware of his autism until he reached the burnout point, and so he has not ever had access to accommodations in his schooling up until this point. The most significant challenges are: eating. Accessing school. Managing anxiety in order to leave the house for basic things like doctors appointments. He has lost the ability to be in the same room as anyone besides immediate family, and even in those settings needs a lot of soothing and comfort.
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Name	Anonymous
Demographic	Autistic individual
Response	When it comes to sensory challenges, everything is too loud and too bright. Certain textures are painful to touch. For example, the pockets of my favorite jacket feels like I’m sticking my hands in razor blades, so I can’t use those pockets even though its not very practical. I don’t recognize when I’m hungry until I’m starving. I don’t recognize when I need to use the bathroom until I’m about to have an accident. I don't recognize when I am hurt or sick unless there is a serious problem, but even still I don’t get taken seriously by caregivers and medical professionals because I don’t express pain in a neurotypical way. The most significant challenges caused by epilepsy include seizure related injuries, confusion, headaches, and memory loss. Frequent appointments and EEGs are stressful. I stopped seeing my neurologist for many years because the stress of the appointments and EEGs became too overwhelming. We have our driver’s licenses taken away after we have a seizure. There is a risk of drowning during seizures in swimming pools, bodies of water, or even in the bathtub.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Connective tissue disorders, sleep disorders, anxiety disorders, pathological demand avoidance
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Learning challenges
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I have personally experienced gastrointestinal difficulties and sleep difficulties. I do not have any diagnoses for either of these issues. Possibly the problem is that I was not diagnosed with autism until I was almost 46 years old. It is also possible that it is not widely known that these conditions co-occur. Not having accurate diagnoses seems to have caused confusion and delay of treatment for me. I have no current resolution to my gastrointestinal or sleep difficulties.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Magnification and catastrophizing of physical issues. Physical symptoms overwhelm easily.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal disorders, sensory challenges, and autoimmune conditions make it difficult to function in uncontrolled environments.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Fatigue and low energy, especially chronic fatigue and post-exertional malaise from long COVID. Also attention and focus challenges in the workplace - many autistics work better from home (when the position allows)
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges caused by co-occurring physical health conditions in autistic people are many and may last or come and go such as tiredness, stomach aches, sensory and motor issues, stress, anxiety, being alone, ADHD symptoms, hearing problems, misunderstood, social and emotional problems, clumsy, lazy, snacking, Impulsive, not knowing what to say, social anxiety, not being diagnosed but knowing something is wrong as you age and you masked unaware to cope in the process you were drained. Reprimanded continually by anyone you came in contact with. Then shunned, mocked and ignored. It’s extremely important to diagnose young children with any learning differences they may have so they develop their best potential.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	GI issues and PDA stops the individuals capacity to deal with them
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Name	Anonymous
Demographic	Autistic individual
Response	I have Autism and suffer from gastrointestinal disorders, sleep disturbances, sensory and motor challenges, along with memory issues, severe developmental delays and a lack of understanding social situations around me and what is appropriate. I also have many severe allergies , mental health disorders and time blindness.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	When our child is overstimulated from the external environment (school, friendships, sounds) her physical body can no longer tolerate clothing, sounds, the ability to rest and sleep, eat. This causes great distress to her as she desperately wants to eat or go to sleep but her body want let her. She says that can't swallow her food. When it cones to bed, everything feels itchy and scratchy all her clothes her linen, she will end up crying herself to sleep on the floor. When her nervous system is so activated, there is no way she can brush her teeth. She will go for days without brushing. Brushing her hair can be very painful for her too. All of these sensory issues impact on her physically getting to school. At the moment she is not wearing shoes to school because her body is so overwhelmed with attending school. Lack of sleep, poor diet, poor hygiene impacts on her school and ability to develop friendships.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Doctors make inaccurate assessment due to patients’ non-typical reactions to pain or other discomfort, thus providing inappropriate treatment. Our son would have been sent home from the ER with a constipation diagnosis had his group home nurse not insisted on an x-ray which led to the discovery of a perforated duodenum requiring emergency surgery.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory challenges, gastrointestinal issues, social anxiety.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep disturbances
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Perhaps just the lack of knowledge of concurring disorders. I am also highly concerned about the inability to get my son assessed for EDS. We are on a two year waitlist. It’s crazy
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory challenges ie; mouthing objects such as shopping trolleys and reaching out to touch objects with a lack of sense of danger, for example touching a sharp holly leaf or drawn to a flame to reach out to
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances, insomnia, ADHD, GI issues
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	GI and sleep problems; sensory hypersensitivities
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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	Having these co-occuring conditions recognized, documented and known by professionals so that they can be screened for and addressed once you've been diagnosed Autistic. I have had to research them myself every time and educate the professionals I was working with for my own wellbeing. Some of the co-occuring conditions aren't even universally recognized (ie: PDA - Pathological Demand Avoidence) despite being very disabling in our current societal context.
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Name	Anonymous
Demographic	Autistic individual
Response	Sleep disorders. Because seeing a doctor for the chronic insomnia’s pricey, I just have to knock myself out with Benadryl sometimes. I know that’s not good for me, but I can’t lose too much sleep or it’ll affect job performance.
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Name	Anonymous
Demographic	Autistic individual
Response	gastrointestinal disorders and sleep disturbances
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	The listed co-occurring conditions, and many others, are more prevalent in the autistic population. Our responses are not about any specific condition but rather the challenges that autistic people have with medical care. • The behavioral and communication challenges that accompany autism can lead to delays in diagnosis and to suboptimal management. • Autism and the needs of the autistic community are not taught in medical, dental, or nursing schools today. Nor are they taught in the allied health curricula. • We know from recent research we conducted that children with autism who are hospitalized are at risk throughout their hospital stay with: o Delay in diagnosis o Greater loss of function o Longer and more expensive hospital stay • Pediatric care is highly organized and coordinated, while adult care is siloed and fragmented. Unfortunately, this is the case for both primary care and for specialty care. • Studies have shown that autistic adults report suboptimal experiences with their healthcare providers – not getting enough time with providers, not having things explained in a way that they understand, etc. This leads to a poor experience and poor outcomes. • Autistic adults also have lower utilization of screening tests such as pap smears, mammograms, and colonoscopies. • People with autism have a significantly shorter life expectancy than their peers without autism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Co occuring physical conditions can be disabling by themselves, but when seen holistically/globally, physical and neurological differences exacerbate one another and each require specific supports.
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Name	Anonymous
Demographic	Autistic individual
Response	urine retention motor challenges (clumsiness) fibromyalgia common cold (chronic) sleep disturbances (hypersomnia)
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Name	Anonymous
Demographic	Autistic individual
Response	Every autistic person I know has suffered with insomnia or some other sleep disorder. This affects every aspect of daily life. The extreme exhaustion causes other problems to exacerbate. When you’re so tired all the time, sensory needs can be overwhelming and food is difficult to consume. I have been on medication for my digestion since I was 15 years old and still cannot tolerate the texture of many foods. It is a challenge to function as an adult, as I cannot participate in any kind of food-related activities (luncheons, work dinners, even parties) without having to plan around my needs. Scheduling regular exercise is inhibited by low energy levels and chronic pain whose origins cannot be found. Autism is a painful disorder at its core, with the world being bright and loud, foods having too many flavors and textures, and our bodies processing stimuli on a different level. It is a challenge to do anything that isn't sitting at home in a controlled environment.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autism with PDA creates challenges with sensory processing and motor development. The challenges created by these make it difficult for a child to understand their physical body, meet sensory threshold, and be able to perform appropriate age level motor skills.
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Name	Anonymous
Demographic	Autistic individual
Response	Losing a job due to running out of sick days or having too many "low performance" days, losing my insurance due to losing my job, not qualifying for disability and falling through the cracks of society. My condition being treated as an excuse, and not being provided the proper legal protection to avoid homelessness.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance (nervous system hair trigger) Sleep disturbances
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Migraines
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep is the foundation of health. The sleep disturbances I and my daughter experience are some of the most draining and difficult experiences of being autistic.
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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	Connective tissue disorders
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Name	Anonymous
Demographic	Autistic individual
Response	Migraines Gastrointestinal distress
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	GI issues, dyspraxia
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Name	Anonymous
Demographic	Autistic individual
Response	It is sometimes difficult to diagnose physical conditions co-occurring with autism because our somatic perceptions are different than allistic people's default description of a symptom, and we often have difficulty reporting length of symptom. This means we may receive the wrong treatment for our conditions. Sensory, motor, sleep, and gastrointestinal disorders all sap the energy of autistic people to cope with life, so learning the best ways to diagnose and treat these co-occurring conditions will improve our lives by a wide margin. I personally would like to see more research into fibromyalgia, EDS, and other chronic pain conditions, and how these present in autistic people.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	GI, sleep, sensory, motor coordination/planning
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	hygiene due to children not pooping, peeing
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Deafness makes communication very difficult.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Day to day function, such as taking care of basic needs, eating, using the bathroom, etc. Interactions in society, such as making friends, working.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	PDA, anxiety, depression, ADHD, trouble with self regulation, anger, frustration,
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	the lack of truly integrated care. Somatic health professionals who understand the connection between autism and chronic health concerns.
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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; Service provider, health provider, or educator
Response	The most significant challenges caused by co-occurring physical health conditions in autistic people I know and have worked with appear to be sleep disturbances, gastrointestinal issues, and sensory challenges.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenge is being heard and believed and then getting appropriate treatment
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Finding providers who understand the complex dynamics involved in managing care for an autistic person in distress. Accessing care by professionals who will not simply say "it's anxiety" and gaslight either the patient or their parents. Not enough providers understanding atypical presentations of autism (such as being chatty, social, etc.) and minimizing the impact that autism has on such patients. Co-occurring conditions make many autistic traits worse, so it's a double-whammy.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory - it can manifest in different ways- some children are more sensitive to lighting sources(overhead florescent bulbs used in certain stores or classrooms seem to be a biggie for my child), smells, tactile- this can include food textures which can present a whole issue of nutritional value of food intake.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	For my five year old, sleep avoidance and sleep disruption are the biggest co-occurring physical health conditions. My son also has a very limited list of foods he will tolerate. Sensory sensitivity is also a struggle for him, due to his pathological demand avoidance.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I'm the parent of a young person who did not present as or similar enough to the commonly known traits of autism. To many they appear as regular, however he has some form of autism with PDA being the main component that caused so many issues but professionals could not (and maybe would not) seewhat I saw. The parenting skills required in this situation appears the opposite to what professionals want to see happening, ie low demand parenting is needed yet professionals see that as not productive, not using consequences, not controlling enough and not involved enough. However the parenting skills that professionals want to see create the very environment that causes more issues for a PDAer. Much more research is needed on PDA to ensure the protection of PDAers mental wellbeing.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory overload, especially sensitivity to scents and chemicals that cause neurological effects.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sensory processing challenges make it hard for my daughter to participate in school. Her classroom, like many elementary school classrooms, is loud and chaotic. She wears noise-cancelling headphones but they are not enough to help her process all of the input from noise, kids moving around, multiple people talking at once, fans, overwhelming visual input, and trying to hear her teacher in all of the chaos. She is very smart and the school work is easy for her, but the school environment is not.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We suspect gastrointestinal disorders but have never been diagnosed because the symptoms weren't severe enough. Sleep disturbances, yes, due to restless legs and leg jerks, occur nightly. while trying to fall asleep
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances Sensory sensitivities Food sensitivity Fluctuating energy levels
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory, sleep difficulties, interoception awareness and intense imagery movements.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Fibromyalgia, hyper mobility, sensory needs.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA, seizures, sleep disorder, feeding disorder, sensory issues, fine motor issues cause my 3 boys significant issues. PDA based on anxiety is a major issue with no funding or help and we desperately need help in the PDA community
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Name	Anonymous
Demographic	Autistic individual
Response	In my case it's insomnia, auditory processing disorder and suspected mild EDS.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Common concurring diagnoses like Hypermobility/EDS can have prevalence underestimated, and this makes it difficult to access diagnosis and treatment. Autistic people might be disbelieved about the impact on us because we don't present in typical ways doctors are expecting (when in pain for example it may not be obvious from our expression and behaviour). I also think our experiences can make it hard to tell how badly I'll we are, either because we are used to pushing through discomfort or due to poor interoception and this means delayed treatment and care. Co-occurinf physical conditions impact my ability to tolerate sensory stimuli and to communicate.
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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	Keeping up with expectations of society, keeping a fulltime job
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Sensory challenges. Outside environments like schools, workplaces, shopping, parks, are so loud and bright and overstimulating. My child needs to homeschool in part bc of the overwhelm caused by the school environment.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	For my son: gastro difficulties: chronic constipation, soiling, small bladder, enuresis. Plus sensory processing difficulties, interoception difficulties and manual dexterity problems. For my daughter: severe sleep disturbances, sensory and interoception difficulties.
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Name	Anonymous
Demographic	Autistic individual
Response	I have POTS, gastroparesis, and hEDS and for me, it’s very difficult getting the proper medical care when I cannot communicate to doctors in a way where they understand and want to help my physical health conditions. Allistic doctors have a hard time understanding what I mean by certain symptoms or taking their severity seriously when my pain tolerance is different than someone who’s allistic.
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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	Significant challenge for our child is being able to attend school.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory challenges, nervous system constantly in fight or flight mode, hypermobility, fibromyalgia, scoliosis
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	The common occurrence of Ehlers Danlos Syndrome in autistic people, which means many autistic people also have to deal with chronic pain and other medical symptoms. EDS has gastro symptoms, as on your question above. Often the medical profession is slow to recognise and diagnose EDS which means autistic people are gaslighted about their symptoms and need to advocate for themselves to get help and diagnosis.
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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	Lack of understanding of cumulative disabling effect of multiple co-occurring conditions. Difficulty obtaining diagnosis of co-occurring conditions. Inadequate general (public) knowledge of how cumulative effects can impact functioning.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Ability to access and engage with health services that do not accommodate different needs - eg where, when, noise, length of appointment - especially when these visits may involve touch and procedures. Symptoms of physical conditions causing more distress and harm through lack of interroception, increased anxiety and fear, avoidance of simple treatment options like pain relief, needing general anaesthesia more frequently
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Name	Anonymous
Demographic	Autistic individual
Response	Ehlers-Danlos Syndrome is a big one!!
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sleep disturbance (significantly delayed onset) has led to multiple health problems
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Name	Anonymous
Demographic	Autistic individual
Response	I have obstructive sleep apnea and must use a cpap machine every night. I am quite clumsy. I become overloaded visually and auditorily easily. These are my physical challenges.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Significant challenges include insomnia which might keep her up until 4am. Not sleeping well affects her ability to function and stay engaged in her day to day tasks. Gastrointestinal issues have landed her in the ER recently which is a challenge due to not having health insurance or Medicaid.
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Name	Anonymous
Demographic	Autistic individual
Response	Gastrointestinal issues are a very common problem among autistic people. Learning more about why this is common co-occurance would improve the lives of autistic people as me may be able to have better treatment for it. It is hard to focus on anything when your tummy is upset. EDS and other connective tissue disorders need to be addressed as well. I know many autistic people, myself included, who have issues with their joints and are constantly in pain.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	lack of sleep, pain, burnout, being misunderstood or not believed, fighting with doctors because I don't present typically.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I have seen all of the above in my grandchild and a serious version of epilepsy and PTSD. Research in epilepsy must be elevated in importance. It is a great challenge to the patient and those who are caretakers for young and old.
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Name	Anonymous
Demographic	Autistic individual
Response	-Hypermobility isses (Hybermobile Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder) -Sleep Disturbances -PMDD and other issues with menstruating
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The way co-occurring physical conditions stack on each other make day to day living challenging. Maybe they didn't get great sleep because they were up with gastro issues. Now, they are going in to the next day at a disadvantage, and some of the tools that may work for managing say, sensory challenges, are no longer working due to lack of sleep and physical distress.
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Name	Anonymous
Demographic	Autistic individual
Response	This question is hard to answer because it speaks to the lack of research and understanding of how autism impacts the physical body across sexes. We're only just starting to figure out those differences and it's difficult as autistic individuals to know what about yourself is a co-occuring condition, or even a condition at all, due to low interception and masking. I can only speak from my own experience since the autism spectrum varies so greatly. That being said: sleep disturbances, connective tissue issues, sensory challenges, hormonal disruption, blood sugar regulation, digestive issues, PMDD.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Personally, gastrointestinal disorders and insomnia
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Name	Anonymous
Demographic	Autistic individual
Response
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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	Sensory challenges
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	i have ibs and it makes it difficult for me to socialize normally and participate in classes. sometimes i have to go home because of abdominal pain or excessive gas. i also have back pain (unsure of cause, have ruled out scoliosis and eds) and have to spend 90 mins daily doing physical therapy exercises at home, and i go to pt appointments 2x weekly. i was always an active person and exercised / did sports but my back hurts and it's difficult to go out and socialize when lots of standing and walking is involved. i have sensory issues and can't enjoy busy places like malls or museums as much as other people, and have to go home sooner. after my classes, i can't socialize with friends because i am too exhausted from regulating my attention and sensory input.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Each vaccination makes the problem worse. Unable to get the support needed from anyone makes life miserable.
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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	Sleeping poorly is the worst. If you can't get enough sleep everything else just falls to pieces. My partner and I spend most of our time trying to improve our sleep and sleep hygeine (we are both autsitic, and we both struggle with this).
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Name	Anonymous
Demographic	Autistic individual
Response	It's a lot harder for me to function and go to work, acting completely normal when I have to not only mask my autistic traits, but also mask all of the chronic pain I'm in from my connective tissue condition, chronic migraines, and gastrointestinal issues. It's also incredibly hard to not get in trouble at jobs for calling out sick so often, but with my chronic illnesses and me regularly sleeping 0-2 hours, there are times when I simply can't function at work due to chronic pain, chronic fatigue, and lack of sleep. My sensory sensitivities also make being out in public (work, errands, etc) difficult due to the pain of bright lights and loud noises.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Sensorimotor skills are foundational for development of other skills. A child won’t likely be speaking if they’re still trying to activate their propioception. Sensorimotor issues should be the highest priority of research in people with autism.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleeping issues can be so bad. Many caregivers of children and adults with profound autism are running on little to no sleep
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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; Researcher
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning to manage IBS has taken a long time and impacted my ability to work at times.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	anxiety, emotional dysregulation, sleep disturbances/circadian rhythm issues, collagen-related defects, Raynaud's syndrome, GI issues (constipation and diarrhea), allergies, altered pain perception
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Speaking only from my personal experience, I struggle with sensory and motor challenges significantly in my daily life. It's important to note that the experience of this varies significantly day to day. This has lead some healthcare providers and support services to conclude that I don't need help (if they see me on good days), or for people to decide I'm unfit to drive (if they see me on bad days). There is a significant lack of understanding across the board for care and services in this regard. My experience of autism and related conditions is not perfectly consistent. Just like if you've met one autistic person you've met one autistic person, If you've seen me one day, you've seen me on one day.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory challenges had long plagued me. It makes things like physical therapy problematic and leads to less treatment due to Medicaid requiring six weeks of PT before you can get things like MRIs. I have good strength and movement and thus, the main thing they want to do is lay hands on me. Stuff like that have always causes me significant pain and isn't the least bit helpful. At this point, I'm waiting until the problem is bad enough I have to go to the ER. This is especially true as I have systemic CRPS. It's far too risky to engage with PT and is likely to lead to flare ups and possible hospitalization. Sleep disturbances is a huge issue. I rarely sleep without having to take Benadryl or related drugs. Prescription sleep aids tend to lead to black outs. I have trouble keeping weight on and have dealt with stomach issues for several years now. Thus far, doctors have largely ignored the problem even though I've lost over thirty pounds while eating like a horse and wasn't big to begin with. My only way of managing the problem thus far is to restrict what I eat. In fact, so much as buying small bell peppers from Mexico doesn't work for me. They use too many chemicals apparently. Canadian bell peppers aren't problematic.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	seizure disorders, motor dysregulation, compulsiveness
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Name	Anonymous
Demographic	Autistic individual
Response	Difficulty preparing, eating, and digesting food, sleep disturbances causing fatigue and difficulty dealing with day to day life, and when unaccommodated sensory issues can interfere with any type of functioning.
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Name	Anonymous
Demographic	Autistic individual
Response	Insomnia, gastrointestinal issues, sensory issues
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep disturbances, sensory challenges.
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Name	Anonymous
Demographic	Autistic individual
Response	Everything is so loud and stores are overwhelming. Being in a crowded area is absolutely miserable. Being in public in general is stressful and overwhelming. And i have to work a job in the general public. I am in pain quite often because of health problems I'm pretty sure are related to my autism but I have no way of knowing that because I am way to exhausted to schedule a doctors appointment unless my organs are falling out of my body.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep apnea, gastrointestinal, sensory issues, high anxiety, verbal and physical stimming
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Name	Anonymous
Demographic	Autistic individual
Response	I can't speak for all autistic people, but I have noticed that Sleep apnea along with sensory overload caused by multiple sounds at once have been a pretty common problem (myself included). This can effect not only ones energy and performance at work, but it can effect ones ability to listen to someone talking to you but can lead to lashing out at people or objects out of frustration (especially when they your trying to focus on a task). This can also effect decision making such as when it's the right time too make a turn onto a highway when there are more then two lanes with a large convoy of cars moving in the same direction and you have to check for gaps and figure out how fast the next line of cars is coming up on you while also holding up traffic behind you. Your speech is also effected we're you trying to talk to someone and you either can't find the words or you don't think your sentence through it and it comes out jumbled adding to confusion or wrong and it offends someone.
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Name	Anonymous
Demographic	Autistic individual
Response	Access to proper healthcare and dismissive doctors. I have co-occurring mast cell issues, primary immunodeficiency, gastroparesis, possible ehlers-danlos, and possible POTS. The challenge is that most of these are rare medical conditions with few doctors who are willing to diagnose them in order to treat them. Then you have doctors who try to remove you from proven treatments because “you’re just anxious.” No, I nearly died from sepsis which is why I am now on that treatment. Because my immune system is trash due to underlying genetics. Doctors who don’t get autism are also problematic. They don’t understand our communication styles are different. And that makes it harder to self-advocate. We need advocates. We also need single payer and can’t afford premiums when we are on plans that are not supposed to have premiums.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory challenges, sensitivity to gluten dairy,
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Personally and what I've observed in my family members (who would previously have been called high functioning), sensory overload leading to meltdowns and chronic gastrointestinal issues making everyday life/occupation difficult. Also, personally chronic fatigue and chronic lower back pain have caused me to lose jobs, and have severely limited my social life. Fatigue requires me to stay home and rest a lot. Sensory overload and pain make it hard for me to be in the car for long. Being thus homebound/socially isolated/at times underemployed have also contributed to depression.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	In order? Sleep disturbances, epilepsy, sensory issues, gastrointestinal issues, motor challenges
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	POTs and EDs/hypermobility can cause significant limitations in accessibility of events and spaces as well as need for more significant work accommodations
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Pharmacologic treatment associated weight gain and metabolic toxicity
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Often misunderstanding emotional clues.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has significant GI issues such as gastroparesis and colonic inertia. Both result in frequent nausea and pain. His weight has always been low and he has a diagnosis of malnutrition and anorexia. He has impaired gross and fine motor skills and received years of physical, occupational and speech therapy.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	For me it's the GI issues. They have been a plague for the last 40 years.
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Name	Anonymous
Demographic	Autistic individual
Response	In social situations or during extended activities like exams, I experience a 20 to 30-second tightening and occasional shaking in my hands, shoulders, and chest, making it difficult for me to write. While sensory issues aren't a significant challenge, background noises and loud voices bother me.My relationship with food is peculiar – I have a strong attachment to specific foods, consuming them daily. If these preferred foods aren't accessible, I find it difficult to eat, even when hungry, leading to challenges for my digestive system.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal disorders, sleep disturbances, sensory processing and overwhelm challenges. So many of us have generalized anxiety disorder. Per information on the autism.org website, "Autistic youth are three to four times more likely than non-autistic youth to experience sexual victimization, and between 40% and 50% of autistic adults report experiences of sexual abuse during childhood." The fallout from childhood sexual abuse causes physical conditions, and this is certainly co-existing, based on the above quote. In California, it is challenging to impossible to receive autism services if you have a childhood sexual abuse history, because they say the symptoms are so similar that they can't be sure they are only covering the autism. This is not okay.
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Name	Anonymous
Demographic	Autistic individual
Response	Gastrointestinal disorders, sleep issues, sensory issues, mental health issues
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Name	Anonymous
Demographic	Autistic individual
Response	I am an individual who is autistic who has obstructive sleep apnea. One of the most significant challenges that this causes is that those with Autism Spectrum Disorder are often susceptible to having a chronic mental health condition. It is not a causation, as ASD is a neurodevelopment disorder, but it very often happens. Sleep disturbances can absolutely aggravate symptoms of autism as well as co-occurring mental health conditions (whether chronic or not). The reverse can be true that it can create problems, but speaking from experience of having pre-existing conditions, having a chronic sleep disturbance, like sleep apnea, can aggravate the negative traits I experience.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep related issues, gastrointestinal issues, immune system issues, issues with feet/gait
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Being misunderstood or written off by providers
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory challenges with eating foods in the mouth and causing dental damage. Visiting the dentist is a challenge due to the sensory inputs and dentist visits are avoided.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	They aren't recognized by medical professionals, and they have no idea how to handle it. Everything is siloed so no one talks to each other to understand what the complexities are. There needs to be cohesion in the medical field, as well as not having universal healthcare means many Autistic people won't get the care they need. Autistic people are mostly unemployed and relying on them to be able to pay for care, when they are excluded from society intentionally, means they won't get the care they need for co-occurring conditions. There are also many autistic people that aren't recognized as autistic, but have all the co-occurring conditions, and instead of saying maybe you are autistic because you have co-occurring conditions that might need to be evaluated, they just slap inappropriate labels on you like anxiety or depression. There needs to be a coordinated effort to remove the silos from healthcare and make it universal so that not only Autistic people, but all marginalized people can get the care they need. This includes instating universal masking in all healthcare facilities because we know Autistic people are more at risk and public health needs to actually do their jobs and prevent the spread of infectious diseases.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Tics, stomach issues, poor proprioception
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Name	Anonymous
Demographic	Other
Response	Sleep disturbances. Sensory challenges. Emotional and mental health conditions. All of these are triggered based on broader population expectations/definition. Without the need to conform to external standards, my sleep patterns would normalize in whatever way is normal for me whether I sleep in 4hr patches or only sleep post hyperfocus investment. I don't consider neurotypicals 'slow' because they don't process as quickly as I do or question their moral character because they seem to be able to lie or manipulate more easily. The more we expand our thinking to allow nuance and authencity the more accurately we'll be able to assess, treat / avoid unnecessary mental/physical/emotional issues. This question is focused on symptoms, not root causes. Missing the broader health opportunity.
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Name	Anonymous
Demographic	Autistic individual
Response	gastrointestinal issues, menstrual issues (pmdd, pcos, etc.), sensory differences (which needs accommodation and awareness and compassion)
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Name	Anonymous
Demographic	Autistic individual
Response	The understanding and notion that these conditions can affect each autistic person in individualistic ways, that sometimes autistic people may communicate these co-occurring conditions that may not necessarily occur in a neurotypical manner or that these conditions may not even manifest in the same way associated with ableist views and so may require more clarity or ways in which autistic people can connect with their needs and communicate them that is more accessible and accommodating.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	POTS/dysautonomia
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	In my work and personal experience, I notice a lot of sensory processing issues. There’s also a pretty significant link to Ehler-Danlos Syndrome in the autism population.
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Name	Anonymous
Demographic	Autistic individual
Response	Digestive conditions like GERD, sleep problems, migraines
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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	Constipation and sleep apnea are incredibly disruptive to daily life.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Delayed toileting is incredibly hard for young children and families. It inhibits kids' abilities to attend school and summer camps, and is very poorly understood by most care givers. Poor training means kids do not get evidence based supports and are often made to feel embarrassed or are excluded. Sleep challenges are also very hard with limited research on how to better help young children sleep
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Gastrointestinal difficulties. Picky eating leading to nutritional deficits.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep disturbances and fine motor challenges. My son is 16 and still has trouble using scissors. Fine motor challenges affect basic life skills such as being able to open a package of food, brush and floss his teeth, etc..
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory and motor difficulties
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenges I face physically are with gastrointestinal issues and sleep problems.
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Name	Anonymous
Demographic	Autistic individual
Response	Being systematically dismissed by medical doctors for chronic pain, specifically in my experience, pain related to Ehlers Danlos Syndrome. I began having symptoms almost a decade ago, and am now close to getting a diagnosis and treatment only because I did the research myself on chronic pain conditions that co-occur with autism.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Sleep disturbances
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Name	Anonymous
Demographic	Other
Response	Getting medical providers to understand that every single medical condition isn’t always caused by autism.
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Name	Anonymous
Demographic	Autistic individual
Response	It varies. All of us autistics are different.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Joint pain (EDS), dizziness/fainting (POTS), anaphylaxis (MCAS)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	sensory and motor challenges
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders, sleep disturbances, communication issues, sensory challenges
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	To me as an early interventionist, the biggest challenge faced by individuals with autism who also have co-occurring conditions is that client education on those conditions is frequently nonexistent. Client education on autism itself is infrequent as well, but if a second (or third) condition is present, I myself find it difficult to recall a time when I observed someone explain that condition to the client. Unexpected physical/mental sensations are frightening enough for neurotypical individuals. Providers and care team members need to take the time to explain all components of a neurodiverse client's medical history to that client, not just the client's guardian or caregiver. And after the client reports an understanding of their secondary condition (or their understanding is assessed), the client can be taught how to manage it and advocate for themselves.
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Name	Anonymous
Demographic	Representative of advocacy organization
Response	sleep, motor challenges, eating, learning abilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory and motor challenges
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Diagnosis. Describing symptoms is difficult for many autistic patients so physicians need training on asking more specific questions and giving examples to help accurately assess a patient
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	One of the biggest challenges we face as parents is trying to identify what condition is causing a challenge so we know how to address it. For example, are we having difficulty potty training because it's our daughters personality (stubborn), is it related to her Autism (intellectually/developmentally and/or sensory), and/or is it related to her GI disorders?
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Continued lack of integrative treatment knowledge and approach between disciplines complicates care, confuses the individual and parents, and misses critical opportunities to address foundational health elements for quality of life.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	There is significant indication that autistic individuals not only experience higher than normal instances of co-occurring physical health conditions, but that these instances contribute to an overall deleterious occurrence of allostatic load, an outcome that is now demonstrated to, itself, be a cause of continued co-occurring physical health conditions: https://www.nature.com/articles/1395453 Both my husband and myself suffer and struggle with this as a direct result of autistic burnout, caused by significant and harmful neuronormative bias in literally every aspect of our daily interactions with the culture and systems of our nation, but in particular, the workplace. Anxiety, depression, gastrointestinal disorders, sleep disturbances, high blood pressure, sensory and motor challenges are but the tip of this iceberg. I suffer with fibrillation, fibromyalgia. skin, joint, and soft tissue algias, and degenerative disc disease. Serious consideration needs to be given to allostatic load and its effects on autistic co-morbidities.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Sleep disturbances, co-occurrence of hypermobility disorders, autoimmune disorders, sensory sensitivities including food aversions (to food texture, etc.) which cause highly restrictive diets, GI problems, fatigue
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Name	Anonymous
Demographic	Autistic individual
Response	Auto-immune, skin, and soft tissue issues (e.g., fibro, mcas, and polyalgias)
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Feeding issues. Fine motor issues.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My adult son has severe anxiety and multiple physical health conditions including Autism. Because he has IDD, his comprehension is poor, and he fails to understand what is happening. He has can suffer from insomnia, sleeplessness, sensory overload, and other issues. Then, he can rage, which results in potential harm to his caregivers, his physical surroundings, and his own well-being.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	lack of resources in school to help those with autism and co-occurring health conditions, lack of mental health professionals trained to help those with coping skills, lack of specialists who understand the multiple medical conditions in those with autism (more NPs and Drs need training on those with autism and developmental disabilities)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep Issues, Developmental Coordination Disorder, Expressive/Receptive Language Disorder
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our daughter has gastrointestinal, sleep and sensory problems. These affect her daily life.
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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	Family member of an autistic individual
Response	Those with autism, particularly those with severe autism often struggle with multiple co-occuring physical health conditions that makes them struggle more. My son is deaf and epileptic along with being non-verbal, has limited communication and often destructive behaviors that result from an inability to be understood and frustration at not being able to communicate his needs. His medications for seizures also cause constipation which can greatly affect his well being.
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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; Service provider, health provider, or educator
Response	in both my professional work and experience in being a stepparent to an individual with moderate ID and Autism, I think gastrointestinal disorders (constipation primarily) and sleep disturbances are the most significant challenges health conditions impacting autistic people. In addition, I think sensory challenges related to ASD, make it more challenging for individuals to function in todays society.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Sensory processing
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Ehlers-Danlos Syndrome, POTS, autoimmune, chronic pain and migraines.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep issues
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory processing(loud noises, bright lights, food textures). A lot of autistic individuals, including my high supports needs child have a very limited diet due to sensory overload with certain food tastes or textures. This can also lead to teeth issues due to the sensory issues with teeth brushing as well. Executive function problems (cooking, making phone calls, grocery shopping, paying bills, and keeping up with hygiene). Many autistics have trouble with sleeping, falling asleep and staying asleep. Gastrointestinal issues such as constipation is an issue due to limited foods eaten, ARFRID being an eating disorder that contributes to this. Many autistics have fine motor skill issues (struggling with food utensils, drinking from a regular cup, holding a pencil properly). Many autoimmune diseases tend to also be comorbid such as ehlers danlos (connective tissue disorder), epilepsy, thyroid disorders, Crohn’s disease, IBS. Other comorbid issues common include ADHD, anxiety and depression. Mental illnesses being a major factor in the high suicide rates for lower support needs autistics.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	sleep disorders, sensory processing issues, EDS/HDS
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	SAFETY HEALTH AND WELLBEING are severely compromised having a diagnosis of SEVERE/PROFOUND autism. You are ignoring this population and this needs to change. "Neurodiverse" folks needs support too but you need to see that given their social limitations, they are "hijacking" the important conversations. No-verbal/speaking people have been ignored for too long. Seizures, self injury, severe panic, OCD, GAD, IED, DENTAL PAIN that goes ignored, and PANS/PANDAS ignored testing is causing. This is not a life - these co-occuring conditions are a death sentence. No programming, no residential, no agencies will take severely affected people with ASD IN ANY STATE. Familes are broken, taken out of the workforce, injuries, use of 911, psych hospitals that cannot "handle" ASD, ER rooms putting people in restraints, excessive use of antipsychotics with no efficacy- it has ruined our and many families, slowly or quickly killing us all with our own medical conditions brought on by our own PTSD and injuries cause by our wonderful loved ones.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Working in a pediatric dental office, sensory challenges are the number one issue I see with this population. From a crowded waiting room, overbooked and long waiting times in waiting room, loud instruments, bright rooms, poor pre screenings, etc..
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My daughter has profound autism (Level 3) and doesn't understand medical procedures. She has co-occurring medical problems (e.g., heart conditions, epilepsy, sensory disorders, Duane Syndrome) and when we need to do medical procedures, she doesn't consent or allow them to be completed. She either needs to be sedated or restrained, which is terrible. However, we cannot have work done on her teeth, blood draws, or EKGs completed due to her not understanding why she needs to be still. I am lucky that she takes medication and allows shots to be given. I know others are not so lucky.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Being different is a challenge in its self but I do believe that this is one of the most significant co-occurring challenges with autism. Being recognized for having a difference from another individual doesn’t feel great, I feel like people are always starring at me when I’m stimming. My behavior isn’t seen as normal because everyone else is being recognized as normal behavior.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Sleep issues and behavioral including anger and physical responses to that anger
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Three months of 24/7 colic at age one and a half months. No naps after one year old. Increase appetite, ate adult food at 1-1/2 yo--half again as much as I did. Dare-devil thrill-seeking during childhood. As a toddler, he'd sit on his parent's shoulder and suddenly dive forward, causing bystanders to scream. We, as his parents, quickly learned to hold his ankles while he was on our shoulders. Maybe related: he ate poisonous things like turpentine or other things he knew were dangerous. I once caught him with a twig in his mouth. I told him to remove it NOW. He quickly swallowed it instead. I had long ago memorized the phone number of Poison Control. A quick phone call confirmed that bush would cause paralysis, but, "It tastes so awful no one would swallow it."
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Just naming one is not possible. But if only one is allowed I would say intellectual disabilities. I feel that this is not studied enough. Having a severally ASD child with intellectual disabilities that is nonverbal. Also, saying one challenge is not fair. My child also struggles with ADD/ADHD sensory issues, developmental delays, sleep issues, eating disorder, GI problems, requires OT for motor challenges. And again this is not all of his "documented medical" conditions. My main concern is that the committee does not focus on severally ASD children or adults with intellectual disabilites or severe ASD those who are nonverbal. I feel that we are forgotten.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	It is unclear that all autistic people have the same physical experience of these conditions (I.e., due to differences in interception or sensitivity to physical sensation), therefore treatment may be delayed / conditions exacerbated to more serious than otherwise Sometimes pain/discomfort cannot be adequately communicated, therefore this may contribute to aggressive or harmful behaviors directed to self or others. Extended physical difficulties without appropriate treatment will reduce mental health and quality of life.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	3. Sleep disorders cause severe sleep deprivation to caregivers and worsen emotional lability and ADHD sxs of ASD 4. OCD behaviors and verbal & motor tics cause delays and distress, and hinder transition in activities, distract others in classes or lectures 1. GI-abdominal pain, vomiting, constipation, overeating, food aversions, eating non-food substances, preoccupation with food: difficulty with eating out, going to camp or overnight events d/t sxs, behavioral issues with food-seeking in public places, church, school; emotional responses to not having food he is willing to eat. 2. Sensory-loud noise can cause distress and meltdowns, impair ability to learn and communicate, attend to the situation; vomiting at meals if presented with disliked foods; difficulty with clothing, shopping, uniforms, bathing, haircuts and nail trimming
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Sensory challenges and the lack of funding for OT. OT should be funded at a higher rate than ABA. OT has a neuro developmental background with an emphasis on generalization of skills to a variety of occupations and settings. ABA does not have this physical and mental health training.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son [PII redacted] is 8 years old and is autistic and has combined ADHD, central auditory processing disorder and is impacted by sensory and motor challenges. [PII redacted] is a sensory seeker and needs constant input to allow his body and brain to settle down and focus.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	GI disorders (gastroparesis, reflux) Sleep disturbances Epilepsy Sensory processing disorder Fine and gross motor issues
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory processing issues, anxiety and co-occurring mental health issues
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory overload, difficulty processing information and emotions, anxiety, forgetfulness, disorganization, panic attacks, difficulty coping with change, communication difficulties, being misunderstood, physical burnout from trying to navigate a neurotypical society that’s not built for me.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has had severe GERD & constipation his whole life. He's unable to fall asleep without medication & has severe Sensory Processing Disorder which limits not only his diet but his ability to go out into the community
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	One of the most significant challenges is that many health care providers will not treat the physical condition if it is a co-morbidity with autism. We have flat-out been denied care because of the autism diagnosis even if the diagnosis for the other condition is within the specialist's field of training. They feel as if they are not trained or capable of providing appropriate treatment --- there is a general misunderstanding that autism requires some specialized training on how to accommodate the condition or misunderstandings about how co-morbidities interact.
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Name	Anonymous
Demographic	Autistic individual
Response	Gastrointestinal disorders and sleep disturbances tend to greatly affect an autistic individual’s ability to function daily and can be intertwined with one another (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8608248/). For instance, if someone is a working autistic adult and has sleep disturbances, because they did not reach a full REM cycle, they will have a harder time to perform well even with a full 8 hours of sleep. They will most likely reach autistic burnout much faster than normal, which can impede their ability to successfully complete tasks. GI disorders affect an ASD person’s ability to comfortably work and live in any public environment. They have to be especially careful with what they eat, which is difficult for many autistic people with sensory food issues, and will increase their stress due to lack of access to more gender neutral public restrooms that provide more privacy for autistic people. Lack of sleep combined with GI issues can lead to them drinking more caffeine or unhealthy stimulants to keep them focused and awake, therefore causing more GI issues and consumption of unhealthy nutrition.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	As a provider my answer would be that sleep disturbances are the most common physical health challenges that impair children's functional skills which I see in children with autism. When children don't sleep, no one in the family sleeps. When humans do not sleep, they do not perform at their best behaviorally, emotionally, physically or academically. While most of the children with ASD who I see have sensory concerns, these are much less likely to impair their ability to function effectively in the world.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	securing supports for youth with mental health needs and Autism. such as PHP for youth 18-21, that have aged out of children's PHP, programs but not appropriate for adult PHPS, that do not specialize for I/DD teens.
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Name	Anonymous
Demographic	Other
Response	Many people with autism are adversely impacted by chemical fragrances/scents and experience a neurotoxic effect even at very low concentrations. The NIH has epidemiological publications showing that environmental chemical exposures play a larger role in causing autism than previously thought. Multiple Chemical Sensitivity, MCS. "MCS is a complex chronic and disabling condition, which involves multi-system symptoms triggered by both scented and unscented chemical products used in everyday life, including fragrances, cleaning products, cigarettes, pesticides, petrochemicals, laundry detergents, personal care products and building materials. MCS is closely linked to environmental health inequity. Ubiquitous exposures create barriers to access and inclusion, including health care, workplaces, and barrier-free, safe housing." ASEQ-EHAQ website There is truly a GREAT NEED for healthy housing for people with chemical sensitivities. Currently there is only one HUD house in California that is fragrance and pesticide free. People with MCS are often forced to leave their apartments and live in their car or outside in the woods to get away from neighbors who use toxic fragranced cleaning products, air fresheners/sprays, fragranced laundry products, scented burning candles/incense, etc...that come into their apartment through shared heating units, shared hallways, shared laundry facilities, as the only thing that seems to mitigate the neurotoxic effects is total avoidance.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory challenges Anxiety (muscle tension, fatigue) Burn out
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory overload happens often to me. This means I have to avoid places that are too loud, too crowded, or too bright. Sometimes riding in a car is difficult because I get vertigo from the movement and visual of things going by too fast. I also have gastrointestinal problems and ARFID, so I can't always eat even when I'm hungry or eat proper food.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	My entire family has some sort of physical disability on top of autism. I have ankylosing spondylitis, inflammatory bowel disease, hypermobility syndrome, MCAS, ME/CFS, dysautonomia, long covid. All of my kids are autistic with ADHD, PDA, chronic pain from hypermobility syndrome, and long covid-which affected various parts of their bodies including making their cholesterol go very high and inflamed any other autoimmune disorders present. My eldest child developed Hashimoto's, PNES, MCAS, severe depression, and POTS. My second developed MCAS, ME/CFS, dysautonomia, POTS, severe depression, and has a congenital tooth agenesis. My third developed puberty at age 9, has developed dysautonomia and sleep apnea on top of unresolved issues with a positive ANA with a speckled pattern and PFAPA. My youngest has "stork marks" and a simple over his tailbone, so I am going to request an MRI of the area soon. All of my kids can hardly do the activities that they'd like to do because of emotional or physical impairments. I can't work anymore and am a full time career because they're all in severe burnout. PDA is not recognized in American schools, and they were put in burnout by the lack of appropriate accommodations in school and bullying for being transgender or nonreligious. We homeschool now.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My sons are level 1 autistic and have different co-occurring physical health conditions. Both children have spatial awareness challenges and, for instance, might run into the path of a swing because they can't predict its trajectory. My older child has challenges with motor skills and physical strength. He is six, but has the physical strength of a child three years younger. He has been in physical and occupational therapy since he was 4 years old, and this is helping him develop more motor skills and strength. My younger son is three and has sensory sensitivities. He dislikes loud noises and dislikes certain textures. Both children do well when their challenges are communicated to and respected by adults. E.g., allowing them to take a break if an activity is "too much" or having them attend a sensory-friendly version of an event.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The inability to received adequate mental health support for comorbidities like ADHD harms me and my family. Many professional do not recognize that patients can have ADHD and autism simultaneously since the DSM IV was exclusive and many old school providers are unaware of the DSM V's joint diagnosis. Additionally, it is difficult to report to primary care providers the need for exploring related health conditions like EDS/Hypermobility, POTS, autoimmune disorders, migraines, epilepsy, etc. My family has a history of all the aforementioned linked health conditions and primary care providers are not good at recognizing the patterns proactively in addition to dismissing an autistic patient's concerns as hypochondriac paranoia. I feel that there are not enough supports for autistic folks to advocate for their health and health disparities result from miscommunication between the patient and the care teams.
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Name	Anonymous
Demographic	Autistic individual
Response	Gastrointestinal disorders, like IBS and Crohn's. But also sensitivities to food that can restrict diet, and lead to nutritional deficiencies. Sleep disorders, like delayed sleep cycles, insomnia, recurring nightmares, and the resulting daytime exhaustion. Sensory issues, like discomfort from noise, smells, physical contact, like other people bumping into an autistic person in a crowded setting, or physical contact in inanimate things, sensations from clothing, furniture, etc. Muscle and motor challenges, including poor proprioception, but also postural issues that lead to chronic pain. A lot of the difficulty day to day with Autism is just being physically uncomfortable all of the time.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	They impair the quality of daily life. They take up extra mental energy that we don’t have.
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Name	Anonymous
Demographic	Autistic individual
Response	Gut issues (IBS) Sensory issues around smell & bright lights/contrasting light levels The hyperosmia is especially distressing and isolating.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has had terrible sleep issues since he was little. He would sleep very little and not continuously and this affected everyone in the house. Lack of sleep for everyone created a health issue for everyone. I could not work effectively on such a small amount of sleep. When he was awake it was not possible to sleep because of his behaviors. We tried all kinds of sleep hygiene and medication but only got hi, up to a reasonable amount of sleep by his early twenties. It still isn’t enough sleep for me. I feel as if my life has suffered terribly from the lack of sleep as his caregiver.
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Name	Anonymous
Demographic	Autistic individual
Response	I deal with sensory challenges which often cause extreme distress and discomfort including noise and textures
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding proper medical care.
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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 am having gastrointestinal issues and am not sure what causes them. I have been diagnosed with IBS and have had my gallbladder removed with no clear indication of what caused the chronic inflammation of my gallbladder. My brother has epilepsy and will have to take medicine for it for the rest of his life. My parents and I are in constant anxiety that he will have a seizure when no one is watching. We both have some form of insomnia.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Epilepsy Sleep disturbances Apraxia
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Seizures Sleep disturbances Sensory and motor challenges Visual acuity Diminished reflexes and ability to react
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The lack of support for treatment needed for families due to 1) low financial resources to afford doctor's visits and adequate medicines and on going therapies especially those from culturally and linguistically diverse individuals with autism 2) Inaccessibility to social services from language barriers/ lack of information/ technological barriers ( e.g., computer literacy, wifi etc) 3) Mistrust for systems and staff due to fear of being judged or discrimination based on race or other social determinants
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	For my daughter it has been physical activity such as walking as she gets severe pain. She has several physical conditions such as scoliosis, hypotonia, etc. When she was little, she had GI issues which interfered with her feeding resulting on a delay in her development
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	One of the most significant challenges caused by co-occurring physical health conditions in people with autism is the diagnosis and treatment of those conditions, which can be challenging and may result in delays. The person with autism may be non-verbal or unable to communicate what they are experiencing. They may be unwilling to cooperate with assessments or accept treatment. Because they may feel unwell, that may make their behaviors more difficult. We have also had providers who didn’t want to pursue a diagnosis or adequately evaluate the situation because it was too hard. For our daughter, challenging behaviors and noncompliance made her physical health conditions harder to manage. When she was diagnosed with type 1 diabetes in adolescence, that was particularly difficult because it required repeated injections and finger sticks every day. Some of these became routine, but there were times when she needed an extra shot or an extra check of her blood sugars. That is the nature of type 1 diabetes. There were also ways in which diabetes affected what she could eat and when, which had to be handled delicately to avoid a meltdown. High blood sugars could affect her mood, and diabetes, in general, affected how independent she could be because emergencies could happen anytime.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Anxiety, behavioral challenges and sleep disturbances.
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Name	Anonymous
Demographic	Autistic individual
Response	I’ve seen a lot of autistic people develop EDS and POTS, as a more extreme example. For me personally, I have N24, which is a sleep disorder, and it developed in early 2020. I also deal with misophonia and I’ve had gastritis, which will hopefully heal, since early 2022.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenge is that Co-occurring conditions are underdiagnosed. This is primarily due to (1) the patient assuming everyone has their symptoms and (2) the symptoms being belittled/downplayed by healthcare professionals. A lack of diagnosis is the first barrier to treatment.
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Name	Anonymous
Demographic	Autistic individual
Response	I consistently feel too tired and too weak to keep up with the amount of tasks required to function as a fully independent adult due to my chronic exhaustion caused both by insomnia and sensory overwhelm. Things such as doctors appointments are consistently put off for dangerously long because I am simply too tired to do it.
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Name	Anonymous
Demographic	Autistic individual
Response	Having Trouble sleeping due to a lot noises in my environment. I have gastrointestinal problems. I struggle to be around too much light.
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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	Maintaining a job due performance issues caused by frequently having to use the restroom. Finding job appropriate clothing that is sensory friendly. Being forced to wear something that triggers my sensory issues causes problems at both the workplace and at home. Being able to fall asleep at a decent time.
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD Insomnia Restless leg syndrome EDS C-PTSD/PTSD(trauma of being autistic in a world that is designed for allistics) OCD Anxiety Sensory overwhelm LPRD/GERD/IBS ARFID Misophonia Dyspraxia Pathological demand avoidance Executive dysfunction Visuospatial issues Migraines POTS Emotional dysregulation Depression
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Name	Anonymous
Demographic	Autistic individual
Response	This can vary, but many people have a issue with things like ADHD, OCD, sensory issues, and/or issues like Epilepsy. Weirdly, Epilepsy is more commonly a female Autistic issue compared to a Male Autistic issue. I'm one of those that has Epilepsy myself.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Everyone automatically blames autism for everything and do not continue to look for he root causes. They just see the autistic behaviors
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Name	Anonymous
Demographic	Autistic individual
Response	Personally, I have multiple chronic illnesses including but not limited to Crohn's Disease and chronic migraines. I also experience minor sensory challenges.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of understanding by providers Diagnostic overshadowing Lack of access to safe medical care Trauma
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The following neurodisabilities frequently cooccur with Autism, as they do in our family: Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), Small Fiber Neuropathy (SFN), Mast Cell Activation Syndrome (MCAS), and Gender Dysphoria. We have access to multiple specialists at Stanford, which is significant because many medical providers haven't even HEARD of these conditions. Further, schools and teachers disbelieve, doubt, and gaslight because these conditions are invisible. You cannot see someone's pulse skyrocket or one's adrenaline surge or brain fog settle in or gastrointestinal upset strike -- all for no reason at all other than one's autonomic nervous system malfunctions. Clueless physicians and educators will say, "You look fine." That ignorance is outrageous and the MOST signifcant barrier to appropriate healthcare and a Free Appropriate Public Education (FAPE) per the IDEA. Doubt and disbelief. The next challenge is that there is little to no research into these comorbid conditions and there are ZERO treatments. ZERO.
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Name	Anonymous
Demographic	Autistic individual
Response	I have Hypermobile Ehlers Danlos Syndrome, POTS, & MCAS, all common alongside autism. Autism makes self advocacy in medical settings very challenging and almost no one knows how to approach management with sensory processing problems in mind. Navigating ER visits is nearly impossible on my own due to miscommunication and I think these challenges with doctors have contributed to more serious disability, as I now require use of a wheelchair, rollator, or cane, depending on the day and have severe chronic pain. I have non-verbal episodes and meltdowns, which most medical practitioners (aside from autism specialists) don't know how to deal with. The problems this causes can be very dangerous and I have been injured by doctors before as a result. All medical practitioners need to be able to navigate interactions with autistic people for our safety.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sensory and motor challenges in addition to things like PICA require the individual to be under constant supervision. A caregiver must stay home and not seek employment. Adequate and affordable care is not currently available. Gastrointestinal and sleep issues affect academic performance and school attendance. Public schools need to have the option of flexible schedules for those with serious conditions. Research needs to be done on sleep aides like light therapy and melatonin for children. Research into gut health should continue.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory processing disorder(s), insomnia, hyper mobility, etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Very difficult to work full time. Also, very difficult to get any help or support as an autistic adult. The government (social security) does not help adults with disabilities, even after multiple applications and requests. The government thinks that autistics will magically not need support when they turn 18. As an autistic adult, married, raising a family, it is very challenging. I could use programs and support, both financially and socially.
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Name	Anonymous
Demographic	Autistic individual
Response	One challenge is becoming overwhelmed by the amount of issues occuring at once on a day to day basis which can cause debilitating symptoms. Another challenge is being able to keep a full time job while also maintaining a stable living environment. All of the health issues combined tends to create circumstances in which holding a job becomes impossible.
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Name	Anonymous
Demographic	Autistic individual
Response	I suffer from insomnia and have such a terrible time sleeping at night. I don’t feel rested when I wake up the next day. Sometimes I don’t even sleep at all because of my insomnia. I also have gastro issues which make my stomach hurt frequently. I also have severe sensory issues which cause my diet to be extremely limited. I also cannot wear a lot of fabrics due to my sensory issues
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Name	Anonymous
Demographic	Autistic individual
Response	Many comorbidities like EDS, POTS and Celiac are often difficult to diagnose, and require significant work on the autistic individuals part to advocate for themselves/get doctors to listen to them. Additional training for medical professionals about autism would help autistic individuals be taken seriously about their medical concerns. I was once told by a cardiologist that I was anxious and that was why my heartrate was abnormally high. I never indicated that I was experiencing any anxiety, nor was I. This is a very common issue.
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Name	Anonymous
Demographic	Autistic individual
Response	PMDD, hyper mobility, chronic fatigue, high glutamate levels
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenges would be daily life struggles and also getting health care officials to take the struggles seriously.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Needing specialized medical care (we travel 90 miles to a hospital that can treat Eosinophilic Esophagitis). Needing all types of medical professionals to have experience working with special needs and making appropriate adaptations (eg. dentist).
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Lack of mental health providers that understand dual diagnosis
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	sensory challenges, attention deficits
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenge with the autistic family member is sleep disturbances, many nights were insomniac nights which give him anywhere from 4 to 6 hours of sleep. Also, since he doesn't have speech, it makes it very difficult to know his wants, needs, how he feels, if he's sick or can't express his moods. So, not knowing any of those, challenge his life and all those that are a part of his life.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	feeding, sleep, seizures
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders is something that all physicians and parents should be made aware of. Our son suffered for years because he wasn't able to tell us what was happening with GERD. Sensory disorders are also critical for medical, dental and vision providers to be aware of as well as parents/caregivers. Especially if the person with autism has communication issues. Self-injurious behaviors can result in physical injuries some serious that require hospitalization and treatment and some that require first aid. Research to identify and ameliorate SIBS is much needed.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Misdiagnoses like for instance Parkinson’s Disease when in reality mental health medication caused severe tremors for years when all patient needed was a DaT scan and taken off the effecting medication. Patient could no longer take care of own basic needs thrown out of AFC home into nursing home sent to hospital and died there from hospital acquired pneumonia & UTI/sepsis. In reality patient had spectrum disorder and malnutrition from neglect. The system failed him.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	People with autism and adhd can have issues eating and providing essential self care resulting in becoming undernourished, not having clear thoughts, confusion, fatigue, low blood sugar, mood swings and other issues that come with not being able to care for essential needs of eating.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Gastrointestinal disorders, sensory disorders and comorbid mental health challenges
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Name	Anonymous
Demographic	Autistic individual
Response	Hyper mobility skin disorders sleep issues eating issues mobility issues POTS Ehlers Danlos Depression anxiety autoimmune issue sensory issues complications driving vision issues picking disorders Stimming work adaptations
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Name	Anonymous
Demographic	Autistic individual
Response	The biggest challenge is energy management and perpetual burnout. Sensory overstimulation, anxiety and stress leads to perpetual burnout, chronic fatigue, headaches, muscle tension and insomnia. I also have had many GI issues. I've had issues with Proprioception/gross motor issues and gaining muscle mass.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	ESRD dialysis- esp group in center setting. it can be so loud disorienting and chaotic in general, can be awful for those that have mental health, cognitive and neurodivergent issues... having a companion trained to help and redirect could help, so could private settings not all can do self dialysis at home
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	My eczema, dermatographia, and mast cell activation syndrome symptoms massively impact my sensory sensitivities. My skin is legitimately more sensitive and easily irritated than most, but they interact intensely with my sensory overstimulation and cause significant distress. I also fall, bump into things, and drop things frequently which often worsens already overstimulating situations and leads to meltdowns.
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Name	Anonymous
Demographic	Autistic individual
Response	I also have adhd and auditory processing disorder. It take someone repeating something a half a dozen times for me to understand what they have said sometimes and I cannot watch any show without captions.
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Name	Anonymous
Demographic	Autistic individual
Response	Sleep, noise sensitivity, and clumsiness: I have a very hard time falling asleep, staying asleep, and getting enough REM & deep sleep; have a severe sensitivity to noise; and am clumsier than most people, prohibiting me from driving in populated locations.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges I've seen with co-occurring physical health is POTS, HEDS, gastrointestinal issues, issues sleeping. The sensory issues that Covid and the long lasting effects of Covid have caused are too many to list.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I think two of the most significant challenges in our (a family with multiple people who are “high-functioning” on the spectrum) experience with autism are the GI disorders, sensory challenges and hormonal issues.Many of us still lack specific diagnosis for the issues or it takes years of visits and testing to receive a diagnosis. Sensory issues are also very challenging. We are living in a world that feels created for neurotypicals. The lighting and music in stores and restaurants are often overstimulating. We avoid food textures/flavors/colors that don't feel "safe". If there is something sensory wise that I can adjust for myself or remove, I can often avoid the meltdown. Learning to identify the overstimulation and what the trigger is, greatly helps but sometimes does take a co-regulator to help identify and help. Based on my family as well as some patterns I have been seeing in general in society, I think menopause and hormones for autistic females is a huge challenge that deserves to be studied. I would say based on what I have experienced and observed, the rates of PMS, PMDD, PCOS and other hormonal based issues are higher in women with autism. Quite a few autistic women I know who have gone through menopause, have attempted suicide during this time, have had panic attacks/meltdowns more severe than earlier in life, and they all of a sudden have a harder time functioning through life tasks such as paying bills, having conversations, working, etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	being accepted by society. Being hated for being "weird" or being told its bad, family members (specifically religious people) denying that autism is "a thing" or mental health is general, and overall having a bad reputation around the word "autism" when there is NOTHING wrong with autistic people, and we should be resprectful to each other for our differences.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory issues cause significant challenges, such as with driving--too much sensory information that overwhelms the individual, thus causing anxiety. None of my autistic adult children are able to drive due to this sensory overload. This affects the ability to get anywhere on their own, since we don't have access to public transportation. Also, I think sensory issues, in general, are difficult for those who are autistic. It can make being in public spaces very uncomfortable, including classrooms, waiting rooms, crowded public spaces, etc. Sensory issues can also affect nutrition as some autistic individuals can't tolerate certain textures so they avoid many foods and have a limited diet. And lastly, trying to find a suitable job for an autistic person with sensory challenges (which in turn causes anxiety), is nearly impossible.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	stomach disorders due to nervousness avoidance of new activities due to nervousness of meeting larger groups of people
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	There are two children (an adult & a teen) who are diagnosed as being on the ASD. They both have sleep disturbances which affects their daily functioning. The adult child is obsessed with his digestion, and has become restrictive in his eating habits
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep disturbances that start in childhood and persist through adulthood. When able to get enough sleep we're better at staying regulated, able to pay attention and absorb information. Sensory overload makes going out to public spaces very difficult at times. It can be overwhelming visually and audibly and sometimes plans need to be abandoned in the middle of things happening bwcause it's too much. Speech delays cause CONFUSION when it comes to assessing wants and needs of a child with autism.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenges caused by co-occurring physical health conditions: 1) They can be exacerbated by mental health! Somatic disorder, for example, is often directly tied to anxiety disorder. 2) There are often multiple conditions that require multiple doctors and therapists. This can be very expensive for individuals and families. 3) 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. 4) Weight management, healthy eating, and ASD is a real issue. 5) 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, dementia, affect ASD individuals and what preventative measures can be done to reduce/eliminate the potential for conditions common to people over 60.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	few servicws provide integratic teams that can address conplex comorbidities in autism autism
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Name	Anonymous
Demographic	Autistic individual
Response	Masking during work causes chronic stomach aches, migraines, PMDD, misophonia, never achieving REM sleep, sensory issues, light sensitivity (esp headlights at night)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son is also diagnosed with mental health and attentional difficulties. It has been difficulties obtaining skilled and knowledgeable caregivers and group homes to address his soical emotional needs.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My daughter has trouble predicting when she has to vomit (either when sick or from GERD and post-nasal drip). She cannot get to a bathroom in time. She has missed significant time from her program this year because of this when her GERD was not well controlled. She also has obstructive and central sleep apnea, but she does not sleep well at the sleep lab (I believe due to her sensory challenges) so we often don't get complete results to fully understand the extend of her sleep conditions. I am not sure how much of some of her behavioral concerns might be due to her not sleeping well. Sensory concerns also make it hard for her to integrate into various environments. She has sound sensitivities, gets very overwhelmed easily, and is sensitive to certain smells and tastes. All of these limit what she is willing to do in a social setting.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring conditions can cause death, isolation, communication difficulties, missing work, self-esteem and self-efficacy deficits, reduced income potential, reduced perceived mate value, injury, disfigurement, increased dependence on others, direct discrimination (both for those which put you in a protected class (like motor challenges), and for those that don't (difficulty wearing shoes because of sensory issues)), transgressing societal norms (Tourette, sleeping at the wrong time), vulnerability to structural inequality in education, housing, transportation, nutrition, the justice system, and health care. Note: I believe that you are distinguishing between "mental" and "physical" health conditions based on whether the primary diagnostic criteria are behavioral. I will answer according to that rubric, though I think it is a poor one. From a naturalistic perspective, all health conditions are physically based. So, this is a distinction based on our knowledge about the condition and our measurement capabilities. It is not intrinsic to the nature of the condition except as far as that condition's etiology falls into the class of those that exceed our current diagnostic capabilities.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	sensory issues and motor challenges. coordination too. driving would be a problem. my son who 18 still can't properly ride a bike.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Being taken seriously Mis-diagnosis [autism not recognized due to other conditions] Effective communication of co-occurring health conditions Being provided with the time and opportunity to share information regarding co-occurring conditions
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Especially for those who do not have a consistent or well understood method of communication, seeking help from others and/or describing how the physical health conditions feel is extremely challenging. In the absence of communicating vocally, majority tend to display maladaptive behaviors as a way to communicate their discomfort. This may manifest in self injurious behaviors or physical aggression to gain attention. For those that have a consistent form of communication, some of these physical health conditions can be stigmatizing and differentiate them from their peers and exacerbate the socialization challenges. It may also be noteworthy that sometimes physical health conditions go undiagnosed because of someone's lack of communication abilities causing the individual to suffer for longer than their peers with the same condition/s.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Adhd hyperactivity, impulsivity and distractibility
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggression and mood swings
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	GI difficulties, malnourishment, ARFID issues, insomnia, connective tissue disorders, sensory challenges, motor challenges
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Physical health conditions are sleep disturbances, self-harm, harm to others, inability to brush teeth, inability to bathe, inability to sleep, nausea when stressed or disregulated.
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Name	Anonymous
Demographic	Autistic individual
Response	Adverse body sensations associated with physical health conditions prevent me from doing my usual self-care things like preparing food or showering. It also makes it more difficult to access medical care, which is already new and overwhelming on a normal day. Accessing medical care is also difficult when doctors don't factor in my sensory issues or how much they impact my life and instead just write off my situation as mild because I'm not having what they consider to be extreme symptoms, and they don't realize that I'm doing everything in my power to avoid those extreme symptoms because I would not be able to communicate verbally if those symptoms were happening. Multiple times I've been stuck in my bed and unable to reach out for help when things got that bad, and I just had to wait and hope that recovery was possible. Recently I've been having stomach issues that further limit my already limited access to food. It's been very distressing when my usual safe-foods like vegetable broth further upset my stomach, but food isn't something I can just stop doing because my body feels worse when I do. There's many things that can strain food accessibility (food allergies, financial problems, food shortages, the stress of going to the grocery store, my ability to prepare food once it even is in the house), and a stomach condition only adds to that list.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Some of the most significant challenges are being able to: - withstand long periods of standing without feeling lightheaded or getting irritable. - tolerate extreme heat and humidity without getting irritable or experiencing a meltdown - going longer periods of time without food and not getting irritable/becoming lightheaded - going a full week without having a night where I'm up until 3 am - being able to go into areas where there may be sudden loud noises or not having to cover my ears when that does happen - being able to go into/navigate crowds or tight spaces without getting irritable and anxious - not have gastrointestinal problems every time there is a stressful event or time period -not feeling nauseated when I eat something with a sandy or dry texture (i.e. sandy watermelon, bland chicken) - not get irritable when it is windy while attempting to do something
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Name	Anonymous
Demographic	Autistic individual
Response	gi issues, physical fatigue from burnout
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Name	Anonymous
Demographic	Autistic individual; Other
Response	gastrointestinal disorders, (hyper mobile) Ehlers danlos syndrome, POTS, fatigue, sensory sensities, fine and gross motor challenges, dental hygiene issues due to lack of executive function or sensory issues preventing one from brushing their teeth or similar
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory overstimulation causing physical discomfort and distress. Digestive issues such as slow motility or alternating between diarrhea and constipation and physical hypermobility causing painful or stiff joints
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Sleep disturbances.
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Name	Anonymous
Demographic	Autistic individual
Response	As an autistic individual, I have additionally been diagnosed with chronic migraines. An overlapping symptom between these two conditions is sensitivity to sensory input, such as light and sound. My chronic migraines resulted from hormonal imbalances during puberty, but I have experienced sensory issues my entire life, though it was only during the period of time which my migraines were at their worst that I had my sensory issues taken seriously by family members, school officials, and medical professionals. Bright and flashing lights or loud and high pitched sounds can cause me high levels of anxiety and register as physical pain throughout my body, but this pain has only ever been taken seriously by medical professionals and family if I so happened to be experiencing a migraine at the same time that the overwhelming sensory input is occuring.
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Name	Anonymous
Demographic	Autistic individual
Response	I can't walk in a straight line without intense focus and effort on gait. I fall and trip frequently, easily get extremely faint, and easily over extend my joints or sleep on them wrong and cause pain.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Gastrointestinal disorders (IBS, sensitivity to foods, etc.), Sleep disturbances (unable to sleep, vivid dreams, waking up feeling tired, sleeping at unnormal hours, etc.), motor challenges (delayed speech, or highly focused thought patterns and having the inability to regulate the amount of speech, etc.) sensory (light sensitivity - causing headaches, nausea and eye pain), (temperature sensitivity- always cold/hot). (Food- sensitivity to texture, smell, taste. This causes a decrease in required vitamins which can impact the overall development of the brain and body organs, which in turn cause other disorders and delays in development.) Movement of body parts (walking on toes, flapping of hands, etc. due to stimming. This can cause soreness and joint pain. If at a younger age can cause the muscles/system to develop incorrectly causing long-term effects and the need for physical therapy).
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Name	Anonymous
Demographic	Autistic individual
Response	Delayed responce, unable to properly regulate oneself, overstimulation, self detrimental
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	GI issues, specifically low intestinal motility, combined with sensory issues (causing a narrow range of food consumption), resulting in severe constipation problems, amongst other GI issues. The GI issues ultimately affect the mood and sensitivity to the surroundings of an autistic child.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have daily challenges with the food available, and how that food impacts my physical health, I can't eat most foods because of all the additives and unnecessary substances added to it, or the highly processed foods. I get physically sick and I become unregulated in managing my autism. Everything has to be balanced if I want to somewhat function "normal." Stress, overestimulated, senses overstimulated, and I cannot function. I shut down, and then barely can even care for myself, and yet then I'm expected to work and function like nothing is wrong. Everyday living, and life is a challenge with being autistic, and my challenges fluctuate daily, hourly, and minute to minute. One thing I want to make clear, most of the time, these challenges, I never know what they will be, because it is never the same. One day, I have diarrhea and can barely eat, next day every sensory, sound, taste, touch, sight...etc, is so overwhelming, I cannot live "being in my own skin" This effects my whole person, not just physical, but mental, because then my mental health begins to spiral, and spiral fast. Guess what? There is no one I can turn to, to get help. There is no community support, doctors gaslight me and don't know how to work with or treat autistic people, and therapists, mental health providers are much the same.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory challenges create the most pervasive challenges. A great many places are both audibly and visually noisy, which is both distracting and overstimulating. This was particularly challenging when my Autistic son was in daycare and early elementary school, as finding daycare and after school care facilities that weren't overstimulating was difficult and significantly limited our options. For my son, sleep disturbance is a close second, as he requires 10-12 hours of sleep to do his best but requires medication to sleep at all.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Due to sensory challenges with food textures, children getting adequate nutrition is difficult. Add in sleep disturbances, and the result is a emotionally and physically unregulated child. Emotional regulation is hardly a solution when they are tired and hungry, and unable to explain this to those who are trying so hard to help them eat and sleep. Any food that has varying texture, i.e any fruit piece that has pieces of pulp, rind, peel, or seed will cause gagging, so safe foods that are small and reliable in texture, shape, and color, i.e goldfish crackers, fruit gummies, and chicken nuggets are the only thing they will comfortably eat, which is not meeting their daily fiber, protein, or vitamin minimums. Without physical needs being met, emotional needs will be all over the place!
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Name	Anonymous
Demographic	Autistic individual
Response	The co-occurring physical health conditions all contribute to making life more difficult and require more planning/adaptations. For example, I have to be particular with my diet to avoid gastrointestinal discomfort and I need supplements of particular minerals because my body does not absorb them well. Sensory issues, particularly hypersensitive hearing and sensitivity to heat, affect my ability to sleep. I use accommodations such as keeping white noise and a fan on at night, but sensory issues have also made it necessary to move from an apartment because the street noise was so bothersome I had chronic stress symptoms, which abated after moving to a quieter location. The world is much more overwhelming with the constant sensory input I have to deal with, and that can make doing even important things I want to do, like going to a busy academic conference for my career, difficult to manage.
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Name	Anonymous
Demographic	Autistic individual
Response	I find myself avoiding modern society due to sensory challenges. There is always so much going on, that my brain tries to process all at once. Shopping for groceries takes up much of my energy for the day. The lights, sounds, and simply trying to find what I’m looking for can be overwhelming. Socially acceptable clothing is rarely sensory friendly. I can only stand it for a few hours before I am overwhelmed. The feel of makeup on my face, and having my hair down is another issue. When I shave my hair off completely, I am judged by most people.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Receiving initial diagnosis, especially for late-diagnosed autistic individuals; physical symptoms are frequently overlooked, often due to patient’s communication issues
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Insomnia is incredibly difficult on caregivers, especially since folks with a lot of support needs can have no sense of danger and good motor control. They can easily do things like open a window and wander out of the home. It is difficult to figure out ways to always have someone monitoring a person that may not sleep for days and always need supervision. Spontaneous disrobing is a real difficulty as well, since it can happen at any time. Physical assault of caregivers and as self harm is terrifying. I remember being terrified that my child might pull out their own eyes, and have watched them break their teeth on furniture that they grabbed and bit into. I cannot think of anything more difficult than seeing your own child harm themselves. Fecal smearing is another difficulty, especially since it is often paired with gastrointestinal disorders. So, for example, my child experienced constipation and would then smear themselves with fecal matter they could pull out of their own body. Sensory issues make all moments stressful. You never know when something might happen and set off, for example, an assaultive behavior. That is the reason that many people with children that can become violent often become hermits themselves.
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Name	Anonymous
Demographic	Autistic individual
Response	For me I have issues with my stomach. Doctor says it's stress and inflammatory diet. I have emotional disregulation which adds to the stress and makes it hard for me to keep jobs and afford healthy food. Junk food seems cheap, to help I have tried switching to rice diet but its not easy. Also grocery shopping is hard for me in general because of sensory. I can't work many jobs because of noise, temperature, or texture of card board. Customer service can also be hard because I can't filter out information and can become overwhelmed. People will assume im being rude and write me up and sometimes I will get fired because I look irritated but it has nothing to do with them personally I even though it's hard I can still do the job. I do have trouble sleeping and sometimes I have issues with attendance. It is all related and accumulative. I wish people could trust and understand more. There are lots of things I can do, it may just look different.
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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	Connective tissue disorders (Ehlers Danlos), muscle tone, apraxia, autoimmune conditions, POTS, Mast Cell, gastrointestinal issues, executive function disorder, ARFID, PDA, migraine, sleep disturbance, sensory, dyspraxia
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenge is daily survival. Every day is different and overwhelming. I personally suffer with gastro, sleep, and pain issues (feet and wrists/hands as well as headaches and vision) - occasionally overwhelming/debilitating. It's exhausting and exacerbates mental health issues.
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Name	Anonymous
Demographic	Autistic individual
Response	Migraine Intestinal distress Joint aches Clumsiness/accidents
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Aggressive behavior, emotional disturbances, sleep disturbances
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	This is a very broad question that is a bit too in-depth for 1500 characters, but I will list some personal challenges as examples. GI disorders prevent me from engaging in activities/work/events/etc, often having to take long breaks or cancel plans entirely. Chronic fatigue is one of the most overwhelming problems that I have that affects literally every aspect of my life and I have yet to find anything that truly helps. Sensory and motor issues affect my work life as uniforms/dress codes cause disturbance, as well as having to mask when working with clients/families.
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Name	Anonymous
Demographic	Autistic individual
Response	Narcolepsy, IBS, clumsiness resulting in frequent cuts and bruises
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Making money Filling out forms for transitional assistance
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Name	Anonymous
Demographic	Autistic individual
Response	muscle weakness, muscle atrophy, strabismus, diplopia, lack of depth perception, light sensitivity, cognitive deterioration, stroke like symptoms, neurogenic bladder, incontinence, neurogenic bowel, chronic constipation, facial weakness can't hold it up can't make expressions people get mad at me because they think i'm disrespecting them makes it harder when i don't understand people, mobility issues, scoliosis, ichthyosis, muscle fasciculations and spasms, neuropathy, having an arrhythmia, having lung problems that cause congestion coughing sneezing randomly, fatigue
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Unable to eat solid foods
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep disturbances- autistic child has delayed sleep, wakes up in the middle of the night and typically doesn’t sleep more than 7 hours altogether. This presents difficulty for child bc of inadequate sleep, family has inadequate sleep, and family has difficulty providing engaging activities for this awake periods as well as appropriate supervision.
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Name	Anonymous
Demographic	Autistic individual
Response	It's a paradox for me. The intensity of the physical ailments is directly correlated to the level mental stress I'm under. The physical ailments I experience impead my ability to function properly causing me me more mental stress that in turn makes the ailments worse. hyper / hypotension Sleep apnea Inverse psoriasis Athsma Hidradenitis suppurativa Irritable bowel Arthritis / joint pain stiffness Joint hypermoblity* Flat feet Sciatica Spinal subluxations Disautonomia Nausea Migraines Balance Fine motor control of hands Heart palpitations They can't be organized by what's worse because their intensities change and each effects daily life differently.
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Name	Anonymous
Demographic	Autistic individual
Response	Difficulty falling asleep at a normal time, often not falling asleep until 2-3 AM. Difficulty processing loud, busy environments, and feeling inadequate for struggling in those environments. Slow to learn common tasks, like tying my shoelaces or riding a bike.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory challenges present the largest difficulty for me. Few workplaces support wearing noise-cancelling headphones or earplugs without disclosure of disability, and disclosing my autism typically leads to being treated as lesser by my employer and eventually fired for "issues" that did not exist before disclosure. The cost of not having these accommodations is total exhaustion and an inability to function once I arrive at home. It would help a lot if accommodations did not require disclosure of disability, and if disclosure did not mean that people treated me like a child. I wish that simple, non-obtrusive sensory tools like headphones were fully accepted and unquestioned. Gastrointestinal issues mean that I always need to know where the nearest bathroom is, as excess stress will cause me to have diarrhea. I'm often under excess stress from life demands and sensory issues, so this happens at least once a week. Otherwise, I'm often constipated to the point of nausea, which limits my ability to enjoy food and certain social events. I brought this up with my doctor, but he dismissed it and told me to eat more fiber, so I've been unable to get any kind of treatment. Taking fiber supplements has not resolved the issue. I'm also a type one diabetic. While I'm generally good at handling my own treatment, I could see this being a problem for some other autistic people. There's a lack of good education on diabetic self-care for the autistic population from what I've noticed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Working full-time employment. Working with the general public. Care tasks like eating or showering—whether for yourself or someone else (eg, parents.) Chore tasks like dishes or laundry.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory processing disorders, fine motor challenges, sensory challenges, gastrointestinal disorders, difficulty with spatial awareness that often results in injury, insomnia
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Name	Anonymous
Demographic	Autistic individual
Response	Sleep issues and sensory sensitivity issues. It is extremely difficult for an autistic person to get good sleep because of our sensory sensitivity issues, and I believe anxiety and depression also play a role in this. Physically, the conditions need to be perfect in order for me to get quality sleep. Being overly sensitive to sounds, lights, temperature, and the tactile feelings of our pajamas and bedding, all of these contribute to a poor night's sleep. This is exacerbated by mental health issues as well.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory disorders - challenging when navigating the external world and shopping online can make it hard to determine good (manageable) purchases but shopping in the real world can be overwhelming /trigger sensory overload Auditory processing disorders - makes it challenging to keep and maintain a job, hearing problems that may or may not have physical causes or just be the way our brain processes make it hard to process the world around us Sleep disorders - we can be exhausted but necessarily know that we are. This leads to burnout at higher rates and can trigger worsening of comorbid mental health issues as well as degradation of physical health
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Name	Anonymous
Demographic	Autistic individual
Response	For me the most significant challenges are the unpredictability and unknown of things. its hard for me to keep to my routine with doctors appointments or when my symptoms are bad. Its hard when i have physical symptoms because it causes me to go into sensory overload.
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Name	Anonymous
Demographic	Other
Response	Living life is more exhausting. I feel like I can't keep up/enjoy as much with my peers b/c of those co-occurring health conditions i.e. lack of sleep, lower tolerances for loud, or busy or crowed situations b/c of sensory challenges. It feels like there isn't space in society and therefore stay home a lot of the time.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	In my practice as an SLP as an autistic individual I see sleep disorders and sensory challenges as the most impactful and gastrointestinal as second and hypermobility issues third.
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Name	Anonymous
Demographic	Autistic individual
Response	-Finding doctors that listen and take your health issues seriously without infantilizing adults with autism -Getting doctors to work together on a care plan when you see multiple specialists (gastroenterology, endocrinology, psychiatry, primary care) -Lack of understanding from the general public about autism -The pushed idea that only children are affected by autism/programs for individuals with autism that only cater to children -Not being believed by most people because your health conditions are not "visible"
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Trouble falling asleep Extreme food pickyness Sensativity to fabrics and noises
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Name	Anonymous
Demographic	Autistic individual
Response	I struggle with intense sensory and sleep issues; I often struggle to fall asleep and wake back up consistently, and sometimes cannot fall asleep without melatonin. My sensory issues often cause secondary physical issues such as malnutrition from picky eating, UTIs from overcleaning, skin issues from washing my hands too regularly, ect. I’m also prone to feeling more anxious than most people due to fears of overstimulation.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My loved one is often dismissed at the doctors for any health concerns, this has lead to several conditions going unchecked and getting worse.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I experience a multitude of co-occurring conditions, but perhaps the most disruptive in my life has been insomnia and other sleep disturbances. Gastrointestinal discomfort has plagued me my entire life, and my sensory needs make certain spaces inaccessible. My eyes are quite sensitive to light, this makes driving at night impossible (especially now that lots of cars have LED lights). I find it difficult to remain in bright, loud, or dirty spaces for very long.
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Name	Anonymous
Demographic	Autistic individual
Response	Difficulties monitoring thirst, hunger, and tiredness leave me physically exhausted but also drastically reduce my impulse control and executive functioning, leading to difficulty with behavioral addictions, especially in relation to screen usage which give me eye strain migraines and hand pains. All of these problems increase as the day goes on, which gives me insomnia issues. Sensory overstimulation also often leads to physical pain, such as nausea (especially smells) and headaches (especially visual overstimulation), and the stress of sensory overstimulation directly leads to teeth grinding, chest pains, and other physical symptoms of anxiety.
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Name	Anonymous
Demographic	Autistic individual
Response	I have issues with memory loss and sensory problems. Someone will explain something to me and I may forget 20 seconds later. I eat 3 prepackaged foods only on a regular basis because most foods are inconsistent.
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Name	Anonymous
Demographic	Autistic individual
Response	Chronic fatigue. Sensory and emotional overload frequently and repeatedly pushing our minds to a breaking point. The massive amount of information, input, and processes our minds receive and experience is ridiculously higher than allistics, against our will. Our control over this is often none. What we feel, because of certain things our brain does out of our control, is something that can and often does ruin, destabilize, and choke our lives into constant minute by minute mental self care, management, and regulation. This leaves us with nothing left for the mountain of other needs our bodies and lives require. We run out of the ability to do anything at all extremely fast because of how constantly overwhelmed and bursting at the seams our brains are by nature. We can not function healthily underneath the society we have been born into. Unless the people in power see that they can help, and decide to. Support is our highest need, and it is your responsibility to provide it.
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Name	Anonymous
Demographic	Autistic individual
Response	Two most significant challenges from co-occurring disorders are sensory issues, mood dysregulation disorders and motor challenges. As an autistic person with Ehlers Danlos Syndrome, the motor challenges can further disturb my physical health, including the muscle, and for an able-bodied person it can severely affect your body's overall performance. Mood dysregulation disorders are a challenge for many autistic individuals, along with sensory issues due to the fact they amplify emotions, causing someone with autism, who is already hyperaware of their surroundings and oftentimes can have mood switches, to struggle even further.
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Name	Anonymous
Demographic	Autistic individual
Response	GI issues—ranges from general IBS to more severe stuff
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I experience the following: Sensory Processing Disorder is a major issue. I experience extreme issues with various sensory inputs, including sound, light, smell, taste, touch Dyspraxia is major clumsiness to a point drastically more noticeable than most others. Insomnia is a daily occurrence. I have trouble falling asleep until very late at night, sometimes 2:00 to 4:00 AM, despite laying in bed before midnight and trying various methods to sleep(at various times: silence and black room, ASMR videos, soothing sounds, television).
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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, along with increased substance use, high blood pressure, liver enzymes, and diarrhea.
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant cooccurring physical challenges to my autism are: connective tissue disorder (unspecified), Mast Cell Activation Syndrome, irregular/heavy menstrual cycles, and sensory sensitvities to light and sound.
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Name	Anonymous
Demographic	Autistic individual
Response	Sleep, and ability to work/attend school. I have insomnia and if I don't get a certain amount of sleep I can't function. I get so overstimulated I experience meltdowns where I can't stop crying and it can mess up weeks of my life. It also makes me unable to work and go to school because autistic traits that might be able be accommodated get so much worse. If I'm not on schedule because of one of my illnesses it ruins the day. Chronic pain I can't relieve adds to the sensory overload I experience at work/school, it's not uncommon for me to loose the ability to communicate to other people because of how much I'm experiencing in my body at once
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Name	Anonymous
Demographic	Autistic individual
Response	Stomach issues, insomnia, sensory issues, anxiety, depression and reading comprehension.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	hypermobility disorders and autism have a high comorbidity rate. as a person with hEDS and autism, i see a variety of specialists for my health needs. i frequently experience barriers when trying to access healthcare, such as appointments having to be scheduled via phone calls (i can’t communicate well over a phone due to auditory processing disorder) and other things
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Name	Anonymous
Demographic	Autistic individual
Response	the employment market is largely not accommodating to my needs. i regularly need to devote an entire day to low-stimulation recovery (low-light, solitary quiet time) to avoid burnouts or exhaustion, which makes it hard to maintain a job where I'm expected to work consistently for 8 hours straight every single weekday.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory issues not being accommodated by employers, sleep disturbances causing major fatigue that can be debilitating in day to day life. Research shows links to autism and auto immune health that doctors need to be more educated on, such as hypermobility caused by EDS.
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenges often
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Name	Anonymous
Demographic	Autistic individual
Response	Chronic pain. Lots of conditions that cause chronic pain are heavily comorbid with autism, particularly joint hypermobility and sleep disorders. Autistic individuals are even less likely than the general population to be believed or taken seriously by doctors when they complain of chronic pain. This is doubled when the individual is a woman, a person of color, disabled, transgender, gender non-conforming, or any combination of the above.
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Name	Anonymous
Demographic	Autistic individual
Response
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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. Fine motor needs: Unable to write independently to express thoughts and academic capabilities. Difficulties in carrying out daily living needs such as zipping up coats, using the bathroom independently, typing on a computer, utilizing eating utensils 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. Anxiety- unable to attend doctor appointments due to high anxiety and oversensitivies to noise and touch. Speech/Language Disorder: non-speaking, no access to AAC devices due to financial reasons, advocate for body autonomy, express wants/needs/requests. Sleep Disorders: Days where child cannot sleep, disturbed sleeping patterns (sleep during the day, awake throughout the night, awake for days at a time)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Some of the most significant challenges caused by co-occurring physical health conditions that we have experienced with my son is congenital heart disease which stems from some kind of a genetic condition that we still are trying to pinpoint, it has caused my son to have intestinal malrotation, mirrored organs(stomach on the opposite side) .Hetrotazy is the condition associated with his organs being rearranged and having congenital heart defects . My son was born with a complex single ventricle heart, has had three open heart surgeries since 2016. He also struggles with sensory challenges that causes him to cover his ears when there are loud sounds. The sensory challenges impact his ability to sleep comfortably, he ends up waking to any sudden noises. He was also born with some damage on his brain that was discovered during a Mri after birth.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Sleep disturbances Gastrointestinal issues ( including constipation) Motor issues Feeding difficulties Toilet training difficulties Epilepsy
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Name	Anonymous
Demographic	Autistic individual
Response	The hypermobility disorders so many of us have such as Ehlers Danlos Syndrome are the most disabling in my experience. I can't have most jobs because I can't do any sort of physical labor like standing in service industry jobs for 8+ hour shifts, and there are no jobs where you can lay in bed the entire time. I have plenty of GI issues as well which make holding down a job complicated too, but not as much as the EDS. But the government doesn't consider EDS disabling enough to give me disability payments, so I'm forced to work through excruciating pain.
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Name	Anonymous
Demographic	Autistic individual
Response	The most significant challenge caused by a co-occurring physical health issue for me is severe fatigue. I’ve had to cut out most things in my life that aren’t work or immediate family, even long phone calls leave me needing rest. It’s extremely frustrating.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The main issue that I have found both in myself and others is mainly the ability to take care of oneself.
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Name	Anonymous
Demographic	Autistic individual
Response	There is a lack of knowledge of co-ocurring health conditions by healthcare professionals causing autistic individuals to get misdiagnosed or not diagnosed at all. If an autistic individual gets diagnosed with a co-occuring physical health condition, it is difficult to receive aid for such, and the aid available is often not enough.
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Name	Anonymous
Demographic	Autistic individual
Response	I struggle most with insomnia, Ehlers-Danlos Syndrome and POTS. I know a lot of autistic people have different circadian rhythms so that can cause a lot of us trouble when trying to sleep at a “regular” time. A lot of us are also hypermobile and for me this causes a lot of nerve pain and keeps me from doing many different activities such as exercising, sleeping comfortably, lifting heavy things, writing or typing for long periods of time, playing piano, etc. One of the biggest challenges with EDS is that most doctors don’t seem to know much if anything about it. There is also very little research on it but it seems to be a lot more common than what was first reported in research because not many people were diagnosed with it before. It’s frustrating that there isn’t more research on the different ways in which an EDS person’s body functions differently from the average person’s aside from the musculoskeletal and gastrointestinal symptoms. POTS keeps me somewhat fatigued all the time and makes getting any amount of exercise difficult due to my high heart rate that won’t slow down for a long time after physical exertion. I don’t fully pass out from it but it’s really annoying and prevents me from doing things I want to do. As for sensory and motor challenges, I don’t have co-occurring disorders of those but the typical sensory issues related to autism are very disruptive in my life and affect every part of my day.
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Name	Anonymous
Demographic	Autistic individual
Response	The ineffectiveness of the healthcare system to help is most significant for me. All the time and 90 dollar copays spent on doctors that take 15 minutes to pick out one issue, rejecting the whole picture, then send you to someone else for that one issue, is frustrating, ineffective and financially devastating. The more wholistic healthcare professionals don’t take insurance because they see how insurance ruined medical practices. They are even more expensive, but more effective.
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Name	Anonymous
Demographic	Autistic individual
Response	Some of the most common comorbidities in autistic people (like autism itself) are complex and multi-system conditions that healthcare professionals are uneducated about and ill-equipped to support. Many have a genetic basis. Many are compounded by the effects of trauma that seem to be more prevalent (if not ubiquitous) in autistic populations, and we tend to be more sensitive and susceptible to the trauma we do incur. Childhood trauma in the form of adverse childhood experiences (or ACEs) are the single greatest predictor of dozens of health outcomes, but trauma is vastly underrepresented in healthcare and research and its treatment isn't prioritized all because it's not profitable. I personally have had chronic respiratory infections and developed ME/CFS and FND with non-epileptic seizures, among other conditions, and 1500 characters is nowhere near sufficient to cover the range and severity of symptoms of my own, let alone for the gamut of autistic people. Medications corresponding to misdiagnoses (which are very common for autistic people) can cause further health problems, and often do, and only serve to compound the difficulties of those afflicted with the massive web of comorbidities.
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Name	Anonymous
Demographic	Autistic individual
Response	Denial of request for Dx (not a white male), self-hospitalized twice for SI, refusal to identify as victim because of additional physical harm or social bullying based upon racial/ethnic culture, consistently told not ASD by GP and family because of physical appearance/athletic abilities in individual sports/academic abilities, high masking due race-culture-religion-sexism-homophobia-misogynoir-FOO-employment opportunities-corporal punishment, speech impediment, hyperlexia, dyscalculia, GT Kid, ADHD, SPD, CPTSD, anxiety/depression, Hashimoto thyroiditis, IBS, Ehler-Danlos, GAD, social anxiety, panic disorder, queer, bulimia during partner violence in college
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Name	Anonymous
Demographic	Autistic individual
Response	Sleep disorders are an almost nightly occurrence for me. Sensory overload is one of the worst challenges faced by the Autistic community.
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Name	Anonymous
Demographic	Autistic individual
Response	Migraines/nerve pain and dysfunction as related to overstimulation. Sleep disturbances as related to overstimulation. Sexual dysfunction as related to overstimulation (getting physically aroused when not aroused otherwise, also relating to sexual violence against autistic people). Poor depth perception, clumsiness, high physical pain tolerance and low psychic pain tolerance. Gastrointestinal issues as related to overstimulation. Burnout as a whole and skill regression.
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Name	Anonymous
Demographic	Autistic individual
Response	Gastrointestinal issues, migraines, hallucinations, ADHD, trouble moving when comfortable, short term paralysis, synesthesia, memory trouble short and long term, sensory overload or selective intake, differences in social expectations, realities, experiences and instincts, differing emotional and physical needs from the norm not being considered
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Name	Anonymous
Demographic	Autistic individual
Response	Within my life, I have struggled with sleep, unexplained GI upset, and sensory issues. These have become moderately worse with time, although I have also developed ways to exist with this. I have trouble going to sleep, randomized GI issues that can be painful, and with certain textures/sounds. I also have a heightened heart rate, which I’ve been told could be related to being ND. I would call sensor issues the most prominent in the experiences of autistic people in general, but it’s certainly possible many of us have health issues that are not discussed in the community that I’ve heard.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It varies among Autistics. What family/friends of an Autistic person may view as significant challenges may vary from what the Autistic person perceives. Example: I have a gastrointestinal (GI) disorder that severely restricts diet. My relatives say it’s “horrible” that I have to live with it, and menu accommodations distress them. But to me, my sensory challenges feel more burdensome than my GI disorder and insomnia. Example: I’m hypersensitive to auditory stimulation and subconsciously clench my jaw until I get out of the situation/environment. By then, I have a terrible headache from jaw and shoulder tension. I’ve had a WFH job for 6 years, but Zoom work meetings mean I’ll get one of these headaches. Higher pitches, such as those of some female voices, cause sharp ear pains that result in me wincing and jaw clenching. Hearing back-and-forth conversations between 3+ people causes painful sensations of my eardrums “pulsing” with each word heard, which results in jaw clenching against pain. (Physically, doctors say my ears are fine.) My Autistic teen reports that her PCOS is a worse challenge than her tactile sensitivities and insomnia. (Source: autismparentingmagazine.com/autism-pcos-link.) Even an Autistic person can’t say what a significant challenge is for another without asking. For non-Autistics answering this survey, the question should be “What do you PERCEIVE as the most significant challenges…” since they can only speculate.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Sleep disorder -since birth. Nothing really shows on sleep study. Medication only partially effective. Sensory issues -sound and light sensitivity. Concern about safety with law enforcement due to hypersensitivity to loud voice and lights. Alexithymia- difficulty recognizing and communicating emotions. Also there is a physical version of this. They have trouble articulating physical sensations to health care providers. Difficulty quantifying severity of symptoms like fatigue, pain, or sinus congestion. Poor historians regarding current illness and medical history.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring physical health conditions in autistic individuals can present significant challenges. Gastrointestinal disorders may lead to discomfort and impact overall well-being. Sleep disturbances can affect quality of life and exacerbate existing challenges. Epilepsy poses additional health risks and management complexities. Sensory and motor challenges may contribute to difficulties in daily activities. Addressing these issues requires a holistic approach, considering both autism and associated physical health conditions for effective support and management.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My autistic child is still very delayed and fine and gross motor skills. There is not a school close by that can truly accommodate what he will need as he continues to grow and get into elementary. The only schools that seem to be available are ABA driven and this scares me knowing that some schools are still behind and their ABA practices. My child has to take melatonin every single night in order to fall asleep.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	For me, the most significant challenges come from sensory and motor issues associated with autism. Many spaces aren’t sensory friendly or have spaces to go to if the general area is too overwhelming.
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Name	Anonymous
Demographic	Autistic individual
Response	Lack of obligitory protectated accomodations that call for flexibility and alternative approaches for neurodivergent individuals without causing "undo hardships". Implementing this as a hard requirement by law rather then a formality would help functional atypical people to live both sucessfully and independently. Without it this can contribute to poor mental health, self-care and overall well-being. Without it we're left to figure out how we have to navigate the world with our weaknesses instead of our strengths causing major executive function disturbances and sleep disturbances on a daily basis from induced stress and anxiety. For example, some one may have to learn career skills visually, hands-on, in smaller groups or one on one. They may require direct communication an open line of communication. If the system of beliefs can change for us in these enviorments, especially when multitasking they may also need more time, less rigid SOPS or clear cut expecations. Understanding that while we work for quality results we also cant always read inbetween the lines. This could look like reducing the quantity of tasks juggled at once although in return we'd see an increase in the completion time and quality of resolution.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	My inability to fully process my environment makes it impossible for me to be aware of my physical needs. I am so consumed by over stimulation that my physical health symptoms go unnoticed for hours, sometimes days depending on the symptoms.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Gastrointestinal and sensory.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory challenges and motor planning issues
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	As a services coordinator for autistic children, I would say the most significant challenges is a lack of medical providers that are willing and able to treat co-occuring conditions, especially for children with autism and intellectual disabilities. Personally, my most significant challenges relate to Ehlers-Danlos Syndrome and dysautonomia (autonomic nervous system disorder).
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Name	Anonymous
Demographic	Autistic individual
Response	Doctors not believing autistic people's symptoms causing years of battling to get diagnoses for co-occuring conditions like EDS or POTS.
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Name	Anonymous
Demographic	Autistic individual
Response	Having to always be on alert for anything that may trigger a physical response, in terms of GI issues.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Autoimmune diseases have been a surprise. Not something anybody mentioned as a co-occurrence. But I've noticed in the population that they frequently show up. Children were much more prone to viral illnesses as well. Frequently sick as children with asthma etc. and connective tissue disorders that can lead to some really challenging problems. And more autoimmune diseases. There's a lot that doctors don't warn you about for the future but it has been changing so much and so fast.
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Name	Anonymous
Demographic	Autistic individual
Response	Gastrointestinal (GI) disorders are the most common and over-looked issue. Many times these disorders are challenging to diagnosis and therefore mean autistic individuals suffering from these health issues are unable to get treatments and medications for it. There are many reasons why it is a challenge to get these diagnosis but a big problem is the way doctors treat autistic patients. Doctors either lack knowledge about how autistic individuals can suffer from these issues, or in some cases doctors do not understand or believe that their patient is suffering GI issues because they are seen as too young, and because many autistic children can have motor challenges they are sometimes unable to explain their symptoms to their doctors. Even when the autistic individual is old enough to explain their symptoms many times they are brushed off.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It's difficult to make it through a a full shift at work due to my insomnia, gastrointestinal disorder and sensory overload. The lack of understanding in society and workplace of autism and mental illnesses have made those spaces unsafe for individuals like me.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory issues
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Name	Anonymous
Demographic	Autistic individual
Response	*autoimmune disorders *gastrointestinal problems *disautonomia *how our bodies process vitamins (BH4 pathway)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Even with 10mg of melatonin every night, sleep lasts 4 hours or so. Awake for several hours and then napping throughout daytime hours. Typical wake-sleep hours not their reality. Sound sensitivity and headphones required all day every day. Social norms not observed or followed. Autistic adults report being traumatized by ABA therapy and being forced to “mask” who they are and how they behave. They seek acceptance just as they are, with all their individuality and unconventional behavior.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory Overload - Too much stimulus caused by things such as loud cars, electronic billboards etc Hypermobility - Joints dislocate frequently and constantly, see Ehlers-Danlos Being outside and/or being around too many people can cause sensory overload and makes it harder for us to function.
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Name	Anonymous
Demographic	Autistic individual
Response	For a lot of us, the biggest thing is pain. Pain from gastrointestinal issues, pain from Ehlers-Danlos syndrome, pain from fibromyalgia. Secondly, would be exhaustion. Between the amount of sensory input that we experience on a daily basis that we can't easily avoid, and the comorbidity conditions that we have to deal with, they are constantly causing exhaustion. Third would be lack of knowledge. Most of the conditions associated with autism are incredibly under researched and not well known. We end up having to teach other people about our conditions in order to get help and sometimes we are simply not believed or told that because we have one they can't treat another one because it's basically just symptoms of it. Often, we have to travel long distances to find the care we need.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	As an adult with autism and attention deficit hyperactivity disorder (hereby referred to as ADHD), the most significant challenges for myself include: Sleep disturbances; prone to being overstimulated or under-stimulated, causing issues in but not limited to anxiety, increased stress, severe inconsistency with energy levels, and major depressive disorder.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It is hard to work. although workplaces are "required" to be accommodating to their employees needs, the general public is not educated enough on matters involving disability, chronic illness or empathy. my mom and I both have gastrointestinal issues. they flare up unexpectedly at times and interrupt whatever we're doing. Personally, I have to take more frequent and longer bathroom breaks when this happens. Our employers and coworkers only assume we are purposefully "slacking off". I've been harassed by other coworkers for this. my mom and i both have trouble sleeping, I am especially sensitive to noise and light, and I was diagnosed with rheumatoid arthritis at age 21. I am now discovering that I may also have lupus. we are much more sensitive to stress and it takes physical tolls on us. there have been times where i am near ready to faint or throw up at work because of the overstimulation along with. i have been unemployed for a year now. i do not have the energy nor strength for entry level jobs which all require us to be good at repetitive, strenuous, or social tasks. i am not seen as an asset to any employers. I cannot work. my mom is good at being nice to people even when they are extremely rude and condescending to her. that's one of the only reasons she has been able to work.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	In general, lack of knowledge. Autistics are likely to assume what they experience is typical, and this includes disabilities. They may not think a difficulty is worth mentioning. Medical professionals also are not adequately educated on comorbidities and unfortunately may dismiss any alerts. This lack of knowledge prevents diagnosis, accommodations, and/or treatment.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	There is a fear to get an actual diagnosis for autism. This means that, instead of getting proper treatment for co-occurring conditions, many autistic individuals just live with these conditions. This affects their standard of living, and could potentially become worse as time goes on. Of course, this is just an observation as someone who is around autistic individuals. I, personally, have no data to back this up. It should also be noted that people tend to not get a diagnosis because of other parts of their identity. The medical field is biased against diagnosing POC individuals and women.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep is a common and very impactful issue for both my son and myself. We struggle to sleep, and often wake up very early with active minds. We both tend to get sicker more often than others, and our illnesses seem to last longer. Finally, the sensory issues can trigger aggressive overstimulation.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	YOU NEED CULTURAL QUESTIONS ADDED! PERIOD! THINGS THAY HAPPEN IN A CLINICAL SETTING TO BLACK AND BROWN FOLK EFFECT THINGS IN THEIR AUTIZZY WORLD BIG TIME. FIX IT. also FREE PALESTINE! CEASEFIRE NOW!
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory issues cause a multitude of problems on the day to day. It's harder to drive at night, going outside in the day tends to hurt and in turn give headaches and quickly exhaust me. Too many loud noises makes it hard to enjoy certain events. Certain things make my skin feel like I'm under attack and all of these combined together makes it hard for me to get out the house or go to work without becoming quickly overwhelmed and in turn struggling to continue the day. I have Silent Reflux, and IBS which requires that I take medication everyday to avoid extreme stomach fluctuation and issues with any random food that I may not have realized would cause a problem. I've randomly thrown up without knowing why and in turn all of these things cause my body to grow weaker and more reliant on medication. Sleep-wise, I can't even begin to describe how much it impacts my day-to-day.. I never feel like I've gotten rest and am always tired even if I get 12 hours of sleep. This leads to constant exhaustion mental and physical that make getting through my days nearly impossible. I've had many days where the best I could do was get up and go right back to sleep. In turn this creates issues with holding steady work and hoping that if I do get a good job they will be reasonable to me randomly being sick in what seems like short periods of time when things are way worse than usual.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I am diagnosed with PCOS (Polycystic Ovarian Syndrome) as well as being on the Autism spectrum. This means I have cysts on my ovaries that effect my hormones, period, ovaries, weight and fertility. One of the hardest things of having a co-occuring health disorder is how awful it can be sensory wise. I am already very sensitive to textures, sounds, smells and lights, but during my period it all gets 10x worse because of my PCOS, probably because of hormone imbalences. It is difficult to find the strength to get out of bed in the morning. It is very difficult to go to work and focus on my job because I am constantly bothered by my health issues, being in pain, losing lots of blood makes me anemic. It is also difficult to be able to see a doctor, because just going to a hospital and having to speak to another person takes a lot more emotional and physical labor for me than the average person. I have to prepare a script. I have to have my boyfriend come with me in case I am too overwhelmed to speak. I want help, but I cry whenever i am frustrated or confused. Doctors don't take me seriously because I am overly emotional, but they don't realize how scary it can be for an autistic person.
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Name	Anonymous
Demographic	Autistic individual
Response	The unique barriers to seeking long term treatment for any condition in adults. Adult autistic folks, based on my experience, find the process of managing health care overwhelming and are less likely to pursue, start or stick with treatment plans. Aside from a general skepticism I think many autistic adults feel toward the industrial medical complex.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory issues are by far my greatest and most apparent condition. It has made it difficult to get most daily tasks outside of the home done due to repetitive meltdowns. Grocery stores are far to loud, bright, and packed. By my senior year of highschool it was too overwhelming for me to make it through the day most of the time, I would end up so exhausted I would have to go home due to the pain and exhaustion. I also experience dietary restrictions due to sensory issues which makes is harder to stay healthy.
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Name	Anonymous
Demographic	Autistic individual
Response	I have 16 diagnosed conditions that affect nearly every system in my body. This has made it incredibly difficult to receive an autism diagnosis because every computerized test marks me as "malingering." These supplemental tools are a hinderance to autistic individuals with physical health conditions because they were not created with this possibility in mind. I am unable to work or participate in most activities I once previously enjoyed as my health has declined over time since I have been required to to work through any physical discomfort. Due to taking rules and instructions literally, as is notable in autistic individuals, I pushed my health to the point of no return. Not only is it difficult to navigate our society with physical health conditions, having autism on top of that makes our systems incredibly inhospitable for me and causes significant distress on a daily level.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	For me specifically, gastrointestinal disorders lead to nausea which leads to syncope episodes that may still be listed as epilepsy. I have to always be prepared for fainting episodes, and make sure that I am surrounded by those who will respect my wishes when I do faint. I have never slept "normally" and often end up in a cycle of awake in the evening, and fatigued all day. I also suffered from sleep paralysis during many transitional periods in my life, I am sure due to the unique challenges I face and how stress inducing it can be. I am highly sensitive to many external stimuli, especially light sensitivity, sound and volume sensitivity, misophonia or a sensitivity to chewing sounds and repetitive noises, as well as something that shows up similar to contamination OCD. These sensitivities come with intense skin reactions that appear more like an autoimmune disorder. I am also frequently bruised because of "clumsiness" and at age 16 I had surgery on both of my legs due to mobility issues and misalignment when growing.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Myself and my father (now deceased) have always had sleep disturbances. He was unable to fall asleep without medication, and even then, was not able to stay asleep for longer than a couple hours. I typically only sleep in one-three hour bursts throughout the night. My father and my sister both had childhood epilepsy which was under control post puberty. I was diagnosed with celiac disease, postural orthostatic tachycardia syndrome, and ehlers danlos syndrome. Myself and my father have extremely weak joints especially in the knees requiring reconstructive surgery.
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Name	Anonymous
Demographic	Autistic individual
Response	Dysregulated Immune System and not being able to stay healthy. Ehlers Danlos and chronic fatigue and not having proper accommodations like extra sick days from my job as a public school teacher.
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Name	Anonymous
Demographic	Autistic individual
Response	I am hypermobile, and because of a lack of interoception (the ability to sense internal signs from the body) i do not know when i am hurting myself by sitting on my joints in ways that could cause great problems down the line. i do not have this but my friends with autism all have sleep disorders/disturbances of some variety, constantly waking up at night and other problems. sensory issues are a huge part of why i cant do certain things, i had to quit a test i had for school cus the brightness of the room we took it in. i wear headphones constantly to help with noise
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Chronic fatigue means that the autistic individual, who needs more time to handle managing everyday life tasks, has even less awake time during the day to take care of the admin of life, from personal hygiene to keeping up with home repairs. Without significant support for the everyday tasks, there’s little time to improve in any other area of life, including interpersonal relationships, which, for an autistic person, is difficult without time and energy constraints. Not having a safety net of relationships makes the person more vulnerable to other unfavorable outcomes, including domestic abuse.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Some of the most common issues are comorbidities of connective tissue disorders, Ehlers-Danlos being the most common categorization, which causes widespread issues often misattributed solely to Autism without further medical evaluation. EDS is often the etiological baseline for GI Issues, autonomic dysfunction and dysregulation, as well as sleep disturbances, and autoimmune dysfunctions and disorders. The comorbidity of EDS with autism needs further evaluation and further study to correctly address the systemic concerns that present with this disorder, particularly in the autistic community.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Hypermobile Ehlers Danlos Syndrome and Dyspraxia
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sleep apnea has been debilitating at times, and took a long time to diagnose because as an autistic person, interception is limited, so it was difficult for me to discover cause and effect of the tiredness I felt for years. Sensory challenges make work and home life extremely difficult. Gastrointestinal challenges make relationships difficult, because it's hard to tell if I'm just experiencing the discomfort of digestion, or distress due to communication challenges (again, interception challenges and difficulty identifying cause and effect.)
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Name	Anonymous
Demographic	Autistic individual
Response	I don't like that. This question is phrased for individuals to speak for all autistic people. All autistic people are not the same and that needs to be recognized and it is harmful regardless of intention to ask when autistic person to speak for all autistic people. In my personal experience, the most significant challenge of having co-occurring physical health conditions as an autistic person is not being able to afford care that I know would help me. We can't get care for everything, but for the things that are physically accessible to us, it's important for them to be financially accessible as well. There's not enough financial protection for autistic people, especially those with co-morbidities
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Name	Anonymous
Demographic	Autistic individual
Response	POTS, this condition is well known to occur in neurodivergent individuals and women. It is grossly under diagnosed and has no cure. Physicians need more training in how to detect it and specialists need to learn how to not blame the symptoms of POTS on anxiety. A patient will see on average 7-10 doctors before receiving a diagnosis.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Managing co-occuring conditions can become a game of whack-a-mole, where you only have the energy to manage some symptoms at a time, leading whatever does not have your focus to become worse until you must direct your attention towards it. This is exhausting and pulls energy away from external responsibilities and self-maintenance.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenge would be navigating the medical field. I've been advised that we "don't question the doctor" despite other factors. Doctors, in my experience, do not like patients who ask questions or who have researched their condition. They are deemed a challenging patient or "pill-seeking" because they know that ADHD is comorbid with Autism. I already have a hard time advocating for myself due to my own social adversions and add to that a professional who refuses to hear me or, even worse, infantilizes me? They here autism and start to change their behavior whether they think it or not.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	GI issues as well as hypbermobility and connective tissue disorders. The high comorbidity with Ehler Danlos Syndrome impacts all inner organs and especially the heart. POTS is also highly comorbid and can cause signifcant harm when left untreated. There are also significant instances of physical harm being misidentified by the autistic individual as a mental health issue (Ex: high blood pressure misidentified as anxiety), leading to long-term 'work' in therapy without progress.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Gastrointestinal issues and sleep issues make it hard for me to be at my job consistently, as I don't get any more sick days than anyone else.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory processing disorder makes life very challenging. Every new sound, smell, visual, sensation, takes energy out of me. When it becomes too much my brain cannot function normally anymore. I cannot think and all I want to do is hurt myself or run away. It is very physically and mentally draining, I have excessive sleepiness. It makes leaving my house difficult because I know any location could send me into a spiral. My gastrointestinal problems cause me discomfort every day. I get terrible heart burn where I am in so much pain I can't do anything.
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Name	Anonymous
Demographic	Autistic individual
Response	I have had two twisted blood vessels in my body. One in my brain which cause seizures and one in my right ankle which limits my mobilty and ablitly to work. Also, my sensory issues which limits where I can work are bright lights at night, loud noises, and several textures that can cause meltdowns and shutdowns.
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Name	Anonymous
Demographic	Autistic individual
Response	Co occurring conditions exacerbate existing sensory issues, can lead to more instances of meltdowns, and can be increasingly difficult to manage because of executive dysfunction and the variety of ways autism can make it hard to manage daily life. It can also be especially challenging for example when it comes to food sensory issues that limit the diet that can directly conflict with the dietary requirements of some comorbidities like diabetes. Many safe foods are heavy in starch but that's not something a diabetic can process in significant quantities without big effects on blood glucose, and not being able to eat a safe food can mean not eating at all which is also detrimental.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory issues with food, hypermobility, ehlers danlos syndrome, fatigue, migraine, visual disturbances, gastrointestinal problems, bladder problems
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Health providers dismiss symptoms of co-occurring physical conditions as being “anxiety” or other mental health aspect of Autism, and refuse to consider co-occurring physical health conditions as separate, treatable conditions. It’s treated like it’s all just the autism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Extreme fatigue from constant masking. Gastrointestinal disorders, hemorrhoids & fissures Hyper mobility that NO ONE will acknowledge leading to repeated physical injuries/dislocations/surgeries. Inability to properly gauge pain. Skin picking and hair pulling especially when agitated. Inability to self-regulate body temperature - puking/lightheaded/full body muscle cramps. Burning tears, eczema, POTS, cluster migraines, ARFID - malnutrition, y’all messing with our food. Irregular mensus/cysts leading to ablation. Inability to stand still without pain. Delayed circadian rhythm leading to sleep deprivation, irritability and decreased cognitive functioning. Easy bruising & falling, rolling ankles, back pain. PAIN, anxiety, depression, CPTSD, Suicidal Ideation, crisis. i’ve struggled hard to maintain the will to live since 2019. Easy victim for allistics/narcissists to hurt and take advantage of (rape, manipulation, abuse) terrible teeth even with good hygiene and regular dental visits (11 crowns, 2 root canals and TMJ that makes my dentist wince). auditory processing delay, hear everything and nothing. overall desire to escape capitlistic hellscape and rage over lack of bodily autonomy and yall killing women to protect parasitic tissue that is not viable Without the host. yeetus the fetus and codify it.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I have had GI problems my entire life, specifically IBS, chronic functional abdominal pain, and gastroparesis. Each of these conditions are exacerbated by stress. I also have narcolepsy making my sleep quality very low. It impacts my ability to mask when I interact with others. My sensory issues were worse as a child than they are now. These issues were mostly sensory issues with clothes. I currently do a lot of sensory seeking behaviors and fidgeting helps. One of my sensory seeking behaviors that is negative is skin picking. The aftermath affects my self esteem and willingness to be social.
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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	Sensory disorders. We have many diagnosed autistics in our family and some with only the sensory disorders. Also sleep disturbances. Also, from the outside, for the adult males, I would say bursts of violence or anger. I am self diagnosed, and something that I don’t see anywhere but that other autistics do talk about are the nightmares that go all night. I have always had vivid nightmares, many each night, all night long, that I remember, ever since I was a baby. Another autistic adult male in my family has the same. Stays up all night and sleeps all day. Only one person has been clinically diagnosed so far but there are clearly others in my family that are “less severe” and yet have many issues, like meltdowns, depression, etc..
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Name	Anonymous
Demographic	Autistic individual
Response	Getting a medical professional to listen to you and treat you for the things you’re dealing with. I’ve been dismissed and misdiagnosed. And also being dismissed by co-workers and supervisors as if I’m just complaining or lazy. Not being taken seriously.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has needed both clonidine and melatonin in order to fall asleep and stay asleep since he was 5 years old. He didn't sleep through the night until 17 months and barely napped. The lack of napping was commented on by the daycare provider when he went there at 3 months. He also has movement issues, specifically with bilateral movement and small motor skills. He also has trouble running.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Failure of medical professionals to understand the comorbidity of various physical conditions and autism. Lack of education on how autism affects bodily systems like the GI tract, or vision, or connective tissue.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	For ne, it's gastrointestinal troubles.
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Name	Anonymous
Demographic	Autistic individual
Response	sleep disturbances, pmdd, sensory issues
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Name	Anonymous
Demographic	Autistic individual
Response	GI disorders, sleep disturbances, epilepsy, sensory and motor challenges, Ehlers Danlos Syndrome, Congestive Heart Failure, POTS, low muscle mass, autoimmune, migraines, poor interoception
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges caused by co-occurring physical health conditions in autistic people is being able to communicate a need or asking / needing assistance and all co-occurring physical health conditions not be brushed away as just another symptom of autism. The level an individual is at on the spectrum can affect their ability to communicate effectively based on their verbal ability, the way they communicate, etc. Another challenge is " is this a symptom of autism or is this something else all on its own?". Whether an individual can communicate verbally, through sign language, written word, tablet/ai, can significantly impact the individuals ability to live a life that accommodates their existence rather than alienating them for being different or incorrectly labeling them as defective.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I have a child that is 4 years old Level 3 autism. At the moment we are learning as a family how to navigate his physical health conditions. I would have to say the most significant challenges are differentiating between if my child is stimming or if he is having a seizure. He struggles to sleep. He can go days without sleeping well maybe an hour or two a day of sleep which doesn't help with his episodes of severe stimming. Or outbursts.
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Name	Anonymous
Demographic	Autistic individual
Response	Lack of care & treatment is a large hurdle. I have a gastroenterologist but insurance won’t cover the medication prescribed. Insurance also won’t cover treatment for sleep disturbances, primary care doctor is unable to treat balance/blood pressure (POTS). I’m not able to live in an environment where I can control the sounds, which can lead to dysregulation. My insurance also wouldn’t cover physical therapy where they identified hip alignment/structural issues causing pain, though the physical therapists didn’t seem to be trained to work with/identify connective tissue disorders. I am in constant pain, experiencing likely nerve damage, am constantly exhausted and unable to care for basic needs, having abandoned most self care so as to expend my little energy where I am barely work a job to survive. My brain is on fire, everything hurts, I am exhausted, & there is no help or assistance or relief.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	If I’m listened to at all, it is after an exhausting amount of self advocacy that is only possible because I am high masking and a registered nurse. Cost of healthcare is a major issue as I suffered major burnout during/after the pandemic and cannot afford to recover. I remain undiagnosed for fear of losing rights. Our society has made it so that I am required to expend all my energy in order to feed the machine of capitalism. I have no bandwidth to include relationships, passions, hobbies, physical activities, or anything that could bring me joy. I hate it here so much.
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Name	Anonymous
Demographic	Autistic individual
Response	The health care system seems to be hostile to autistic people. Communication with health care providers is severely constrained, often limited to voice phone calls or face-to-face interactions. Interactions are usually very brief. Since I require some time to process information and perform best in written communication, this is a barrier. My attempts to get health care providers to accommodate my communication needs have mostly failed—and health care providers often claim (contrary to HHS guidance) that HIPAA prevents them from accommodating patient communication needs. Doctors and nurses don't know how to interact with autistic people, nor do I know how to interact with them. There isn't time for either of us to learn. Even when I tell them that this is not the case, health care providers seem to assume that the communication skills they've developed for interacting with allistic patients will still work just fine. The workload for coordinating care is offloaded to patients, but I'm not well equipped to handle that workload, particularly when my communication needs are ignored. There seems to be an assumption that patients have the social skills to navigate a byzantine bureaucracy that seems to confuse the health care providers themselves. There doesn't appear to be any system in place to help those of us who don't have that expertise and don't have close relationships with people who can provide it. We're just left to fail.
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Name	Anonymous
Demographic	Autistic individual
Response	I suffer from migraines that often align with when I am very stressed out or am not getting quality sleep. Traditional migraine medications do not work for me and doctors don’t seem to know the cause. I think it is related to autism because of my inability to relax muscles, so my neck and jaw are often very tense and I’m unaware. It may be a connection between hypermobility, autism, and muscle tension. The frequency and severity of the migraines make it very hard for me to work and financially support myself.
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Name	Anonymous
Demographic	Autistic individual
Response	Social isolation. By in large, being disabled is an extremely isolating experience. People do not care. People do not WANT to care. As much as we are taught that eugenics was a german mistake, and one long ago at that, we are still useless eaters to most Americans, not to mention government institutions. After that, it would be the complete absence of a serious social safety net. Yes, one TECHNICALLY exists but it is famously difficult to access and, even when you DO manage to get approved for government aid, your ability to actually live stablely is, pardon the completely intended pun, crippled. You cannot save, you cannot work even if you wanted to and thus it is nearly impossible to meet people because most non-labor social spaces are not remotely disability friendly. Spaces like libraries are dying and it is because neoliberalism, policies of disregulation and the calcification of tech industry markets, are killing them. The hardest part of being disabled is living in America.
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Name	Anonymous
Demographic	Autistic individual
Response	Challenges I face are sleep disturbances with joint hyper-mobility, sensory and motor processing. With sleep disturbances I am only able to sleep for 1-3 hours at most a time and total 6-7 total hours of rest and this is typically due to my hyper-mobile joints being held into a difficult angle with consistent pressure, causing pain and small loss of circulation occasionally which wakes me up throughout the night. I typically can fall asleep after repositioning but immediately fall into REM sleep and will most often get to a deep sleep shortly before I need to wake up or not at all. This has led to processing of sensory information and motor skill to lack throughout the day, requiring more energy to complete ‘simple’ tasks and chores that after one or two tasks, my body is ready to rest and is worsened on days that my joint pain is exacerbated. I already have extremely slow processing speeds (per my autism evaluation) that is exacerbated when I have had little sleep and and no additional naps through out the early part of the day that it effects my ability to go to work some days. Resulting in needing to call in or work small amounts from home. The lack of rest also effects sensory processing and can in turn cause a much lower threshold for what I can tolerate either in lighting, auditory, or textile sensations which cause can a meltdown or shutdown at any given point but most often at the end of my day.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Severe constipation Depression
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Name	Anonymous
Demographic	Autistic individual
Response	Ehlers Danlos syndrome often co-occurs with autism. It can cause physical joint pain as well as problems involving posture, exercise intolerance, and dental issues. Many people deal with stiff joints as a result of hypermobility.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	Personally, I struggle with insomnia, digestion, and joint pain.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD Ehlers-Danlos Syndrome Insomnia Sensory Sensitives
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My child and I have hEDS, sleep issues, GI difficulties since birth, sensory differences, and difficulties with proprioception as well as introception. The sensory differences and sleep issues make everyday life very challenging on their own. My child has to be homeschooled because they had so much trouble being in any school environment we tried. Between the noise being overwhelming, only having enough sleep to function in a school environment without having multiple meltdowns less than 50% of the time, and constant stomach aches interfering with their schooling… we had to accommodate them and home was the only place we could do so. We have also had to take my child to the ER multiple times due to accidents resulting from their lack of proprioception awareness. Working a 9-5 is not a viable option for me due to how inconsistent my sleep is as well. I have tried so many medical interventions and lifestyle changes but nothing helps enough to function like a neurotypical.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Mouth breathing Trouble going to sleep.
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Name	Anonymous
Demographic	Autistic individual
Response	Physical health issues can contribute severely to overstimulation and the ability to do basic tasks. Being in pain can be either unnoticed or unbearable. Doctors do not take you seriously or believe any complaint you have.
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Name	Anonymous
Demographic	Autistic individual
Response	The challenges that come with having both autism and other physical health issues are really complex and deeply personal. For someone like me, who's autistic, everyday things can get a lot tougher when you're also dealing with stuff like acid reflux or sleep problems. These issues can make the sensory overload that's already a part of autism even more overwhelming. It's like you're constantly trying to juggle feeling uncomfortable with trying to cope with the world around you.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Accessing necessary testing and treatment— it can be expensive, it can take considerable time to get diagnosed with co-morbidities, and then treatment is either minimal or just a bandaid. And then sensory and motor challenges then make it additionally challenging to access care.
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Name	Anonymous
Demographic	Autistic individual
Response	I've had chronic insomnia since I was a child, as well as acid reflux, and hemorrhoids. I've had asthma since I was born.
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Name	Anonymous
Demographic	Autistic individual
Response	Sensory challenges have been the most significant for me, especially in workplace situations. I found it impossible to work in a noisy, artificially lit environment with people all around me. It takes enormous amounts of energy to keep on task and mask my physical and mental discomfort.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sensory and motor challenges, hypermobility and proprioception issues, IBS / IBD, autoimmune disorders. High lack of recognition for female autistic individuals and their different ways of displaying symptoms.
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Name	Anonymous
Demographic	Autistic individual
Response	Inability to explain what is wrong, inability to verbalize how much pain we are in/our symptoms, increased pain tolerance that can lead to making injuries or illness worse, symptoms of illness/colds can cause sensory issues and lead to meltdowns, feeling useless and unable to do what everyone else can.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory issues, changes in pre frontal cortex leading to lesser executive functioning contributing to difficulties managing daily tasks and creating delayed emotional processing (ie takes days to weeks to process a single highly emotionally charged event), constantly fatigued, POTS, Ehlers Danlos, Binocular vision disorder, PCOS, Hashimotos, Sjogrens, Auto-immune disorders, low immunity to common colds/flu etc
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Name	Anonymous
Demographic	Autistic individual
Response	I don't feel qualified to speak on behalf of others experience. However, I can say that there are many autistic individuals who live with Ehlers Danlos Syndrome and its co-morbid conditions Mast Cell Activation Syndrome and Postural Orthostatic Tachycardia Syndrome. I am one of those individuals. For me my most significant physical health challenges are joints slipping out of place due to hyper mobility and Ehlers Danlos Syndrome as well as gastrointestinal issues related to both Mast Cell Activation Syndrome and Hyper mobile Ehlers Danlos Syndrome.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My sleep disturbances and insomnia are some of the worst symptoms. Followed by gastrointestinal problems such as IBS, diarrhea, constipation. Sensory issues are also a problem but more manageable for me.
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