Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 3

Question: What are the most significant challenges caused by other conditions that co-occur with autism, such as learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities?

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	I have ADHD and it's difficult to "do capitalism" very well. Traditional employment is hard for me. I can swing it okay, but I'm often extremely exhausted and feeling resentful that our world doesn't afford other ways to survive aside from having a job. I can't force myself to do anything immediately and it takes me a long time to get anything done. I get distracted and derailed by other "side quest" sort of tasks along the way.
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Name	Aaron
Demographic	Autistic individual
Response	I have trouble communicating with my partner on occasion if we aren’t directly blunt or specific about our topic. I have to ask extra questions and take a moment longer to think and process what is being communicated to me sometimes which can cause me to miss details. I tend to have to ask a lot of questions to make sure I’m doing something correctly, and will often repeat myself to make sure I get my point across.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	I am a verbal autistic adult, but recognize that many people with autism have communication disabilities that limit their lives significantly.
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response	I don't understand tone of voice very well and I can't read between the lines. I'm very gullible and I take things at face value. People have taken advantage of this before. People have gotten angry at me for this. I get looked down upon for asking clarifying questions, but when I don't ask them I don't do things exactly how they were intended to be done. It's like everyone else is a mind reader and I'm just doing my best to keep up. I've also offended people by talking to them the way I am talked to. I mimic the way I am spoken to during conversation and I have been told that I sound incredibly condescending when I'm trying to be comforting.
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Name	Abi Lea
Demographic	Autistic individual
Response	Dyspraxia has made it very difficult for me to learn how to drive, and as a result I cannot drive and do not have a drivers license. Some of the challenges experienced by other autistic people with co-occurring disabilities, especially those with high support needs, include: not having access to AAC devices and therefore not being able effectively to communicate with others. Other people assuming incompetence because of their multiple diagnoses and therefore not providing them with access to the same educational recourses or activities as their peers.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Life skills training is very poor and many adults with NDD are restricted to live at home.
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Name	Adam
Demographic	Autistic individual
Response	Learning: for me in K-12 and in college, the harder part for me to all of it was the pace and the memorization they did not give me ample time to learn it, and digest it. Trying to memorize things just to pass a test for me and the other people I knew that are autistic. Just does not work. Communication: communication is very hard. I do great on a one on one basis, put me in a group chat with three or more people and I freeze because I don’t know the proper way to react or the proper way to engage in conversations:
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Name	Adam Wehn
Demographic	Autistic individual
Response	Communication difficulties, for me I am best able to communicate my feelings and needs in writing. But it has been a struggle to get so many people or organizations to allow me to interact/interface with myself through written communications such as email. With a healthcare provider I had to reach out to their umbrella healthcare group disability resources customer service section to get them to stop calling me, which is something that while I can do it speaking over the phone is very nerve wracking for me and induces anxiety and stress.
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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	Your panel asks how autism services could be improved to better address co-occurring conditions in this population. It must include changes and training to the social security phone and direct customer support staff. Social Security's inability to efficiently process and assist their most vulnerable consumers with consistent and knowledgeable information is deplorable. The maze of paperwork and lack of county/state sharing information creates a maze of misinformation, leaving many without funds. In April 2023, I contacted Congressman Jared Moskowitz's office for HELP! My son with autism had his benefits rescinded in February 2023. With his office's intervention, he was reinstated in July 2023. What will it take for the Social Security Administration to be able to talk to the other sub-departments of Social Security? We live in the 21st century with computers, email, and advanced technology, yet Social Security cannot streamline from one department to another. How many requests did your office and colleagues have to interfere with on behalf of your constituent's Social Security matters? Reform is required; we must do better for our most vulnerable. A broken system is no longer acceptable. Thank you for your consideration in this critical matter.
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Name	Adrienne Benjamin , Parent/Gaurdian
Demographic	Family member of an autistic individual
Response	Intellectual disability plus autism creates a situation of chronic difficulties for my child. Developmentally, she remains a 2-3 yr old. She will always need 24/7 care, cannot be left alone, needs help with all aspects of personal hygiene. Level 3 Autism is present in approximately 25-35% of those with Autism. Once these kids age out of school ( 22yrs), there are no mandated services. Nor are there many agencies that have staff trained to work with people on the severe end of the spectrum. Parents dont live forever. Most agencies are desperately understaffed ( primarily because of low pay ).
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Name	Advocates of Autism of Massachusetts
Demographic	Representative of advocacy organization
Response	This question is confusing as it is difficult to separate these “co-occurring conditions” from autism, which is a developmental disability and in many on the spectrum is characterized by cognitive challenges and communication and learning disabilities. Depending on the severity of a person’s autism, their ability to live independently and engage in meaningful employment is significantly challenged. It is hard to designate certain challenges as more or less significant when one has a pervasive disorder that affects all aspects of one’s life and relations to other human beings and the environment.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response	I struggle to express myself verbally and am significantly behind socially.
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	Approximately a third of individuals with autism are non-verbal, or semi-verbal, and cannot communicate effectively with even the best augmentative communication technology available. Approximately a third of individuals with autism (not necessarily the same third) are intellectually disabled.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Auditory processing and executive functioning
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	I have difficulty visualizing things that are not definite. I failed college because I was struggling with communication and reading comprehension. I now know I can understand and trust numbers more.
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Name	Alan Owen
Demographic	Autistic individual
Response	I personally only have issues with communication, so I can't comment on the others. That said, communication can be difficult sometimes, especially when social anxiety is playing a part. Not having my voice be heard because I'm not making enough sense to the listener is probably the biggest challenge I face.
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Behavior disturbances, communication delays, limited functioning, lack of understanding social cues, lack of environmental awareness, lack of self awareness, sensory processing disorder
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Name	Alex
Demographic	Autistic individual
Response	Intellectual disorders that cause us to process things faster, however people don’t appreciate that we process things faster so they fire us from jobs. Communication struggles. Learning disabilities due to lack of leeway in the standard school system
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Name	Alex
Demographic	Autistic individual
Response
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Name	Alex
Demographic	Autistic individual
Response	Many learning disabilities associated with autism aren't screened for early enough (if at all) thereby permanently stunting our full potential. This impacts our economic success as well as our self esteem. Even worse disabilities can put us at the mercy of whomsoever has the shortest patience that day.
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Name	Alex Curtis
Demographic	Autistic individual
Response	Learning disabilities
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Name	Alexandra Carlson
Demographic	Autistic individual
Response
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response	Difficulty understanding education and care information that is not written in plain language or in an accessible way
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	Learning disability in mathematics since childhood, intellectual impairment and was speech delayed in childhood and fine motor skills delayed.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communicate issues and lack of access to accessible communication options Lack of appropriate educational support for co-occuring disabilities
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Name	Alia Campagnone
Demographic	Autistic individual
Response	Communication disabilities.
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
Response	not being able to socialize without extreme effort, never feeling accepted/constant fear of rejection, unable to maintain employment, all side effects from medication, broken relationships,
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
Response	Our son's learning disabilities contribute significantly to his anxiety/depression on a daily basis. He continually hears and sees that he is slower and less able than his peers. When supports that help him have been found, staff has not been helpful in making it easy for him to access them. IEPs do not seem to get read by anyone other than the RTSE. Because we remained in the dark for so long about his ASD, he struggled on his own with social communication, both with peers and adults. When he needed to break-off from a friend who had become a bully, trying to do so put him in a traumatic meltdown. When overwhelmed by school, he was often unable to speak, so he could not advocate for what he needed with adults. When he would try to do so, the typical response was that he was overreacting and should just “get over it.” Better paraeducators were at least kind, but others were not only untrained and uneducated enough in the subject but uncaring as well.
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
Response	Never understanding the social situations no matter how they are explained. Constantly being/feeling on the outside. No one seems to care.
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response
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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	In people with ASD/NDD, there is an especially complicated interplay between the behavioral phenotypes of autism and other health conditions. For example, the inability to communicate discomfort or pain can lead to delays in receiving treatment for things like earaches, dental problems, appendicitis, or other conditions, leading to unnecessary suffering and worse outcomes. The inability to understand language or follow instructions becomes especially dangerous when individuals with ASD have other conditions like epilepsy. This can lead to any number of additional problems, such as poor compliance with treatments or injury from falls. In fact, this can be what necessitates having a caregiver within arm's reach 24-7. Sleep problems and behavioral challenges are an especially difficult combination. Individuals with self-injurious, aggressive, destructive behaviors, or other challenging behaviors, require a very high level of support in the middle of the night, when parents need sleep and other caregivers are not available. The real issue is that autism greatly magnifies the impacts of other health conditions.
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication issues are the hardest for me. Partly due to trouble recognizing facial expressions and tone and partly due to auditory processing disorder
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Intellectual disabilities and learning disabilities make school very challenging. They often don't get the support they need in the school system. Social challenges can also be difficult if they are not able to keep up with their peers.
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Social isolation and loneliness, stereotyping about what is and what is not a sign or aspect of autism spectrum disorder, time management, hygiene skills, and emotional expressiveness.
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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	For my family member, we had a tough time finding answers to her physical, mental, and learning disability in the education system. Tight schedules, as well as expectations that everyone learns the same, pushed her into private schools. They also had no answer, and she graduated with a GED rather than a high school diploma. It has been hard on her self-esteem and in her job search as a young adult.
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Name	Amanda Kulesza
Demographic	Autistic individual
Response	Communication disabilities
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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	Auditory processing disorder. Sometimes the words just are not wording. "Can you hand me the remote" should not sound like "The cat became a stripper". Why does that happen? Also, why are most of us dyslexic? And why isn't this being screened for in the classroom?
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I have the learning disability, dyscalculia. I am struggling to get through college, and unfortunately my health insurance won't cover an adult diagnosis so I can get accommodations. Healthcare and mental healthcare in the US is so expensive, and insurance companies do the bare minimum, so unfortunately people like me just try to struggle through it. I'm honestly considering dropping out of college at this point.
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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 learned how to hide my communication problems very young, but I still struggle to understand rules and social norms that aren't expressly stated. This often leads to me being an outcast at work and school because people don't like me, no matter how hard I try. When I manage to fake my way into having friends, it makes me so tired that I can either do the things I need to do in order to be healthy or I can socialize. I don't get all of the above. It makes me so tired that I get burnt out and stop enjoying things or engaging with things and my depression gets exponentially worse. I often have to isolate for long periods after social interaction to try to recover.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	I do not have any accompanying intellectual or communication disabilities. The only learning disability I have is ADHD, but my autism compensated for that just as my ADHD compensated for my autism. Where my ADHD couldn't focus, my autism usually could, and my ADHD allowed my brain to have an easier time switching between subjects. Because I was hyperlexic and have high verbal faculties, I don't experience many of the communication issues that other autists do. That being said, I want to highlight that just because an autist may seem unresponsive, that does not at all mean they are not experiencing a rich inner life nor does it mean that they are not communicating. Every autist communicates in their own way - gestures, AAC, echolalia, neologisms. All autists should be given the time and space to communicate in any way they see fit.
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	Overall, comprehensive oversight is a significant challenge. Coordination between settings such as schools, behavioral health care, mental health care, and pediatric care is a challenge as complete data and information is not always in one place to be able to make the right decisions in each setting. Lack of inclusion, communication access, and transition to adult services are significant challenges caused by co-occurring conditions in autism. Employers and educational systems are ill-equipped to support people with multiple disabilities in various settings, particularly in providing adaptive transportation. The presence of an IDD can result in bias and presumption of incompetence in people with lower cognitive and/or communication skills leading to a lack of inclusion. Families also often experience significant challenges in accessing augmentative and alternative communication or appropriate speech therapy support for children and youth with high communication support needs. Finally, better support through early adulthood is needed in recognition that developmental timelines can vary greatly and many people with autism continue to progress developmentally beyond the typical school age years. Some adults reach milestones such as driving, attending higher education, employment, or living independently at later ages than 18-21, yet school and adult transition programs end at these ages, leaving families with few supported options to help individuals continue to make progress.
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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 the treatment complexity that can occur with the combination of autism, co-occurring physical health conditions, and co-occurring mental health conditions, medical decision making can become a significant challenge. Depending on type of learning disability, developmental disability, intellectual disability and/or communication disability, extensive visit time may be needed to thoroughly review all treatment options in a way the individual can participate in their own medical decision making. This highlights the need for team-based care, but unfortunately, access to team members like BCPPs remains limited by variability in state legislation and reimbursement. Additionally, some individuals may have guardians who act as medical decision-makers. In these cases, coordination with guardians, caregivers, and the individual is crucial to ensuring successful treatment and monitoring of all co-occurring conditions.
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response	No matter how hard we try to be clear with what we say other people add implied meanings that aren't there so we're never understood.
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
Response	Emotional intelligence
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Name	Amy Cox
Demographic	Autistic individual
Response
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Not knowing what my son is thinking, if he is hurting, what hurts and how I can help
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Name	Ana Pereira, Mother of an amazing autistic boy
Demographic	Family member of an autistic individual
Response	He has very limited one word vocabulary. due to communication issues he has many break downs (tantrums) and displays frustration and impatience.
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Name	Ananya Rishi
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- Accommodations in school. - Feeling understood and fitting in. - Feeling behind compared to others in social settings. - Difficulty accessing same events, opportunities, experiences as neurotypical individuals. - Time management.
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Name	Andie
Demographic	Autistic individual
Response
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Name	Andrea Barlass
Demographic	Service provider, health provider, or educator
Response	I think that the symptoms/behaviors/characteristics that are common or typical of individuals with ASD often get misdiagnosed as ADHD, anxiety, and ODD. I also think that ASD can be misdiagnosed for some individuals who may struggle socially, be anxious, or not fit the stereotypical "norm". A diagnoses of ASD can lead to difficulty in relationships for children, teens, and adults which is challenging and can lead to additional mental health conditions like depression and anxiety. The symptoms/traits/characteristics of ASD also create challenges that require alternative interventions for teaching. If someone isn't skilled in working with an individual living with ASD or understand that person's developmental capacities, the individual will have barriers to learning.
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	Communication, socialization, isolation
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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: For me, communication disability is where I struggle. I am much better communicating via writing. I struggle to retain spoken instructions and struggle with Auditory Processing Disorder which makes it hard for me to understand spoken words quickly. This makes working hard as I am expected to listen and understand at a quicker pace than I am able. It affects my social life as others don't often have the patience to give me the time I need to understand, or the extra effort it takes to give written instructions.
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	Communication disabilities. Because there is no medication that I’m aware of to alter the mind to understand societal restrictions and laws and because there is a common denominator for people on the spectrum to not understand these laws, what can we do for them? They often appear to look and act strange. And although there is no intent for foul play; rejection, isolation and bullying can cause a meltdown because of misunderstanding. I was told by someone who works with my son that he needs to reside in a place that does’t exist. Unless he is in a safe place, not to just protect unknowing people in the community but mostly to protect him from retribution from the community he is just being set up for failure or worse. My 43-year-old son with autism and co-occuring mental health issues was in county jail from 4/7/22 until 9/2/22 when he was moved to Ann Klein Forensic Hospital in Trenton until 10/13/23 when he was moved to Trenton Psychiatric Hospital where he remains. The optics of the police report has been misinterpreted and exaggerated, being seen outside the realm of those familiar with ASD/MH. There's so much more but I'm over my limit. The legal system needs to get on board with professionals in the field of Autism.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	Two big ones can be dyscalculia, and dyslexia. Often these will manifest as a learning disability or be labeled as such, there is often developmental delay in stunting with physical manifestations of age not showing up until much later. For example we may get our teeth very late, we may go through puberty very late and when it manifests it's a bizarre situation where we'll go through it multiple times in our life. To those who aren't autistic this won't make sense Extreme difficulties with math for a major problem for autistic people with learning disabilities being extremely common many of them centered around math. This in terms creates more educational trauma in which the autistic person will become fearful of going to school. Anxiety which presents itself through increase likelihood of medical and in school trauma are also common.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	My spouse struggles with dyslexia, which has impeded her in school and even in her previous career work as a teacher. Physical books have words that are cramped and more difficult to read, so she usually utilizes audiobooks or a tablet, which has greater spacing. My spouse frequently flips words in sentences around and also has a lot of difficulty with even simple math, especially multiplication and division. My spouse struggles with some communication. She has a hard time reading and understanding social cues and sarcasm. Her thinking is also literal so I have to try avoiding metaphors or speaking around a subject.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response	There are many things that make living with Autism incredibly difficult, but the problem is NOT that I'm Autistic. The problem is the lack of patience, willingness to learn, and a severe lack of resources (at least here in the U.S.). There was a study done where researchers observed allistic participants' reactions to an Autistic person. They found that the allistics (on a scale of likability) assigned a lower rating to the Autistic participants as opposed to their allistic counterparts. This study supports the hypothesis that allistic people are more likely to dislike us rather than see us in a favorable light. Now, to be fair, the person doing the rating was not informed about who was Autistic and who wasn't. This could mean that their distaste for us occurs subconsciously. So, the hardest part about being Autistic (in my personal opinion) is how much everyone dislikes/alienates you for literally no good reason. They don't even know WHY they don't like you, they just know that they don't like you. Here is the URL address to the study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8992906/ A lot of us Autistic folks struggle with rejection sensitivity dysphoria which basically means we can't help but take rejection VERY personally. This includes being rejected by potential employers, potential friends, family members, universities, potential romantic partners, etc. In other words, we are naturally more sensitive to rejection, yet we experience it almost everywhere we go.
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	When these conditions co-occur with autism, differential diagnosis can be particularly challenging due to overlapping symptoms. Additionally, addressing the needs of autistic individuals with intellectual or communication disabilities poses unique difficulties, as understanding and responding to these needs can require specialized knowledge and accommodations. Unfortunately, many autistic individuals have limited access to specialized care, hindering timely intervention and support. Co-occurring intellectual, developmental or communication disabilities can also cause challenges in school, employment, post-secondary education, and community programs. Tailoring educational plans to accommodate diverse needs requires specialized expertise and resources often lacking in schools and community programs.
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	Learning differently!! It saddens me that we barely capture their potential because we can’t seem to put enough resources to teaching and training differently. My son learned to read early with musical videos. But this method is not available in other areas.
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I am fortunate that I do not have co-occruing intellectual dissabilities. While my natural communication is "Autistic" I have studied communication obsessively to be able to "speak" the neurotypical language. I have a second degree in communicaitons. I consider this essential to my ability to communicate professionally. I always have to go the extra mile to communicate with neurotypical people because they are too inflexible and self-centered to meet me half way and learn my language. Autistic people do not have a social communication dissability. They just socialize and communicate differently. Autistic people communicate perfectly well ammong one another, just like neurotypical people do. But because neurotypical people are the dominant culture, they force Autistic people to do all the code-swithching. (and they have the nerve to say WE are the "inflexible" ones?!) Autistic people HAVE to accomodate neurotypical social and language norms and be empathetic enough to recognize them. Meanwhile, neurotypical people are remarkably obtuse about recognizeing Autistic communication and empathizing with Autistic people.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response	Math and Reading are given issues when dealing with Autism, but the hardest part of being Autistic for me is communication. It always feels like I am trying to translate a foreign language into anther language without ever even knowing the original language.
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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 difficulties reading and retaining what is read. I cannot understand people outside of a certain IQ range, because they seem illogical. It is a struggle to mask, and exhausting, because everyone expects me to be "normal," but I am different. Intellectually it is a challenge to communicate with others as they do not process their environments through logic, reason, critical and analytical thinking, and factual basis. I feel alone and struggle in school even as an adult. My social anxiety is so bad, I have a form of anxiety induced mutism, alexithymia, mobius syndrome, and people often misunderstand me.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disorder, intellectual disability, developmental disability, movement disorders, mobility disorders.
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Often I shut down and am unable to speak, especially when confronted by a police officer. Communication Delays make simple tasks such as paying for groceries difficult for both of us.
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response	Our son is biologically 19, almost 20 however with his significate developmental delays he is more on the level of a 6-7 year old. He is not always aware of the dangers around him and needs constant supervision. He is a wonderful young man but this does present many challenges for day to day life.
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response	Loneliness -- difficulty making friends
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Name	Ann, Parent
Demographic	Family member of an autistic individual
Response	Really?! How would you feel if you were unable to speak?
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	Persons diagnosed with Autism who have higher cognitive functioning even when they are academically and vocationally delayed have more opportunities however, the challenges related to social functioning can interfere both with success at a job and with building relationships. Education is mandated to provide educational opportunities for people with disabilities but resources in the community based programs are often lacking, particularly with the many states now experiencing teach shortages, it is predictable that the students with intellectual disability will suffer from this. Communication is HUGE. Persons diagnosed with Autism are limited by the pervasive communication deficits that they experience. While technology is becoming an increasingly more important and useful tool, many times, persons with cognitive limitations are challenged to effectively and efficiently operate their devices. Being unable to communicate feelings, wants, needs, desires, in my opinion contributes significantly to behavioral challenges and is a major impediment to independent living.
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Name	Anne Marie Price
Demographic	Autistic individual
Response	Learning disabilities.
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Name	Anne Nagel
Demographic	Autistic individual
Response
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Name	Annettr
Demographic	Family member of an autistic individual
Response
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Name	Anonymous, public schools
Demographic	Service provider, health provider, or educator
Response	Communication Disabilities Learning Disabilities Social challenges
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Name	Anthony
Demographic	Autistic individual
Response	I have dyslexia and in general have a hard time with social interaction and with normal conversation
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Name	Arianna C
Demographic	Autistic individual
Response	ADHD is one of the most common disorders that is diagnosed alongside autism
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
Response	Developmental disabilities and learning disabilities that are overlooked because everyone is just ascribed to the autism
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Name	Arushie Nugapitiya
Demographic	Other
Response
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Name	Ash Keen
Demographic	Autistic individual
Response	For me it’s my physical disabilities and how my autism makes it harder to get diagnosis and treatment
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Name	Ashleigh
Demographic	Autistic individual
Response
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Name	Ashley
Demographic	Family member of an autistic individual
Response	Communication
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Accessing community life. Autistics with additional disabilities, especially in cognition or communication, are often shunned by their peers and community.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	Additional frustrations causing emotional dysregulation.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	The invisible disabilities aspect. The general public assumes the average person is capable of a lot. Many of these challenges are cognitive and abstract/soft skills that people are just expected to be able to do. It's hard to accommodate when you're unaware and when the person may themselves not be able to inform you. Requires observation and thoughtfulness from caregivers and others in one's life.
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Name	Audrey
Demographic	Autistic individual
Response	I struggle the most with communication "disabilities", however I would argue that my communication gets misconstrued but allistics people trying to read more into what I am saying than what is actually being said, yet I'm the one who "struggles with communicating effectively" despite saying EXACTLY what I mean, and nothing more or less
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenges caused by other conditions that co-occur with autism is the socialization aspect of it. This is to say, autistic people tend to feel very alone in the world, and many of their symptoms contribute to this being the case. Not being adept at socialization leads to numerous problems in spaces where social interactions are required, such as school settings or work settings, which leads to potentially fatal burnout.
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	For me it’s communication and social stimuli; holding basic conversations is very challenging for me. Plus I get very overwhelmed by the amount of info when in social settings.
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Name	Autism New Jersey
Demographic	Representative of advocacy organization
Response
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Name	Autism Society of Idaho
Demographic	Family member of an autistic individual
Response	Lack of accommodations in the workplace or by the states in the case of licensing requirements
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Eating disorders, which are often overlooked as commonly co-occurring with autism, impact physical health (e.g., dizziness, fainting, weight), ability to concentrate, and social relationships. Many social interactions occur over a shared meal, and eating disorders can limit a person's social opportunities.
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Name	Ava
Demographic	Autistic individual
Response	Often being misunderstood or tone of voice being taken as aggressive. Trying to communicate and be received properly is very taxing
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Name	Azure
Demographic	Autistic individual
Response	Due to the format of this questionnaire it will likely be difficult for many people with intellectual disabilities to find and respond here. I personally have dyscalculia and my problem has always been getting colleges and schools to respect my request for accomodations. Professors who do not believe me will do everything possible to not allot me extra time for tests and due to their tenure or time at the college will face no consequences for it.
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Name	B
Demographic	Autistic individual
Response	I was too advanced in something and delated in others resulting in not getting a diagnosis based on childhood criteria. I picked up reading took quickly but jot speech. I was good at maths and sciences because they're hard facts but failed at language arts and social studies because they're often more nebulous in context and harder to understand and communicate on, compared to solid facts. That, along with social issues, anxiety and other co-morbid issues already talked about make school not a good place for people like me. I've tried college four times and didn't finish.
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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	Along with all of my daughter's "health issues" she also has intellectual, communication and developmental disabilities. This makes figuring out her needs even MORE difficult as she cannot tell me how she feels or what is bothering her. Also, she cannot read or write. It is a constant guessing game caring for her.
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	It is often assumed that non-speaking autistic folks have developmental disabilities which affects their independence. Often teachers and therapists are taught to consider ONE disability at a time. Children who have more than one diagnosis or educational disability label are often mysteries to school and intervention staff and often mis-served.
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	IDD but my son also has Downs. It's hard to tell from which of these it came from.
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Name	Bella
Demographic	Autistic individual
Response	All of the above in all honesty. The learning disabilities makes math extremely hard for me. And communication disabilities is worse because it means, in combination with my ADHD, I can't keep friendships because I literally forget to message people. Or don't because we don't have similar special interests.
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Name	Bella Taylor
Demographic	Service provider, health provider, or educator
Response
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Name	Bellamy
Demographic	Autistic individual
Response	If I was given a learning environment better equipped for my sensory and learning needs my life would look SO MUCH DIFFERENT. I struggled alot in school both academically and socially. However I only struggled academically when I couldn't understand directions and no one would take the time to explain it or was too overwhelmed with sensory issues to do the work.
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Name	Ben Yerys, Children's Hospital of Philadelphia
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Berkeley Fisher
Demographic	Autistic individual
Response
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Name	Bern.W
Demographic	Autistic individual
Response	ADHD Dyspraxia affects posture and balance Difficultly crossing the midline which affects reading and writing! Poor muscle tone in hands Auditory Processing Disorder Cerebral Visual Integration challenges the eyes can see but brain can't interpret Apraxia
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	They have difficulty with executive functioning which means can't prioritize, plan, organize or be dependable.
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Name	Beth Greenspan
Demographic	Autistic individual
Response	There has always been such a strong emphasis on being social, and communication skills. I have no desire or need to be social, even though I can communicate well. But it is entirely exhausting and overwhelming for me to be forced into being more like others.
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Name	Beth Malow, Vanderbilt University Medical Center
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Bethany Coop
Demographic	Service provider, health provider, or educator; Other
Response	My child is able to communicate only through his made up signs. He becomes frustrated and upset when other people don't seem to understand his needs. He has global delays which prevent him from being able to transition throughout the community without assistance, and we have to front load everything. He will never be without supports. I do honestly believe the science is out there which could have helped him become more independent. There just isn't enough providers, funding, or supports.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	All of the referenced challenges exist with HIE as an etiology for autism.
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Name	Betty Lehman, Lehman Disability Planning
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Some profoundly affected can speak but don't have abstract thinking - so they can't understand or communicate about information that is not within their lexicon and are misunderstood
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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	Communication, LD, DD, IDD
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Name	Beyza
Demographic	Autistic individual
Response	iletişim farklılığım yüzünden insanlarla kolay kolay arkadaş olamıyorum çünkü beni yanlış anlamaya çok meyilliler. bu durum beni çok üzüyor ve bu yüzden sıklıkla depresif hissediyorum. [Translation: Because of my communication differences, I cannot easily become friends with people because they tend to misunderstand me. This situation makes me very sad and I often feel depressed because of it.]
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	For us, verbal processing delays present a significant challenge and show up at school, despite high cognitive abilities.
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Name	Blair
Demographic	Family member of an autistic individual
Response	Pathological Demand Avoidance, or Pervasive Drive fror Autonomy (PDA)
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response	Comprehension is always a top concern because it hinders him in learning settings also communication and staying on topic holds my 10 year old son back
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Name	Brandy Joy Leigh
Demographic	Autistic individual; Family member of an autistic individual
Response	The systemic attitudes that view autism as a pathology. We need services and providers who do not pathologize behaviors and are more accepting.
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Name	Breana Turic
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Brian
Demographic	Autistic individual
Response	Learning disabilities with language disorders. I'm already stuck in my own head most of the time. Add to it the issue with learning/and language and it's even worse. You say and think one thing yet the wrong thing gets output.
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	I can communicate through a spelling device YET I am not believed and that is horrible. I worked so hard to learn how to spell my thought and my determination is dismissed by those that have never met me or had a conversation with me. Spelling IS a form of communication and they way I can have control in my life and live safely.
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	My son is still labeled non verbal. However still has some language. It is hard to keep up such an intensive therapy schedule. He is far behind most of his peers. There doesn’t seem to be enough government or state assistance.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	In school, many teachers didn't understand my conditions to be able to properly accommodate me, and/or ignored my conditions all together. Although college is better than public K-12 was, I still face discrimination due to needing accommodations for these and have been denied them, against ADA. As I did well in K-12 generally, I was never granted a 504/IEP either despite showing great struggle at home with schoolwork. The biggest roadblock is the mental struggle of having to be without the accommodations because it is so difficult that I often break down emotionally from mental exhaustion. Outside of education, navigating social situations is difficult as I often get misunderstood for being rude because of my tone. Or being undermined for having "childlike" and "impulsive" traits related to Autism/ADHD. I have been socially exiled in my youth and adult life because of my neurodiverse behaviors. It is often hard for me to make eye contact, sit still, not bite my lips or fidget which give the impressions that I could be impatient, afraid, or even implying something sexual which is not the case. I also find it hard to navigate systems and paperwork due to the confusing nature of the setup but also due to my struggle with pattern literacy. I also struggle with somewhat of a speech disorder where I will mix consonants and often trip over my words, making it hard to say things clearly the first time and it taking it awhile for me to sound things out.
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Name	Brittany
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Interventions are generalized and applied indiscriminently across the spectrum. There is no distinguishing of support levels needed, or even change in modality.
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Outdated "supports" in school systems. Not being provided with appropriate communication devices/techniques early on. Believing that complex respones to unmet needs or overstepped boundaries are "behaviours" and creating cruel "behaviour support plans". Having higher expectations of how an Autistic person should act/react written into "treatment plans" than would be expected of anyone else.
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Name	Brittany Daniels
Demographic	None Indicated
Response
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Name	Brittany Shidham
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Brixton Moss
Demographic	Autistic individual; Other
Response
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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	The lack of research into the different styles of demand avoidances cause confusion and stumbling blocks toward finding emotional regulation.
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Name	Bryanna
Demographic	Autistic individual
Response	Stutter and other speech impediments Developmental delay in age (5 to 7 years behind)
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Name	Bryanna, self
Demographic	Autistic individual
Response	severe anxiety and self esteem issues, as well as depression eating disorders, and suicidal tendencies
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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	Talking from my own exp... my developmental and intellectual disabilities are not as disabling or serious as the Âûtist ever enemy of life, communication, from the dullest, smallest of duties to the important business, we always lose chances, my personal score of communication success in sadly low and literally lost every important chance on the past and not seems to get any better or me any younger, just by that double empathy very Real barrier.
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological demand avoidance needs more attention in the US. We are drowning as parents. Health professionals and educators do not take our needs seriously. They lack understanding and often empathy for our situation. Our child appears “normal” outside of the home. She comes home and falls to pieces. She doesn’t sleep. She won’t use the bathroom. She cannot leave our side. She is suffering. We are suffering. Help us, please.
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Name	Calen
Demographic	Autistic individual
Response	I don't have any other co occurring disabilities
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response	Communication struggles. Emotional regulation challenges. Sensory issues.
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response
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Name	Callista Markham
Demographic	Autistic individual
Response
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	With a spiky learning profile it’s hard to get adequate supports since you excel in some areas but need a lot of support in others. Also with daily challenges changing capacity it leaves many without support or being believed that they need support.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response	Intellectual disability, communication disability, learning disability (dyslexia, dyscalculia, dysgraphia)
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Name	Caroline Rodgerss
Demographic	Researcher
Response	Most health issues co-occurring on the autism spectrum inspire compassion in the community at large. An exception is the higher percentage of people with autism who experience gender dysphoria. Gender dysphoria can make them targets of harassment and discrimination, making it even harder for them to create successful lives. People with autism are three to six times more likely to experience gender dysphoria than the general population (Warrier V, Greenberg DM, Weir E, et al. Elevated rates of autism, other neurodevelopmental and psychiatric diagnoses, and autistic traits in transgender and gender-diverse individuals. Nat Commun. 2020 Aug 7;11(1):3959.) The same study found a higher incidence of gender dysphoria in people with ADHD, depression, and learning disabilities, each of which co-occur in people with autism at a higher rate than in the neurotypical population (Medical Conditions Associated with Autism | Autism Speaks), suggesting that these conditions may have a shared etiology. In contrast to the groundswell of community support inspired by autism, the debate over gender identity, care, and treatment has become an explosive political issue throughout the country. While it can be argued that the increase in people who do not accept their birth-assigned gender is due to increased tolerance, support and services, the possibility that some portion of its existence is a consequence of gestationally induced epigenetic changes cannot be overlooked.
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Name	Carolyn Holston , Democrat
Demographic	Service provider, health provider, or educator
Response	All of the above come into play at any time.
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Name	Carolyn T
Demographic	Autistic individual
Response	Again, the most significant challenges here are in the lack of services for all individuals, and professionals capable of providing said services.
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	Communication and social anxiety
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Name	Caryn Cramer
Demographic	Family member of an autistic individual
Response	PDA autism profile can lead to severe nervous system activation - it affects about 20% of autistic people, so it’s a very common comorbidity. It can be debilitating and even harmful/unsafe if PDAers are not accommodated to keep their nervous system regulated/ stay out of fight or flight mode. Lowering demands for students (use of declarative language and more self-guided learning), would help them in both school and career - and greatly help their quality of life overall
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Name	Casey Foster
Demographic	Autistic individual; Family member of an autistic individual
Response	Non-typical communication styles and un-recognized common social constructs make it difficult for Autistic individuals to be accepted by allistic individuals
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	As stated before, my autism intersects hard with my ADHD. The symptoms of both often clash in such a way that I spend a lot of my time at a severe rate of dysfunction.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response	Trying to make sure that my kid has a updated IEP for school along with a behavior plan.
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	We can't put our feelings into words, so we can't begin to describe how we're struggling
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Name	catherine martell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	learning disabiliteis
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Name	Catherine Nimmons, Parent of a child with autism
Demographic	Family member of an autistic individual
Response	Intellectual disability
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Name	Catherine Slocombe, Mother
Demographic	Family member of an autistic individual
Response	He has a hard time communicating, finding the right words he should use. Speech/Language therapy all through school helped somewhat, but he still struggles even today.
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disabilities and developmental disabilities
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Learning, developmental, and communication disabilities. Autistic people require clear, direct communication and do not communication or often read subtext. This wouldn't be a challenge if the majority of the population did not avoid direct communication. The have cognitive processing differences, such as primarily bottom up thinking patterns that can take them more time to process new information or adjust to changes. Most Autistic people have learning or processing disorders, including dyslexia, dyscalculia, dysgraphia, auditory processing disorder. They can also experience different needs in order to learn most effectively. Developmental disorders can vary certainly, but issues around interoception, proprioception, can impact walking, crawling, and fine motor skills. Many autistics have a high tolerance for physical pain, but heightened sense of pain related to other sensory issues (heat tolerance).
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Name	Celine Fortin, The Arc of New Jersey
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Communication disabilities make it very difficult for people with autism to participate in treatment modalities addressing mental health challenges or to inform their health care providers of issues and concerns. Therefore many co-occurring conditions go undiagnosed and/or untreated.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Again, same response as the prior two questions, with the addition that the combination of these conditions can lead to feeling incapable, condescended to, left behind, inferior, inadequate, and frustrated in a world that is not accessible to us.
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	My daughter and others that are in ASD and IDD community in our state of Massachusetts have impediments of acquiring and delivery of services, even when medical necessity requires. For instance, we have been waiting for approximately at least 3 years for DDS Day placement, the state transportation department has been unable to this date been able provide a van, driver and female monitor for transportation to a private temporary transitional day placement; MassHealth doesn't cover adults for Home Base ABA Therapy. DDS and IDD departments in the state is supposed to be dedicated to providing services and supports to the DDS and IDD population. The systems are convoluted and lacks accountability to their cliental. The patent response for lack of services provided no staffing however they provide no direct, plan of action of improvement and accountability. Our community is the most vulnerable.
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Name	Charli Barraza
Demographic	Autistic individual
Response	Children identified as either female, high IQ, POC or all of the above get overlooked so often it's become a nihilistic joke in our community. We can't even begin to get an idea of what those disabilities look like until this discrepancy is addressed. Everyone needs access to mental Healthcare and diagnostic opportunities, as well as support.
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Name	Charlie B
Demographic	Autistic individual
Response	I have memory issues from ADHD
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Name	Chris Bruner, Family
Demographic	Family member of an autistic individual
Response	Overall education challenges are the biggest challenge. There is a lack of funding. Funding to help teachers teach autistic children, funding for aides, and smaller classroom sizes. A continued lack of understanding regarding autism and autistic spectrum children. A lack of accommodation for autistic families, especially as children reach middle and high school.
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Name	Chris Knobel
Demographic	Family member of an autistic individual
Response
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Name	chris patton
Demographic	Autistic individual
Response	i typing my heartfilled words, cave in my bad mind, haha, needs full safe life.
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response	Well it's frustrating to have a difference of ability labeled a disability when it sometimes can be an asset. College programs should take this into consideration. Engineering students shouldn't waste academic time on Chaucer and Sociology majors will really never use algebra. Dyslexics have excellent spacial acuity and visual memory. That's not a disability if teaching takes the proper approach.
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- seeing relevance in the learning - navigating rigidity of thought in learning - testing iq in students with limited language - need for individualized instruction that is holistically provided, rather than broad statements, following medical model - weakness/deficit model over strength based
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication and learning disabilities
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	The most significant challenges occur in the most significantly affected population. They are isolated due to their fear of social norms and expectations from unknown people and places. This population needs routine and some type of control over their environment. They can not advocate for their needs and wants in a way that is convenient to others and so they get pushed into settings that can trigger a meltdown that then labels them with behavioral issues.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	My 19-year-old son (Level 3 ASD) has autism (developmental disability), intellectual disabilities, and communication disabilities. I would say without hesitation, that these impact his experience at medical facilities including hospitals, and especially in emergency situations. When he is frightened and confused, he has the potential to become physically aggressive, not specifically with the intention of hurting others, but as a flight or fight response. When hospitals respond by calling security personnel, this diminishes my son’s dignity as a person. There are a handful of staff and facilities that have taken the time to understand disabled individuals like my son. When we encounter experiences where he is not understood and handled with patience, it normally escalates to a situation that interprets him to be a threat, when he is the one who is in desperate need of medical treatment.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Wow- all of the above but if I had to pick just one intellectual because the others can generally improve
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	All of above
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	I've been diagnosed with selective mutism. From the ages of 10-20 I was physically unable to verbally speak from time to time. This affected my social life, relationships, self esteem, studies, work, led to self-harm, suicidal tendencies, anxiety, and depression. Being unable to speak was terrifying. As an undiagnosed child it led to a lot of confusion about whether or not there was a place for me in society, whether or not it was worth living, and whether or not I was a truly damaged person with no future. I needed a diagnosis.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	All of the above. My son’s brain simply does not work in a way that will enable him to function in the world without a 1 to 1 aid, ever.
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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	Fitting in with pears.
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication issues mean we cannot tell others what our needs are so others just do what they want based on prejudice and stigma
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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	I suspect that a lack of research and understanding around communication disabilities is responsible for a great many sources of autistic trauma - and a large number of situations in which the scientific community doesn't actually hear what autistic people are saying.
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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	Children with co-occurring conditions too often lose out on receiving a proper education due to the lack of ability, knowledge, and training required to ensure these children can are included, understood, and cared for based on their individual diagnosis.
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Name	Colette
Demographic	Autistic individual
Response	I do not have any of the above conditions.
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Name	Colleen
Demographic	Family member of an autistic individual
Response	Authority figures that don't understand autism ... Family court, judges, attorneys, probation, addicted to drugs, was raped it's has been awful ... Was Summitt until he was able to talk.
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response	The most significant challenges occur as the child matures into adulthood as there are limited placements for these individuals who present with a complicated set of needs and abilities. It is not a one size fits all so it must be tackled on a case by case basis. It is hard to plan ahead, not just because of the emotional component faced by parents, but because as these affected individuals mature their needs change. Community housing and knowledgeable caregivers to run that specialized housing is needed at every level of care for this community. It is a heartbreaking societal reality that must be addressed.
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	I would argue shortened lifespan. The commonly held view is 17 years shorter than the average american male.
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Name	Connie Fitler
Demographic	Family member of an autistic individual
Response	I will answer the learning/communication disabilities portion. We have an IEP and know the methods that assist educating our individuals with autism. The school district and/or classroom employees, frequently, do not understand the importance of following the IEP. For instance, when our son was in 3rd Grade, most of the children with autism missed a question on a fill in the blank/answer with a sentence because of the way the question was worded. The special education teacher did not seem concerned. This happens frequently.
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Name	Coordinated Care Alliance
Demographic	Representative of advocacy organization
Response	Individual with Developmental Disability are who we directly serve. Having severe and profound intellectual disabilities, create significant barriers and restrictions for an individual to be self-sufficient and safe. Often times, IDD can be taken advantage of by "caregivers" or misdiagnoses, mistreated or overmedicated due to communication and cognitive issues. This may be a reason why over 25% of our population with Autism, have not seen an outpatient medical provider in the past 12 months.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response	My child has above average intelligence and is highly verbal and communicative. The ADHD and Anxiety mentioned earlier are the larger concerns for me.
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	The most significant challenge autistic individual’s face when it comes to other co-occurring conditions, such as learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities is finding people who have the ability to properly assist with these struggles. Autistic individuals with higher IQ are often not given Adequate support for these conditions and autistic individuals, lower IQ are not always encouraged to work with these challenges. Assistive technology would make a big difference in this area, but are often cost prohibitive.
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Name	Crow
Demographic	Autistic individual
Response	Ids
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Name	Crystal Neihart
Demographic	Family member of an autistic individual
Response	My son has a hard time communicating with people. Often times when he talks to people besides me, they look my way and ask what is he saying. This puts a strain on relationships with family and friends. It's hard to bond with family and friends when you can't communicate. For example, my sons cousins can call eachother, grandma/grandpa on the phone. When my son calls on the phone, he is not understood. Nobody calls him on the phone. Which is stark difference to my other children when they were his age and a stark difference to his cousins. It is sad he doesn't get the same relationships as other children his age.
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Name	Crystle
Demographic	Autistic individual; Family member of an autistic individual
Response	Providers who don't think you can have multiple diagnoses. Having no resources as an adult. It's very difficult having to work a full time job as it's mentally draining, but I can't not work.
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	A complicating factor is the frequent co-occurrence of ADHD with ASD, which have contradictory traits, resulting in an approximately-normal person with unusual habits – both developmental conditions tend to mask the contradicting traits of the other, until one or the other is detected and addressed. From the dopamine-deficient neural condition of ADHD, and the excessive sensory input of ASD, the individual endures emotional distress when under-stimulated, and physical distress when over-stimulated, requiring a careful balance of stimulus to retain functional behavior. This co-masking nature of the dual conditions leads to a large population of adult individuals who are unaware that their daily struggles to function are not experienced by the majority, and they suffer in silence, ignorant of both disorders they’re experiencing and trying to compensate for.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response	Autism at its core, is a social communication disorder and a developmental disorder. This questionnaire is very misleading, since these are not “comorbidities”. All of these issues cause significant negative impacts on many with ASD. We need to bring even more focus on the people with ID and severe communication challenges. They are being left behind and spoken for by verbally-privileged advocates. Their experiences are very different. More families need to be listened to so our loved ones will stop being put in the dark.
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	Our son is non-verbal, so relies on speech output from his augmentative device. He has no ability to describe pain, feeling poorly or respond to medical questions. He has developmental and intellectual disabilities. Family members accompany him everywhere when not attending his day program. He does not drive, cannot work independently, and has no safety awareness, so parking lots, exiting a building, danger from strangers are ever present.
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Name	Cynthia Macluskie, Autism Society of Greater Phoenix
Demographic	Family member of an autistic individual
Response	I think the medical co occurring issues are the most important as they impact the ability to participate in life and live pain free. Often they are mislabeled or misdiagnosed and many professionals do not validate or listen to the family or the individual. Learning disabilities such as dyslexia can impact how they learn and their success. Often the global diagnosis makes getting additional services for learning disabilities difficult. Communication disabilities can be profound. Many believe that people who are non verbal are also not very bright and do not have thoughts or feelings. This is not true.
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Name	Cynthia Tyler
Demographic	Family member of an autistic individual
Response	My child will not have a robust social life, nor an independent one where he can live fully on his own. It is difficult to connect with other peers, and it will not be possible for him to live independently. With supports, he will hopefully be able to have a happy and full life, but without supports he will wither. There is no way an autistic child will be able to thrive without supports.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	Too many administrators and not nearly enough thoroughly educated and properly trained care givers
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Name	Dale
Demographic	Family member of an autistic individual
Response	communication is most important. Even those with intellectual or developmental or learning disabilities can communicate verbally. But if you have motor issues, it is much more difficult to communicate verbally or using AAC.
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	The most significant issues I've seen caused by other co-occuring conditions tend to be attendance issues, disciplinary actions taken against individuals because they struggle to communicate in a way that is easy for neurotypical people to understand which can cause anything from minor squabbles to actual fights. Gainful employment is hard to obtain and maintain because of the interview structure and the lack of accommodations in roles that are better compensated for people with communication difficulties.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	Finding the suitable treatment to help with the host of the challenges listed above. Constantly trying to improve education and treatment through the school systems as they constantly try to cut services.
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Name	Dana Haff
Demographic	Autistic individual
Response	Sensory integration and processing are huge issues and are ignored in adults. It’s like the assumption has been made that autism magically vanishes at age 18. It’s appalling that services for adults are almost nonexistent.
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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	There is a lot of attention on so called "high-functioning" autistic people, as well as people with very severe needs. All three of my sons are autistic. Two are minimally verbal and are in autism classrooms. They kind of fit in the middle of both of these populations, and I feel like the people in the middle are kind of left out of the conversation.
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Name	Dani
Demographic	Autistic individual
Response	Communication difficulties
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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 access to resources, community involvement, education.
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Name	Daniele Armstrong
Demographic	Autistic individual; Family member of an autistic individual
Response	Like many people, needing to compartmentalize to break things out and make it easier. I understand why these questions are so specific. Although, since we are looking for ways to service autistic community this is another question to devalue a great number of autistics with the co-occurring conditions.
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Name	Danielle Christy, Private Practice psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Lack of training and evidence-based practices by schools to support language (AAC devices), behavior, and learning.
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Name	Danielle Mays
Demographic	Family member of an autistic individual
Response	Being developmentally behind; not learning or grasping things the same way others do; unable to communicate verbally; intellectually stunted in areas.
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Name	Danielle Terrell
Demographic	Service provider, health provider, or educator; Other
Response	Lack of resources throughout the lifespan.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Misunderstanding, poor diagnosis in time, being bullied in interim, lack of support, lack of group support, too much pressure, not being understood by schools, parents, support services, mental health people, all leading to breakdown and blame, internalizing suffering.
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Danny Schaible
Demographic	Family member of an autistic individual
Response
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Name	Danyale Sturdivant
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Learning disabilities
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	nonverbal so uses sign language but increased chances of frustration because others don’t know or understand what he wants
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response
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Name	David
Demographic	Autistic individual
Response	Communication my biggest problem. Excel at intellectual by myself. Understanding and being understood tough for me
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	Learning disabilities Developmental disabilities Intellectual disabilities Communication disabilities
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	Recognition that some behaviors might be compensatory and necessary as a coping mechanism. Recognition that ABA might be enhanced with application of social learning theory. Recognition that intervention and treatment modalities may differ for those with autism. Recognition that many behaviors might be associated with anxiety and treatment interventions should include stress management. Development of best practices that promote inclusion, and socialization with others including that without an autism diagnosis.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response	Communication disabilities is the key problem in my opinion. The inability to speak/communicate reliably creates a number of problems/assumptions that harms the individual. Our son was diagnosed with an intellectual disability - but he is now taking high school algebra and other courses.
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Name	David McWaters
Demographic	Family member of an autistic individual
Response	1. Executive function disability affecting ability to focus and take organized notes in class
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Name	Dawn Werner
Demographic	Family member of an autistic individual
Response	ALL OF THE ABOVE
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Name	Day, Autistic, ADHD, Dyslexia,and co
Demographic	Autistic individual; Representative of advocacy organization; Other
Response	dyslexia, migraines, Tremors, dissociation
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA means I cannot do things I want to - I haven’t bathed or washed my hair in a year. It took me months to get my hair cut. I don’t take medication that literally keeps me alive because of pda.
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communications- Daily calls to check on status. Provide support and patience. Encourage with open ended questions.
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Name	Deb
Demographic	Family member of an autistic individual
Response
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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	His intellectual disabilites paired with his Autism means those around him need to be trained to help him manage his emotions and behaviors. He needs the support. But his staff is paid so poorly that they leave quickly and we cannot keep the staff adequately trained to support him. This is not a low skill job!
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response	My son [PII redacted]'s most significant challenges along with autism include intellectual disability, global deficits in all areas including speech, OT, self care, activities of daily living, self advocacy, etc. He is mostly nonverbal and also refuses to use a communication device or a PECS system as both make him anxious & cause meltdowns. He is dependent on caregivers for almost everything. Severe frustration when my son can't communicate his needs which leads to self injury, aggression & property destruction
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Name	Delia Ruiz
Demographic	Family member of an autistic individual
Response	Communication disabilities has lead to behavioral challenges for my son.
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Name	Deon
Demographic	Autistic individual
Response	Comorbidities. ADHD both goes hand in hand with my autism and contradicts it (ADHD wants spontaneity but ASD needs structure and routine to thrive). EDS is another common comorbidity that causes a lot of body pain and can sometimes make physical exertion harder than it already is. GI issues are also common, I personally have Celiac disease
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	learning challenges especially reading comprehension
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response	communication disabilities, not beung able to socially connect with people although connection is desired and looked for.
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Name	Dongmei Li
Demographic	Other
Response	Linguistic intelligence is one kind of human’s multiple intelligences. Language development is very important, especially when a child is young, because a child’s language develops along with his/her brain /cognitive development. Without language competence, children will not be able to learn new things, and without language competence, children will never be fully competent communicators. That is why almost all students with special needs are accompanied with language problems.
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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	Communication. Most individuals with higher levels of intelligence have average to above average language skills, assessed as vocabulary et al. Many educational speech and language therapists do not look at social aspects of communication, although this is changing. Interesting, when I get a possible autism assessment, not all school districts include a Speech and Language assessment if the student has a god vocabulary.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	executive planning, communication and developmental disabilities
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response	Besides autism, my son has Down syndrome, which combined causes his developmental age to be between one and three years despite being 18 years old.
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Name	Doreene Donald
Demographic	Family member of an autistic individual
Response	Communication disability
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Name	Dr Christopher Pyne and Holly Swan, Parents
Demographic	Family member of an autistic individual
Response	He is profoundly autistic and does not have much communication at all. It is extremely worrisome as he ages and can't tell us when he doesn't feel good/something is the matter or is constipated or has a headache. Or if someone has hurt him. It is heart breaking.
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	Many of the conditions that can co-occur with autism negatively impact a person’s ability to maintain employment and meet their financial needs, thus putting them in an even more precarious position. This is why appropriate supports are so important, and why a safety net would be important for our community.
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Name	Dr. Autumn Dae Miller
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	The most significant challenge in this arena is that people supporting this person assume the following: 1) That this person is somehow always going to be childlike, which is absurd. 2) With that, that this person is not able to safely navigate social, romantic, employment-based, etc. relationships because of these "childlike" assumptions (also untrue). 3) That there is something WRONG with this person so they are unable to learn. This one is extremely problematic as it perpetuates the assumption that someone is expected to learn in ONE way - the way the EDUCATOR WANTS TO TEACH; rather than meeting each person where THEY are and teaching them using the methods that work best for them.
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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 primary diagnostic criteria of communication disability is grossly overlooked. We have a right to accommodation, but the law still requires us to communicate about our need for communication support. This is a catch-22 that any other population would not be silent about. The other concern is that generic social workers are tasked with making service decisions while lacking the expertise to review medical documentation of need; the due process is not accessible.
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic people with co-occurring learning, developmental, or intellectual disabilities may face heightened difficulties in traditional educational settings. These challenges can include struggles with information processing, memory, attention, motor coordination, and problem-solving, which may require specialized educational strategies and supports to facilitate learning in a way that works best for them. For autistic people with additional communication disabilities, expressing needs, thoughts, and feelings through speech can be particularly challenging, especially when they do not have access to alternative modes of communication (e.g., AAC). These compounded communication barriers can lead to misunderstandings, frustration, and increased difficulty in forming social connections and accessing needed support. Additionally, misconceptions and stigma surrounding these disabilities can lead to social exclusion, mistreatment, and isolation.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	We must correct the DSM for its narrow understanding of our spectrum divergence. High and low functioning needs dissolving-- i.e., my high intelligence has been hampered by unknown developmental disabilities. I learn differently. I age differently. There is so much room for more complex research. One of the worst challenges in our community is being researched without our direct representation in the research process. I've also been "managed" in clinics rather than listened to. So we tend not to seek help for ourselves enough from the allistic world, which somewhat obscures ours. So we feel despair in not being understood
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Name	Dulce
Demographic	Autistic individual
Response	Communication disabilities such as due to sensory issues seem to be a common occurrence within the autistic community. As well as a few learning disabilities like dyslexia and dyscalculia.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	The co-occurrence of autism with learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities creates multifaceted challenges. Tailored educational strategies, inclusive communication approaches, and comprehensive developmental support are essential to address the diverse needs of this population.
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Name	E.R
Demographic	Family member of an autistic individual
Response	ADHD
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Name	Elena, Mother
Demographic	Family member of an autistic individual
Response	See response to first question. But, to clarify, all of his co-morbid conditions, which I consider to be common in people on the spectrum that I have met (and having a 30 year old son means I have met many- including a husband who has mild spectrum-like qualities), means that living and working situations are the most difficult things we face with our son. There needs to be a larger choice and variety of living options, and more education in the total employment field about how to integrate these wonderful and special people into the workforce.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Communication is the single most significant thing that has followed me into adulthood. Learning and developmental disabilities get better with time and accommodation, but not being able to speak (in the case of my brother), and not being able to maintain relationships due to communication issues is a major issue for me and contributes to my depression, anxiety, and suicidality. The social skills class I received as a child did not help and in fact the people providing it were abusive to me and the other students, did not allow us to socialize with each other, and pathologized us for age-appropriate interests like Dragonball Z and Pokemon (we were 11-13). I've heard that other people have had different experiences since then - my main issue is that what I needed was a place to regularly socialize with my peers that was somewhat structured, I needed community with other autistic students who were in a similar ability range, and I needed adults that had appropriate training on how to help autistic teenagers. Unfortunately I did not have any of these things and ended up finding them on the open internet, which is questionable.
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Name	Elio McCabe, Autistic Women & Nonbinary Network
Demographic	Autistic individual; Representative of advocacy organization
Response
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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
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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	The combination of ASD & ID is an especially difficult one that results in fewer choices for autistic people when they reach adulthood and increases the need for lifelong family supports.
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	Has co-occurring dyslexia and dysgraphia (although the dyslexlia has been mostly remediated with intervention)
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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	In the case of PDA Autism, when nervous system activation occurs in response to perceived demands or losses of autonomy, stress accumulates and has the individual constantly in survival mode, when not being accommodated they are rarely using logic and frontal lobe processing to communicate and lots of blaming and misunderstanding result from the nervous system reactions that others observe and judge in the context of viewing them as NT individuals. This behavior is often misjudged as disabilities in learning, intellect and communication when in fact nervous system activation and flooding are at the root. The deficit model contributes to this inaccuracy and misunderstanding by teaching providers to look for limits to communication instead of differences. Learning disabilities are characterized based on assumption of underlying abilities- and the impact of being in a demand that is activating stress due to unique threat perception- is not accounted for in evaluation. In the presence of seemingly typical verbal communication, assumptions that the individual is sensing and perceiving the same as their peers is wrongly made.
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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	Perhaps the most challenging is the lack of opportunity to learn social skills. Autistic people are often raised by autistic people, the only chance at "normal" socialization is through school and community. While some communities know how to support people with autism, most write it off as character deficits. This can cause issues at school, in the work place, and with loved ones.
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disabilities make communication ever harder, communicating is hard enough already but add not being able to form sentences to it and trying to communicate with bosses or coworkers becomes difficult and at times dangerous.
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Name	Ellen
Demographic	Autistic individual
Response	Communication & learning
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Name	Ellen Kopel-Puretz
Demographic	Family member of an autistic individual
Response
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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	As one of the major symptoms of autism is difficulty with sensory processing, many autistic adults – especially if undiagnosed – develop substance use disorder because alcohol and drug use can dull the sensory distress that many of us feel in environments that allistic people would find comfortable or neutral. Engaging in substance use can also break down social barriers that autistic individuals feel constricted by; not only does drinking help us fit in more with neurotypical peers, it also allows more flexibility of behavior that means that visibly autistic traits are often more tolerated in an alcohol-infused environment than in other situations. Statistics vary on the exact percentage of autistic adults who are unemployed at any given time, but some estimates put it as high as 85%. The expectation in much of the modern work world that employees simply continue to generate some unit of productivity at a continuous, linear rate does not mesh well with the abilities of many autistic people, especially with the co-occurring mental health conditions identified earlier. Job interviews are stressful for most people, but more so for people with visible struggles in displaying expected behaviors such as eye contact. Many autistic people, though by no means all, are naturally inclined to either answer questions very briefly or at great length, both of which are detrimental to success in job interviews and in situations regularly encountered in many jobs.
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Name	Emilee
Demographic	Autistic individual
Response	Stereotypical work/school week.
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Name	emily
Demographic	Autistic individual
Response	I can answer regarding learning disabilities and communication disabilities. Regarding learning disabilities, the way that autism has affected me deals with communicating the ways that I learn. People are often confused and don't allow me the time to explain in full that what I require in order to learn how to do something is to see someone do it, try doing it myself, ask questions, usually get some help from someone who knows how to do it, and then after that I can pretty much always do that thing - or, at least, to the extent that my body is able to that day. The knowledge of how to do the thing is permanently learned, though. I am so often excluded, though, when it seems to others that my sentences have too many words in them, or that my thoughts have too many sentences. It is very painful to be dismissed and assume ineligible in this way. It is so painful that it has impacted my central nervous system greatly, and I have been unable to seek medical care because of the recursive issue regarding the lack of patience in the medical industry for well-informed patients. And so this is really more of a communication issue, and this is not a disability for me; it is a shortcoming among allistics. I am a very effective and talented communicator. Allistics become angry and confused when my sentences are long or challenge perceived societal hierarchies. I am a very invested and skilled communicator. I have been disabled by the inability of others to hear me.
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Name	Emily
Demographic	Autistic individual
Response	I was never diagnosed with hyper mobility/Ehlers Danlos Syndrome but I suspect I have it, which might have caused me to develop a hiatal hernia. It also affects my digestive system. I also get dizzy spells and have migraines from dehydration and have to over compensate with my sodium intake.
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Name	Emily
Demographic	Autistic individual
Response	Autism and ADHD have made reading difficult. Dyslexia and dyscalculia are common. Then frustration with not knowing how to communicate what the issues are.
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication plays a big barrier for individuals with autism and/or other disabilities to seek the right treatment and/or medication from a professional because of the lack of communication or understanding.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response	Communication difficulties are a common and serious concern for those with autism. An estimated one third of the autistic population is either nonverbal (no functional verbal speech) or minimally verbal (fewer than 30 words of functional verbal speech). As a level 2 autistic with moderate to high support needs, I rely on a speech generating device (alternative and augmentative communication, abbreviated AAC) for much of my interaction with others. Without it, I would struggle to get my needs met, my emotional experiences understood, and my ideas heard. A greater emphasis on supports specifically for autistic adults (as opposed to autistic children) who need more communication support, is, I believe, a high priority need.
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Name	Emma
Demographic	Autistic individual
Response
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I have Mearse-Irlen Syndrome - and optic nerve disorder that affects depth perception, and my ability to read that I was diagnosed with at the age of 7. One of the main treatments for this disorder that allows me to read and gives me some frontal depth perception back is glasses, however unlike other glasses these glasses are dark -meant to block out the wavelength of light my optic nerve struggles with processing - and look a bit like sunglasses on first glance. While people can see some of my eyes through them one thing I struggle with is that when I am attempting to show emotion often people have a harder time reading me - harder than normal when I am masking my autism - because they can’t read the emotion coming from my eyes.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	the most significant challenges are the lack of help and services, especially once individuals age out of the school district in the state of Washington. There are no services available
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication disabilities further hurt these individuals. My experience, (working in a Day Hab program), has been; that while individuals are in school, they have the benefit of Speech Therapy, and all sorts of assistive communication devices. The minute they graduate - this all goes away! WHY????? It's not as if suddenly they are "cured" when they graduate! Their communication needs not only persist, but even increase, as they are expected to become more independent! THIS NEEDS TO CHANGE!!!!
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response
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Name	Eugenia Ramsey
Demographic	None Indicated
Response
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	I don’t have intellectual disabilities. I have a very high IQ. I did, however, have delays in understanding neurotypical communication, but I believe that is a two way street. I believe it should be both parties that need to learn each other’s language, not just treat me as deficient for not being, thinking, or communicating like you. That is outdated thinking. I am not a defective neurotypical. I am a perfectly normal autistic neurotype person. I don’t suffer from Autism; I suffer from a world not built for me to thrive, and because that the world was robbed of my intellect and capabilities. I have a master’s degree I cannot use because bubbly dispositions are favored over genuine work. Absolute waste.
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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	There needs to be more research, training, funding and resources allocated to AAC. The current emphasis is on behavioral treatments, such as ABA. These treatments are inadequate in addressing complex communication needs of autistic individuals. The AAC methodology and best practices need to be taught to all professionals, including educators, private providers and medical providers, caretakers and families in order to support access, introduction and development of authentic and robust language system to all complex communication learners throughout a lifespan. This access is currently limited in spite of the technology being available (communication apps, devices, etc).
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Name	Fin Finney
Demographic	Autistic individual; Service provider, health provider, or educator
Response	It feels impossible to get them treated if you don’t present in a very specific way. As an adult I have to bring these topics up to my provider and build my case, despite the fact that I was (improperly) screened for these issues as a child. Providers universally lack an understanding of autism, and I as an autistic person have had to dedicate multiple years to fully understanding how to navigate my condition without causing myself further harm.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	have communication disabilities since not good in English and her native language is different. Comprehension is very poor.
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	learning difficulties, language and communication deficits, developmental delay, self regulation challenges, social engagement difficulties.
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disabilities, by far. Most autistic people I've worked with don't actually have learning disabilities or intellectual disabilities, but have been labeled as such because the world will not work with the method of communication that they are able to employ.
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Name	Freya
Demographic	Family member of an autistic individual
Response	Communication disabilities Learning difficulties (attention and concentration)
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	I will never have enough money to support myself because I will never ever get a paid job. And I will always be on my own and will ever be in danger of being abused by other people.
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	Developmental disabilities, no awareness of danger. Not aware of others near him. Hazards near him he will trip and fall. He also injures himself trying to regulate himself. Communication cannot tell us what he needs if he’s hungry or hurting or upset
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	Learning disabilities, SOCIAL disabilities (my son does not understand context at all and cannot read a room), developmental disabilities in early childhood, communication disabilities (many autistic adults that I have met have stutters and obsessive thought processes). Intellect is not an issue. These people are just as intelligent as others, but a disconnect occurs between the brain and the mouth or motor control.
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Name	george knoth
Demographic	Family member of an autistic individual
Response	can not live independently needs 24 hours a day care
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	I was highly intelligent and at a time when autism was rarely diagnosed people thought that I was normal and that my social isolation was a choice.
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Name	ginamarie
Demographic	Other
Response	the intellect - communicates and learns be extreme hard. i be got the covids again and stress so bad i be no remembers just take asprin for my fever..... many the doc office no use simple word language break down repeat steps need for care level for when we alone.... there be a disconnect in the understandings of level care requested that especials the push for use on the line - that no options proper for me so many my basic needs no go connect propers. like when got the stitches i ask for instructs and still need call office i be got infect cause i take longers to heal - another snow ball health concern.
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Name	Glen , The Jewish Guy Business venture PTY LTD
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Glenda Hayes, Grandparent
Demographic	Family member of an autistic individual
Response	Grandson learns easily but is convinced/very resistant to homework that he sees as totally unnecessary "because he has been in school all day". Test grades very good but homework grades poor. Probably related to desire to play video games after school.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	I think the most significant Challenge is communication She has no means to communicate her needs and wants, she cannot tell us what is wrong or what is bothering her medically. It is difficult to form relationships with other people, because she lacks the reciprocal communication with others
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Name	Grace, Autistic person
Demographic	Autistic individual
Response	Communication disabilities face significant exclusion in all areas of support and rights. AAC users can communicate yet are often on the fringe of society being left out of all relevant discussions.
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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	Unfortunately, considering the last two entries, I suspect the most significant challenge regarding other conditions that co-occur with autism is misdiagnosis and the resultant inaccurate treatment planning. Given that much of an autistic’s ability to communicate, self-express, and engage in the environment around them is contingent on the cooperation of the nervous system, I believe that many individuals with ASD are misdiagnosed with other disabilities because they are not able to accurately replicate standards of “ability” that are set by individuals with self-regulating nervous systems and the average neurotype. Many an autistic has been labeled intellectually disabled by undertrained or misinformed diagnosticians, not due to a lack of content understanding or intellectual ability on the part of the autistic person, but due to the inability to communicate this understanding in a way that is deemed “appropriate” by the governing bodies of medicine and psychology.
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Name	Greg
Demographic	Autistic individual
Response	Communication. You don't k ow how important it is until you are literally unable to express your feelings
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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	For an individual with Autism, all of the above listed alone without Autism are know to be correlated to lower quality of life - under or un employability, social stratification, and mental health concerns. With Autism, those effects are intensified.
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Name	H
Demographic	Family member of an autistic individual
Response	School not working and exacerbating challenges
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response	Inability to express discomfort leading to inappropriate behavior.
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Name	Heart of Texas Behavioral Health Network
Demographic	Service provider, health provider, or educator
Response	A large majority of care providers are uncomfortable or unwilling to work with individuals who have an intellectual or developmental disorder. Many individuals who have IDD have co-occurring mental health conditions including autism. Communication is a significant challenge.
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Name	Heather
Demographic	Autistic individual
Response	Lack of access to proper supports, help, resources; especially for autistic adults.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Needing assistance with using utensils, getting dressed, toileting and not being able to communicate wants and needs, but having to go to a daycare that isn't trained on how to handle autism, because we can't stay home with our kids because there isn't enough financial assistance to do so. Autistic females statistically have only a 10% chance of NOT being sexually assaulted in their lifetime due to communication disabilties.
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The biggest struggle that I have and that I have noticed in others is communication difficulties and being able to read social cues. It is difficult to “fit in” and try to navigate a world that seems to think and act so much differently than I (and other autistics) do.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Sensory issues
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Name	Heather Bourne
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	executive functions weaknesses/ frequently comorbid ADHD can present a double barrier to accessing learning in and outside of schools-- the autism profile can impact HOW one can access interventions for ADHD, and vice-versa. My daughter has dyslexia, and her autism/ pathological demand avoidance PROFOUNDLY impacts hwo hard it is for her to engage in dyslexia interventions-- and in turn, her anxiety skyrockets and she feels terribel about her brain. The intersections here are each something to understand and separate out.
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication disorders and lack of access to AAC impacts autistic self-advocacy and participation
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Name	Heather Gray
Demographic	Autistic individual
Response	Learning disabilities, development disabilties
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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	There is difficulty in educational systems with being able to truly accommodate individuals since there seems to be siloed and fragmented understanding regarding how conditions impact each other. Similarly, treatment is generally aimed at treating symptoms but if symptoms are overlayed by a different condition or a similar symptom origin is misunderstood, the therapeutic target may be missed.
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	Communication, speech. Intellectual disability.
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	My family member has little to no speech and functions at a 2 year old level for speech but at a higher level for self-help skills. Pair this with severely aggressive behavior and intermittent explosive disorder and the result is devastating for everyone. The public must realize that all people with autism do not perform in a Broadway show or act like the "Good Doctor" on TV. Our needs are minimized and not addressed at all by the media.
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Name	Holly
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Holly Connor
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	The fact that diagnostic tools look at IQ and adaptive behaviors scores. Testing used does not look at the individual's motivation of learning things that interest them. Testing is not adapted to offer the means to understand the way they process the world. Although IQ is still a needed number, just like with autism having various levels, breaking down the cognitive ability if various categories that give a better picture of ability and needs.
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Name	Ian Morris
Demographic	Autistic individual
Response	Some autistics have learning as a hindrance, but sometimes we autistics have an advantage in learning. The lowest my IQ has ever been measured by a psychologist is 145. My sort of autism leads me to go to the library and read as much as I can. I have had discussions with other autistics, and they tell me about the difficulty they had in school. In order to prevent ableism in schools, we need to have a broader understanding of autism.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	Day services, schools, and other programs are often ill-prepared to adapt to the needs of autistic individuals with co-occurring intellectual or developmental disabilities. Providers are often not adequately trained to understand how these additional disabilities impact autistic individuals and how to adapt treatments and interventions to better serve this population. Other challenges that potentially affect quality of life are challenges with social growth, interpersonal effectiveness, sense of self-efficacy, ability to cope with change, and the need for increased housing supports and employment supports.
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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	If I had to choose one among those listed, Communication disabilities are the most challenging for me. Because I am educated, and can advocate for myself with proper preparation, people assume I can always advocate for myself. And I cannot. It takes a lot of emotional and physical energy to self-advocate, and even then, I need processing time to respond to new information. I am consistently required to make decisions on the spot, despite my requesting time to process, all the time. It's profoundly able-ist. I'm also required to engage when I cannot. I have to reschedule appointments all the time, and it's not because of an oversight. It's because somedays are too sensorily challenging and impede my ability to engage others.
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Name	Irene Tanzman, parent/guardian
Demographic	Family member of an autistic individual
Response	Isaac cannot describe pain or tell a physician where it hurts. This is also one of the many reasons that speech and communication interventions are an essential accommodation for him. The community-based placements available to him do not offer speech and communication therapy or communication therapy based on the behavioral principles of verbal behavior. They do not have a mechanism or a plan for upkeep of augmentative communication devices. No allied health professionals are involved with his individual support plan development or were present at this or any of his thirteen ISP meetings. No nursing staff has ever been involved with Isaac’s ISP development or present at any meeting. I have never received any nursing or medical evaluation from anyone at his Home and Community-Based group home placement.
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Name	Izabella Pulvermacher, Dental Coordinator Department of Developmental Services
Demographic	Service provider, health provider, or educator
Response	Communication disabilities - not able to communicate pain....
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Name	J Maust, HUB 302
Demographic	Family member of an autistic individual; Other
Response	Communication disabilities, medication balancing & dosing, impulsivity, certain areas intellectual disabilities,
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Name	J Olson
Demographic	Family member of an autistic individual
Response	Understanding and acceptance. Autism is a dynamic disability. People do not understand this. They do not understand why an Autistic person may communicate verbally one day, but be unable to communicate verbally and need to utilize sign language, gestures or a communication device another. It is viewed as willful and purposeful manipulation (actual terminology noted in my child’s educational file).
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Name	Jack Brownn
Demographic	Autistic individual
Response	Dyslexia, Stuttering
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Name	Jackie
Demographic	Autistic individual
Response	Communication is the most difficult as most places of employment are not willing to make adjustments in Communication methods so that the autistic person can fully understand what is expected of them. Many of us experience a heightened reaction to being in trouble or doing something wrong and being criticized. Getting an official diagnosis is almost impossible as an adult thus making it even harder to get services and accommodations.
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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	These just add to the issues and make caring for these individuals without tremendous support impossible. My son has epilepsy, I/DD, aggression, self injury, Mood disorder, non verbal he’s 28 and we are 60 - we live one crisis away from it all falling apart every day and the future - biggest fear. The I/DD component makes all the other issues so much more complex - he has no sense of danger, can’t communicate his needs, make for a very complex plan.
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Name	Jaime
Demographic	Family member of an autistic individual
Response	His learning is very periodic and delayed. He faces constant learning struggles which seem to take a toll and frustrate him causing irritation periods and periods of isolation and bringing swing moods. He is developing at a much slower pace than other normal kids and we see the differences between him at five years and our child being only four and we can see the huge differences in both of their developmental stages. The communication portion has been so difficult and is hard for him to express what he wants and it's hard for us to know or identify his needs and this also provokes his tantrums and mood changes. There are times when out of the blues he starts crying and is hard to understand what causes these reactions. This brings sadness and disappointment to me and my wife and we feel helpless and feel that as much as we want to help him there's just things we won't be able to do for him.
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Name	James V. Bradley
Demographic	Autistic individual; Family member of an autistic individual
Response	It is difficult for me to communicate and express myself verbally; I do not organize my thoughts in a way that can be easily conveyed in a real-time back-and-forth conversation.
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Name	James Weingardt
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sensory processing, developmental disabilities, neurological functioning (dysgraphia, dyslexia, dyscalculia, spikey profile), executive functioning (remembering, planning,), rejection sensitivity dysphoria, Trauma, complex trauma,
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	My son cannot talk and tell people who he is, what is wrong and what his needs are. People may not know that if he runs into traffic he has no awareness to safety. The staff that work with him are not paid enough. He cannot live without 24/7 care. He rarely sleeps through the night. I could go on and on. I have a son with autism and other co-morbidities and I am his voice. He cannot advocate for himself but that does not mean he is less than and his needs shouldn't be considered. When the DSM was changed and Aspergers was taken out of the diagnostic manual is when my son and all of his friends lost their spot at the table. To consider my son in the same category as a student who can attend Harvard is the most gross discrimination there is. The levels in the manual have not changed the fact that #actually autistics are trying to lead any and all discussion to say I shouldn't speak for my son. If I don't who will. He cannot and would not be able to text, send an email, etc. That does not mean I treat him differently and in fact one the the best compliments I received in my life was how I didin't raise my son any differently than I did my other 2 boys. I have a degree in Social Work and I am a fierce advocate for anyone that doesn't have a voice or doesn't know how to use their voice to make changes.
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	Challenges-- all of the above-- learning, developmental, intellectual, and communication disabilities.
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Name	Jana Young
Demographic	Family member of an autistic individual
Response	Communication challenges, emotional dysregulation, learning difficulties (literacy)
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Name	Jane Horn
Demographic	Family member of an autistic individual; Other
Response	Most education is very difficult with a child whose language is severely echolalic.
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Name	Jane Roberts, University of South Carolina
Demographic	Researcher
Response	lack of functional independence, poor services in school or communities and the need for housing. transitioning to adulthood is a tremendous challenge for those with ASD who have co-occurring conditions.
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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	It's not those indivduals that providers struggle to support, it's the Austism only individuals with the high IQ's. Are system is based on supporting individuals with an intellectual disability. Question is are we stifling the individuals with Autism with normal to higher IQ's to their full potiential.
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Name	Janet Callahan
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	First, people's assumptions that any of these things mean that someone is incapable of learning has been a bigger impediment to my childrens' learning than their actual diagnoses. My children had IEPs (we currently homeschool because there is no reasonable way to send them back to school and get what they need). Their IEPs did not result in academic progress, even though they were quite capable of it. We spent hundreds of hours negotiating how to get needed services and supports. My son has substantial communication disabilities. We were told when he was in 4th grade that he would not graduate from high school. In part, he could not participate in foreign language classes, because he couldn't "speak English," and those foreign language credits are a graduation requirement. At home he's learning a 2nd language quite successfully.
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	For approximately 30% to 40% of individuals on the autism spectrum who have severe communication impairments and intellectual disability, they often require near-constant supervision, which means one parent may have to quit work and stay at home, if the child or adult is still in the family home, or a paid staffer is needed around the clock, if the person is living outside the family home. Such an individual is unlikely to be able to live independently nor to earn enough to pay for their own housing and upkeep. Families often face huge financial costs—the possible loss of a parent’s income as well as costs for multiple types of therapy, respite care, in-home supports, specialized equipment, medical care, and often replacing or repairing property destruction. And state Medicaid waiver programs often have huge waiting lists, limited funding, and chronic and severe staffing shortages preventing such adults from being able to move out of their family home and to be as “independent” as it is possible for them to be. Also, since Medicaid dollars cannot be used for housing, a huge challenge is for these individuals is being able to afford decent housing on an SSI check of $943 a month, particularly if the individual’s behavioral needs require the person to live by themselves (with 24/7 staff).
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Name	Janice
Demographic	Family member of an autistic individual
Response	My daughter is very smart but often has trouble finding the right words. Expressive verbal skills have a problem since she was a preschooler. She can function in the world and has a job but sometimes it takes a little bit to get context and details on things she’s talking about
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response	She is very intelligent but easily overwhelmed by noise, crowds, etc. Which may cause temporary inability to speak.
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Name	Jared Goodrich
Demographic	Autistic individual
Response	Social interaction
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication, learning things a different way, non-accommodation for outliers in just about every facet of life.
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	My son finds it difficult to function in social settings. He can mask, but his desire is to exit the situation as soon he can. I think his difficulties with executive functioning also fit in this category.
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning disabilities
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	The most significant challenge is the communication and social disabilities. There are a lot of non verbal social cues that we are expected to know and use in order to navigate social situations. While I have learned how to get by with small talk and socially acceptable scripts, I require a lot more down time and recovery time from social obligations than most neurotypicals. Also, growing up and not having a sound understanding of my differences played a huge part in me being bullied for being perceived as different than my peers.
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Name	Jeffrey Poms
Demographic	Autistic individual
Response	a lot of autistic people are very intelligent but may struggle to communicate in ways well received by their allistic countnerparts. We have regulated trainings in every major employer for workplace violence, harassment, diversity including now the trans community, why can we not add regulated information on neurodivergence?
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	I have tremendous difficulty with following instructions. I am totally [redacted] at Math. I am constantly tortured with "Remembrance Of Things Past". In a battery of test it was observed that I cannot learn from visual instructions. Something to that effect. I say the wrong thing to the wrong person. I don't react quickly enough in social situations.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response	Overall mental health, for me anxiety and alexatxymia
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Communication disabilities that result in an inability to express needs to doctors/healthcare professionals.
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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 challenges I have noticed are problems in socialization and inappropriate social approach. Communication problems are also common.
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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	Mental health conditions are so pervasive in ASD (OCD, anxiety, bipolar, PTSD), yet there is so little treatment being provided. Clinicians and medical professionals MUST be trained not only to recognize this, but also learn how to adapt treatment interventions.
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Name	Jenn
Demographic	Autistic individual; Family member of an autistic individual
Response	Adequate supports and accommodations in schools. Most schools do not recognize a medical diagnosis of autism and do not have the funding to provide adequate supports, so they refuse an IEP to autistic people on the grounds they do not have an « educational diagnosis » of autism.
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Name	Jenn Raley Miller, Parent
Demographic	Other
Response	There is very little understanding of how the spectrum of intelligence, from ID to profound giftedness, interacts with other dimensions of autism.
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Name	Jennifer Colberg, Grandma
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Non verbal, cognitive delays
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Name	Jennifer Higgins
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological Demand Avoidance
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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 child has dyslexia as well as autism and adhd. He has been in Reading tutoring since third grade that we have had to pay out of pocket for because public school does not do the Barton reading method. He is in high school now and still working with his reading resource teacher. He goes twice a week and has since third grade he is now in high school. This not only costs a lot for us but because of the autism and the ADHD it is taking him a long time to finish the program. My sister's child with dyslexia attended a private school in LA where they had the burden reading method. They worked with him everyday for about a year and a half and he can read fine now. Why can't public schools use the Barton method?
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My son is 2E and has a very high IQ learning isnt difficult for him. People are.
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	This goes along with the last question. But many of these kids (young adults) do not understand how "humans in society" work. They don't see the logic in anything people do, and parents so desperately try to make their children fit the "humans in society" mold. When they can't, the child (young adult) gets frustrated, depressed, and angry because they cannot understand or express things to get their point of view across. They also do not know why things are done the way they are. My son understands that you need money to buy things, but that is about the extent of his understanding of money; many people on the spectrum are the same way. They also do not understand figurative language (which is almost 100% of how Americans communicate). This is why my husband, I, or my other son needs to be with our autistic son so that we can explain things to him. The people dealing with him don't know how to communicate. Some people tend to be leery of the bluntness of autistic people. We always tell people that if you don't want to know the truth, don't ask your son. Unfortunately, transfer of learning is almost impossible with persons on the spectrum. That is why teaching them is hard, and patience has to prevail. Lack of training and knowledge for people not on the spectrum.
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response	My son with Autism has significant challenges with communication. While he can speak, and answer basic questions, he cannot carry on a lengthy conversation, answer questions about his health or well-being or his wants, needs and desires about living independently. This limits his choices as an adult for independent living.
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	adhd pda
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	lack of knowledge by the general public, trained practitioners, and psychiatric professionals about how the inter-play of co-occurring conditions AND cultural heritage play into the presentation and affects of ASD with other conditions. Most times we are spending time teaching rather than being treated. Also the pathologizing of our condition rather than listening to our lived experiences and to the now emergent Autistic researchers, pathologizing language and "deficits" instead of realizing that we are multi-lingual, we have been learning how to speak in "allistic" allistilese for our whole lives and masking is draining us. Lack of consideration for our skillful communication within our own community, not having any failings but rather focusing on the social model of disability and the 10 principles of disability justice.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning difficulties: render us "unable to be taught" and result in us being put into life skills classes and being given up on by teachers. Developmental disabilities, depending upon WHAT is disabled, can be detrimental to mobility, communication, etc Intellectual disabilities: everyone just eventually "gives up on" us, thinking that we "cannot learn, so why waste time trying" Communication difficulties can lead to a whole other set of difficulties, especially when NO effort is put into trying to obtain some sort of communication device (or when the insurance repeatedly DENIES the purchase of a communication device)
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Name	Jesse Scott
Demographic	Autistic individual
Response	Ability to self advocate, knowing when to ask for help when having challenges. Processing too much information independently can lead to stress without support.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	I can’t speak for everyone but I can tell you that my biggest challenge is socializing. It is a misconception that we prefer to be alone. We learn to prefer to be alone because people treat us so badly. We annoy neurotypical people just by being ourselves. I will never know how to comfort someone, and I will never be comfortable in a room full of people. Everyone speaks a special social language that my brain doesn’t. If we could educate others on autism and eliminate stigma, society as a whole would be more accepting and kind.
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Name	Jessica Bearden
Demographic	Service provider, health provider, or educator
Response	These challenges include communicating with autistic individual about their their needs. Resources for alternative methods of communication would be helpful
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Name	Jessica Blackmon, Just an ADHD dyslexic autistic girl
Demographic	Autistic individual
Response	I have ADHD and severely dyslexic I would love to take the time to be able to take classes to help me learn how to read and write so that way I can actually go back to school actually learn something that's not a trade skill, but unfortunately for my age I'm too old to get any assistance so I'm stuck working to pay bills and I do not have the time nor the money to afford such education I grew up it is School District that if you were failing any of your classes instead of finding out what was the matter with that student they would stick you in a autistic class where I fell behind multiple years because of it and yet I never had an issue with anything else besides my reading and writing so now I am stuck in a manual labor job and barely able to make it. So yeah adults that have ADHD and dyslexia on the autism spectrum we need help desperately none of us want to be in the position that we are we can do so much more in this world but it's not made to accommodate us so we are just left behind. PS please don't mind the grammar this is being written through speak to text on my phone.
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Name	Jessica Iverson
Demographic	Autistic individual
Response	People with higher support needs are often labeled as having an intellectual disability simply because of their lacking communication skills.
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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	A lack of understanding in how to accommodate these challenges in the workplace, leading to unemployment or underemployment of individuals with ASD
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response	He has soical and emotional delay he has a hard time with his peers of his age. He tends to not want to be in unfamiliar places such as grandmothers house
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Name	Jessica Smith
Demographic	Autistic individual
Response	learning disabilities. some people dont understand the differences between autism and learning disabiliteis and will treat us as if we are trying to cause problems when we just learn/ process/ understand not just diffrently but at a diffrent time line. For me it takes me a lot longer to grasp concepts but once i get it i get it. aullistics and neurotypicals loose thier [profanity redacted] if i eed longer than the time THEY would need to understand something. and then say we have behaveral problems just cause they are projecting how they would understand something onto someone else. like mainly its how others react to our learning disability/ intellectual disabilities than it actually being a problem. as well as communication. autistic/ neurodivergent peole might use a form of communication called anecdotal communication. neurotypicals do not use this style of communication and accuse us of 'one upping' them in conversation when we are just trying to prove we relate, understnad, and empathixe and sympathize with thier story. but we are forced to not use that style of communication cause THEY feel uncomfterbul with it and try and change us to lacate thier feelings of uncomfternility instead of actually understanding diffrent communication styles exist.
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	when i was doing in person schools. the fact not everyone believed I had my adhd, autism, and other learning disabilities. having many of my teachers not believe me meant that i wouldn't always get the accommodations that were in my iep or get new ones added. (yes i know illegal they still did it) i have 2 (both very similar) which put back my math and reading (what the state tests us for) which almost very easily could have put me back a few years in my learning. communication which is another thing i personally struggle with, effected my social life in school. having a small group of friends was better for me but we sometimes had a hard time understanding each other due to us all being nurodivergent and in diffrent grades. having friends in diffrent grades and not being able to make friends with those in a younger grade then me ment my friend group kept getting smaller. as well as having communication problems as in but not limited to: not understanding socail situations, social cues, hints, sarcasm, joking, body language, you get the point. having these problems makes it hard for me to understand and socialize with people not just my own age but people older and younger then me. more so if they dont understand why i stim, repeat words, figit, cant stand still, relate a story back so they know i understand.
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	In our severe/profound autism population, autism is in part *defined* by severe functional and communication impairment, so it is unclear why the NIMH considers these to be "co-occurring" conditions. Our population's functionality and independence is severely compromised by pervasive communication impairments, typically involving no or minimal language, and cognitive impairments so severe that they prevent any chance for independent living or meaningful employment.
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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	communication disabilities
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response	communication - his ASD and dyspraxia creates a frustration with him, which creates behavioral concerns. He often communicates through his behavior.
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Especially in girls: Speech Impairment can be only diagnosis given by public schools if any giving young girls access to special education services...but not all that they need. Dyslexia (can be compensated at young ages at the expenses of individual) Personally I was *lucky* to get an ADHD inattentive type diagnosis in the 90's. My IEP also supported my gross and fine motor delays.
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Name	Joanna
Demographic	Family member of an autistic individual
Response	Communication , speech delay , poor understanding of how he feels , very black and white understanding of emotions which makes it extremely difficult to understand how he’s feeling and for us to understand how he is feeling . Can’t have a ‘normal ‘ conversation 2 way as he only talks about what he wants too and doesn’t listen to others opinions . Interrupts , talks over people . Also selective mutism due to his anxiety and social difficulties. PDA means asking direct questions turn into a demand and his nervous system gets triggered .
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Name	Joanne Miller
Demographic	Service provider, health provider, or educator
Response	If a person with autism experiences issues with expressing themselves/is non-verbal, people assume they aren't intelligent, which is a false assumption, and write off anything they might say/do as "being a part of the autism". Many, many people with autism might not communicate verbally, but do use other forms of communication to relate to others. People who are not skilled in this or don't take the time to learn how the person communicates is not listening to the person.
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Name	Joanne Van Hoosear
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jobless autistic
Demographic	Autistic individual
Response	Difficulties in communication, learning disabilities, uncontrollable extreme emotions, sensory struggles like overload or sensory seeking, stress induced seizures, constant burnout
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Name	Jody McCormick
Demographic	Autistic individual
Response	Communication disabilities. Hands down. I have learned that no matter how articulate I am I can never distill what is in my mind into words. What I see through the lens of my autistic brain almost never correlates directly with any word or phrase in my vocabulary. So I just try to get as close as I can. Imagine you're on the 20th floor of a building overlooking a crowded street below you. In the room with you are a 24in by 48in canvas, one fine-point brush, various paints in small bottles, and one person you know. The person, unable to come to the window, asks you, simply "what is going on out there?". You get one color for every word or phrase you know and as many strokes of your fine-point brush as the person with you has patience -- and they get to ask you clarifying questions while they watch you painting. The only thing you're allowed to say to them is "that's not really what I meant" and must adjust your painting accordingly to answer any questions they have about it. That. It's like that. Over time, you get better at it, but still. Communicating is hard.
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Name	joe valenti, parent advocate
Demographic	Other
Response	all of the above especially for the most profound. Behavior.
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response	The ADHD, that I did not know I had, significantly impacted my education. Had I been diagnosed & accommodated, I suspect I would have performed significantly higher in school, and may have pursued a more advanced degree & career path.
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	Daily life!!! Fundamental safety issues, all activities require support and supervision. Where is the research to help develop more technology to make daily life doable for non-verbal people with profound autism?
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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	School and transition programs administered under IDEA / FAPE are not equipped to service people with severe / profound autism given their high prevalence of learning, intellectual, and other disabilities (usually equally severe). The result is an 18 year daytime respite program with very little value-add in key areas such as basic communication, social interaction, personal safety, and fundamental activities of daily living (ADL) skills development. Once such an individual ages out of IDEA/FAPE, adult programs for the underserved individual are all but nonexistent. In other words, I/DD social services are scarcest for those with the most significant needs.
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Name	John Yacks Jr.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication and understanding. I there has to be an understanding that we need the care to be explained concretely.
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	I was nonverbal until the age of 6. Being nonverbal and autistic presented many challenges for myself and my family, as well as accessing and utilizing supports and services from the school and medical communities. It also made it difficult to be among my peers and to be understood, which only increased my anxiety and depression. I have auditory processing disorder among other conditions, which still makes it difficult for me to understand what is communicated to me, which further complicates the things that I can do and how I interact with everyone around me.
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Name	Jonni Jordyn
Demographic	Autistic individual
Response	I had no learning disabilities, in fact, I had just the opposite. My teachers never advocated skipping me ahead due to my social issues (of which I was completely unaware) but they did send me up for specific classes like math, english and sciences. My gifts are in creativity and logic, which paved the way for music, acting, writing and computers, when they became publicly available.
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Development disability
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	Communication. My son has words but we consider him non verbal bc he is non conversational. He doesnt comprehend things bc he is severly cognitively delayed and also has Apraxia. This means he struggles to interact w peers and adults. He spends most time alone or w adults. He does not get to lead a typical childs life.
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Name	Joye, service coordinator in HCS program
Demographic	Service provider, health provider, or educator
Response	language must be learned in a group, otherwise, who will you communicate with? Isolating the person who cannot communicate by surrounding them with people who are unwilling to learn their communication styles is counterproductive
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Name	Jude
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	EQ -- no EQ + his innate deep sensitivity has to be denied. my 77 yr old autistic partner of 20+ yrs his EQ -- lack of emotional quotient -- lack of ability to relate, or to see others, disables him from accepting reality and thus is unable to earn a living due to his self-protective ONGOING DENIAL of his disability of his never diagnosed somewhere on the spectrum.
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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: “Health care is generally difficult, so many adult providers do not understand how to interact or communicate with your children. My children are young adults now at 21 & 23, & they still struggle to tolerate basic medical exams--blood pressure cuff, otoscopes, thermometers, much less injections. Both boys have had to be sedated in the hospital to undergo what would normally be outpatient procedures: dentistry & dermatology, for example. My younger son just had to be sedated, which was a long, stressful process in the local hospital because the anesthesia professionals were not trained to work with this population. The reason? He needed to have plantar warts removed, which you would normally do in the podiatrist's office with a local anesthetic. My older son has a suspicious lesion on his scalp that I suspect is basal cell skin cancer, so we're getting ready to have to go through a similar procedure with a dermatologist. “Other issues, such as ingrown toenails or cavities, should be considered, too, since these are normally minor occurrences, but for someone who is non-verbal & doesn't communicate very well, they can lead to infections.” “Prompt dependency gets in the way of authentic communication.”
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Name	Judy Stoltz
Demographic	Family member of an autistic individual
Response	I know know And any parent of SPELLERS know, But now YOU NEED TO KNOW there is not learning disability or cognitive issue, it is all motor issue Fine motor issues don’t allow them to use sign language or writing or typing SPELLING moves their communication into gross motor and there are no limits what they can learn
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	Lack of support for communication creates significant challenges for people with learning, developmental, intellectual, and communication disabilities–not just the latter. All behavior is communication and behavior labeled as “challenging” is often an autistic person communicating or responding to an unmet need. ASAN has repeatedly emphasized a need for widely available, robust communication systems, including access to AAC devices. As noted by Communication FIRST, only “some of this technology” is available “some of the time, in some states, for some people who can somehow navigate their byzantine, and often biased, processes and requirements.” We must do more to increase access to communication technology. The lack of widely available plain language (PL) and Easy Read (ER) materials creates barriers for many autistic people with co-occurring disabilities. PL and ER materials give us more agency in decision-making, which has implications on guardianship determinations. As ASAN stated in our comments on HHS’ proposed Section 504 changes, “guardianship is predicated on a ruling that an individual cannot make their own decisions or communicate them effectively. Providing disabled patients with health care materials in plain language and Easy Read would make these decisions substantially more accessible to those with a range of cognitive, developmental, intellectual, or neurological disabilities and thus reduce some of the impetus for guardianship applications.”
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response	The most significant challenge is the way in which society feels these issues can be "trained" away. Meaning autistic individuals are required to conform.
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	My child has difficulty connecting with peers.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Intellectual disabilities - there are not enough therapy techniques that deal with the fact the intellectual disabilities often co-occur with autism, particularly with mild ID. There is more emphasis on severe ID, however mild ID with autism can hinder a young adult's potential success with employment as they tend to fall in the cracks between not quite "typical", but not impaired enough to be good candidates for the low level jobs typically ascribed to the ID population. These young adults can succeed if they had informed, educated support personnel and educated employers to provide minimal supports that can help them be successful and engaged citizens. Communication Disabilities- repeat of the above verbiage. Simply insert "Commmunication Disability" in place of ID. With this addition: When a person with autism cannon communicate, which can happen even with a high functioning person under duress, that is a dangerous situation waiting to happen. Our first responders need more training to prevent negative outcomes with interacting with these neurodiverse individuals.
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response	Independence, physical health issues and others.
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Name	K
Demographic	Autistic individual; Researcher
Response	A high proportion of autistic people have ADHD, and even those who aren't hyperactive, inattentive, or impulsive still struggle with executive dysfunction in the form of difficulty initiating, transitioning between, or stopping tasks. This can make autism much more challenging. ADHD can often lead to an overall more severe presentation, and executive dysfunction without ADHD is often offered no support. Similarly, "spiky profiles" often lead to overlooked strengths or unmet needs, including specific learning difficulties or processing weaknesses being ignored. Finally, individuals with co-occurring intellectual disability or language impairment are among the most vulnerable autistics, yet they're often overlooked because many of the most severely impaired individuals are unable to participate in self-advocacy, are difficult to research, and require high levels of support that many are not willing to acknowledge.
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Name	K
Demographic	Autistic individual
Response	When I was a kid, I didn’t know how to act. What was a normal thing to say. But I loved reading, I was hyperlexic. So I would become characters I read about or saw on tv—because it was the only representation I got as to behave. it got to the point where I had to sit outside of the classroom in kindergarten while I waiting for the class to finish reading Junior-B-Jones. And it was the reason I wasn’t allowed to watch SpongeBob as a kid. I never had explicit issues in school. I was an overachieving kid, but when I got to highschool, no one cared about it, and I had no resource for when classes got harder. I didn’t develop study habits, I got increasingly frustrated with everything. If something didn’t immediately spark my interest—I didn’t care about it. It was hard to pretend to be interested in conversations I could care less about.
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Name	K
Demographic	Autistic individual
Response	Mostly executive dysfunction. I'm personally hyperlexic so I'm able to take in and understand information easily but starting and organizing tasks is a struggle
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Name	K
Demographic	Autistic individual
Response	My main challenges showed up in dyslexia and a disinterest in reading for most of my early education. This led to me being put in additional reading help. I also had a lisp and was in speech therapy for many years
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Name	Kaalyn
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Auditory processing issues, dyslexia, dysgraphia, and speech conditions create an even greater barrier between us and the world we're trying to interact with. People assume we're dumb, slow, childlike, or require our parents to speak for us. Many of us are actually the most intelligent person in the room but can't get a word in edge-wise. But if we mask well and perform social norms beautifully people automatically flip the script and say we're lying. Self-diagnosing. "High functioning". Or other invalidating sentiments. We're caught in a double bind just to be heard. Let alone respected and valued.
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	Sensory overload, dyspraxia, chiari malformation, apraxia
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Name	Kaela
Demographic	Autistic individual
Response
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Name	Kai
Demographic	Autistic individual
Response	Anxiety combined with my lack of understanding of general social stuff is absolutely terrifying and I'm often nearly paralyzed by anxiety in social situations to the point my stims turn self harming without me noticing. Me fingernail beds are often torn and bleeding from it.
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Name	Kai C.
Demographic	Autistic individual
Response	Communication is number 1 for me the absolute worst to deal with. Trying to convince neurotypical people that you literally say what you mean without anterior motives or implied meaning is the most annoying and irritating thing in the world. Learning disabilities are usually at fault of the teacher in my experience if I get someone who can explain something or answer my questions in detail when they come up I don’t have a problem. Personally the worst issues I have with this are with religious people who would rather preach at you than actually answer a reasonable question about the very thing they are attempting to teach you, as if I as someone who doesn’t experience the world in the same way am to just accept everything they say as fact when they cannot back it up. This led to a lot of abuse as a child, and leads to a lot of assumptions on the part of others and miscommunication as an adult. If you give me the correct words to explain a feeling or you can draw me a picture I can better understand, but I don’t understand irrational “emotions” when you only describe them as “I don’t know, you just feel it.” We need more education about neurodiversity in general in religious organizations.
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Name	Kaisi rolfe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication and social skills
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Name	Karen
Demographic	Family member of an autistic individual; Other
Response	The biggest challenge with intellectual disability relates to the level of functioning in all areas. Speech deficits significantly impacted his communication and developmental disability as well as intellectual disability affected quality of life and the entire familys quality of life
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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	Inability to speak what is known, perceived and felt, observed and understood is a disadvantage to many children and their families. Everyone is happy when forms of communication are identified for needs, feelings and thoughts, even if the result is not what is popular or good news. Dealing with the news one has a hard time hearing is difficult part and more help and support for parents, families and other relatives is needed for the best outcomes. Support groups, on line, to allow parents and others to share information on techniques and problem solving, would be helpful during times children with these problems do not attend. Perhaps late evening?
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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	Existing misalignment of teaching skills impede human progress
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Name	Karen Gee
Demographic	Family member of an autistic individual
Response	Unable to have friends. Doesn’t fit in with peers. Socially awkward. But wants to have friends.
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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	Medications either don't work or they present onerous side effects that are so dominant, it is not worth any good they might do. How can anyone tolerate your childs head snapping forward constantly, ridgid posing, constant grimacing. The meds are just horrible.
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response	The most significant challenge in this area is communication. Regardless of developmental disabilities, intellectual disabilities, etc., if an individual is not able to communicate effectively it will impact all other areas, including behavior, learning and mental health.
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	Regarding communication, schools give up too early on teaching whatever form of communication (device, sign, picture symbols, combinations) that the individual with Autism can learn. If they don't learn it fast enough, they just give up. Schools also don't provide enough communication devices and often bog down parents with agreements they have to sign that if it breaks they will pay for it.
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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	Marginalization has a major impact on wellbeing; people having low expectations of you, leaving you out of decision-making and not being active participants in your own care and life decisions has major impacts on your sense of self, health and wellbeing. The same poor outcomes listed under the medical and mental health questions also apply here. All areas of life are impacted by how people are treated on a daily basis in their communities as well as by health providers, and how much self-direction people experience. Further, many school systems are not equipped to meet federal guidelines for adequate accommodations to ensure each student meets their potential. Lack of understanding, funding, knowledge, and acceptance all impact this.
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Name	Karey
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA causes developmental disabilities and communication disabilities
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Name	Kari Johnson
Demographic	Autistic individual
Response	Ability to care for oneself or work without much support.
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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	Dyslexia, dyscalculia, dysgraphia
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Name	Karoline Moxham
Demographic	Family member of an autistic individual
Response	Learning disabilities are challenging, because on the surface, my son appears typical. People don’t understand that it takes him a bit of time to process information. Society is not tolerant of that.
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Name	Kat
Demographic	Family member of an autistic individual
Response	It makes helping them, empowering them so much harder. So many people demand that autistic folks communicate like neurotypical folks, putting a huge barrier between them and the treatment they need
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Name	Kate D
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Trouble navigating social situations, dyscalculia, dyslexia, trouble verbalizing thoughts and feelings, trouble with interoception, disordered eating.
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Name	Katelyn
Demographic	Autistic individual
Response	I have dyslexia, dyscalculia, and ADHD and it makes it hard not to procrastinate which causes my anxiety to get bad and I get so stressed out I end up throwing up. I also have trouble with math and can only do multiplication up to 5s and I can't add multiple digits in my head. Dyslexia also makes it difficult to read and speak. I stumble over my words constantly when speaking or say the wrong thing.
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	Because of the multiple layers of impairment that include intellectual, developmental, self control communication and sensory differences (impairments) these innocent people are at high risk of.abuse by everyone from caregivers to our legal system. It is a very scary world every day for families with loved ones with autism. Our higher needs adults are not represented in the "not about me without me" as they need proxies to speak for them. The low needs autistic people do not represent the high needs group.
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Name	Kathleen Walker
Demographic	Autistic individual
Response
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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
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	The assumption that all autistic people have learning deficits, which excludes many autistic kids from diagnosis early, as well as the lack of understanding that autistic people can be highly gifted intellectually but still have deficits that need support. There are many gifted autistic folks who are also dyscalculic or dyslexic, but do not get any support because they’re “smart.”
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response	The hardest challenge caused by these conditions is that the majority of day to day activities in life are more configured to those without these conditions, leaving those with them alienated.
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Communication differences.
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Name	Kayn L
Demographic	Autistic individual
Response
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Name	Kd
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Dyslexia Social communication disorder sensory processing disorder Developmental disabilities— sometimes genetic disease linked Sensory processing disorder
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Name	Kelley, parent
Demographic	Family member of an autistic individual
Response	1. In regards to intellectual disabilities, it is labeling people with severe IDD as severe autism. They may have autism, but the IDD is the significant issue. Not labeling the disability correctly tends to lump them in with everyone in the autistic population, and the strategies are often vastly different. 2. Helping with communication disabilities is too often focused on verbal communication, instead of all forms of communication. 3. Too often, the people helping are focused on what needs to change per their perspective.
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Name	Kelli
Demographic	Autistic individual
Response	Thinking differently, processing language differently, needing more accommodations etc in school. Having hard time articulating feelings and thoughts to NT people.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning disabilities, social interaction disabilities,
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response	One of the most significant challenges caused by communication disability or developmental disability in an autistic individual is that they are not able to be tested on what they actually know. Expressive language is so low that you'll never know how much that person actually understands about the world or how they feel.
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	All of the above The shift of the childhood autism “developmental disorder” into the realm of labeling it a mental health condition simply because the individual turns 18 is concerning. Adulthood does not change history nor erase the developmental difficulties. A developmental disorder that persists into adulthood is no less a developmental order because one had a birthday.
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response	Lack of appropriate IEPs or adherence to IEPs Teachers tell us they have not had enough education on autism to understand how to best address or management within the classroom setting Classroom aides or assigned 1:1 have not had education on autism and while well-meaning often utilize interventions that exacerbate the behaviors rather than help. Lack of sensory or calm rooms in schools
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Name	Kelly Tabeling
Demographic	Family member of an autistic individual
Response	Accessing education in a school environment
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Name	Ken
Demographic	Autistic individual
Response	Throughout school, I was regarded as [redacted]. However, I am now retired from a very successful career as an electronics design engineer. In school, I was considered to have a learning disability. The reality is that I have no problem learning, however, I have a problem being taught. Being taught is a social process inducing social anxiety making learning very difficult. On my own, I can learn just fine. Verbal communication disability is due to my lack of control of my tone and expressions. The other person includes tone and expression as part of the communication, but I have no control of that. They always interpret something more than the words I speak, creating confusion and frustration. This is a known issue called the 90 percent rule.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Many autistic people are gestalt language processors, but this is not taught in most speech pathology programs. Therefore autistic individuals are treated as though they are disordered analytic processors, when they actually have a different method of acquiring speech altogether. This means that resources are used ineffectively to apply moot strategies to the majority of autistic people with speech delays.
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	Issues associated with the expression of ideals and the definitions of words and their meanings are the most challenging from this "other conditions" category. It's damaging to my mental health and well-being to live in a society that claims to value and respect fairness, equality, honest, and doing the right thing when all experiential evidence indicates that none of those things are actually valued or respected, but rather mocked and disrespected.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	I don't like the term learning difficulties. If rather say learning differences. That's what suits myself and my family better. What would help, is to have explanations given in a logical sequence and then to go over it all once we have the whole story. So, maybe this will answer better - or is a significant challenge when information is presented in a way that only gives small pieces of information that seem irrelevant until afterwards. We need to know what info is the most relevant / important - and why. Knowing the 'why' can make a whole heap of difference.
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Name	Kerry
Demographic	Family member of an autistic individual
Response	Communication disorder
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Name	Kerstin Powell
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	In my own experience, the mental health, learning disabilities, and, social communication challenges prevent many autistic individuals from being able to access care. Again, people see the autism and don't treat the co-occurring problems as a different set of problems for the individual.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The most significant challenge is finding proper care and treatment that will allow him to become the best version of himself. My son can learn, and improve from these behaviors, but it takes time and the proper approach/treatment. He made progress while in his post high school special needs program but will age out this year and there are limited/no viable options post 21.
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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	Schools are often not equipped with the tools or personnel to help a child who has Autism and a co-occurring disability to manage their behaviors, and this results in a lack of access to an education with their peers without disabilities. When children reach a “transition period,” their school programs set up experienced-based learning experiences, like going to work at a local organization. Children with challenging behaviors are often not included in these learning opportunities because the businesses that contract with schools will not work with students. Students with Autism and behavioral needs are not given the same opportunity to learn about independent living skills or employment. Students with Autism and co-occurring conditions are often subjected to outdated discipline guidance, causing them to miss critical points in their education. Restraint, seclusion, and school dismissals are practiced around the country, and cause students to miss class time, thus falling behind in their education. Individuals with Autism and co-occurring intellectual and mental health disabilities too often end up in the criminal legal system. Social and communication challenges present significant barriers to navigating legal proceedings as an Autistic person, and courts generally fail to consider Autism a mitigating factor in proceedings. This is especially true for individuals with Autism that intersect with BIPOC communities.
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Name	Keyunna Harris, Caregiver
Demographic	Family member of an autistic individual
Response	High support needs/non-speaking autistics, for sure my daughter, face challenges as soon as she wake up until she possibly finds sleep. When there are communication deficits along with developmental and learning disabilities, teachers give up on the child. A difference in brain functions immediately equals intellectual disability because of the lack of understanding or training on autism in the public school system. For example, most high support needs autistics will not be able to fill out this survey because of the broad questions and no clear modeling of the answer. High support needs autistics with other conditions will still most likely not be heard.
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Name	Khalila
Demographic	Autistic individual
Response
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	For persons with Autism and disabilities, stigma is still an issue. Housing for those who are in services and/or living with families, is still not comparable to society. Services are hard to acquire for those who were not identified in the school system as potential recipients of support. Services are almost non existent in rural areas, in more populated areas staffing and support is a major challenge.
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Name	Kris Guin, Queerability
Demographic	Autistic individual; Representative of advocacy organization
Response
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Name	Kristen Brake
Demographic	Family member of an autistic individual
Response	Communication and speech delay, learning disabilities, developmental disabilities, and intellectual disabilities
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Finding the right educational resources to teach a non-verbal child how to read etc. more over, the right resources to test how to know what the person is cognitively capable of. For example, I know that my nonverbal autistic child is able to read as he can independently point to sight words, consistently even though he was never taught to read . I would love to find an educational program that allows him to further his literacy skills and also test his literacy skills so that I might know exactly where he is academically. Most of the assessments and curriculums out there require a verbal component.
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication, whether lack of speech or gifted talent overlooked.
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	inability to communicate, intellectual and developmental disabilities, behaviors that arise out of an inability to effectively communicate needs/wants
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response	Communication disabilities
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning disabilities being under resourced or misunderstood can lead to depression, anxiety, lack of self confidence, and feelings of hopelessness. The category of learning disability should also expand to include the ways that not only dyslexia is misunderstood but hyperlexia as well. Hyperlexia being seen as entirely strength based can be problematic in children who commonly struggle with comprehension to match their strong decoding skills. Learning disabilities need to be found and resourced at earlier ages, and supported throughout their time of need. Communication disabilities need to be resourced- no individual should struggle to access any multimodal system of communication. AAC and sign language should be commonly taught, funded and resourced in classrooms and public spaces. Non speaking advocates need to be at the center of policy and education.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The continued stigma that autism is an intellectual disability
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Name	Kylie
Demographic	Family member of an autistic individual
Response	Learning, developmental, Intellectual, sensory overload
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Name	Kym Pettitt
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Developmental disabilities
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Name	L. Void
Demographic	Autistic individual
Response	I’ve lost months of memories this year recovering from ptsd. My short term memory was also massively impacted early on after the trauma. I needed direction from my employer in writing but my boss didn’t understand. He just kept getting mad that I couldn’t remember things he rattled off in passing the day before. I tried to explain that I was having flashbacks and crying spells, sometimes derailing myself from work for up to three hours at a time. He chose to believe that I’ve just become disillusioned with the job and I’m quiet quitting when I disappear during these episodes. No one gives a [profanity redacted] what I’m going through until I file the paperwork for accommodations. And as soon as that happens- I will be the bad guy. Sure, they’ll comply. But they’ll also be more critical of my work in other areas or maybe I’ll be the next one laid off, failing to meet some new metric they’ve manufactured. No one cares about us. Everyone thinks their own battle is just as hard, so why should autists get special treatment and accommodations?
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	Not being listened to or taken seriously
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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	Both my son and I struggle with learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities. It is difficult for me to hold down a job, and I doubt my son will ever be able to have a job.
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	Communication disabilities, expressive language disorder, difficulties following multi-step instructions
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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
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Name	Laura Mansdorf, Mother of an Autistic Child
Demographic	Family member of an autistic individual
Response	Often times, issues arise when my daughter cannot communicate verbally or using her AAC. Generally, when she cries spontaniously without a clear reason, she is unable to articulate complex thoughts. It is a challenge to be able to aide in her care. In regards to her school work, she is able to complete tasks with extra time, repeated refocus and an individualized approach to her learning. Standardized learning does not get through to her-- being able to teach her 1:1 has been the most successful way to help her gain skill. Teaching the basic skills in order to learn have helped her understand how to read, retain the story, and math skills. Spending time teaching her life skills has helped expand her view of the world. The goal is to teach her everything nessessary to be as independant as possible.
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Name	Laura Mewbourn
Demographic	Autistic individual; Family member of an autistic individual
Response	Diagnosis and support in the academic setting. My son and I are twice exceptional. I did fairly well in school, enough that any perceived gaps in my academics were considered a lack of effort rather than a lack of ability. My son's experience (he is 7) has been a little different only because I am hypervigilant. His school has actually declined testing (OT) because they decided he didn't need it, and yet we consistently receive feedback that WE need to work on his writing/fine motor skills. Because he is at least average in all markers, they have decided he does not need additional support services. I suspect he has other learning related challenges, but as long as he is doing okay unsupported, our only choice would be to pay out of pocket for further evaluations. I find the rigidity of school extremely difficult.
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Name	Laura Saenz
Demographic	Autistic individual; Family member of an autistic individual
Response	ABA is the only “treatment” in the school setting and its straight up abusive. It does not help with any learning disabilities. Most of us figure out our own “systems” for our disabilities bc of the unintended abuse within the education system. After figuring that out, later in life the physical symptoms flare up worse. Usually during pregnancy and menopause.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	Getting others to recognise and acknowledge PDA in the DSM-V so that it is taken seriously by professionals and not responded to through a behaviour modification lens as this exacerbates the child’s responses leading to burn out and trauma. Nervous system activation needs to be viewed as beyond the child’s control with the understanding that adults need to modify their practices to accommodate the child if the child is to successfully engage.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	Autistic individuals with ID/LI are a vulnerable population who are at increased risk of victimization, but there are considerable barriers to their inclusion in research and in autistic self-advocacy. They also require a level of support that is stigmatized even within the autistic community, especially among those with lower support needs. Additionally, in my personal experience, ADHD compounds with ASD and makes task switching and executive functioning more difficult. Basic ADLs, like eating, brushing your teeth, or taking a shower, can become enormous tasks that are all the worse for their regularity.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Specific learning disorder, below average working memory, gestalt processing, auditory processing difficulties
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	We also understand that there may be other comorbid conditions associated with autism such as LD, dyslexia, ADD/ADHD, etc. It is important for both educational and medical professionals to look at the necessity of additional interventions, although some developmental pediatricians may note there is nothing more that needs to be done medically based on if the child is already on medications etc.
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Nervous system dysregulation caused by overstimulation, lack of accommodation, lack of resources, neuromormative assumptions of heath and wellness.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response	The learning, developmental, intellectual and communications disabilities make motivation and goal setting incredibly difficult if not non existant . There is a huge struggle as my daugher ages to assist her to grow and be independant and enjoy her life and be responsible for her self
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Difficulty reading social cues
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Name	Leanne Maidment
Demographic	Autistic individual; Family member of an autistic individual
Response	My children are verbal which means people expect them to be able to communicate, but they are unable to communicate feelings and other things.
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Name	Leanne-Claire Civiletti
Demographic	Autistic individual; Other
Response	The inability to answer questions and explain symptoms. I expect to much and assume that my symptoms will be believed. I go into absolute panic at the idea of filling out. Medical intake only to be dismissed , lack of awareness. Invisible. Just because I can talk and respond does not mean that I don’t need to use my communication assistive technology. I’m so tired of being told I’m doing fine when I’m not and speaking caused physical pain and anxiety as I can read what I’m saying or what’s being asked of me. Then I’m labeled with a description which I would not have if my disability was accompanied as asked.
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Name	Lee S.
Demographic	Autistic individual
Response	In my experience, each of these can take their turn as being the most significant depending on the situation at hand. Communication disabilities occur daily, whether recognized or not, but the developmental, learning and intellectual components may not even be know to the person who is dealing with them and each of those can create incredible challenges in ordinary situations.
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Name	Leeann
Demographic	Autistic individual; Family member of an autistic individual
Response
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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	For those with autism and intellectual disabilities it is almost impossible to find psychiatric facilities/stabilization units that are equipped to help them. It is hard for people to learn what my son is saying even though he is verbal. The constant revolving door of staffing issues will ensure that much of the time the staff that will care for him will not be able to understand his communication.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	Developmental
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Name	Lesley
Demographic	Family member of an autistic individual
Response	communication, learning, intellectual and developmental disabilities. I have twins...they are 15, one is like a 3 year old and one is like a 9 year old...with men bodies. Can hardly find any help
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Name	Leslie
Demographic	Autistic individual
Response	I'm fortunate in that I am verbal. Others are not so.
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response	My son has intellectual disability. He is a 6’ tall 250 lb man body with the mental development of a toddler. He cannot speak, read, count. Etc. He uses an iPad communication system to make simple requests for food or daily activities. However he cannot express emotions, recall and share his experiences or interact in most basic ways with us.
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	children and adults with signficant IDD or DD are much less able to access the trained care takers they need for 24/7 care. They often cannot be left alone for any length of time and need to be cared for by highly trained individuals. The individual may not be toilet trained -- and may not be able to be --- which means caring for a 6'3" 2 year old man in all bathroom related ways. Finding someone who is trained, caring and willing to do all these things, is rare. Determining and then finding the right placement, after they leave their parent's home, is extremely difficult. The facilities often exist but there are very few good ones. The parents do not live forever, and often shouldn't be caring for autistic adults as long as they have to, due to lack of care options.
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Name	letitia smith
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Lewese, Child with ASD with PDA profile
Demographic	Family member of an autistic individual
Response	My son had emotionally shut down and will not communicate his needs to others or myself, which makes it extremely hard to help him. No eye contact, barely talks despite being very intelligent
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response	My child deals with PDA (Pathological Demand Avoidance) as well as an intellectual disability, ADHD, and autism impacts his ability to verbally communicate. He did not speak until he was 3 1/2 years old, and utilizes scripts often. When he is unable to articulate clearly what is going on in his head, it can trigger his PDA responses (screaming, hitting, biting, breaking things, destroying things). When he doesn't understand something, it can trigger his PDA responses. When things don't go the way he planned or expected, it can trigger his PDA responses.
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Name	Linda
Demographic	Family member of an autistic individual
Response	Other conditions" all of the above
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Name	Linda , parent of adult with autism
Demographic	Family member of an autistic individual
Response	The inability to communicate is a horrible situation to be in! We make assumptions based on peoples behavior that is often completely wrong! There should be a much greater emphasis on teaching communication skills in school. Part of this process also required the necessary motor skills to accurately point to pictures, words or letters. We also make assumptions that people with autism who are non-speaking, are not intelligent. That has not been shown to be the case in most instances. My son has been able to communicate by spelling and proven to us that he is smart and funny.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	Being unable to participate or have any involvement in the outside world
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Name	Linda Jones
Demographic	Family member of an autistic individual
Response	My daughter has a profile of autism called Pathological Demand Avoidance (PDA). We have been struggling to find providers who are aware of and able to support my daughter who is 7 years old. Many of these providers who are supposed to be helpful have failed to help her and have inadvertently made things worse, due to their lack of knowledge. The school system called into question my credibility when I mentioned that she has a profile of PDA as there is no formal diagnosis available in the US at this time. We are struggling with her behaviors and obtaining services from knowledgeable professionals. Our family as a whole has experienced a decrease in our quality of life because of the lack of research and information available on PDA, which presents dramatically different from typical autism.
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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	Proper social and keeping the conversation going.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	Medication used to treat rather than evidence based interventions such as structured, predictable and consistent treatment. Poor staffing leads to poor programming.
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Name	Linda Schepis
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Feeding disorders.
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Name	Linda, Parent
Demographic	Family member of an autistic individual
Response	Can’t speak, Incontinent, difficulty learning to use communication device. 19 yo with developmental ability of a two-three year old.
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Name	Lisa
Demographic	Autistic individual
Response	I personally also h
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	I’ve worked with students on the spectrum with a wide range of abilities and additional disabilities. The additional layer of autism primarily adds social/communication issues. Sometimes students do not understand instructions or explain things unclearly. Sometimes it is the uneven maturity (young socially but knowledgeable). Sometimes it is the inability to verbalize when frustrated or distressed.
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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	Lack of accommodations for communication differences. Accommodations include written notes and communication and closed captioning.
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Name	Liv
Demographic	Autistic individual; Family member of an autistic individual
Response	cost of seeking help
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Name	Liz
Demographic	Family member of an autistic individual
Response	Dyspraxia, comprehension issues
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Profound Autism, by definition, includes intellectual disability and communication disability. This combination of disability leads to profound challenges for individuals and their caregivers and a need for individualized teaching and behavior support. This segment of individuals has dramatically different needs then others with Autism and research should be directed to the specific needs and challenges of this population.
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Name	LizC12, Self
Demographic	Autistic individual
Response	I find it difficult to tell if people are being serious with me. Sometimes I don't know how to think of a good response to things people talk to me about. I always had issues with numbers in school, terrible at math.
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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	Autistic individuals often face complex challenges due to co-occurring conditions like learning and communication disabilities. The Evolutionary-Stress Framework (ESF) views these as part of a complex adaptive system where each condition interacts dynamically, akin to varied weather patterns in different climatic zones. Traditional healthcare approaches tend to treat these conditions separately, leading to suboptimal care for autistic adults, who commonly have intertwined health issues. This fragmentation overlooks the interconnected nature of these conditions and their collective impact on an individual's health and well-being. The Center for Adaptive Stress advocates for a systems approach, treating these co-occurring conditions as a cluster or constellation. This shift from a fragmented to an integrated treatment model focuses on emergent allostasis, recognizing the adaptive stress responses unique to each neurotype. By understanding the interplay of these conditions, healthcare providers can tailor interventions more effectively, aligning with the diverse neurotypes of individuals. This approach, considering the interactive nature of disabilities and societal influences, promises more effective, personalized care and fosters a society that values neurodiversity and resilience.
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	When my daughter is overstimulated, she often cannot speak as her brain cannot formulate words to speak. Also, during times of overstimulation (meltdowns), my daughter, if she can speak, must talk very, very slowly to be able to articulate every word as it forms in her mind and flows to her mouth (this is how she explains it to me)
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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	I think one of the biggest places I see problems with co-occurring disabilities in learning, communication, and intellect is education. Education systems are set up to teach neurotypical students, and so those with co-occurring conditions are subject to isolating environments, where individuals are not learning at the same level as their peers, and not given the proper accommodations to meet those needs. I also think a big problem is undiagnosed learning, communication, and intellectual disabilities as this is met with more punishment from the school system and internalizing negative self-esteem. I've seen autistic adults who have co-occurring conditions who have deep wounds and Trauma from their time in the school system. We need a major reform to both mainstream and special education classrooms to better accommodate students with co-occurring conditions. Another issue I see, is people who have co-occurring conditions in Care Homes where they are privatized, creating a highly restrictive environment. Individuals are not given the level of autonomy that they could be given. For example, many individuals in care homes with these co-occurring conditions, are not allowed to go out and engage in adult activities like going to a bar or club, they are required to abide by strict curfews, and because of poor working conditions see a high turnover in caregivers creating an unstable environment and escalating meltdown behavior.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response	Having no learning / developmental or intellectual disability underplays the significant, yet hidden disabilities that autistic people experience. Looking “normal” and assuming neurotypical characteristics is highly distressing.
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I was forced to mask from an early age. Masking is exhausting. It is taking years to unlearn and find myself again. At 30, I hit autistic burnout and entered major skill regression. I was nonverbal for six months. I was unable to leave the house or care for myself, or reach out for help. My partner has been my lifeline. I’m still recovering. I’ll take any chance to rant or write about my interests - like autism, especially my own autism. Still, this form has taken me six weeks to fill out. And there are so many autistic voices who cannot contribute. I was diagnosed in my 20s. As a child I was hyperlexic, teaching myself to read before I was forming permanent memories. But there was no comprehension, I was stimming on letters. School was a game, memorizing information just long enough to get a high score. But I refused to do busywork. Beating or failing me didn’t motivate me. Still I have no tolerance for things that aren’t my current hyper-focus. Because I did well academically, my lack of social skills was overlooked until I was a teen. Overnight I went from genius child to social pariah, without having changed my behavior. Miscommunications are seen as malicious, asking clarifying questions is questioning authority. I don’t know how to close this gap. I’m not confident I’ve answered these questions in any sort of competent way. I struggle to know what is obvious, what is only personally relevant, what is fluff, and what is vital to the reader’s understanding.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response	My son is nonverbal, along with intellectual disability. This makes it almost impossible for anyone but his immediate family to be able to understand and communicate with him.
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	intellectual disabilities
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Name	Mabel Thomas
Demographic	Family member of an autistic individual
Response	Developmental and communication disabilities
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Name	Maci Barbour
Demographic	Autistic individual
Response	Speech impediment, dyslexia, selective mutism
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Name	Madeline Lodge
Demographic	Autistic individual
Response
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Name	Madison
Demographic	Autistic individual
Response	I struggle to maintain relationships with others due to social struggles, I have a hard time keeping a job due to my constant overwhelm, I can't maintain a romantic relationship due to communication issues, I can't travel or particiapte in activities I would like to due to sensory issues
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Name	Maegan Hayes, Social Science Specialist
Demographic	Autistic individual; Family member of an autistic individual
Response	The lack of representation to provide guidance through processes. As often times, repetition is the hallmark of understanding many difficult and confusing processes within the VA systems.
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Name	Maeve Sherry, Pan-End-It!
Demographic	Autistic individual
Response
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Name	mags, diagnosed autistic
Demographic	Autistic individual
Response	We experience a sensation of being on the other side of a window than the general public. We are manipulated more likely than our allistic peers and taken advantage of as well. the difference of being welcome in community and being treated like we're wanted there runs deep for us.
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Name	Maija Vance
Demographic	Family member of an autistic individual
Response	The inability to attend school and also to participate in a home school curriculum makes learning challenging for my son with PDA. He is behind his peers in school for this reason.
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Name	Mara LaViola
Demographic	Family member of an autistic individual
Response	The failure to presume competence, teach multi-modal forms of communication, and the significant educational loss experienced by late identification of autism itself or the many co-morbid physical and mental disorders that can occur. This leads to significant educational loss. These individuals need real opportunities for life long learning that is meaningful, accessible, and built on strengths.
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	All of the above. For example, my daughter was born with a rare genetic disorder. Under that genetic disorder, she has multiple diagnoses that effect every aspect of her life. I’d also like to point out that ob/gyn and reproductive health is grossly overlooked. Case in point, this survey so far has not addressed that issue.
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Name	Maresa
Demographic	Family member of an autistic individual
Response	Down syndrome with co-occurring autism presents significant challenges, because it causes many of the issues faced by autistics, combined with intellectual, speech, and processing difficulties found in those with Down syndrome. There needs to be more research dedicated to this dual diagnosis, and more resources for parents and caregivers of those with both diagnoses. Their needs are complex and cannot be easily addressed by knowledge or resources that target only one of the diagnoses.
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	Traditional medicine simply does not always know how to treat beyond the typical ABA, OT, speech, etc.
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	1. DISCRIMINATION 2. Social isolation 3. Anger issues
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Name	Maria Maiorano
Demographic	Service provider, health provider, or educator
Response	Some of the most significant challenges caused by other conditions that co-occur with autism In my experience are communication problems. This creates many barriers for the individual to express themselves leaving staff/families/doctors guessing what the needs are that have not been met. Building communication and social skills takes many years, and the intellectual disabilities vary widely, therefore, this is definitely a significant challenge.
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response
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Name	Mark Byam
Demographic	Other
Response	Reading, staying focused.
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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	Not seeing each part of a person through the lens of the separated and layered challenges that they are experiencing.
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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	Please see: Gehret, Melissa. “Autism and Learning Disabilities.” Spectrum of Hope, August 6, 2020. https://spectrumofhope.com/blog/autism-and-learning-disorders/. Accessed January 10, 2024. “Autism Spectrum Disorder is not a learning disorder. However, ASD’s impact on verbal and language skills, social interaction, executive function, and motor control can all cause significant developmental obstacles to learning. Children with ASD may develop language at a later age than others, use language differently compared to their peers, or may not communicate with language at all." Another huge and frustrating problem regarding learning disabilities for children with autism is that most school systems refuse to implement research-validated curricula and methods for teaching these students. For example, Direct Instruction (DI) curricula, while initially designed for typically developing learners, are so well-structured that they have been proven to be effective for learners with autism as well. Please see this article, “Direct Instruction,” at the Association for Science in Autism Treatment (ASAT), https://asatonline.org/for-parents/learn-more-about-specific-treatments/applied-behavior-analysis-aba/aba-techniques/direct-instruction/?fbclid=IwAR3dDD_YIkj5RdO0BhMxHigSHuPs3C-YodApa9AgsypCy8SkdUa6VvjcW3g
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Name	Mary
Demographic	Family member of an autistic individual
Response	Communication disability
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Name	Mary Jane Reis, Parent
Demographic	Family member of an autistic individual
Response	Autism seems to have a big impact on reading comprehension. More studies needed to identify what reading programs are evidence-based to improve comprehension. Also, more work at the intersection of ASD and auditory processing disorders.
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	The greatest challenges are those that are born of not recognizing the full spectrum of conditions an individual presents with and only treating the most evident. For instance if someone presents with I/DD but also has autism, the service system may predominately focus on the I/DD and not appropriately consider the autism as influential. The whole person (holistic approach) is not always considered given the social service system design being more compartmentalized than most people...
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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 from accessibility and combinations from buildings transportation energy climate change etc everything is a definite challenge for individuals with autism and other learning needs
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Name	Mattie Wentz
Demographic	Autistic individual
Response
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Name	May
Demographic	Family member of an autistic individual
Response	communication disabilities, developmental disabilities
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I found it almost impossible to work in the typical American corporate workplace. the 40-hours+ per week, the socialization expectations, and the generally unhealthy environments of the workplace were entirely disabling for me. I felt perpetually misunderstood and told I was "too ethical" and "too sensitive" - When in all reality I was an Autistic Adult experiencing undiagnosed justice sensitivity and rejection sensitivity dysphoria resulting in major meltdowns that would be misdiagnosed as panic attacks for years.
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	This question is applies to the non-autistic community equally. I think this is more about our education system, not the individuals. All of these conditions co-occur with some part of the Autistic population, but access to individualized schooling with professionals who can identify the individual learning style is lacking.
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Name	Megan
Demographic	Family member of an autistic individual
Response	Dyslexia
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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	learning disabilities, social interaction challenges. It is especially hard to natively interact socially in a way that seems "weird" or "different" to the norm. A cultural shift towards acceptance of people and behavior that is neurodivergent needs to occur. People don't need to be fixed, but supported.
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	In my experience, teachers don't recognize many of the learning disabilities autistic children have to endure (auditory processing disorders, visual processing disorders, as well as dyslexia, dysgraphia, etc.) So the children are labelled intellectually disabled, or are treated as troublemakers. Some never get the education they deserve. The challenges caused by communication disabilities seem obvious: social interactions at all levels are affected, and the result is often rejection or victimization
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	There are significant challenges in access medical care and government assistance. The lack of communication accommodations leaves autistic individuals like myself without proper care. Our symptoms often get dismissed as anxiety without doing any testing you would do on someone that was not autistic. Instead of investigating symptoms and pain, you are told its anxiety. Doctors do no testing to verify this.
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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	The inability to properly communicate sensory needs. Most people don't know the reason a lot of Level 2 and 3 autistics have so many meltdowns is because they are overstimulated in some way. Too much sound, light, emotion, etc. All they need is to stim freely, have their sensory needs addressed (either by giving them stimulus or removing stimulus), spend time in their special interest, be allowed to do repetitive behavior, and be understood by their caregivers. ABA therapy is awful and tells autistic people they shouldn't be themselves which can lead to low self esteem, depression, and suicide. Going non-verbal occurs in all levels of autism and makes it difficult to communicate when emotions are high. I am a level 1 autistic with no learning or intellectual disability, yet cannot communicate at all when I am overwhelmed by emotions or feeling misunderstood by the person I am talking to.
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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
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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
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response	I would say the most significant challenges caused by his learning, communication, and intellectual disabilities may be informational processing, sensory challenges, lack of social skills, which leads to anxiety. I think the anxiety that comes along with these would probably be the greatest challenge. Meltdown due to inability to communicate or interact the way they wish to, and just everyday living activities. Something as simple as waiting in the line at the store is difficult sometimes because of his lack of understanding. Taking trips is difficult because he gets thrown off when his schedule changes. Every day activities become a significant challenge when you lack verbal communication and an understanding of social expectations, etc. trying to explain why we have to wait in line or why we're going on a trip is impossible, so it's almost like he's just being told to do something, and go somewhere. But can't understand why he has to do it, or why he's expected to act a certain way if that makes sense.
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Honestly differentiating between all of this is complicated. My son has add, anxiety, depression, autism and learning and developmental delays. I could use training and resources which could help me help him. It's complicated. Consequences and behavioral management can't be done as easily.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	I find it almost impossible to talk to people. I have no desire to interact because I am often misunderstood because of some subtext that is added to my actions that I did not even know about and didn’t intend. I also struggle with numbers as I can’t see them in my head .
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response	communication disabilities. There are few options besides the standard speech therapist. We need practiioners that understand all the other disabilities and how they can impact speech and how that should impact how they approach speech therapy. For ecample trying prompt therapy, understandering hyperplexity, autism and adhd together and how that impacts an individual.
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Name	Melissa McKenzie
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Challenges related to pathological demand avoidance can be significant when interfering with activities of daily living - as mentioned in previous responses, the inability to engage with others and find meaning through education, work, relationships can be an extreme drain on individuals and their families.
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Name	Melissa Sanchez
Demographic	Family member of an autistic individual; Other
Response	Communication disabilities. Sensory overload can make it difficult to communicate. Both to express communication and to take in communication from others.
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Name	MG Chappell
Demographic	Autistic individual; Family member of an autistic individual
Response	My son is dyslexic. I have communication issues and do not understand social cues as easily as others. I also have trouble with understanding and expressing emotions. It makes for difficult situations as I am intelligent but do not understand why certain communication protocols make no sense.
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Name	Mia
Demographic	Autistic individual
Response	I struggle with communication difficulties. It takes me a bit to hear what is being said, formulate a response, and then tailor that response to the relationship dynamics of whoever I'm talking to. It's often hard to articulate what exactly I want to say to someone and I often don't know exactly what the other person is looking for in a conversation with me. I often don't know how honest to be and don't understand/conform to the silent, implied emotional boundaries of a relationship, especially new ones. I've lately been feeling like a deer in headlights with most conversations and tend to stumble over my words. It is very frustrating feeling like I cannot articulate myself and I find most people do not give me enough time to process, breathe, and find a flow.
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Name	Michael
Demographic	Autistic individual
Response	I have a hearing deficit which is worsening as I age. It causes problems at work. I get dirty looks if people have to repeat things. I can't have more problems at work.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	Slow learning to speak clearly, slow learning to walk and crawl
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Name	Michael Raney
Demographic	Autistic individual; Family member of an autistic individual
Response	One area of concern for my family is school refusal (related to what is known in the UK as the Pathological Demand Avoidance profile). Class sizes as a factor in autistic students feelings about school and willingness to attend school within a mainstream setting.
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Name	Michael Rathbun
Demographic	Autistic individual
Response	Human communication involves many factors that are not apparent to the casual observer. Learning involves discovering that what is important for you is what is important for the teacher.
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Name	Michaela
Demographic	Autistic individual
Response	I personally didn't have any handicaps with learning. As far as development, my parents say i was slower to learn how to talk. I was, however, quicker to learn to read and am an avid reader (i believe the term is 'hyperlexia'). Communication is a thing i stumble over, however. I find it difficult to use the correct 'tone' when speaking and completely miss when people are trying to make a joke unless explicitly told. I don't understand when people try to 'hint' at something rather than saying it outright. To be honest, i still don't understand WHY people don't say exactly what they mean.
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Name	Michelangelo molina
Demographic	Autistic individual
Response	For individuals with autism, co-occurring conditions like learning disabilities may pose challenges in academic settings, developmental disabilities can impact daily life skills, intellectual disabilities may affect cognitive abilities, and communication disabilities might hinder effective social interaction
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Name	Michele Brady
Demographic	Family member of an autistic individual
Response	Once a child leaves the school system, it is hard to continue growth and learning. These young adults are still learning, but there are very few programs that support continued growth and learning. It falls to the parent to drive this process and it is a full-time job.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Intellectual disabilities, significant communication disorders and deficits
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	Lack of Communication which causes anxiety and anger
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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	Difficulty communicating needs/preferences and internal sensations including emotion, pain and other symptoms (nausea, dizziness, fatigue etc). Difficulty accessing appropriate screening for vision care, dental care, other health services. Dependence on adult/aging parents. Lack of community support/funding as autistic individual ages.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	There are many comorbids that impact the lives of autistic people, but to answer this question specifically I think the most significant challenges for autistic people are found in communication disabilities. I think we need more education and support in education, medicine, human resources, law enforcement, and government, on alternative communication styles and to help squash the myth that spoken speech is the only valid type of communication. More people outside of DEI, special education, and other disability work need to be comfortable with AAC, speech differences, and body language differences. If communication needs are better met, then treatment and support for the other co-occurring challenges like intellectual, developmental, and learning disabilities will suite the needs of the autistic individual better providing them the most opportunity for independence.
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Name	Michelle Linn, Parent, Provider
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	My 29 year old son is completely non verbal and uses an ipad (ProLoquo) to make basic requests and choices. Consequently, his functioning and quality of life are very limited. Many individuals with profound autism have been helped with Spelling 2 Communicate, which is a very painstaking process to overcome motor deficits in order to teach typing and, subsequently, significant communication. There are very few providers available and therapy is not covered by insurance or recognized by ASHA (American Speech-Language Hearing Association)
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Since our support models are driven by diagnosis, interventions are driven by the same model. We need access to services based on need not diagnosis or severity.
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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	This is individual, just like for non-autistic people. What needs to be researched is how to separate any challenge from autism when evaluation is occuring... recognizing that it is a condition expressed autistically, rather than saying it is all autism. For example, self-injury is an anxiety/PTSD behavior (seen in people who aren't autistic as well who have undergone severe trauma). It is a HUMAN response, not because of autism. The stresses that bring on the PTSD may differ from what is considered "normal," but it is the stresses, not autism, that are causing the PTSD behaviors.
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	All the above, plus pathological demand avoidance
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Appropriate resources, access to those resources and community support.
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Name	Mikol Bailey
Demographic	Autistic individual
Response
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	Lack of providers trained & equipped to treat & head off these problems. We need longterm access to treatment, therapies & services as adults not just young children! YES early intervention is key, but a person doesn't stop being autistic when they are sent to school or stop being autistic when they graduate high school or age out! Where are the services for adults with autism & where is the coverage for them?Schools fail them as they often don't recognize medical dx's parents bring them as valid which needs to be stopped in practice. Every student with an ada recognized medical dx needs a base level iep or 504 to help meet their ever evolving needs.Parents should not be fighting months before graduation to get a child help because schools pretend good grades are all that matter datawise when a child is bleeding on the floor in the middle of class from self injurious behavior caused by failure to accomodate or recognize medical dx that has amplified anxiety and functioning capabilities in trying to navigate school environment.
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Name	Mina
Demographic	Autistic individual
Response	Co-occurring conditions can exacerbate the struggles autistic people already face. Our systems are not designed to account for people holistically. Practices that are meant to accommodate autistic people might not be sufficient for autistic people who are late-diagnosed, queer, women, or POC, let alone those of us who are multiply disabled. Access to disability support is a significant issue. For example, SSDI applications are almost always rejected by default. A process that already demands executive function and communication (which are already difficult for autistics) now also requires follow-up and possibly legal representation. On top of the fact that this will take time, meaning the disabled person who has been rejected is forced to work at their own detriment or risk running out of money before back pay arrives. These same issues apply to other resources like short-term disability support. Autistic burnout also needs to be recognized as a disabling condition, it is not discussed in current medical models for ASD, but it affects every autistic person in my life. I personally had to take six months of leave from work when I could barely manage to keep myself clean and fed, but I was unable to get disability support because of the reasons described above. This severely affected my financial situation and cost me savings from 18 months’ full-time work.
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Name	Minela Fernandez MD
Demographic	Service provider, health provider, or educator
Response	Oral sensitivity leading to malnutrition. I had a 10 yo who only ate FF's. Parents refused to f/up/ take recommendations. about 3 yrs later, had a blood count so low he had to be admitted to the PICU for a blood transfusion. They finally got a GTube placed- which should have been placed much earlier. So getting PARENTS to understand the complications of malnutrition before it is too late. Reminding them that GTubes are for Longer term but still TEMPORARY while the child undergoes ABA/ OT therapy for feeding.
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Name	Missy Garcia
Demographic	Autistic individual; Family member of an autistic individual
Response	I feel like the most significant challenge in this area is not the ASD community. It’s the lack of knowledge outside the autistic community. The condition itself makes it very difficult for the person with autism to make the adjustments for the non-autistic person. So it’s not logical to expect the change in communication to happen on the autistic side. It makes more sense to create change in the neurotypical world, because they have the ability to do it. People on the ASD spectrum are actually very easy to communicate with, because they are so literal and logical. They get emotionally dis-regulated. When people aren’t like that with them. The problem is, most people do not mean what they say, so they don’t understand a person with autism being literal. Most people are defensive about the truth. People with autism can only handle the truth. We all need to understand that there are two very different types of communication happening so that we can understand each other.
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Name	Misty Cameron
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Honestly the biggest challenge is ignorance on the part of providers and the general public. When your patients have to be better educated on their condition than the providers are, there’s a serious problem.
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Name	Molly
Demographic	Family member of an autistic individual
Response	My son has a higher than average IQ, and yet he is reading well below grade level, despite 3 years of one on one tutoring. I wish there were support for research of PDA in the US--this is the first disorder I have ever learned of that PERFECTLY fits my son and provides explanations that help me and others find solutions that actually work for him.
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	Education, for sure. Communication is difficult in particular. Many people surface-judge a person's "level" of autism on how much a person speaks, but this is not enough information to determine how affected/disabled a person is by their differences. For example, my son speaks fluently and has a large vocabulary, but it is still difficult to understand his message. School tried to place him in gen ed as much as possible, stating "least restrictive environment." The problem is that "least restrictive environment" means the least restrictive setting a child can be successful-- and he was not successful in general education settings. He does much better in self-contained classrooms where teachers have the time to communicate with him and he has an environment where he can process. The overall push to get him into general ed settings was not a good fit for him and I believe it contributed to an increase in behaviors, particularly when he was placed in an "emotional-behavioral unit" that relied on ABA principles. I think educators need a much stronger understanding of neuroscience before working with autistic children, so that they can understand there are layers of functioning that contribute to observable behaviors.
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Name	Monica Allen
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Again, health care providers and settings must understand more about these conditions (learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities) to provide more accurate care, referrals, and communication. School settings must be more equitable in providing services for these conditions, making sure each student gets what they need. Public life needs to be set up to better support Autistic people, especially those with these additional disabilities. We need more support care workers (HCBS) so our loved ones can stay at home with proper support, or live independently with support, avoiding institutional and segregated settings. We need more availability and understanding about Augmentative and Alternative Communication (AAC) devices, training, and usage for individuals, providers, and families.
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Name	Moriah Adamick, parent of Autistic child
Demographic	Family member of an autistic individual
Response	PDA affects Everett's trajectory in society. The world is not build to accommodate his oversensitive neuroception. He has challenges in all realms, social, intellectual, emotional, etc.
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	communication disabilities -- ability to communicate socially and self-regulate within those social situations, social-emotionally effective communication, especially difficult for those with Extreme Demand Avoidance and Pathological Demand Avoidance, a subset of autism fixated on social relationships
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Name	Myles Davis
Demographic	Autistic individual
Response	Lack of respect from allistic people who view intellectually or developmentally disabled people as less than, or do not make an effort to find alternative communication styles with communication disabled.
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	My daughter and I both have ADHD, which can often mask or complicate our autism struggles. My ADHD makes it hard to focus on my special interests. It akes me feel like I need novelty and am frequently bored but trying new things often leads to meltdowns or burnout. It also makes it very difficult to do things like FILL OUT THIS FORM. On top of that, treatments for ADHD have made my sensory symptoms even worse, even if they address some ADHD symptoms.
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Name	N/A
Demographic	Autistic individual
Response	Growing up I struggled in school because I stopped applying myself once I became an adult I realized this was burnout, except when it comes to autism it doesn’t just go away after a relaxing evening it stays with you. I’ve even experienced this in multiple jobs where I just didn’t/ physically couldn’t do it anymore I don’t want to do anything unless it’s something that I want to do if that makes sense. As far as communication goes sometimes I feel different or weird compared to my peers this could also be because of anxiety but I often question if my peers think I’m weird, i wonder if the responses I give or the way I react to things are slightly aloof compared to other people.. it’s a very confusing and sometimes lonely situation
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Name	Nancy
Demographic	Family member of an autistic individual
Response	My son is also cognitively disabled. He functions at 3-4 year level in learning, speech etc
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	If you have met one person with autism you have met one person with autism. Every person with a disability is unique and needs a truly individualized service plan to help them transition from school to work and independent living. Our current education, workforce and independent living systems are often too bureaucratic for truly individualized attention and training wich is more time consuming.
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Name	Nancy Hauprich
Demographic	Family member of an autistic individual
Response
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Name	Nancy Williams
Demographic	Family member of an autistic individual
Response	Intellectual disability and lack of communication avenues.
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disabilities... They persist even in so-called high-functioning individuals. They are the one thing on this list that I think every single autistic person struggles with.
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Name	Natalie
Demographic	Autistic individual
Response	Communication disabilities are extremely hard because you can't actively describe the things you need from others. People misunderstand your words, tone of voice, or body language and that changes their perception of you without you even noticing.
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Name	Natalie , Woman
Demographic	Other
Response	Struggling with learning disabilities developmental disabilities intellectual disabilities and communication disabilities is a war in itself
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Name	Natalie Mason
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Schooling and employment. Schools are not equipped adequately to provide for autistic students. The high unemployment rate of autistic people is also a huge issue.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Co occurring intellectually disabilities and communication disorders are significant barriers to skill acquisition and maintenance of skills
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Name	Nathan Blenkush, The Judge Rotenberg Educational Center
Demographic	Service provider, health provider, or educator; Researcher
Response	The Judge Rotenberg Educational Center, Inc. (JRC) has treated thousands of patients with autism, co-occurring conditions such as developmental, intellectual and communication disabilities, and treatment refractory self-injury and aggression. JRC patients are admitted from inpatient psychiatric settings; jail settings; residential treatment programs; or directly from home where family members struggle to care for them because no treatment facility will help their loved one. Programs are reluctant to treat such patients because they do not have the ability to control ongoing self-injurious behaviors and maintain the patient’s safety; the patients require extraordinary level of treatment resources (e.g. 1:1, 2:1, 3:1 staffing; highly trained treatment staff); and/or patient’s behaviors are extremely dangerous to others resulting in frequent injuries. JRC has found that providing the least restrictive, most effective treatment for aggressive and self-injurious behaviors requires individualized assessment and treatment. Unfortunately, providing such treatment has become increasingly difficult because of misguided restrictions on treatment procedures force patients into restrictive hospital settings. Consider restrictions that limit the use of emergency restraint for patients living in community settings in certain states. Such restrictions have unwittingly caused patients that require occasional restraint to receive far more restrictive treatment in hospital settings.
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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	PDA stops my child with an above average IQ, from developing and from learning…
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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	Schooling becomes extra difficult. Schooling centered and focused on academics, while the child has no understanding of what you want them to do, so they become aggressive. School unable to provide behavioral therapy, it leaves the child unable to attend school without issues. The school staff is unable to intervene or handle the child. Therapies have long waiting lists. Now what?
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	There are currently extremely minimal resources, therapy, supports and insurance coverage for autistic adults to be diagnosed, receive any type of support unless you have very high support needs. I am late diagnosed, I paid thousands out of pocket. Psychiatrists and therapists also struggle to treat autistic patients, more often than not I am educating them myself. It is at a detriment of the autistic individual to always be prepared and well informed when interacting with doctors at risk of serious harm or costly mistakes. For example before I became unconscious I clearly explained I am autistic & needed electrolytes, but because my sugar was high from a high carb meal they wrote high insulin & I was left unconscious for hours until someone gave me an IV. This was an educational issue because the emts were not trained on communication & I have experienced this many times and this has almost caused me great harm. I have been left dehydrated in the ER numerous times due to lack of training & procedural issues.
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Name	Nicholya Crockett
Demographic	Family member of an autistic individual
Response	Because my son has PDA, a nervous system disorder, any time he perceives a loss of autonomy, or perceives a demand, he goes into fight, flight, or freeze. This is not behavioral, so traditional behavior correction systems and traditional education even fail him because his nervous system is constantly being activated. This leads to autistic burnout, school refusal, lack of eating, lack of sleeping, and more frequent meltdowns. This affects my son's daily life at school, home, and play.
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Name	Nick McCurdy, Patient/Advocate
Demographic	Autistic individual; Family member of an autistic individual; Researcher; Other
Response	Getting left behind in education and socialization, resulting in more difficulties integrating and communicating later in life
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	The impact these have on the individual's potential for independent living and employment.
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Name	Nicole Corrado
Demographic	Autistic individual
Response	I have some math LD so my parents manage my money. I was homeschooled because I was too overstimulated in school. I need to get an adult high school diploma to get into university.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	ABLEISM IN HEALTCARE SYSTEM DOCTORS DIAGNOSTIC OVERSHADOWING DOCTORS ARE POOLY TRAININED IN AUTISM DOCTORS REFUSAL TO ACCOMODATE NEEDS OF ASD MANY PEOPLE WITH AUTISM CANT ADMINISTER AT HOME COVID TEST INACESSIBLE REMOTE PLATFORM FOR MEDICAL VISITS] FUNCTIONAL MEDICINE NOT COVERED MY MEDICARE MEDICAID
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Name	Noemi Spinazzi, MD, FAAP, Down Syndrome Medical Interest Group (DSMIG), DS-ASD workgroup
Demographic	Researcher
Response	Autism is a common co-occurring condition in individuals with Down syndrome, with estimates ranging from 4-39% and meta-analysis data indicating that between 16 and 18% of individuals with DS meet criteria for autism spectrum disorder. Individuals with Down syndrome who are also autistic present significant challenges in their communication, adaptive functioning, behavior, and sensory processing. While communication impairments are very common in individuals with DS, they are much more profound in those who also have co-occurring autism, often with very limited verbal abilities or gestural communication. Delays in self-care, including independent dressing, bathing and toileting, are more pronounced in those with DS+ASD. Common behavioral concerns in this population include elopement, self-injurious behavior, aggressive behavior, and sensitivity to sensory triggers leading to restrictive feeding repertoires and difficulties with loud and unpredictable environments. When tested for cognitive abilities, individuals with DS+ASD demonstrate more severe intellectual disability; additionally, attention-deficit hyperactivity disorder (ADHD) co-occurs more frequently in those with DS+ASD than in those with DS alone. Children with DS+ASD struggle to remain up to date with recommended medical care (hearing and vision testing, bloodwork monitoring, dental treatment, immunizations) due to significant difficulties during medical visits; additionally, it is often very challenging for them to tolerate prescribed medical equipment (glasses, hearing aids, sleep apnea treatments, etc). Families of individuals with DS+ASD consistently report that autism is the more disabling condition, and report elevated levels of stress due to their loved ones' need for continuous supervision.
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Name	Olive
Demographic	Autistic individual
Response	I can only speak for myself but I found schooling and education in general was a hardship for me because of my autism, largely because of the lack of resources and stigma preventing me from getting a diagnosis even to this day.
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Name	Olivia
Demographic	Family member of an autistic individual
Response	PDA
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response	We need more extensive and inventive communications strategies. The biggest barrier is when professionals are unwilling to learn different modes of communication and resist the presumption of confidence. We need higher standards about communication and it should be the first stop on newly diagnosed kids’ plan of action.
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response	The biggest challenges can be lack of programming after 21 if that person is not employable. Many times by 21 families have exhausted all their resources both financially and socially.
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication difficulties seem to be the most significant challenges since communication affects a person's/ community's ability to function. If you struggle to communicate your needs, wants, goals, etc then you certainly will have a hard time getting those met. That's not even to mention struggling to meet your own basic health care and mental health needs, sensory sensitivities, etc.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Communication and emotional disabilities
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My daughter is diagnosed as having IDD and poor communication. Again, this makes it almost impossible to figure out when she does not feel well or what she wants/needs. My experience is that it also makes treatment very difficult as we are just guessing from her behaviors how the treatment is going. The staff has to be really well-trained and sensitive to be able to assist this population, and there are very few such staff members. My daughter had an undiagnosed UTI and was being prevented from going to the bathroom because the staff thought she was just avoiding doing her work and also were worried she was trying to clog the toilet. A dr visit detected the UTI.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Pragmatic language/social communication appears somewhat advanced at times but son likes to dominate every conversation. He will ask a conversation partner a question because he wants the same question asked back. At home gets very stuck on topics of interest, often repeating the same news or set of facts. Recognizes he should stop because it is causing frustration but is unable to stop.
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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	These are not simply co-occurrences , but are part and parcel of who an individual with autism is and how it expresses itself. We could ask the same question of any given population group at large and try to categorize, essentially slice and dice a person's challenges as if we can "treat them" in isolation. Our son with the severe expressive speech delay as a baby and young todller, was saying his food was scrumptious by age 3. Someone could have assumed this was an intellectual or learning disability. But for adequate & high quality speech therapy we might still be wondering. Gifts & challenges, no 2 kids alike, need therapies & education that doesn't "box in" assumptions about categories that define approaches & outcomes. It treats the whole child with an array of approaches to see what is effective.
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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	1. Lack of adequate and effective assessment 2. Lack of education and respite for families and caregivers 3. Lack of in school support professionals to identify and address these learning challenges 4. Lack of support for evaluating youth, and even fewer resources or none for assessing adults who eluded detection, leading to entrenched isolation and depression.
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response
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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	As a child I had great difficulty making friends, forming bonds and communicating with my peers because I am autistic. I was outcasted, isolated and bullied because I couldn’t pick up on the social cues that others were displaying.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	The most significant challenges that is caused by other conditions that co-occur with autism are low comprehensive levels, lack of focus, and struggling with communication.
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Name	Payton
Demographic	Autistic individual
Response	There are autistic people who are nonverbal and do not speak at all, there are also autistic people who are selectively mute and find that easier. Communication is not always clear, autistic people require direct speech very often and don't always understand social cues. At best, it results in some embarrassing story that they can laugh about in a year. At worst, it results in losing relationships and community entirely just for saying one thing and not realizing the weight of their own words. It can also be difficult for autistic people to focus on things that are outside of their interest range. For example, if one is inclined towards creative interests such as art and literature they would find it difficult to focus on STEM subjects such as Algebra and Physics.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response	Deficient social capital often leads to deficient financial capital, Lost income potential for inability to 'play the game', Excellence is less rewarded than change (e.g. 'promotion'), and change can be difficult for autists.
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Name	Person with Autism
Demographic	Autistic individual
Response	Learning Disability, Hand Writing, Developmental Disability
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	My son is a verbal thinker. He is gifted in his english language ability and as a result was miss-diagnosed as not autistic as a child. I suspect there is a link between verbal thinking autistic people, anxiety and pathological demand avoidance. Pathological demand avoidance should be recognized and researched as it is exceptionally difficult for families to understand and deal with, upending normal parenting strategies.
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Name	peter mazure, parent
Demographic	Family member of an autistic individual
Response	Lack of expressive language skills is a major problem.
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Name	Pon kavitha Anbarasi, St. Mary's College
Demographic	Family member of an autistic individual; Other
Response	Intellectual disability is the most common challenges an autistic individual can come up with.
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	It can cause a lot of frustration. There r a lot of non verbal people with Autism who are able follow commands but unable to speak which means they have the ability to understand what is being told to them, however have difficulty responding verbally and speak what's on their mind.
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Name	Purna Waldow
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	I would like to see more research into different learning styles of autistic/neurodivergent people and ways providers and educators can help them accomplish their goals in life. More research into masking, burnout and their connection with sensory and social overload is needed. Though not necessarily a “condition”, I think research focused on introverted people and how to meet their needs would be beneficial. I see people around me who haven't had a need to be diagnosed as autistic or having attention issues because they are extroverted and can function adequately in job positions and at school versus introverts who seem to burnout faster and more frequently if they don't have accommodations.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response	Homelessness, addiction, isolation/loneliness, lack of access to support that is understanding of autistic proclivities.
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Name	Rachel
Demographic	Family member of an autistic individual
Response	again, makes course of action difficult specifically, i'm thinking about the school setting. can impact how others view the individual and understand the "why" of the individual's behaviors
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response	I have a learning disability and it’s made my life very difficult, I can’t count money, I struggle with reading. It’s frustrating.
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Name	Rachel
Demographic	Autistic individual
Response	I have situational mutism. It is a real thing. For me, it’s not a choice not to speak. Sometimes I can and sometimes I can’t. Situations where I can’t speak are usually when I’m very anxious or the situation is new. Sometimes it’s also in random situations when my voice turns off. I open my mouth, but no words can come out. This can lead to a panic attack.
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Name	Rachel brown, University of Kansas school of medicine
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Rachel Goodman
Demographic	Autistic individual
Response	First, getting diagnosed with autism as a female. Second, getting diagnosed with co-conditions as a female.
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Name	Rachel Payne, PhD, Didlake, Inc.
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Didlake is a nonprofit rehabilitation services organization that has been creating and promoting opportunities that enrich the lives of people with disabilities for almost 60 years. Some significant challenges associated with other conditions that we see and support in employment and community settings include challenges with following multi-step directions, sensory challenges, and biases/misconceptions that people have about their abilities that impact the level of interaction and support they receive. Collaboration and coordination between various service systems and providers (e.g., education, human services, healthcare) are essential for providing comprehensive support to this population. In adult rehabilitation services, we work closely as a supportive team to help meet the support needs and goals of everyone we serve. Outside of the services and support that autistic people need, there is also a need for comprehensive training on autism and co-occurring conditions for healthcare providers and first responders. Increasing community awareness is a crucial step toward creating a more inclusive society. This approach not only aligns with Didlake’s commitment to advocacy and support for individuals with disabilities but also ensures that individuals with autism and co-occurring conditions receive the comprehensive, respectful, and effective care and support they deserve.
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Name	Rachel Spencer
Demographic	Family member of an autistic individual
Response	Because there are so many varying degrees of autism, no one “plan” to help overcome developmental deficits fits all. Someone needs to take the time to get to know the person with autism in order to be able to help developmentally and most kids get 30 minutes in front a doctor, not nearly enough time to get to know when or help
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response	Communication continues to be a barrier for many people on the autism spectrum. Because of this, engagement, employability, and general ease can be difficult for people on the autism spectrum.
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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 learning disabilities. This means they will not recieve any accommodations which creates the opportunity for an extremely poor learning experiences.
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Name	Rainier, Endeavor to Hope Counseling, LLC
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I often see dysgraphia, dyslexia, dyscalculia, alexithymia, and ADHD (the combo known as AuDHD).
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Society does not provide us the appropriate communication mode. People use their expectation, their definition of age-appropriateness. Anything we want to communicate that does not fit the social format, is not listened.
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Learning disability
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Name	Rashelle
Demographic	Autistic individual
Response	As a child, I was considered "gifted" but over the years burn out occurred. I couldn't read without getting distracted easily. I have a hard time with math and writing in "proper structure". I am trying to improve my communicative abilities as an adult but I also see the lack of "proper communication" in allistic people. Lying is considered normal. Understanding sarcasm is considered normal. You're supposed to "know" these things which is difficult. I have found out that I am good with remembering small numbers and patterns, but sometimes reading people is hard.
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Name	Reagan
Demographic	Autistic individual
Response	I really struggle to process instructions, often times miss understanding and taking it too literally. I struggle to be able to communicate effectively, due to late diagnosis and neglect in childhood. I can never formulate words, to describe anything.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response	As a woman that was diagnosed late, I was put on so many medications as a child. Instead of understanding why I did or said anything I did I was always punished via family or peers/public. I’ve had a lot of physical and mental abuse over tiniest things. Shaking my leg as I sit or bouncing it, twirling my hair, clicking my tongue, walking on my top toes. I never learned to express myself I only learned to mirror those around me. And being in a bad area bad town bad part of town, mirroring those around me was NOT a good thing. Instead of helping me learn to cope, I was medicated and I had to teach myself to cope in my younger years
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response	Childhood apraxia of speech impacts reliable oral speech Ability to participate in treatment protocols not normed on persons with co-occurring intellectual and learning disabilities Fewer employment opportunities  K-12 education and placement decisions  Limited opportunities for higher education Independent living  Independent participation in health care   Impact of ADHD on learning and function  Executive function difficulties impact problem solving and independence Literacy skills  Timely and accurate diagnosis  Limited funding options for interventions across the lifespan
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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	diagnostic overshadowing that it all ties to ASD. Teachers assuming all autistic people are x (low) or y (high) functioning per their academic (testing) abilities alone and not really honoring the real complexities in how each autistic person is as a wholly complex person with the same range of human emotions and skills as anyone else w/o autism. The dehumanizing of people with ASD is so sad to see as a parent. The lumping children into categories and not seeing nuance or possibilities if they get the "low" label. I hate those labels.
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	ADHD makes learning and focus difficult
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Name	Rebecca Farrell
Demographic	Family member of an autistic individual
Response	For our son, who has autism and ADHD, he must attend a very expensive private school that can help him learn the way he needs to learn. He also struggles with communication, was a "late talker" and often refuses to engage in conversation that is sensical. Most of what comes out of his mouth is related to his hyperfixations or is rubbish.
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Name	Rebecca Jukes, Mom of Autistic Child
Demographic	Family member of an autistic individual
Response	Lack of social skills that restrict peer interaction, the anxiety of things changing and moving too fast for their understanding, ADHD causing distruption in classroom/hallways/public areas, speech issues, gross/fine motor issues resulting in teacher complaints and bad grades, cognitive understanding and the ability to retain information resulting in bad grades. These are barriers to learning in the mainstream classroom but you have to be severely autistic to not be in mainstream education, get and IEP or qualify for an aide.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	My son's medical issues are extremely difficult to address because he can not communicate his symptoms or follow directions. He can not swallow a pill. We can not get a blood pressure reading on him. He requires around the clock care and is often unable to participate in activities he enjoys and school due to these symptoms.
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Name	Rex Frasier
Demographic	Autistic individual
Response	I have a hard time processing things that I read or hear. The best way I can describe it is that it's like having a computer for a brain that is full of viruses while using dial-up connection and you are trying to search for the words while an endless stream of pop-ups keeps blocking what you are trying to do as well as someone keeps calling and disconnecting you from your ability to search while also trying to get rid of the pop-ups.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Sensory Self care Emotional regulation communication difficulties and challenges menopause
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Name	Rick Grossman
Demographic	Autistic individual
Response	Our strong dexication to truth honesty and facts. Inability to handle conflicting information. Not able to navigate many web sites Inability to interact with bureaucracies—can’t complain or request help causing victimization
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	Societal expectation: numerous challenges for autistic people, lead to co-occur conditions. Challenges: difficulty asking for help, self-isolation, communication deficiency, task paralysis, emotional outbursts&misunderstood. Significant hurdle: assumption of issue by people or health workers, lack how relate to ASDpeople. Financial struggle, compound by unemployment rate reach 85% (barrier). Easy/access monetary support w/capitalist framework:crucial. Neurotypical society categorize perpetuate societal hierarchy. Health workers influenced by-may overlook unique abilities&heightened processing of ASDpeople. Despite societal assumption ASDpeople often operate on higher processing lvl, analyzing info quicker. Forced need to navigate society that doesn't cater their needs activates fight/flight, causing depletion of focus&burnout. Necessity: patience&time in analysis essential. Neg. attitude/hierarchy approach bring frustration depression&diminished trust, cause co-occur conditions. Sci. research indicates ASD people have higher gray-matter vol., allows enhanced awareness of surroundings/analysis. Healthcare must prioritize aid>money, consider unique communication style/analysis. Care provided to extend to undiagnosed&highmask. Imperative health workers acknowledge/respect authentic communication style of ASD people, fostering supportive env.. Paradigm shift in healthcare-crucial to address distinct needs&mitigate risks of co-occur conditions.
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Name	Robert C Bransfield, MD, DLFAPA, Hackensack Meridian School of Medicine and Rutgers--Robert Wood Medical School
Demographic	Service provider, health provider, or educator; Researcher
Response
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Name	Roberta Kane
Demographic	Family member of an autistic individual
Response
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Name	Roberta Lincoln, Parent Advocacy Group and lived experience
Demographic	Family member of an autistic individual
Response	Specific learning disabilities, developmental disabilities, intellectual disabilities, communication disorders, challenges with “how he learns” (very verbal and articulate and above grade level reading, but has no receptive verbal “understanding” and requires visual aids to fully comprehend. Has NO concept of the passage of time.
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Each of these conditions cause unique challenges. Most significant is probably the increased likelihood of self-injurious behavior, comorbid psychiatric disorders, etc. Comorbid psych disorders may exacerbate symptoms and/or lead to the development of more symptoms, including suicidality and general decreased quality of life. Conditions that inhibit motor skills may make alternate forms of communication difficult or inaccessible, which is another challenge. Co-occurring conditions also often get de-prioritized when autism is also present. This is a major issue, as these conditions are oftentimes more serious and/or treatable. Considering co-occurring conditions and helping autistic people recognize them for themselves is a major current challenge. In the same vein, barriers to care for co-occurring conditions are a significant challenge. Realistically, each individual is going to have a different scope of challenges. Personally, my greatest challenges are dismissal of physical symptoms or other mental health concerns, as well as access to care in general. Additionally, I have had a hard time identifying health concerns and knowing if they are worth professional consultation; this is a barrier to care that should be addressed.
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Name	Robin Blitz
Demographic	Service provider, health provider, or educator
Response
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Name	Robin MacDonald, Parent and Conservator
Demographic	Family member of an autistic individual
Response	Housing as adults.
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Name	Robin Rhoades
Demographic	Family member of an autistic individual
Response	Communication disabilities, developmental disabilities, intellectual disabilities, learning disability
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Name	Robin Weisman
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication can be impacted regardless of whether a person is verbal or not. Vommunication is behavior. Behavior is communication. If a person does not have a method to communicate, this can impact all parts of their life. Provuding a method to communication should be priority.
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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
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Name	Rose Baumann, Parent advocate
Demographic	Family member of an autistic individual
Response	Communication challenges are probably the single biggest barrier to favorable outcomes, particularly for those with profound autism. And as Mr. Anthony Tucci suggested in his oral comments at the Jan 24, 2024 IACC open meeting, a particular method of communication, chosen by the individual because it works, should not be legislated, dictated, or negated because peer-reviewed literature doesn't endorse it. Many tragic outcomes result from not having an ability to use language, however that language is generated,
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	RSD is extremely difficult to overcome and prevent my child from accessing activities they want to attend and enjoy. It feels impossible to overcome and is preventing her from fulfilling her dreams.
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Needs not being met in educational and work settings. Being seen to not be trying hard enough
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response
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Name	Rowan Gibson
Demographic	Autistic individual
Response
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Name	Rowan Leshy
Demographic	Autistic individual
Response	Same as question 1 but also my ability to attain an education any employer gives enough of a [profanity redacted] about to pay me an actual living wage.
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Name	Ruby Bard
Demographic	Autistic individual
Response	Being AuADHD I think the biggest thing I get hit with is that people don't understand when you say "I need clear communication to know what you want of me. " you fully mean it and do need it. My Dyslexia, Dysgraphia, Auditory Processing Issues all can be accommodated in physical ways but people refuse to do simple things like explain what they want of you. They assume you understand them and there implications and the complex public rulse in place but you cant unless you are told what they are. The whole world seems like a game with a rule book everyone else can read but you cant. And If you could you would happly follow it but like the english language, even when you know a rule it can be broken under specific circumstances you may not know. We are flying blind and nobody wants to accommodate us with guidelines. and when we break a rule we didn't know existed we find ourselves fired from the job, or in trouble with doctors or the law, or with troubled relationships.
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Name	Ruth Hevelone, PDA North America
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response
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Name	Ruth Horowitz, Author of Living With Autism Undiagnosed
Demographic	Autistic individual
Response	Communication difficulties because my brain processes information differently, and miscommunication because I don't understand nuanced speech, and others interpret my speech as nuanced when it isn't. Now that I am finally diagnosed I hope to be able to navigate things better.
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	The challenges I experience with being autistic are often related to external environments which cause sensory overload or if my GI system is messed up then I may have a large meltdown. Also growing up in a world that does not value autistic people can be challenging and lead to internalized ableism. Also at times it can be frustrating that I have slow processing because that impacts so many things in everyday life.
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Name	Ryan Bradley
Demographic	Autistic individual
Response	Learning Disabilities
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Name	Ryan Erdozain
Demographic	Autistic individual
Response	Compared to my peers I talk way less and I am unable to properly express my thoughts and feelings on certain things. They always come to me and when I am unable to give them a proper response, I just give them the answer I think they are looking for. I have done this in job interviews and in other situations which can make forming a stable relationship difficult. The tangled knot of disorders I present with can make many other things challenging for me such as dealing with math and other language systems especially times and dates like my work calendar. I struggle with change as well which makes it extremely hard when my normal schedule is changed, and I am unable to compute the change properly so my mind tricks me into thinking the schedule hasn't changed.
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	S.
Demographic	Autistic individual
Response	Most significant challenges is getting proper help.
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	executive functioning
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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	- finding work around for things like the first time seeing some over complex restaurant gadget can cause a scene if I express myself wrong or poorly. - plotting courses via public or private transportation is a huge night mare - locating medical help that does not interrupt my work days all the time - funding transportation to accessible locations
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Name	Samantha
Demographic	Autistic individual
Response	The hardest thing is finding others to relate to or be helped by. These co-occurring conditions get in the way of a true understanding of autism.
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response	Dyspraxia, directional dyslexia Overstimulation Bottom-up processing needs with learning Rejection sensitivity dysphoria
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Name	Samantha
Demographic	Family member of an autistic individual
Response	My son did not start to talk until he was almost 5 years old. He needed support with communication and using a AAC device. He also has apraxia, many speech therapist were not trained in supporting him with his device and apraxia. I struggled to find him a good therapist who could support him and make progress.
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Not understanding cues or having any kind of social skills in general made me feel very isolated as a child. Though I was quite intelligent, even then. Today, I still struggle a bit in social situations (I tend to avoid them due to high levels of social anxiety) but find my most significant challenges would be emotional disregulation. Followed second only to my severe mental health challenges.
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Name	Sandra
Demographic	Family member of an autistic individual
Response	the developmental and intellectual along with the communication disabilities makes it not only hard to them to tell us what is going on but us knowing what is going on to where we have to do a process of limitation.
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response	Being misunderstood in the workplace. There needs to be more information out there about managing an autistic employee
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Name	Sandy
Demographic	Autistic individual; Family member of an autistic individual
Response	Pathological Demand Avoidance
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Name	Sandy Wormald
Demographic	Autistic individual
Response	I found that I am very intelligent.. I got things much quicker than my classmates, and easily learned things well above my grade. Unfortunately, because of my ADHD side, it was never noticed. I was so bored once I got the lesson, that I would end up being disruptive. If my intelligence had been noticed, it would’ve been best for me to learn at my own pace in a quiet, but stimulating atmosphere with a bit of freedom. Possibly I could have been contributing more to our world than I am now if I’d had the opportunities instead of people just trying to make me be and act like everyone else.
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Name	Sara
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Sara
Demographic	Autistic individual
Response	I was a C student. I talked a lot. I was labeled as "disruptive", but didn't understand why, because I wasn't malicious in my intent. I never felt like I belonged in any academic setting, even though I am aware of my intellect.
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Name	Sara Brown, Prevent Blindness
Demographic	Representative of advocacy organization
Response
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Name	Sara CdeBaca
Demographic	Family member of an autistic individual
Response	Intellectual disabilities
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Name	Sara Trovinger
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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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	Some of the learning disabilities include dyscalculia and dyslexia. The pace of learning is challenging. There is little room for alternative learning styles. Sensory overwhelm does not help. We're so focused on learning social skills, we miss out on the learning happening for our nurotypical peers.
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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 address learning challenges. I would be as bold as to say that most severely autistic children who have learning disabilities will be given preschool material for the bulk of their education with minimal attempts to help them move to higher level material.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response	ADHD
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I don’t know where you could put PDA but it had an extremely challenging impact on my child’s development from infancy and through early childhood, esp the emotional dysregulation and fight response - this also impacted enormously on their two siblings.
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Communication
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning disabilities (e.g. dyslexia or dyscalculia), delayed processing of auditory information, struggles forming thought to speech, nonverbal episodes, social difficulties
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Inability to communicate basic needs. Being on waitlists for therapies.
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Name	Sarah Muecke
Demographic	Autistic individual
Response	I have to work twice as hard as neurotypicals.
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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	Self advocacy and representation
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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	adhd and autism are being found to be incredibly linked together and we need to view autism not as an isolated thing as it previously has been seen as.
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Communication challenges are the most frequent, given that autism entails direct speech with fewer social filters. Interpretations and conveyances tend to be very literal more often than not. Self-esteem has been shown to impact intelligence and processing/response to local environment. Autistic individuals do not feel safe as themselves in the workplace, and every autistic individual I have spoken to surrounding occupation has a story about being fired for being 'different'. This is the basis, early on, for us collectively and individually learning to 'mask'. NOTE: It is worth noting that autistic individuals collectively do not favor every aspect of our lives being labeled as 'disabled'.
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Name	Shannon
Demographic	Family member of an autistic individual
Response	My children cannot communicate their needs/wants, frustrations and most importantly ailments or side effects of medications. Most doctors want to put your children/adult children on antipsychotics that carry very heavy side effects that our children cannot communicate if they are experiencing. My son was having hallucinations and it took awhile before we figured it out. How frustrating and frightening for him. The oral surgeon punched my son in the face and left a black eye and we had no idea until we got home 20 minutes later and the bruising was evident.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	I have found communication to be my biggest challenge. Misunderstanding the subtleties that language can cause. I need direct instruction as to what is expected. I can’t always discern gray areas with ideas.
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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	communication disabilities and intellectual disabilities (e.g. processing deficits, working memory deficits)
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response	Developmental and deficit learning disabilities. Non-verbal. Inability to perform basic and routine daily life skills. Inability to communicate. Have not bern taught signing. Has no communication device despite requests. Only receives 40 minutes of speech each week.
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Making friends Community inclusion Informed adults Working Isolation Intellectual disabilities Non verbal ; low IQ Quality of life impacted
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	I did not mature at the same rate as my peers and that caused significant distress and was very isolating. Looking back, I can see how opportunities and relationships were denied to me because of disabilities that may be invisible but significantly affect my ability to connect with others.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response	The schools still just pass these kids through k-12 instead of educating them. My son's learning disability was not even discovered until he was over 18. The schools did not catch that issue.
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Name	Shawn Sullivan, Autistic adult
Demographic	Autistic individual
Response
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Name	Shawna Strickland, American Epilepsy Society
Demographic	Representative of advocacy organization
Response	Communication disabilities and intellectual disabilities are the most encountered challenges in this patient population.
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Autistic burnout
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response	ADHD and challenges with executive function skills. Highly intelligent individuals who are unable to demonstrate their skills & intellect because they struggle organizing & keeping track of things
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning disabilities the educational system would rather fail us then help us learn in way we understand. Communication, people don't understand what we say is said in a literal sense and dismiss anything serious we say in regards of asking for help. Work places discriminate and exploit us to the point we burn out and become unable to be functional and productive. Getting diagnosed in a timely manner for girls is impossible because they don't study autism in girls . There are not enough autistic people in the research feild, autistic people can quickly identify other autistic people while nerotypicals can not .
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	With my autism, I struggle to be outside of my home or my safe places such as my favorite low traffic nature spots. School had always been a struggle with the communication and participation expectations/requirements. I preferred solo assignments and non-public speaking as I do not wish to speak. I become extremely overwhelmed and cannot process anything. This causes me to panic and meltdown as I cannot understand the situation.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response	All conditions in autism have children/teens not able to verbalize /explain show their learning differences/difficulties
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	Accessing school while struggling with PDA
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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 fact that it is a spectrum is the challenge. People tell me that I "don't look autistic" or act autistic but the truth is we are all so incredibly unique and the face of ASD has drastically changed. I have unique skills and unique disabilities. I have a high IQ, eidetic memory and high retention of information but often suffer from face blindness and read lips because my ears are too sensitive that words are often drowned out by cars and sirens and barking dogs. I have been trained to be high masking as to not elude to my differences yet people inherently sense that I'm not like them. I enjoy concisely communicating yet it's often perceived as being short and rude to people. My ability to mask often leads me into leadership roles but my inability to regulate after long periods of masking lead to bouts of isolation and depression because I need to recharge and I can't be myself. Developmentally challenged until my late 30's, I had no idea how far behind I was in comparison to allistic peers until presented with the comparison. We don't know what we don't know until we realize that we don't know it. The learning and intellectual disabilities are wild. My granddaughter didn't speak until she was 4 years old and she had a tight grasp on language. She taught herself how to read so when she started speaking it was at a second or third grade level of grammar and comprehension.
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	Communication is key. I've seen a lot of speech apraxia. It's very difficult to teach a child when you can't communicate with that child.
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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	When communication is affected, frustration and aggression occur. Learning is affected negatively. Emotional and cognitive delays definitely affect social interactions and can even cause criminal behavior as the person becomes an adult. All of the above mentioned disabilities will certainly affect independent living and employment in a negative fashion,.
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response	All of the above. My child struggles with very delayed speech. But, the intellectual delay is growing, or the gap with her peers, as she gets older. Not being able to communicate, and the rest of her peers are growing developmentally or intellectually is very hard. Frustration, anxiety, and aggressive behaviors occur when she doesn't understand what everyone else is doing.
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Name	Shiloh
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Shonda
Demographic	Family member of an autistic individual
Response	ID and communication
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response	Autistic youth aren't just disproportionately affected by mental health diagnoses; they're also at higher risk for factors related to suicidal thoughts and behaviors and non-suicidal self-injury suicidality. Bullying is near the top of the list, with statistics showing that bullied youth are, in general, at a higher risk for suicidal thoughts and behaviors — and children with autism are far more likely to be bullied than their neurotypical peers. There's also the fact that when autistic teens face mental health challenges, they're often less able than their neurotypical peers to verbalize what they're going through, which makes the challenges significantly worse. These are challenges that my family and I know all too well. But we also understand that it is not our son or his diagnoses that are the problem. The problem is that the very systems designed to help him are still not equipped to do so.
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Name	Sleep Research Society
Demographic	Other
Response
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Name	Sloane Walters
Demographic	Autistic individual
Response	School has been incredibly difficult as I have always been on a constant state of masking which impedes my ability to retain the information I learn.
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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	As a parent, my son's learning disabilities were missed or ignored due to his having autism. The autism/adhd was the only focus. He had a full eval at public school age 5, age 8, age 11 and we were told he was average IQ, below average in some areas. At age 12 we took him to a private speicalty clinic and he was diagnosed with 3 specific learning disabilities and given specific supports for each and he is now reading at grade level, doing math at his grade level, and confident enough to participate in class.
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Name	Special needs mom
Demographic	Family member of an autistic individual
Response	Intellectual disability Developmental Disability and delays Academic challenges, reading/writing. Ensuring my child is being taught according to their level but also being challenged to perform to the best of their ability. Why are special needs children required to take end-of-year tests? Traditional classroom educators need more education regarding special needs children as well
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	My son's communication disabilities can limit his ability to interact with others, and obtain assistance when he needs it. For important interactions - job interviews, for example, or, when he was younger, his Eagle Scout Board of Review - we practice the conversation in advance. I feel that such practice gives him confidence in the moment, and helps him overcome possible mental processing delays (because he has already worked out answers to questions at his own speed, a phrase he has used often). But such practice is not always possible.
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Name	Stephanie
Demographic	Autistic individual
Response	The co-occurrence of autism and intellectual disability presents some challenges such as communication, daily living skills such as self care, social interactions and adaptive behavior.
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	communication
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	Echolalia can make sharing your knowledge and thoughts very difficult and can impede social connection. dyslexia, dyscalculia, and dysgraphia can lead to underperformance in academic settings not because the person isn’t knowledgeable or capable but because they process differently. It can severely and negatively affect an affinity for learning and one’s self esteem.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response	Development delays(behind in reading and math).
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Name	Steve
Demographic	Autistic individual
Response	I have none of the above, happily. Note: our difficulties in social communication with NTs are due to NTs not knowing or understanding that we communicate differently. Between autists, there are no such problems; between NTs there are none; only cross-neurotype communication is affected. We don't have "communication disabilities", generally. [Except those of us who are non-verbal, of course.]
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Name	Steven Lunseth
Demographic	Autistic individual
Response	Social Developmental Disabilities have been a big problem for me. Even at 35 I am still developing social abilities that neruotypical individuals learned in childhood and in there teens.
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication is difficult. I can mask really well but it is incredibly draining and usually have to nap after periods of forced socialization (work) or spend time alone for days. I have a very hard time with math, or tasks like reading instructions that cause informational overwhelm and analysis paralysis.
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Susan
Demographic	Autistic individual
Response	I do not understand why there are communication difficulties between nuerotypicals and myself but I know that there are. Also sensitivity to noise, fabrics etc have impacted my daily 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	Failure to recognize that people with autism can have complex needs which cross ability and disability categories. Autism is not a stand alone disability but often part of a range or continuum of disabilities (including learning disabilities, pervasive developmental delays, social interactions and communication). Services cannot be categorized only into speech language or psychiatry or physical therapy or digestive health. We have a desperate need to integrate services and to manage (case manage) the array of services needed by many individuals with autism, who have other co-occurring diagnoses.
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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	Communication
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	Autism + ADHD + Bipolar Disorder combine to make a child who is never at ease, is always overwhelmed and primed for a meltdown. Her bright mind can’t calm enough to properly learn or function in school. When manic, she’s in and out of hospitals for months at a time until her meds are straightened out. She currently resides in a group home due to hurting her attendant care providers - she’s been aggressive with her parents for years.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response	Being non-verbal and not being able to know what hurts when my son is upset is the hardest piece of his autism currently. This means I rely on my knowing him, and run through a checklist of possibilities. Has he had a bowel movement? Could he have fluid in his ears? This then leads to multiple doctor appointments, and phone calls to discover the root of the problem and the route we then take to address his ailments.
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication
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Name	T. Gittleman
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response	Communication and regulation
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Name	Tanina Cadwell, Unaffiliated
Demographic	Autistic individual
Response	My co-occurring mental symptoms not previously mentioned are as follows: extreme Rejection Sensitive Dysphoria (RSD), extreme Justice Sensitivity (JS), pathological demand avoidance (PDA), oppositional defiant disorder (ODD), cognitive rigidity, perseverative cognition, emotional dysregulation, oversharing, and masking. My most severe challenges (at work & home) are predominantly triggered by (or are a result of) my (1) extreme Rejection Sensitive Dysphoria, and (2) extreme Justice Sensitivity: - I overwork myself often to the point of extreme burnout, hospitalization, or near hospitalization in order to maintain the ruse of an "exceptional neurotypical individual" - I will quit / end things abruptly - there is no changing my mind once it has been made - I stay in traumatic & stressful situations for far too long - I avoid confrontational conversations in order to avoid being "found out" as neurodivergent - I will “dig my feet in” when I disagree with something, to my own detriment (especially problematic when coupled with my PDA and ODD) - My perspective/relationship with others depends almost exclusively on my internal gauge of justice / injustice - I struggle to regulate my emotions when a less logical decision / path is taken - I often challenge others use of language, making it very difficult for them to engage with me - I actively avoid verbal conversations, preferring text to the point of skipping medical appointments to avoid phone calls / zoom meetings
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Name	Tara
Demographic	Autistic individual
Response	I did not find out that I had Discalculia until my 30s but it is clear that my autism made it difficult to get help and I ended up failing classes and scoring low on SATs. Anytime money or numbers are involved I can have a meltdown because I have a hard time communicating that I’m struggling.
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	In my personal experience my interpersonal communication skills can be significantly debilitated by my autism. Communication is a key skill needed for all ADLs and basic functioning, when it is impaired all other aspects associated with this are affected as well. I may very well be very gifted and or knowledgeable regarding a certain subject but because my communication is affected and more difficult to convey and or interpret that expertise is significantly impaired due to lack of communication.
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Name	Tempest
Demographic	Autistic individual
Response
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Social perception that autism is equal to learning disabilities or intellectual disability.
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Name	TG
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Thomas
Demographic	Autistic individual
Response
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of flexibility to pre-existing structures, stigma, unrealistic expectations and lack of willingness to implement adaptations because it is just too hard for them supposedly.
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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	Communication disabilities- hard because society at large isn’t flexible
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Name	Tosha Brothers
Demographic	Autistic individual
Response	My learning disability, dyscalculia, has inhibited my ability to do math beyond a fourth-grade level and held me back from graduating high school. Though I did the tutoring the school provided, it was insufficient and led to feelings of worthlessness. If they had accepted my learning disability, along with my autism without pushback, I would have been able to home-school instead. Sometimes there should be more of a focus on a student's strengths, rather than their weaknesses. That way, autistic children with learning difficulties could go into society feeling confident instead of ostracized. Above all, IEPs must be upheld for these vulnerable students.
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Name	Tova
Demographic	Family member of an autistic individual
Response	struggles with handwriting and converting ideas into writing
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response	Communication disabilities - with a very limited vocabulary (1-2 word responses or "video speak"), our son is unable to tell us when he is not feeling well, hot or cold, tired, hungry, sad or happy. He seems to have a high tolerance for pain and we will not know anything is wrong until the situation becomes critical.
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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	One of the major issues is that caregivers and programs designed to help individuals with autism may be prepared to deal with the autism, but when you add in seizures and intellectual disabilities it becomes nearly impossible to find a carer or program that can assist. This causes families with all 3 of these issues to self-isolate at home because their loved ones don't "fit" anywhere.
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response	Learning issues Executive functioning issues
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Researchers and health professionals often presume incompetence because communication with autistic people can be challenging. someone with impaired brain function is still competent- it just might take longer to communicate.
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Name	Ty Shields
Demographic	Family member of an autistic individual
Response
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Name	Val
Demographic	Autistic individual; Family member of an autistic individual
Response	PDA. Impact on relationships, learning, education, communication, understandingof the impacts of this on the child and the adult .
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Name	Val Luther
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Ableism has been the biggest challenge for my son. Others view that what he is being asked to do is "not that much" and therefore withhold accommodations and use behavioral interventions.
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Name	Valerie Beckwith
Demographic	Autistic individual
Response	Communication is difficult and frustrating due to the nature of our speech patterns (and unwillingness to lie, it can cause literal pain in some people).
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	The lack of support in public schools. The stigma that surounds the label andvasking the schools to be patient or to try and include a child that has missed any amount of class is ridiculous. The schools are underfunded. The teachers are unwilling to reteach anything. I suggest that all public schools classroooms be filmed and that days recording be sent home to any child that missed that day. Teachers are public servants just like police men sho have to wear body cams. The same principle should apply. My childs inability to communicate their needs leads to even further division, separation, and animosity towards my child and it's not right. Staff need better tools better funding and better education.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Communication can be such a struggle. Even in higher function individuals. The ability to understand how to communicate effectively with others and in turn understand the unspoken within a conversation. This is something that also needs to be addressed and can help tremendously, especially if supported at an early age.
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response	My child experiences problems communicating with peers but it isn't clear to see. He presents as "typical" because of masking so he just looks to the outside world like he has bad behavior when it is really due to the limited social skills and anxiety.
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Name	Vee Crowe
Demographic	Autistic individual
Response	It's difficult to speak to people verbally. I can never find the right words as they're either the wrong ones or they're too simple to properly convey what I want to say. Words are said wrong way round, the words get caught in my throat, all the words I know disappear when I have to speak. My thoughts are rarely verbalized as they should be which often causes fights, irritation, and hostility because my brain I can't properly word correctly. Even typing is difficult. I often repeat my words or phrases, sometimes I echo the person without knowing and that also starts hostility. I'm unable to live on my own due to not being able remember to eat or clean or recognize the passing of time or remember any important facts about being independent apart from maybe some cooking and doing the laundry(which I then forget I ever did until I pass it). I can't remember things that will help me live once they leave my sight, including my phone.
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	How they are treated there needs to be more understanding and inclusion .
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response	Demand avoidance impacts our entire family: can’t go out, go on holiday, do any activities
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Inadequate educational services
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Name	Vienna
Demographic	Family member of an autistic individual
Response	Communication challenges
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	Our son has struggled dramatically with social interactions with peers. He relies heavily on adults for companionship which is not healthy but we haven't found the right support to help him with his socialization skills. Many groups and resources don't work well for his presentation and super high anxiety that leads to demand avoidance.
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Name	Viktoriia
Demographic	Autistic individual
Response	I think, my cognitive skills are above average. It was not a problem to obtain 2 university degrees. I am fluent in 3 languages(my native language is Ukrainian, 2 others are English and Polish), and understand 4 more. But I have issues with becoming part of the groups all the time - there are people around me, but I don't know what to do with them. Also I have issues with being overstimulated all the time - I stop perceiving speech and not able to talk if the meetings at work are too long or a lot of things are happening around me
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Name	Virginia Fox
Demographic	Autistic individual
Response	The fluctuations in skills and abilities make it hard to be able to reliably depend on things like communication. Sometimes I can speak and I can tie shoes and follow my face wash routine and sometimes I can struggle to do a number of those things. It’s very frustrating when it feels like your abilities get snatched away intermittently. I do not have learning disabilities, but I know they add an additional layer of struggle to regulate and understand and cope and increase social stigma and judgement, which is a huge challenge
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response	Lack of communication skills to say their wants and needs
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response	La disabilitá nel comunicare verbalmente è alla radice della disabilitá intellettiva, spesso conseguente a pregiudizio del contesto sulle capacitá cognitive di chi non può parlare in modo ampio e articolato [Translation: The disability in communicating verbally is at the root of intellectual disability, often resulting from the prejudice of the context on the cognitive abilities of those who cannot speak in a broad and articulated way]
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	One of the biggest problems Autistic people face right now comes from a politically motivated group that is conflating low IQ with autism, and trying to call it profound autism. This is disinformation and propaganda that misleads people about the nature of autism and continues to feed the stigma autistic people face, including those who have co-occurring intellectual abilities. Most of the less disabled Autistic people I evaluate in my practice have speech and communication problems that are obvious until I do the cognitive testing. This core aspect of autism explains much of the difficulty Autistic people have with communication, but it isn't recognized as a core Autistic characteristic any more.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response	1. Gaining Oral speech being deemed more important than communication access. 2. Segregated Education. 3. An education system that ignores both childhood development, health, and neurodiversity. 4. Lack of access to important facets of education including social issues and sex education.
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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	Most school systems are missing autism diagnoses (and specific learning disorders, etc.) because the behavioral repertoire of the kids does not match the stereotypical view of autism. In working at our local mental health clinic doing assessments and diagnosis clarification, almost all of the minors I assessed came to me with a history of diagnoses including oppositional defiant disorder, conduct disorder, ADHD, bipolar, borderline personality disorder, etc. Our school systems are not prepared to properly work with folks with these diagnoses, so what has been happening is these kids end up being expelled and/or sent to alternative schooling and get a label of being a bad kid. Autism looks different than people and school systems think! And this is especially true for Black and Brown children.
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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 learning disabilities include the paucity of supportive resources in the school system and the centering of responsibility of management within the family. Some families can afford to pay for adequate services without strain. But far too many cannot.
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response	Dissatisfied staff. Underpaid. Constant turnove
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	Being dyslexic and hyperlexic makes communicating difficult, especially because we can sound so eloquent over written word, but speech being orchestrated by different parts of the brain/anatomy means we may sound far less “conventionally,” intelligent out loud. And with my particular profile, it may mean a significant amount of re-reading and re-writing of formal responses. Apologies.
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Name	William Spell
Demographic	Autistic individual
Response	When I received my official diagnosis as an adult, it stated I have poor short-term memory, which probably had an impact on my education in primary school and college.
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response	Intellectual disabilities in individuals with autism is a complete myth. The most prescient and respectful alternative is to presume the individual's intellect and interact with and educate them at their chronological age. Full demonstration of intellectual capacity is possible with communication technology for those not capable of producing speech reliably.
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Wylder, Autistic
Demographic	Autistic individual
Response
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response	Social isolation because these topics have been taboo and ignored. And there are no social structures for the autistic community to really thrive. Everything is made for neurodivergents.
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response	Inability to stay on task and function on very minimal life skills.
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Name	Zachary Kopel
Demographic	Autistic individual
Response	Not understanding social cues or how to interact with others
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I'm incredibly bright and sharp. I spoke in full sentences when I was 9 months old. Early and advanced language skills is one of the first flags of Autism. Evidently in 1979 no one cared. I both excelled and struggled through my entire academic career because I learned in a specific way. Some teachers taught in that way. Some didn't. If I had access to the support I needed, I can't imagine how much that would have benefitted my life. Instead I now awkward spout off slightly related facts in conversation, then elaborate on what I've said like I'm a live wikipedia, because I cannot connect the excitement of information properly in a social setting.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our child is functionally non-verbal and has an IQ that cannot be measured. He lives by routine, familiarity, and habit. Because he is non-verbal, he communicates needs and emotions, including comfort, satisfaction, and love, but also pain, confusion, and anxiety through his behavior. This behavior can be inappropriate (e.g. loud), intrusive (e.g. disrespectful of normative personal boundaries) and disturbing to someone in his proximity who does not know him or other persons like him – which is our societal norm. He can also be aggressive, self-injurious or injurious to others around him. It is in part for these reasons that he has been in residential care. The impact of these conditions is very great – he must live the rest of his life in constant and careful supervision, for which current resources are inadequate, and current research can do more to address.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	People with ASD who have ID or DD often are eligible for Medicaid and SSI and are more likely to get their needs met. People with ASD who do not also have ID struggle alot more to get their needs met. Access to augmentative and alternative communication supports for people who do not communicate verbally are scarce and help to maintain systems set up for children and adolescents while they are in school are rarely available. The severe shortage of speech and language therapists limits access everywhere but most accutely for adults.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has autism with a PDA profile. He struggles with communication and learning disabilities. His IQ is very high. In CT, he will not qualify for benefits due to his high IQ. However, he also has slow processing speed, which has become more of an issue as he's gotten older. He has high expectations of himself, and so do his teachers. He struggles with self confidence when another peer answers before him. It's challenging to find adults who are patient enough to work with him and who understand that while he did something yesterday, due to his PDA his nervous system may not allow him to complete the task today. He is very honest. But he will sometimes perceive a situation in the wrong way. When this happens and someone accuses him of lying, he does not respond well. This is very triggering to him. He needs to work with adults who trust and respect him. And who give him the time to process a situation. He is always apologetic after a violent outburst, but never in the moment. He needs to wait for his nervous system to settle back down. Once he is calm, sometimes it can take a day or 2, he will be remorsful.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Navigating the neurotypical world.The lack of autistic specific and/or friendly spaces/towns so there is respite available.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Autism with co- occuring ADHD is more challenging. Add learning disabilities such as dyslexia, dyscalculia, dysgraphia compounds issues. Learning to read is a civil rights issue. I am happy to see all the work being done on structured literacy. I am so grateful to the work of journalists such as Emily Hanford and her podcast, Sold a Story, and the tireless efforts of parent-led groups that have ended up passing dyslexia laws requiring early identification of reading difficulties and revamping the choice of curriculum ( goodbye Gay Su Pinnell/OSU and your bogus and non evidence- based Reading Recovery ). The Federal government should have taken a much, more active role. It became a political issue and should not have. It is neuroscience and there are decades and reams of research paid for by the Federal government on how children learn to read. And children with autism have much higher rates of dyslexia, it was important.
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Name	Anonymous
Demographic	Autistic individual
Response	I experience verbal difficulties when overwhelmed or overstimulated, and my processing speed is delayed, making it challenging for me to keep up with conversations. This can sometimes frustrate others who may not understand my need for clarification. Despite these difficulties, I excelled in the gifted program and thrive when provided with a supportive environment. Unfortunately, many social and educational settings are not accommodating to individuals like us. It is important to recognize that people should not underestimate our capabilities simply because we are autistic. Additionally, autistic individuals with intellectual impairments often excel in areas that society tends to overlook, such as memorization and fact recall within our special interests.
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Name	Anonymous
Demographic	Autistic individual
Response	I feel like I am very direct and clear with my communication yet I feel like I am always misunderstood or misinterpreted. Dyslexia, OCD, routines are necessary for stability. Socially awkward, not willing to conform so treated like outcast, direct, blunt, can hurt other people's feelings with my delivery, major communication breakdowns
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Name	Anonymous
Demographic	None Indicated
Response	• Staff training and consistency • Adapting to the person’s needs in various settings at Adult Day Services/School/Work and other programming, especially when working with individuals with other support levels/needs • The most significant challenges potentially affect the person's overall quality of life: social growth and interpersonal effectiveness, coping with change, choices related to housing and employment as well as one’s sense of self-efficacy.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has nonverbal autism and intellectual disability. He is able to communicate some basic needs through a communication device (ProLoquo2go), PECS, and some ASL signs. He can make a few approximations that only those closest to him will understand. His school program continually adds new words and phrases to his device as he's ready, but communication continues to be a huge challenge in his life. This is especially true regarding abstract things like emotions and expressing pain or illness. His lack of ability to properly communicate emotions or pain often lead to meltdowns, self-injury, and aggression. We also worry for his safety in the future.
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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	As someone who is trying to get assessed, I always struggled in school. There was a point where I was failing all of my classes and nobody batted an eye. I was even placed in ESL classes without being helped. I speak fluent English. Nobody cared enough to question my mental health, or to see if I could possibly have any learning or developmental or intellectual disabilities. My doctor was well aware of my situation with school, the school system failed me as well. It was so obvious that something wasn’t right.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Communication issues
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication disorders
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	It can be difficult to tease out learning or developmental issues that co-occur but I believe there is a high prevalence. My son has experienced communication delays, learning delays and overall developmental delays.
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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	as an autistic person who is semi-verbal, it is difficult for people to understand that just because i can talk sometimes, does not mean i can all the time. and i need help and accommodations to be able to properly communicate (ex. them learning sign language or at least not being judgemental when i use text to communicate)
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Borderline intellectual disability and many communication processing disabilities make it very difficult to treat challenging behaviors and work on job skills.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Developmental disabilities, apraxia (motor and oral), communication, learning, and intellectual
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Hyperlexia and speech processing disorders and accomodations are poorly addressed in the field and this leads to a much lower quality of life and self direction for people with Autism. It is so important that behavioral communication be addressed as communication first and that all efforts to empower individuals to express and be understood so that their medical needs can be met and they can be safe.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Researcher
Response	intellectual disabilities and communication disabilities
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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	Developmental disabilities, intellectual disabilities, communication disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	School is an especially challenging environment for autistic people with a Pathological Demand Avoidance (PDA) presentation. My 19-year old son has PDA. The social, prescriptive, and structured demands of school were essentially impossible for him. He is autodidactic and a very good communicator, so he was able to learn and progress through grades while frequently missing school or leaving the classroom throughout the day (even with an IEP, aide, social pragmatic, therapeutic, and social work supports). Virtual learning during covid lockdown was somewhat better for him because he could stay home, have more breaks, and be more in control of his time and tasks. He ultimately finished high school as a homeschooler using an “unschooling” approach in which he developed his own “curriculum” and pursued his intellectual interests. He was then accepted by a college. My son also has co-occurring encopresis and nocturnal enuresis. Coupled with PDA, it is extremely difficult for him to be without parental support for laundry. He is not able to manage washing the large amount of very soiled laundry he produces. He requires extensive protective bedding and extra clothes to get through each day. This all makes it very difficult for him to go away on a trip without multiple duffle bags stuffed with supplies. So far the PDA-based anxiety has kept him from being able to get professional help (e.g., OT) or being willing to work with a home health aide; therefore he has not started college.
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Name	Anonymous
Demographic	Autistic individual
Response	I’m frankly deeply afraid of most people and always have been. This has always proved to be the correct way of thinking due to most people’s behavior. I have instinctively avoided eye contact and am afraid of how to talk to people and am nervous around strangers. I get anxious when criticized and indignant when ordered around because I easily get tired of being manipulated by people who are not gentle or tolerant and who have earned no respect for no other reason than because they say so. This kind of social dynamic leads to countless problems in culture and society and a “strong survivor” is one who commands respect from people easily and copes with stress by taking the difficult path of least resistance and works well with a group and sees the goodness in others as that is how they stay strong. We need to work together
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Masking in public, especially at school = late diagnosis/IEP/no-knowledge/diagnosis regarding PDA Educational support that is capable, consistent, communicative (w/parents) concise, reliable, and trustworthy Lack of physical/team sport and social per-to-per connection opportunities if not in public school system
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	a) challenging behaviour b) anxiety c) depression d) query psychosis Being believed
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Accessing school accommodations. Especially when the accommodations needed for a PDA-type autistic is different from those that might help other autistic people. Also, even more especially, when the accommodations necessary require a restructuring of the school day and accommodations more fundamental than seating changes or sensory breaks. A PDA autistic student needs education that centers their special interests and permits the student autonomy throughout their school day.
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Name	Anonymous
Demographic	Autistic individual
Response	I was diagnosed with selective mutism as a child when I lost my ability to speak entirely, two years later I was diagnosed with Autism. We absolutely need more research in this area with this specific skill regression. When we start out our lives as being verbal and lose our speech at a later age everyone around us thinks we are doing it on purpose. We are punished by our families and teachers because they think we are being “disrespectful” or “rude.” When in reality, we suddenly and without reason can no longer make words go from our brains to our mouths.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Job related issues, challenges with living independently
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Learning and intellectual
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	My main co-occurring condition is ADHD. It seems it commonly co-occurs with autism. Autism probably should have been screened for when I was diagnosed with ADHD in 2021 especially since I was presenting with high anxiety
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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	Many opportunities are disseminated in our society through charismatic in-person interaction, resulting in unequal opportunities.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Workplaces and society more generally expect non-neurodivergent styles of communication, which can disadvantage neurodivergent individuals and unduly dismiss their ideas
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	implementing learning programs that will help students learn coping skills for communicating effectively. learning disabilities, developmental and intellectual programs that promote growth and success.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Learning disabilities / school can’t (too hard to fit in to neuronormative environments), social struggles and constantly being “second class citizened” instead of celebrated for more unusual talents etc. Mental health and self esteem go down hard… lots of trauma.
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Name	Anonymous
Demographic	Autistic individual
Response	I have learning, developmental, some intellectual, and communication disabilities.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication disabilities may prevent quickly identifying where the medical issues are and require additional testing. One patient with aggression went under colonoscopy and endoscopy to rule out medical problems and eventually the cause was found to be a cracked tooth. Patients are often terrified due to lack of understanding and need to be sedated.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	With learning disabilities, we need research on what is the best way for kids to learn.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Learning disabilities and social difficulties
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Speech and language. Having a global development delay, specifically within the social/emotional area makes it difficult for my child to have friends, understand their peers or their peers to understand them. This has caused immense problems in the settling in of school and currently no access to full time education due to unmet needs. This has also put my child well behind their peers in a learning sense
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication issues, apraxia, Gestalt Language Processing
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Isolation, shame, depression. I have a 7 year daughter with autism and a PDA profile. She currently cannot access school because she has developed such immense anxiety and fear from her previous school experience. Instead of respecting her needs, the staff tried to force her to adapt to things in her environment that were too much for her given her sensory differences. As a result, she experienced intense stress during the school day that eventually caused a mental health crisis. She is now home, and life is very hard for her. She doesn’t understand why she can’t go to school like her friends. She is a smart, motivated, kind child. She loved school early on. Now, it’s become a place she fears immensely and a place that makes her feel ashamed of who she is … all because the education system keeps thinking they can and should push neurodivergent children to adapt to neurotypical norms … norms that frequently work against their own neurological needs.
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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	That they cause differences in how each other present, and many are assumed only to effect certain autistics, where they may still affect all, just in different ways.
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Name	Anonymous
Demographic	Autistic individual
Response	Overstimulation and burnout. I’m sensitive to noise, lights and too many things going on at once, yet most jobs can’t or won’t accommodate for that. Not to mention the fear of discrimination, as people treat you differently once they know you’re autistic. Even if workplace discrimination’s illegal, good luck trying to prove it in court most of the time. Because of my job around loud machines where I have to mask all day, I’m in a constant cycle of burnout where I end up having to call off work. I lose pay by doing this, but I’m so scared of lashing out if I reach my breaking point. There’s no relief. It’s like being sick every few weeks, but you have to just pray you’ll get time to actually recover. Many of us don’t, so we become a shell of ourselves for years. It feels like I have to choose between working full-time, and being a functional human. But in this economy, the choice is pretty much made for me. I’m trying so hard to find a better job where I could still pay rent, and just can’t right now. The job market isn’t anything like current reports, and it’s not just me noticing this. Just hoping I can hold on…
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Name	Anonymous
Demographic	Autistic individual
Response	communication
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	The most significant challenge is intellectual disabilities (ID), which are often ignored in the autistic population. As a result, we don’t know the true prevalence rate. • The most recent pediatric hospitalization data (KID) show that only 10% of admissions with an autism diagnosis had a co-occurring ID diagnosis listed, so it is unlikely that hospitals are capturing ID. This is problematic as it is important for medical providers to understand patient care implications for co-occurring ID in autistic patients. • Russell et al., (2019) and others have found that individuals with ID are left out of autism research. • As the diagnosis of autism has increased across the nation, diagnosis of ID has decreased. It is more likely that individuals with ID are underdiagnosed or misdiagnosed than that the rate of ID is decreasing. Thrum et al., (2019) state that autism may have become the “preferred” diagnosis, accounting for the decreasing ID diagnosis rate. Ignoring ID or misdiagnosing severe/profound ID as autism to render patients eligible for services is a significant challenge that must be addressed. • Children diagnosed with autism and global developmental delay are often not assessed for ID at school age resulting in a growing number of youth/young adults seeking cognitive assessments (Carey et al., 2023). The sooner an individual can receive services and assimilate their diagnosis to understand themselves, the better equipped they are to live the life they choose.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Again, there is a major need for improvement in differential diagnosis in the medical and mental health fields. Many neurodivergent traits could be unclumped from disabilities altogether.
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Name	Anonymous
Demographic	Autistic individual
Response	fear of people thinking the autistic is rude
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Name	Anonymous
Demographic	Autistic individual
Response	My skills are mismatched for my IQ and it was a huge cause for distress in my youth. I learned to read and write at an extremely young age, but I still can barely do basic math at nearly 32 years old. Having a communication disorder makes this extremely difficult to explain to others, which makes help less accessible. My schools were baffled and assumed I was just screwing around in math, which made my mental health worse. I couldn’t properly communicate why language arts came so easily to me, while math felt like everyone was speaking Greek yet expected me to understand. It's also a struggle to get quality medical care, as doctors seem to be dedicated to misunderstanding me. One of the biggest challenges as an adult is simply living alone. Without outside supports or help from a live-in partner, ADLs can be difficult to achieve fully. If I cook dinner, I'm unable to shower. If I do laundry or clean something, that's the only chore I can do that day. It is expensive to rely on premade food/delivery services and I have to purchase extra hygiene items to make up for my personal deficiencies. This is all on top of being unable to work full time but denied services because I do not appear "disabled enough". To be autistic is to be poor as life is 10x more expensive.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autism with PDA has been challenging because most people (untrained providers, school personnel, community members) don’t see the challenges these kids suffer from. Many of these children are highly intelligent and know how to use autism masking to appear neurotypical. The intense anxiety felt often displays inward with subtle signs of struggle until it maximizes to the point the child cannot control it anymore. At this point the child often explodes in a highly destructive way. This leaves the child being misunderstood, misdiagnosed, and provided the wrong treatment all of which increases the anxiety, avoidance, and need for autonomy.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Learning disabilities And communication disabilities
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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	My daughter and I both have the PDA (Pathological Demand Avoidance) profile of autism. This profile has been known about decades and yet has received very little research. It is extremely debilitating and painful, and involves constant nervous system dysregulation. It interferes with all aspects of life, including eating, sleeping, using the bathroom, working, learning, and socializing. The symptom of "superficial social function" involved in PDA often impedes individuals with this profile from getting an autism diagnosis, leading to a complete lack of support that is devastating to families and individuals. For my daughter, PDA has led to her exclusion from school, as accomodations are unavailable given how little is known about PDA. For myself, this condition impedes my ability to relate socially to others and care for my body. The lack of professional knowledge about this profile has also led to me being misdiagnosed with multiple other mental health conditions and being subjected to treatments that made me worse.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to education
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Pathological Demand Avoidance ADHD
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) Stigma and misunderstanding in a world and culture designed around neurotypicals - even though there is the desire to be heard, seen, and fully accepted for who they are (isn't that one of the most basic human desires?), neurodiverse individuals are very often treated in a way that very often causes them to feel or be treated like "other," rather than a natural variation of humans, and that they have to either isolate themselves or act in ways that feel completely unnatural to them and do not honor their individuality. 2) Pragmatic communication challenges - even though there is a desire to connect with others (but may not be expressed as expected by neurotypicals), autistic individuals have so much difficulty understanding and being understood by others.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	demand avoidance, such as found in the pathological demand avoidant profile of autism.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Dis-regulation, trouble with short term memory processing speed, delayed executive functions, trouble with math anxiety, trouble with handwriting, trouble keeping organzied
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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
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Receiving proper services and setting a future for assistance
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Isolation is the first difficulty that comes to mind. Our teen's challenges in maintaining personal relationships and understanding others' perspectives has resulted in profound depression, low self esteem, school avoidance, and deep isolation. Another challenge is the way that allistic/neurotypical people treat those with this list of disabilities. Being ostracized, bullied, ignored, infantilized, and treated as less-than is inherently problematic.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Significance is the abitliry of the primary caregiver to maintain an income due to disruptions requiring immediate attention. Services that are not really Available in a timely fashion- lack of trained psychiatrists - lack of in person care and dangerously- mid Managed medications by professionals - my child was in ICU thanks to an incompetent med manager
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Misunderstandings, both personal and professional.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Intellectual disabilities.
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Name	Anonymous
Demographic	Autistic individual
Response	Seeming like I'm stupid or don't know how to communicate when really I'm shy and struggle to articulate my feelings
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA Processing speed differences
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Selective Mutism. Our local SALT team have no experts//specialists in SM. Recommendations have been inappropriate for the age and difficulties of my children. It has taken 2 tribunals to get them specialist support. My eldest is nearly 17 and has only recently received support. This vital support should have been provided years ago but wasn't, despite me referring twice to the SALT team. NHS statistics say that Selective Mutism affects 1 in 140 people yet there is little understanding of the condition in schools and other settings.
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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, ADHD.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Dyslexia, dysgraphia, dyscalculia, fine motor & speech issues are all things we deal with. New curriculum needs to be created for ND autistic LD kids. New curriculum ideas especially for PDA kids
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Name	Anonymous
Demographic	Autistic individual
Response	Cognitively somewhat disabled since permanent autistic burnout, otherwise no disability.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Keeping up with school & society expectations, maintaining interpersonal relationships, keeping up with daily life administration, maintaining a healthy family balance
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Son: Gastalt language processor, communication differences, taking things literally. Daughter: inappropriate behaviour/communication, auditory processing disorder.
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Name	Anonymous
Demographic	Autistic individual
Response
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Pathological demand avoidance
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Not being accepted by society, isolation and segregation, lack of accessibility, lack of reasonable adaptations, prejudices, poverty.
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Name	Anonymous
Demographic	Autistic individual
Response	Others ignorsnce
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Lack of presumption of competence. Infantilizing autistics with these types of co-occurring conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	communication disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	PDA as per previous question
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Name	Anonymous
Demographic	Autistic individual
Response	I struggle with Executive Dysfunction, especially from short-term memory challenges. I believe I may have a learning disability but managed to graduate with a master's degree.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Misinterpretation of human behavior and what other say leads to the wrong conclusion many times. She gets flustered and confused. May retreat and have episodes where she cuts herself off from others, doesn't answer phone or wants to be in a dark room.
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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	none of the above. instead: physical health, mental health, executive functioning etc.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	-Dyslexia
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I think some of the most significant challenges are actually with the world assuming that ALL these conditions stack together. For example, a communication disability leading people to assume a learning disability. Though, trouble with communication can easily lead to difficulty learning if the proper steps are not taken to ensure they are able to participate.
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Name	Anonymous
Demographic	Autistic individual
Response	From my own experience: communication is one of the biggest disabilities; learning/slow processing; auditory processing issues.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has a stutter. Communication is already complex enough for neurodivergent children, so adding a stutter is challenging. Communication via writing is also a challenge - the process of finding the words, putting them in a sentence, and spelling is challenging.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Communication challenges
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	learning disabilities
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Name	Anonymous
Demographic	Autistic individual
Response	There are no online free K-12 schools for those with autism which makes it much harder and challenging.
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Name	Anonymous
Demographic	Autistic individual
Response	All of the above
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	My ADHD and autism make getting things done in my day-to-day life really difficult. For example, staying on top of chores is really hard because of my struggles with executive function (planning out what tasks need to be done, managing my time well enough to get all of them done, etc). I strugglr to complete errands because of pushing them off due to being exhausted from sensory overload and masking my autism at work and then forget to do them later due to my ADHD. It also causes me to struggle to manage my finances. I'm impulsive due to my ADHD and struggle to understand how much money I'm really spending along with my special interests causing me to want to spend more and more money to be able to engage in those special interests. I frequently have had to be bailed out by those around me when I couldn't afford to pay my bills at the end of the month due to losing track of how much money I spent.
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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	The communication aspect is the worst. If you can’t communicate you get frustrated. This causes self injurious behaviors or aggression towards others at times.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My child has dyslexia as well as autism (undiagnosed). This has led to frustration and not helped in the onset of depression. After the pandemic, my child would not attend school and has now not been able to attend college. If diagnosis had been offered and good support given in school, they may still be learning now at 17.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication differences are No. 1, and the more the person experiences differences between their style/understanding and that of peers/family/society, the more it affects the person; learning disabilities; developmentally at least 2 to 3 years behind peers, often more, and it's difficult when they realize their cohort has moved on and they haven't
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Speaking only from my personal experience. I struggle significantly with communication differences compared to neurotypicals. My facial expressions and body language are consistently misinterpreted by non-autistic people, often undermining the genuine and positive intent behind my messages. For example, maintaining eye contact is difficult, and a neurotypical may see my gaze shift and interpret it as eye rolling to indicate sarcasm or as a sign of guilt or untruth. Note that this experience doesn't happen with other autistics. The issue isn't in what I'm doing with my body, but in the ableist neuronormative assumptions that neurotypical people make about the behavior of others. I also experience situational mutism, which is often misinterpreted by non-autistics as belligerence (voluntarily refusing to speak, giving someone the silent treatment, etc), aggression, or insubordination when in reality I'm in a situation that has robbed me of my ability to communicate by not being accessible to me. Judgements that again I rarely observe when experiencing situational mutism among other autistics.
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Name	Anonymous
Demographic	Autistic individual
Response	Communication is problematic mainly because neurotypicals refuse to take things at face value and always assume there's an agenda. Moreover, it doesn't matter how often you correct their assumptions, they just keep on going assuming that your brain works like theirs. However, the biggest problem is communication or so much as being around people is stressful. I'm too empathetic and most people are insecure and anxious. Perhaps if the medical industry figured out a way to deal with body-based anxiety, autistic people would be less reluctant to be around people.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	communication disabilities
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Name	Anonymous
Demographic	Autistic individual
Response	I don't personally have much experience with these but communication difficulties have made maintaining a social standing difficult in every environment I've been in. Many autistic people struggle to get degrees or finish highschool because their learning disability may not be accommodated
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	communication disabilities.
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Name	Anonymous
Demographic	Autistic individual
Response	So I have adhd in addition to my autism. That makes to it hard to focus, plan, and stay organized. Keeping a job is extremely draining and hard. Getting a diagnosis is almost impossible especially on your own as an adult. Nobody believes you either, you just get told your anxious. Most companies have a terrible attendance policy which is bad because if you have no concept of time and are always late you could possibly get fired. I also learn slower which makes it harder to keep up with my peers in my job field. College is taking much longer for me. Its also really hard to keep my tags up to date and I keep getting in trouble year after year for that. Its not even that I don't want to do it. I do. And don't even get me started on communication. I often struggle to be understood. It's hard for me to speak up for myself. I miss social cues quite often which gets me labeled as rude. If I'm communicating with my superiors I have to rehearse several times so hopefully I'll be understood and the changes I need will be made.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	The main challenge is being taken advantage of by people that prey on us for money, real-estate, and other reasons. There are people in the spectrum that are placed in both private and state run "schools" by terrified and exhausted parents that are desperate for help. These people are supposed to be taught how to advance themselves, but in reality they hardly learn anything and are given "goals" that are made as a check list to get medicaid funding. The end result is lots of children and adults that are just left to stagnate and are at the mercy of these institutions that prey on them.
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Name	Anonymous
Demographic	Autistic individual
Response	Autism is a developmental disability. Lack of services, especially for adults who are no longer in college.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Difference in communication, e.g. one person uses language literally and the other relies more on nonverbals or implied/inferred meanings, cause difficulty with following instructions at work, getting along with coworkers or being accepted by peers. Difference in verbal or visual processing speeds can cause similar disconnect in communication.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication, Developmental, intellectual , leaning * in order
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Dyscalculia seems under-studied, especially in gifted/high general intelligence autistics. It can impact self-efficacy in STEM careers even for high verbal ability students with strong interests in science/engineering. It can also impact social anxiety in situations when one is asked to tell time, make change, play board games etc. that compounds the existing social anxiety of autism. More research on what educational supports/accommodations would help those with dyscalculia reach their potential would be fantastic (given that already some are highly successful in advanced math even if they still struggle with mental math and arithmetic).
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Inability to describe physical discomforts underlying impulsive aggression.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has dysgraphia and written output disorder. He is gifted verbally but has very low processing scores.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I do not have this, but my son, who I am a caregiver for, has ADHD and Autism, and the two are like a powerful supervillain combo. Each aggravates the other.
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Name	Anonymous
Demographic	Autistic individual
Response	While I haven't encountered any learning disabilities, my ability to process information has improved with age by applying theories and research practically. However, during exams, issues with hand tightness and shaking sometimes compel me to provide concise answers, affecting my rank. Despite often knowing more than the top students, my scores remain above average rather than at the class's pinnacle.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I'm 59. I was tested in school and my family was told that I am a near genius and that I wasn't trying hard enough. In reality, I was struggling with multiple sensory overwhelm, executive function differences, things that I didn't understand at the time. My parents certainly didn't understand either. I spent decades trying and failing and feeling ashamed of myself. Now I know that I am autistic, but I have not been able to find any help. I desperately want help to be financially stable. In Europe, there are studies of autistic people being a good fit for having small self owned businesses so that we can accommodate our different sensory needs. In the US (a country that uplifts entrepreneurism) I can't find any help for this. The fact that I was tested for intelligence and then left to fend for myself says all you really need to know about how we are failing autistic people. The imagined spectrum, which designates us as either high or low functioning is not an accurate description of our struggles. Some of us are brilliant and non-verbal. Some of us are hyper-verbal and struggling. We each have individual strengths and weaknesses. That should be the basis of our support strategies.
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Name	Anonymous
Demographic	Autistic individual
Response	Dyscalculia, communication disability, learning disability,
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In this area, I think the problem is more so allistic people. Schools and the workplace need to quickly catch up in understanding and supporting the disabling aspects of the autistic people. Also colleges need to urgently update their curricula, and start studying the neurodivergent experience
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Not identifying the problem until it's deeply ingrained
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	ADHD affects the ability to focus on academic material being presented in school. Learning disabilities impact this as well.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	These are not seen as co-occurring in society, they are seen as integral to being Autistic, so they dismiss anyone that doesn't have them as faking. Many Autistic people experience these and should be supported in a way that works for them. Many Autistic people I know have experienced these things, but there just isn't appropriate support, especially if you are labeled with one of these and they won't consider you as being Autistic so you can get appropriate supports. So much is focused around child diagnosis, when so many Adults have been and continue to be missed. Even the CDC doesn't keep track of adults, they focus on kids.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Tourette Syndrome, Dyslexia, Dyspraxia, Dysgraphia, Dyscalculia, ADHD,
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Name	Anonymous
Demographic	Other
Response	Communication, educational, societal and work expectations. Current standards are neurotypical based which is why I'm classified as disabled vs. appreciation for full spectrum engagement/experiences. Without these expectations, 'how I am' or how I function would be accepted. Example: peoples' communication preference could allow for individual capability/comfort. To require conformity creates unnecessary stress/decreases participation/excludes individuals.
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Name	Anonymous
Demographic	Autistic individual
Response	Demand avoidance (pervasive drive for autonomy), having communication differences but not having societal awareness and acceptance of AAC
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Name	Anonymous
Demographic	Autistic individual
Response	Challenges such as developmental, learning, intellectual and communication disabilities make it extremely frustrating and difficult to feel like there are resources in which to understand that there are different ways and accomodations for different needs and that not only are these resources more than possible and available, they are necessary in that they contribute to a fulfilling and productive life, expanding all different aspects of not only autistic but also neurotypical learning, are essential towards understanding greater humanity and interpersonal development and empathic interconnectedness.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Having to adjust our communication to be understood by allistic people. The onus is on us to learn how we are misunderstood, to correct misunderstandings, to make our communications softer and more socially acceptable, and to learn social cues. Allistic communication is treated as the norm that autistic people must accommodate.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It’s very difficult to qualify for supports as an adult…for example, in Maine, you have to have ID to get supports as an autistic adult; but many autistic adults have normal or even above average IQ, and that doesn’t mean they don’t need supports! IQ testing is also a somewhat outdated way of looking at a person’s functioning…there are much more comprehensive ways to look at what supports a person needs.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Intellectual disability means that child cannot possibly function in society.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Developmental delays and communication challenges make learning vet difficult for children and most daycares and schools are not equipped with knowledge, skills and resources to identify and support children with these challenges - especially girls. It is very hard for parents of first born children to identify delays when they are moderate. It creates a significant problem for child learning but standard development tools often do not suffice, especially for girls or for when parents do not know what is 'normal'.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Gender and sexuality spectrum (I.e., transgender, asexual, bisexual, etc.) Intellectual developmental delays.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenge with my son's intellectual disability is that he will not be able to support himself with a job or live independently. He is able-bodied, but his IQ is about 40. He cannot write a sentence, let alone a paragraph. He would not be able to problem-solve if he were a clerk in a retail store, for example. He cannot correctly re-tell what happened to him earlier that day --either because it was not encoded or he cannot recall the events in order or understand cause and effect. I could write a book on this aspect; it is the most heartbreaking and terrifying aspect of his disability, and it is what holds him back the most (more than social deficits).
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disabilities
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Expressing need for accommodations without receiving stigma
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Name	Anonymous
Demographic	Other
Response	Doctors don’t often know if other disabilities can lead to problems with autism.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	communication disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Developmental disabilities, communication disabilities.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Representative of advocacy organization
Response	routines, how to handle outbursts
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Developmental disabilities and cognitive disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Lack of support for individuals and their families. Getting appropriate behavior support is critical but very difficult. Most providers will not accept patients with both commercial and Medicaid coverage. It’s impossible to find care
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It is very hard to find a community of support when you have a daughter with a rare genetic condition whose primary form of communication is using an Aug Comm device.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Incarceration
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Allistic, ablest, and neuronormative biases in every interaction that is NOT with autistic humans. Active and often intentional discrimination over learning, developmental, intellectual, and communication differences in every avenue of engagement with the greater and majority neuronormative culture and society. I left the last job I was able to get over this and filed an EEOC complaint and they declined to even try to depose and discover the truth of it. According to them, because I didn't allow myself to be further abused, I didn't have a case. Now I'm out not only the job, but the ability to see this company brought to justice for bullying over my communication differences and the profound discrimination and denial of my autistic being.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Learning disabilities, developmental disabilities, intellectual disabilities, communication disabilities
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Name	Anonymous
Demographic	Autistic individual
Response	Neuronormative bias causing autistic burnout, compounding depression and anxiety.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication disabilities.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication, finding qualified staff, retaining staff, finding, and retaining employment, burnout, finding medical professionals who are willing and qualified to treat, etc.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	lack of resources and trained professionals (doctors), no ABA programs or similar
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Severe intellectual disability impacting learning and quality of life. Severe expressive and receptive language challenges making it almost impossible to function in the world.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communicating her thoughts are very difficult for her.
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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
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Many individuals with autism do not have communication skills, which is why they often resort to challenging behavior. Many autistic people cannot speak, contrary to what shows like Atypical and Love on the Spectrum and vocal autistic advocates would have you believe. These individuals do not have a voice to advocate for themselves and their needs are often overlooked and ignored.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I believe communication challenges is one of the most impactful, when they do not have a method to communicate what they want/need/think, they are more likely to utilize externalized symptoms (aggression etc.) to communicate that something is occurring for them. To co-morbidity of intellectual disabilities, also leads to additional challenges most commonly with their executive functioning.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Communication disability - lack of knowledge about aac, false idea that spoken language is best
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Sensory processing disorders, language processing disorder, auditory processing disorder, reading comprehension challenges.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Dyslexia
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Lack of communication due to speech delays that can include apraxia of speech. This makes communication hard for the individuals needs and hard to determine needs by caregivers. This also makes it hard when going to school and being able to participate with peers ( a truly inclusive environment) in social interaction as well as teachers and other care providers. The lack communication can lead to meltdowns that can sometimes cause self harm. Learning disabilities such as dyslexia, dysgraphia and dyscalculia make it challenging for the individual to succeed in their education while also causing self esteem issues and behavioral issues when not receiving proper supports and communication devices to have success.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication differences
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	IDD and DD combined with ASD has been a disaster. We all love our family members but when one cannot tell you what hurts, what is wrong, what they need - it leads to prolonged illness often too late to diagnose and treat successfully. Many have had to have multiple teeth removed under anethesia due to a misunderstanding of aggression and self injury due to dental pain - yes, it is that simple. Toothbrusing, twice yearly dental appt and it can be prevented, but dentists do not want to serve this population. Most doctors do not want to. The reimbursement rate is low and, the needs to getting people with ASD in and out quickly goes UNHEARD and therefore, no care is sourced. Federal police should also consider creating legally binding policy, similar to that of an IEP (Individual Education Plan) so that agencies can be sued. Now, there are documents created constantly for "compliance" but families have no recourse when there is no progress or worse, abuse and neglect - do not believe anyone who tells you there is a system to report. For people who cannot be reliable witnesses - all allegations result in "unsubstanitated" results.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Again, everyone has the own unique challenges and disabilities associated with their autism, it’s hard to pinpoint the main one out of the options listed above
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It is hard to know why my daughter does talk... is it because she has an intellectual disability or is it just her autism. I know she understands language, and she uses other means to communicate with us. However, I fear for her future, her livelihood and her safety as she ages.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	With my daughter’s autism diagnosis I have noticed that her speech is always very random. She says what comes into her mind and most of the time it has nothing to do with what we’re doing. For example we could be driving and she would say that the fish doesn’t want to go to sleep. And although I don’t completely understand why she is stating this I believe it has to do with communication. I’m not the greatest at communicating but I have found that writing helps me to express myself and my daughter loves to draw. I believe that these are positive ways for individuals that struggle with disabilities to express themselves.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	School districts response to needs of child
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Held back in kindergarten because of failure to communicate with teacher, although quite bright intellectually.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Can I don't think it is fair to just name one. As my son struggles was all of the above. He is nonverbal and has developmental delays. But by far it is his intellectual disabilities. My son is 11 years old but developmentally 18 months old. We moved from Virginia to Delaware because VA school system did not support our child with intellectual disabilities. We discovered abuses, and he was locked in closets. Attending an public ASD School in DE has helped with son's treatment. Unsure about son's future has he has not improved or grown intellectually since diagnosed ; he has declined. It is not regression as he has never regained skills. (ie. he use to be verbal and now is non-verbal).
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	There are a lot of assumptions surrounding ID and communication difficulties (e.g., minimally verbal), which result in people not being adequately supported. (I.e., assumed they cannot do something). there is also a significant lack of attention to development and change in this subgroup (I.e., opportunities that were presented during childhood but were not successful may not be presented again in adulthood, even though further development may result in the person later having the prerequisite skills learning) For Learning disabilities - I think people have a misperception that autistic people have "scatter" across their profiles and do not adequately test for / consider LD, which may preclude appropriate intervention.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication - low frustration tolerance and meltdowns/screaming/aggression; increased escape into fantasy, checking out from the world around him Learning disabilities in communication and reading comprehension can cause impaired function in academic areas in which they have exceptional abilities. Social-Emotional delays become more significant as a teenager and young adult, impairing ability to interact appropriately physically, verbally, sexually. Poor awareness of boundaries and differences between people in different relationships (family, coworkers, classmates, supervisors). Impaired ability and motivation to start or try anything new- interview, apply for jobs. Poor tact, say whatever they think, even if inappropriate or would cause harm to self or others, or frighten people. As a parent of a now-adult that still acts like a 5 year old but is the size of a large grown man, I fear potential for indecent exposure, physical harm, sexual harassment, misinterpreted verbage or behaviors that can be misconstrued as threatening. Also, that my child could be manipulated to do something wrong by an unscrupulous person. Bullies of all ages can find out their triggers and use them to provoke a person with autism to aggression, flight behavior, suicidal behavior. I also worry about them taking food from anyone/anywhere because "I was hungry," and getting arrested for theft.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Not being able to perform a variety of occupations independently which when performed independently and successfully contributes to positive self esteem, self confidence and self worth. When we are not addressing their roles and occupations, we are not setting them up for success. Communication needs are also essential. ABA does not have training in acquisition of language skills. They should NOT be addressing communication skills.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son is developmentally delayed with fine and gross motor skills and is delayed in reading. Most of his behaviors come out during these activities. As he gets better in a particular are (i.e. handwriting) the behaviors start to go away. I wish more people realized that in order to work on behavior, you have to get to the root problem it stems from.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Learning intellectual communication and developmental issues, excessive phobias, OCD
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Name	Anonymous
Demographic	Autistic individual
Response	All of the above
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning disabilities,concentration, executive dysfunction, confusion, difficulty understanding nuance, taking information literally, memory recall, struggle to contexualize information, communication difficulties
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son doesn't have low IQ, but he is emotionally immature for his age. He didn't start talking until he was 3 1/2. He still struggles with a slight speech impediment.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	again we have been denied services unless the provider specializes in autism specifically. Also I think because communication disabilities are not a recognized category of disability that prevents employment, it leads to denial of the public benefits which are based on disability. In other words, the agency/govt says the autistic person can work when they really cannot because no one will hire them due to communication disabilities. However, their communication disability was not part of the equation for determining eligibility or the autistic person's ability to work.
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Name	Anonymous
Demographic	Autistic individual
Response	Communication disabilities are significantly challenging for ASD people. ASD people who are nonverbal have limited resources to communicate to others, and because of a lack of resources, education, and healthcare services, families of non-verbal autistic children will struggle to understand non-verbal communication. Having a way of communicating (e.g. via visual communication board, Talkpads/AAC devices, sign language lessons, etc.) will greatly benefit and improve communication between ASD individuals, families, and other people within society. This is especially important to research and bring more social awareness to because autistic POC who are non-verbal can encounter a higher risk of stigma and discrimination (https://autismspectrumnews.org/rights-and-challenges-for-autistic-people-with-communication-disabilities-in-the-legal-system/). Also, creating more resources for non-verbal and high support needs autistic people can potentially allow them to live independently, if that is something they desire.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	Challenges with communication - both understanding their world and effectively communicating their desires and needs are extremely impactful for most children with ASD. Lack of understanding in both directions is extremely frustrating and the source of many behavioral/emotional challenges. Helping them learn means of communicating effectively is an essential component of their education and their health and mental health care.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Communication needs, and those that are in hospitals not being trained to support those that need assistance communicating.
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Name	Anonymous
Demographic	Other
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Making decisions Planning, planning everyday activities Performing in school *****Accessibility to care ***** Communicating properly, how others would prefer it/ how they receive information Lack of accommodations everywhere **Lack of people’s awareness and understanding of autism**
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I struggle the most with communication. I spend lots of time thinking about things, but I don't know how to get my thoughts out in words. People misunderstand me often or just think I'm cold and uncaring because I don't talk often. I also have discalculia and struggle with all math. I can't count out change or read a clock face properly. I can't see numbers in my head so I rely on a calculator for all things, even basic addition or subtraction. I also have aphantasia so I can't see things in my mind at all. This affects my communication with others because they always want me to make decisions about things I can't see or comprehend. I have short term memory problems and autistic meltdowns and situational mutism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	My kids may not be able to earn enough income to live independently without a partner or room mates. They may not be able to travel. They may not be able to afford food or necessary medical care when I die.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	This varies from person to person but in our sons' cases, they have a hard time with social skills and communication. One son has speech challenges so he's sometimes hard to understand, and he doesn't read social situations easily. We have to overtly explain how to "read a room" and how to not monopolize conversations. He is highly intelligent, which is a gift, but his social skills are impaired. So we've got a child who taught himself to read at age 2, who loves learning and has a significantly higher-than-average IQ... but he struggles to fit in with other children due to his challenges with social connection. His motor skill challenges make it harder for him to participate in sports, but we encourage him to have fun playing vs be the best player. We notice that autistic kids who are diagnosed and supported do much better when their challenges/disability is acknowledged and openly discussed without shame or pity. They can thrive to the best of their abilities when adults focus on progress over perfection or aligning with the norm.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I was lucky enough to get screened through the school district as a kid (circa 2010) and received decent accommodations. I feel that I wasn't equipped to do well in school unless I had accommodations such as extended testing time, closed captions for Zoom calls, note takers, etc. I wish it was easier to get accommodations at school and there was an external resource specifically meant to help with disabled students in school. Like, additional funding for a class counselor who would check in on me more regularly and advocate for me. I had a strong advocate counselor via Trio (as BIPOC first generation college student) and feel that neurodivergent students would benefit from a similar program. Time blindness is near impossible to get accommodations for and is a very real issue independently of work ethic. I struggled to communicate with many teachers and often experienced bullying from teachers all the way until I finished college. They would make passive aggressive or condescending remarks that I often didn't pick up on but heard from my peers. I felt like I was either going to be a halo effect student or golem effect, but never flew under the radar no matter how engaged or quiet I tried to be. I rarely felt I had someone I could talk to about problems I had with authority figures, and generally experienced similar social isolation from my peers to a less hurtful degree. I think it hurt less from my peers because they couldn't really mess with my life the way a teacher can.
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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	That most of the therapies/schools/jobs expect autistic people to conform to a standardized allistic way of doing things, instead automatically modifying to allow for learning, processing, and working to each individuals strengths.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has intellectual disabilities but also has autistic fixations of certain subjects. He can therefor sound very knowledgeable about his fixations but is unable to function in other areas. This makes it difficult to convince providers of his abilities once they hear him talk at length about football. Many times we are assured that he can function in situations and the everything falls apart. The providers then get angry at us as if we misled them about his abilities.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding support at school. The pay is so low that people can’t afford to be a para or one on one support for these kids.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Due to our sons lack of communication it is hard for our son to express his needs and wants which make the aggression worst.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My brother has level III autism and is non-verbal. This is difficult when he has a tantrum or gets upset and we don't know the cause of him being upset. Especially if he is sick or god forbid has a serious illness he can't explain his symptoms. He does use his IPAD but uses it for smaller sentences.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	intellectual disabilities communication disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Learning, Developmental, Intellectual and Communication Disabilities.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I have noticed that my daughter struggles with comprehending and grasping information provided by health professionals. Unfortunately, most offices do not have visuals nor are trained on how to better attend the needs of individuals with ASD and co-occurring conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our daughter’s autism affects her significantly in many ways. She does not read social cues, make eye contact, or understand social conventions. Her social communication is poor, and she struggles with communicating in complex ways. She is also very poor at reciprocal conversation and talks almost exclusively about her own interests and experiences. She wants friends, but these obstacles make that difficult. Feeling isolated and misunderstood is one of the bigger challenges for her. Another major challenge for her is her lack of functional skills. On the Vineland, she consistently scores in the very low range even though her IQ is intact. It is doubtful that she will ever be able to live independently. We have tried repeatedly to teach her these skills; however, her progress has been slow to non-existent. Not being able to live independently changes the game plan entirely. She will probably need to live in a host home and depend on others to help her with almost all aspects of her daily life including getting out into the community since she doesn’t drive. It means a less full and independent life for her.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Again, as these are "silent" disabilities...at least initially...my son is very challenged by people who expect one thing from him but get another. Employment has been very difficult for him to attain as people can't...or won't...make room for additional support and understanding. He has three learning disabilities and an inability to read social cues. Makes it hard in the workplace. He has a HS diploma and is cognitively able to hold full-time employment, but he does need assistance occasionally that often isn't given.
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Name	Anonymous
Demographic	Autistic individual
Response	I have an autistic friend with dyslexia, but I’m not aware of anything else like this in my own personal life. I actually had hyperlexia as a kid.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Extremely difficult to find and maintain employment due to my difficulty communicating with hiring managers and supervisors.
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Name	Anonymous
Demographic	Autistic individual
Response	I have learning difficulties, it takes longer for me to learn things than the average person, and have some difficulty talking once in awhile.
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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
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Name	Anonymous
Demographic	Autistic individual
Response	Migraines Random loss of ability to speak Meltdowns Sensory overload Extreme fatigue Burnout
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Name	Anonymous
Demographic	Autistic individual
Response	Learning disabilities are pretty common, but I'd say that contributes to all the other disability types noted. How can you communicate well and/or hit the intellectually expected points if you don't learn, period, or learn around the same rate as other people? I'm not saying that we can't learn - I'm just saying the learning rate would naturally vary a lot based off others around us and whether or not we'll have classes to help us learn more effectively.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Getting FAPE. Often need to bring lawyers in. Schools will blame the child for not being able to learn when they are only looking at the autism diagnosis and ignoring the rest. Therefore appropriate accommodations are not provided for learning. It should be be a daily fight for the parents
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Name	Anonymous
Demographic	Autistic individual
Response	I struggle with communication and certain social norms, but otherwise I am a college-educated individual that has minimal-to-no intellectual disabilities. I had near straight A's through all of schooling, and I have an IQ of 160. There is a false belief circulating that autistic people cannot make decisions for themselves, completely stripping us of our agency and rights as human beings. Especially in regards to trans health care, many states are now pushing for a complete abolishment of gender affirming care for people who are also autistic. Not only is this unbelievably dangerous and tantamount to genocide, it reduces autistic people to be some sort of unthinking, unfeeling beings that can't take care of themselves. It is frankly sickening. Medical decisions concerning one's own body should be up to the individual, not a nebulous governmental entity that has likely never even interacted with trans people before.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Low expectations Infantilization of individuals with disabilities Lack of education Workforce crisis
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Unless a family has the financial resources to pay out of pocket for a private assessment, the special ed assessments tools that schools use identify next to nothing. Ever Autistic person is unique. Every person with learning differences is unique. Better, more nuanced, and more specific assessment tools will surface and identify each person's unique combination of learning differences and strengths -- but it costs a small fortune to do so. Most families have to rely on schools/school psychologists and many kids fall through the cracks as "fine," and don't get any academic or learning support or scaffolding.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In early years schools tend to address these conditions and ignore the autism. Communication issues and some of the other learning disabilities can lead to gifted children not meeting their potential. Schools need to address the needs of the twice exceptional individuals by providing the necessary accomodations and also providing an enriching learning experience.
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Name	Anonymous
Demographic	Autistic individual
Response	Developmental, cognitive, social, and intellectual disabilities
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Social and communication deficits make it difficult to navigate daily tasks, especially trying to maintain employment.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I have a hard time with conversations due to not understanding social cues and not being able to make facial expressions. It makes it difficult for me to make friends
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Name	Anonymous
Demographic	Autistic individual
Response	I do not have any diagnosed learning disabilities, but as someone who struggles to understand mathematical topics significantly more than in any other subject, teachers often told me that I “was too smart to be struggling” and things along those lines. Schools providing individual tutors (who actually teach the student, rather than just giving the answers) would probably help way more than just one teacher can
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Name	Anonymous
Demographic	Autistic individual
Response	Elopement, poor interception, poor proprioception, disordered eating habits, language acquisition, sensory motor, bruxism, monotropism, auditory processing
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Name	Anonymous
Demographic	Autistic individual
Response	Being able to hold a job, keeping up with day to day life, and being able to have a support system.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding good schools (especially pre-school). Figuring out the best placement within the school (regular classroom vs. special education classroom). Helping educators understand behavioral issues as communication of unmet needs.
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Name	Anonymous
Demographic	Autistic individual; Other
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	communication and social disabilities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	To this question, since the individual living in my house has all these needs it is difficult to say the significance of each challenge such as learning, developmental, intellectual and communication. All these are a significant challenge for him. Since he was diagnosed at a young age and there were no programs available for him, even there was actual diagnosis for him at that time he didn't get his needs for development. He tends to fare well in classes and programs available to at this time. But trying to find programs available to him isn't easy since they are only available to minor children and not much out there for young adults over 21 years of age.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	lack of language, ID
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	LD and IDD are significant challenges that can be supported with many existing curriculum and strategies. Communication disorders are trickier in this diagnosis and require focus on pragmatics, social skills and fluidity rather than pronunciation. When combined with and IDD it needs focused attention and support from therapists and educators.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Testing for vitamin deficiencies such ss vitamins, minerals, protein and side effects of any medication that may be same as diagnoses like severe tremors, depression, seizures, confusion and the list never seems to end including death!
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Not being able to adapt to a society where if you can’t work or make money you will end up homeless.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Learning disabilities including hyperlexia
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Name	Anonymous
Demographic	Autistic individual
Response	Isolation codependency a need for a support net learning complications we just think differently and communicate differently and people don't like that in general how we act and how we feel and sense things how we perceive social structures can be different and not understanding that difference and forcing yourself and others forcing you to act differently to who you are is exhausting
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Name	Anonymous
Demographic	Autistic individual
Response	I have auditory processing disorder so I process auditory input slower. I miss some of what is said and it tires me out quickly since my brain is working twice as hard to process what is said. It is exponentially harder to process when there is background noise and causes a lot of stress. Often I am quiet and miss out on social opportunities or become isolated because of this.
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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 dialysis needs ample communication abilities the clinic can not be conducive to this at times...esp when extra barriers
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	While I am not impacted by any of these excluding ADHD and ASD (neurodevelopmental disabilities, I have worked with clients with these disorders. In many cases, my clients were overlooked for either ASD or an intellectual disability since practitioners were unaware of the co-morbidity between them. Thus, they would assume that whichever they thought of explained all the symptoms. I think there is generally a lack of understanding of all developmental conditions especially among mental health providers. I think that efforts to bridge the gap between developmental disability and mental health work workers would significantly improve the underdiagnosis of ASD.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I also have ADHD-PI, which has left me unable to make up for the many deficits of having Autism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication difficulties are my main issues. I find myself scripting out every possible way a conversation can go and then panicking when the conversation goes off-script. I have always had issues with math and reading and I am finding out that I am concerned with dyslexia and dyscalculia. I have always had issues with my attention span and having to practice my emotions in the mirror. There are so many other ways that this could be improved as well.
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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 harder to question to answer and really is hard to sum up because these other disabilities are part of what changes how high someones needs are if they are on the spectrum. I think one challenge overall, is “higher-functioning” individuals getting recognized for their additional disabilities because they can get overlooked by not appearing to be “as autistic”. We have these additional disabilities but are often right on the line of it being a disability or not. It would be better to be treated and have the services and resources for those disabilities than not have them and struggle a lot when it is too late to still receive the help in school.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Stress and anxiety in autistic people is so high, they are constanly in fight or flight and the general public doesnt respect them or their boundaries and autistic people are left unsupported.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disabilities are very significant challenges. Two of my three autistic adult children have difficulty expresses their thoughts and feelings, and one of them is somewhat non-verbal--mostly with people they don't know. It makes it difficult to know how to help, if something is wrong. Also, being unable to talk about your feelings creates a sense of isolation, I think--those that can't are alone with their painful thoughts.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Developmental and communication challenges
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Developmental disabilities - your child isn't doing what they should be for their age and they are operating at a level far younger presents the challenge of how to enforce rules because there's an element of plausible deniability if your child is nonverbal like mine. So you are only working off of what your child is able to show you on their own and if they arent ready or willing to try communicating, you can never be 100% sure they understand what you are trying to teach so you could be dealing with the same set of negative behaviors for weeks, months, years until it finally clicks. Will-power is a factor that i dont think gets talked about enough. What happens when you can confirm that they understand a rule or expectation and they express that they don't want to and commit to not doing it. Changing their mind? Buckle up.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) Most ASD individuals have more than one co-occurring condition. Having several co-occurring physical,mental, and neurological health conditions is expensive!!! 2) Many co-occurring conditions happen simultaneously and it's often difficult to "tease" out and separate conditions. This in turn frequently makes it difficult to determine the best course of treatment. 3) Providers cannot treat autism as a one size fits all condition!!! Autism is an "all you can eat neurological buffet." Every ASD person's "plate" has different "items" and/or varying "portions."
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	dyslexia, situational mutism, hyper fixation
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Finding an educational program that could address his behavioral as well as his educational needs. Son was ASD Level one, but his attentional and behavior issues interfered with his learning.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	1) Helping people understand how to talk with her so she is comfortable and can express herself. Sometimes people don't understand she may need something rephrased or repeated to help her understand. Sometimes they don't explain things fully and take her first answer when maybe she didn't understand the question correctly and was just saying something just to get them to stop asking. Sometimes they just assume she cannot understand. 2) While inclusion is important, sometimes it is helpful for her to be around others like her. She was in inclusion classes throughout school and was never comfortable or accepted. She was bullied in elementary school and often ignored in the higher grades. She is now in a transition program and feels much more comfortable than she ever did because the students are like her. I wish there was more of a balance for her in school. It is important to feel comfortable and unfortunately, she never did in school until COVID when she did school virtually. 3) Finding programs to help young adults "in the middle" to develop job and independent living skills. She needs help with a lot of ADLs, but can do more than others with very low IQs, etc. I find that programs are either above her level (e.g. focused on college, which she is not interested in) or that they work on the skills she needs, but the other students are below her level so the program won’t accept her. Also, the programs tend to be far away, and she does not want to travel far from home.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring conditions can cause death, isolation, communication difficulties, missing work, transgressing societal norms, self-esteem and self-efficacy deficits, reduced income potential, reduced perceived mate value, inability to improve your situation (because of lack of awareness, planning, or ability to communicate), injury, disfigurement, increased dependence on others, direct discrimination, transgressing societal norms (e.g., hugging too much/too little), vulnerability to structural inequality in education, housing, transportation, nutrition, the justice system, and health care.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	all the above for us. it makes it really difficult to have just about all the above to be able to live a productive life in the real world. Keeping a job. for example. being able to sustain the real life living that it takes to live somewhat a normal life. Some are more severe than others but it still impacts a person with autism. ID is tough too. My son almost tests to be ID but he really is not. His challenges are in-between which it makes it hard to get/find the right fit for him. School and social groups.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Death Suicide being one of the leading causes of death among autistics Undiagnosed medical conditions in non-conversational/non-verbal individuals can result in significant behavior episodes, disruption of care, death in some circumstances Misdiagnosis- there are many people not receiving a diagnosis of ASD due to co-occurring conditions Females, black/brown people more likely to get behavior or mental health diagnoses due to the diagnostic tools being majorly biased towards the white male characteristics
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Intellectual disability Communication problems
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Developmental and cognitive abilities
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	About half the autistic people I know have dyslexia or disgraphia
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I've struggled most in areas that have little to no education infrastructure like how to navigate government systems, how to manage health issues and doctor visits, how to look for and apply for work. I also tend to get overstimulated by common things like the grocery store or other public spaces. Living in a suburban/city environment means I haven't been able to access many spaces outside my house because they're too loud, or too busy, or they stink so I can't breathe. That compounds other issues like physical conditions from not walking as much as I used to or lack of quality air. I haven't had the resources to move, so I'm stuck in an environment that is highly inaccessible and am reliant on my mom for food and shelter. Communication struggles have made it difficult to access what supports could be there. I wish there was a consolidated Autism Community Center to help connect me to supports and offer ideas that I wasn't aware of.
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Name	Anonymous
Demographic	Autistic individual
Response	I have a PDA profile of autism and I find it a real challenge to 'do' anything, even things I 'want' to do. I sabotage myself. I also have many executive dysfunctions around time, working memory, impulsiveness and internal and external organization. I also have many social challenges, the biggest one being monotropism. It is almost impossible to get me to change the subject once I am 'hooked' into it. I also suffer from the 'double empathy' issue where NT and ND people just seem to 'miss' each other's communications. It is in the social realm that I fall down again and again. My impulsivity and tendency to 'melt down' when my anxiety level rises alienates folks from me and I do not have many close friends.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Being gifted led to me not being diagnosed for years
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Name	Anonymous
Demographic	Autistic individual; Other
Response	struggles with communication with atypical or neurotypical individuals due to different communication styles
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Name	Anonymous
Demographic	Autistic individual
Response	Inability to respond appropriately in social situations, dyscalculia, inability to effectively communicate feelings, thoughts and boundaries with others
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Intellectual and developmental disabilities that co-occur with autism significantly impact the ability to perform activities of daily living and limit independence.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I have issues with auditory processing capabilities and this can male it difficult to understand the verbal information being provided to me. This causes a variety of challenges in my life, from having issues understanding the words being spoken to me by a friend, to have difficulty comprehending information or instructions given to me by a professor or employer. As a result of these issues, I have had difficulties in certain classes throughout K-12 education and college education and I have been reprimanded by employers for not understanding instructions for a task given to me the first time they were given. Additionally, when I am able to ask for information to be repeated to me, the person to repeat this information will often either become annoyed with me or infantilize me as they interpret my lack of understanding as stupidity or laziness.
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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; Service provider, health provider, or educator
Response	Learning disabilities, development disabilities, intellectual disabilities, communication disabilities, social interaction "disabilities", and unable to obtain and maintain a job/career. Sensory issues, executive functioning difficulties, impulse control, eating disorders, substance use, self-harm, OCD, inability to stim in public for fear of judgment, and lack of understanding from those around them. Isolation, lack of human connection.
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Name	Anonymous
Demographic	Autistic individual
Response	Educational support, access to communication tools
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Developmental delays/disabilities, language disorders, socialization issues.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Everyday is a constant battle of trying to understand and decode the world around me. I struggle to learn new things because I have this feeling that I can't make mistakes or I'll be punished, so I don't want to learn new things now. Communications is a struggle daily because I think I'm being clear and direct, and I'm being rude or blunt. Developmental delays? How am I supposed to know when I didn't know what was wrong with me until I was 40? Now I'm having skill regression, and I feel like I regressed back to childhood and now I have to relearn everything as an adult. I think I'm directly communicating, and yet I'm somehow not. I did learn American Sign Language and I communicate easier in that. Which kind of helps, but not everyone knows it. Guess what? There are no community resources or support for autistic adults. In fact, I had a health professional say, "you're to old, there's nothing to help you" Then you all are wondering and trying to figure out why suicide is so high amoung neurodivergent adults? We have no support and no help!
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The nuances of interpersonal communication is, hands-down the most significant challenge. While I'm very intelligent and articulate, I often miss particularly non-verbal cues, and I default to the literal interpretation of things. I frequently find myself processing things fundamentally differently, which very often causes communication breakdowns that I've yet to be able to prevent or mitigate. It's destroyed a great many personal and professional relationships, requires a great deal of emotional energy to handle, and is a large source of anxiety, depression, and PTSD.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Communication disabilities bring the most challenges. These can be mitigated with technological speaking and interpreting devices.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Communication is a huge problem. I’ve read books on body language to better understand people in social situations. Small talk feels like a lie, I avoid it. People are uncomfortable when you truthfully respond to the usual “how are you?”, they don’t actually want to know. I find myself auto responding to them now, which is what they want. In my day, school was not capable of teaching me. I did poorly in most subjects, because they did not interest me and I would forget to do the homework. I was overwhelmed by the large classes, and could not focus. I had frequent meltdowns and confrontations with bullies and teachers. My lack of education means that I have limited job opportunities. I have trouble learning visually and orally. I have to do something repetitively to retain it.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Treatment for adults is nearly nonexistent
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It makes folks so vulnerable to exploitation, and it makes families vulnerable to misunderstanding. It is easy to have a kid that will (for example) always choose the second choice in a question. If someone knows that, they can use that to get whatever they want as an answer from a person. Having a nonverbal child can be challenging in so many ways. It is harder for them to advocate for their basic needs or even tell folks if they feel bad. I feel like government systems aren't adapted to handle different communication styles, that are often totally individual to the autistic person. This is understandable, but often makes government forms and questions always nonsensical and necessarily works of fiction. Example: How can a parent know if a child who is nonverbal, has intellectual disabilities, and never expresses things in terms of emotions is ever suicidal? They can be asked that by medical professionals, but there is no way to ever answer it factually.
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Name	Anonymous
Demographic	Autistic individual
Response	Communication issues: 1. Will miss Important Information for a task 2. Will perform a task incorrectly 3. Trouble with directions 4. Offending others on accident. 5. Problems following directions from law inforcement or government officials 6. Knowing how to do things like buying plain ticket or mailing something or cashing a check. 7. asking for help is hard sometimes. Developmental disability: 1. Still have trouble tying my shoes. 2. Stiming can be disruptive to my task 3. Melt downs can be dangerous to me and others around me when I'm driving Or at a store. 4. People often mistake me for being on drugs.
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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	Cognitive disability, auditory processing, visual processing, dyslexia, dyscalculia, learning disabilities, process disorders, communication. Poor health leads to a greater struggle to perform life skills/goals. Intellectual disability - harder to learn and implement skills
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Name	Anonymous
Demographic	Autistic individual
Response	I am incredibly black and white in terms of processing and communicating. This can be very difficult for employers and co-workers to understand. More than capable of handling the work typically, but horrible at reading emotions and non-transactional details.
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Name	Anonymous
Demographic	Autistic individual
Response	Isolation Unemployment
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Inability to participate with peers, inability to participate in services meant for children and adults with intellectual disabilities due to aggression and high level of care needed. Inability to self advocate and communicate needs and wishes.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I worked as a DSP for about 3 years and truthfully the biggest issues I noticed for my clients with co-occuring conditions was that some of the people supporting them would outright refuse to try and learn new ways to communicate or work with the clients. All the people I supported had diagnoses of Autism and Intellectual Disability, but they were incredibly intuitive and intelligent in their own ways. They had to learn to adapt to a society that does not value them in order to survive, even in a group home setting where they should have received plenty of accommodations and services.
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Name	Anonymous
Demographic	Autistic individual
Response	Few friends due to mutual misunderstanding. Frustration with trying to keep track of unwritten rules
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Difficulty taking care of body and home
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Name	Anonymous
Demographic	Autistic individual
Response	dyscalculia: hard to draw because i don't understand geometry, my brain mixes up numbers with other numbers like 0 and 9 are the same number to me, i don't know even basic math to the point that i now struggle with addition and subtraction when as a child i didn't used to cognitive deterioration: nobody is patient ever, people especially doctors make me do things i don't want to do, they're mean to me they don't understand don't try to, they make fun of me, they talk over interrupt me, i don't understand so many things and no one bothers to make anything simple anymore they always use big words i don't understand, even this form is worded confusingly, i don't know if i'm supposed to talk or just list, socializing is extremely hard because i don't know how to respond
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication difficulties- child has a severe phonological disorder and moderate apraxia of speech. Child is 10 and can’t read on a K kindergartner level. Child has participated in private and school speech therapy. Educational speech/reading in public school is inadequate. Regular tutors ineffective and expensive. Educational system isn’t properly funded to address issues AND school system’s goals are NOT the same as family goals. Hard to find competent SLP’s in school and medical facilities who know how to manage behaviors of autistic patients (esp ones with a PDA profile) and our knowledgeable about apraxia, prompt therapy and gestalt language processing. Clinicians do not teach parents nor do they give parents HW to do with child.
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Name	Anonymous
Demographic	Autistic individual
Response	I struggle with verbal communication, more specifically turning thoughts to words. Writing is my most effective method. My most effective method of learning is by working along side someone. My reading and auditory comprehension struggle. I feel I have average to above average intelligence in the form of problem solving, memory recall and pattern recognition.
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Name	Anonymous
Demographic	Autistic individual
Response	Communication differences lead to being easily misunderstood. I am very blunt and straightforward in my communication style, and this often seems bothersome or even threatening to many people.
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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	Not being heard or fully understood despite using very direct and clear language. Not being given space when needing time to process how to respond—sometimes we are unable to respond right away or in the moment. But if these things seem to offend others. Not entirely sure why. Being infantilized if we are non-verbal—being treated as if we have no self awareness or ability to think or understand. All of this inhibits our ability to interact with others which is crucial in social, educational, or workplace settings.
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Name	Anonymous
Demographic	Autistic individual
Response	Difficulty reading, difficulty focusing, difficulty advocating for self, difficulty communicating needs/wants, difficulty learning in typical school environments
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Just the humanity of it all. I’m a level 1, whatever that means, so I don’t “need” support, but that also means I have everything delivered and I am rarely around another human being. Any length of time spent around another being physically puts me into a drained battery situation for several days. Needs look different for everyone. I’m still a human and need human connection, but I have no idea how to effectively navigate that without exhausting myself for the foreseeable future.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Other
Response
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic individuals who can not communicate verbally have the largest risk for abuse. They need access to care that enable them to communicate their needs and wants. Caregivers need education on therapy that helps not hinders mental health.
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Name	Anonymous
Demographic	Autistic individual
Response	-Knowing what you need but not being able to communicate it -Lack of adaptability from others for any form of communication other than verbal
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Social awareness and social skill. Making and maintaining friendships. Responding appropriately and not having extremem reactions.
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Name	Anonymous
Demographic	Autistic individual
Response	Since I’m so sensitive to specific sensory information, it heavily impacted my ability to consistently focus on school. If my pants were too tight I couldn’t focus, if someone had eggs in the classroom I couldn’t focus, if someone was yelling or chewing too loud I couldn’t focus, ect. My school had a difficult time providing decent accommodations, as my 504 was often ignored/denied simply if teachers didn’t want to respect it. I wasn’t placed in special education due to my assigned sex at birth as well as being labeled “high functioning” despite having much trouble functioning in a normal classroom setting. On the other hand, I had a great time learning in environments that were comfortable for me and did great academically (usually on the A/B honor roll) as well as exceeding in extracurricular classes. I graduated easily (aside from truancies from sickness) and am now enrolled in college courses.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	While my loved one communicates clearly they do occasionally have difficulty processing information.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Communication has always been a challenge for me, I understand myself and my own thoughts quite well I just have difficulty expressing thoughts in a timely manner. It is difficult to be intellectually or cognitively able but unable to communicate at a "normal" pace.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	It is disabling to be in a world of 90% normal people, who hate, reject, disown, deny, and ostracize us because that's what they are taught to do by everyone else. We need everyone to understand how we communicate and what we need to function "properly". The way we are treated by everyone who doesn't understand, doesn't listen, isn't patient, isn't compassionate, is a huge part of why living as an autistic individual is so painful. At times not being able to speak, communicate wants, needs, choices, feelings, makes people see us as walking vegetables. We are treated as not human. We frequently have difficulty using technology, reading instructions, reading maps or road signs, engaging in conversation, describing ourselves to others, reading walls of text, writing neatly or swiftly, listening to spoken words, retaining spoken information, understanding spoken information, understanding the pressure of being in the same room as someone we know doesn't understand us. Some of us are better with words than others, but those who can not speak for themselves have the same heart inside them as I do. They are smart and conscious and they feel things significantly more intense than normal people do. We just want to be treated like everyone else, not different.
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Name	Anonymous
Demographic	Autistic individual
Response
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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	Situational mutism often makes it difficult to talk, most often in (1) conversations with more than one other participant, but also in situations involving anxiety. I literally lose the ability to speak, despite having the desire to speak and the will to speak.
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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, including dyslexia.
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Name	Anonymous
Demographic	Autistic individual
Response	I do not have any coocurring learning disabilities
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Name	Anonymous
Demographic	Autistic individual
Response	Social and school related issues. I tend to have a hard time reacting on the spot, teachers and students alike have made fun of me for responding in "weird" ways, and because I have a hard time understanding instructions I would be made to feel stupid if I asked for help which means I don't know a lot of what I should've learned
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Name	Anonymous
Demographic	Autistic individual
Response	Dyslexia and general anxiety in crowds
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	i have auditory processing disorder and cannot make phone calls because of it. i’m also struggling to learn a second language because i can’t parse certain sounds, leading to incorrect pronunciation and can’t differentiate between my mistake and the proper pronunciation. i also can’t watch movies without subtitles, nor can i listen to a podcast without a transcript, which is incredibly inconvenient if i have it on in the background while working.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Going non verbal from stress or anxiety is involuntary
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Name	Anonymous
Demographic	Autistic individual
Response	n
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Name	Anonymous
Demographic	Autistic individual
Response	Autistic individuals are much less likely to be listened to or believed by doctors, and one of the reasons is communication issues. Autistic individuals can have a hard time making themselves understood by neurotypicals, especially in a situation with a person of authority where there is an underlying power dynamic. I've had some pretty bleak doctor appointments, and when I hear upsetting news I've been known to simply shut down. Even when I've had a hospital chaperone or family member present to help communicate on my behalf, they can't know what questions I have.
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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. Speech/Language Disorder: non-speaking, no access to AAC devices due to financial reasons, advocate for body autonomy, express wants/needs/requests. Intellectual Disabilities: deficits in cognitive functioning that impact abilitities to access the general education environment and acquire age appropriate academic, communication, social, behavior, and adaptive skills. Deficits in attention, sensory processing skills, and fine motor development also impact ability to attend to instruction, follow directions, transition, and participate in learning activities without significant support.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The most significant challenges caused by other conditions that Co- Occur with autism, are the combination of attention, deficit, hyperactivity, and attention, deficit, disorder with a mixed language disorder such as Receptive and Expressive language delays. My son has both ADHD/ADD and language delays that impact his ability to communicate and express himself while also comprehending the information that is given to him. Ever since my son was an infant there was always a risk for him to develop psychological impacts due to his physical condition with his heart . Lack of oxygen to his brain created issues in his early development . We saw developmental delays at a young age, which made it harder for him to learn and develop age appropriately .
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Learning disabilities Communication delays/ differences Motor coordination and strength issues Intellectual disability Tic disorders
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Name	Anonymous
Demographic	Autistic individual
Response	Getting advanced degrees to get better jobs is much harder for us than for the average person, and disability accommodations at an individual school don't factor in the fact that we can't spend extra time studying because we have to work to feed and house ourselves. Many colleges don't even really have useful disability services even though they're required to by law, and even if they do, individual teachers sometimes don't care and won't follow the accommodations anyway.
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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; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Lack of social knowledge and acceptance.
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Name	Anonymous
Demographic	Autistic individual
Response	I personally struggle with dyslexia. It’s difficult to learn when you struggle so much with reading and most of schooling is reading things.
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Name	Anonymous
Demographic	Autistic individual
Response	Because Ehler’s Danlos Syndrome is poorly understood and I find it difficult to verbally express what I experience, doctors have failed to even test for it. I’ve known for many years that I have EDS, and have not been able to get the healthcare community to work with me on it, even though I have asked for testing.
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Name	Anonymous
Demographic	Autistic individual
Response	I'll defer to autistic people with higher support needs and their caregivers on these specific conditions. I fear autistic people with less significant support needs will be more highly represented in these surveys, as they are in discourse in the public sphere in general, and I believe the comments of those with more experience with these disabilities should be especially weighted. I will say, though, that autism being understood so widely through the lens of research done by Nazis and the obvious implications of eugenics have allowed for the abusive treatment of autistic people (especially those who have difficulty self-advocating) for far too long, under the guise of medical support and intervention. Namely therapies like ABA and electroconvulsive therapy, but others as well. They often don't treat the root causes of difficulties autistic people face, nor view them holistically as a part of a complex and multi-system disability with many layers of cause and effect. Many autistic people are assumed to have lower intelligence and ability to interact with the world when the difficulties with communication, learning, and others can come from physical issues like facial hypotonia (for the sake of example).
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Name	Anonymous
Demographic	Autistic individual
Response	Labeled aloof-Oreo-blerd-nerd, geek-spaz-weird-eccentric-too sensitive-too smart-too quiet, hyperlexia, intense/encyclopedic special interests make social interactions difficult, labels such as INFP/HSP/GT only complicate Dx, truly never bored so intensifies isolation, intersectional identities, need for social justice and equity make friendships nearly impossible because of societal prejudices, biases, inequities, intersectional issues and pointing out employers violating employment law and intentionally discriminating in admissions and hiring and promotions and mentoring, all my life all friends are cousins I grew up with, extreme need for autonomy
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	As with everything related to autism, not being taken seriously and being infantilized. Taking things for face value (getting into dangerous situations or enduring sexual violence because because you misunderstood a social cue). Allistic people being extremely frustrated with you for not understanding or not complying to something you don’t understand. Extreme rumination.
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Name	Anonymous
Demographic	Autistic individual
Response	Differing developmental goals and tracks, disabilities being hyper realized via official systems such as the educational or employment systems but otherwise manageable or invisible, trouble reading, memory issues, need for longer down or break time or other concessions
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Name	Anonymous
Demographic	Autistic individual
Response	I have found that I process information differently, although I can usually keep up or ahead of others with effort. I have also found that communication with neurotypical people is harder than with other autistic people, in a way I would compare to both of us being semi fluent in a second language and trying to speak to each other with slightly varying personal dictionaries and ideas.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	As an Autistic and the mom of an Autistic teen, we’re fortunate to not have learning developmental or intellectual disabilities; I won’t speculate on which is worse for other Autistics who have these disabilities. My teen and I do both struggle to a degree with communication, despite both of us being verbal.
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Name	Anonymous
Demographic	Autistic individual
Response	Nonverbal autistics have a hard time communicating their needs and are often abused because they can't tell others what's happening to them.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Auditory processing is a concern. As mentioned previously, there are safety concerns with law enforcement because of slower processing and need for concrete clear directions. This is also a barrier at work and can lead to overstimulation, meltdowns, and burnout. It is hard to get slow clear directions provided as an accommodation in the entry level type jobs that autistic people often have to work like in retail or food service. Written steps with verbal reinforcement and repetition is helpful but often not provided.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occurring conditions like learning disabilities in autism can heighten educational challenges, while developmental disabilities may affect overall adaptive functioning. Intellectual disabilities may impact cognitive abilities, requiring tailored support. Communication disabilities can hinder social interactions and the development of essential skills. Addressing these co-occurring conditions demands personalized strategies to accommodate diverse needs and promote holistic well-being in individuals on the autism spectrum.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	When your child first gets a diagnosis, you get thrown all these different options for therapies but there’s truly no real guidance other than the hospitals social work department and they really just give you their specific list they offer. It’s not always convenient to caregivers to be driving to a hospital or maybe the waitlist is too long to get into. So you find yourself scrambling for outside resources and different therapies that are offered or maybe even school programs but really you don’t know what to expect. For a child like mine, who was a toddler when he was diagnosed, it’s hard to see that most other time is spent in therapies instead of with his peers. my child is what is considered to be level three and he is non-speaking, he’s been in therapy for two years now, and he is only four. Although there’s been some progress on his ACC (which I had to buy on our own because insurance takes too long and pushes back) it’s hard to know how to fully support him when he can’t communicate it. he can’t say his name he wouldn’t be able to tell you what his names are, or how to identify himself to others if he was lost I will not know if anyone ever lays a hand on him if I’m not around unless there’s visible markings. I have to worry on a daily basis, if my child is safe on a whole different level than a typical family worries because he can’t tell me if someone does something inappropriate to him or hurts him.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	There aren’t enough resources available for those with autism who also have interpersonal struggles / other disabilities. Having resources and correct information about these disabilities can help those with autism when they need the proper care.
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Name	Anonymous
Demographic	Autistic individual
Response	The real question is why atypical minds are only supported when they are children? Laws make it so that schools have to offer fundemental support in their education such as an IEP or 504. As adults we are unable to obtain the support or the style of learning and communication that we need when navigating life. People are just allowed to straight up deny our needs to save some time and a dime before accessing our real potential and contribution level. I also have ADHD, depression and anxiety.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The inability to express my emotions, so they are internalized. Extreme need for routine and a clean space, emotional outbursts when routine is changed. Difficulty in understanding and keeping interpersonal relationships. Rumination and obsession with trying to fit in to society.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I can only speak for myself but I am autistic, dyslexic and a children's librarian. English is a Frankenstein's monster of a language and it is not given enough credit for the freakish creole that it is. I would cry myself to sleep at night because there was seemingly no logic behind letters and I hated it. I wish someone told me (as I do my kids) that language is a living thing that undergoes evolution like other living things. That goose and geese are Germanic which follows a different plural logic than cat and cats, the plural of moose is not meese because moose comes from a language with no plural system and was not introduced into the English language until Europeans made contact with the Americas. That each word has a story tied to its geopolitical context not an overt logic system. I wish someone told me that I could be apart of language evolution, that language was not something that controlled me, but something I was an active participant in.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Speech language deficits which can lead to academic challenges, social difficulties etc
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	As a services coordinator for autistic children and teens, I see that there is a lack of mental health and substance abuse providers that can successfully treat autistic children and teens, especially those with co-occuring intellectual disabilities. My clients are often turned away from mental health and substance abuse providers and treatment centers because they are deemed to be too cognitively impacted to benefit from their services.
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Name	Anonymous
Demographic	Autistic individual
Response	Personally, communication difficulties are most challenging. I do not have additional intellectual disabilities to my knowledge, so, I cannot respond in the superlative as the prompt requests. Still, I am often misunderstood or misunderstand in ways that have caused me significant problems in the workplace or social circles. For example: failing to recognize that a boss stating "let us know if you have any ideas" somehow does not mean that they want ideas. Letting them know when I have any ideas then repeatedly being accused of wanting to destroy organizations with too much change, which inevitably leads to job loss. This is a major contributing factor of why up to 85% of adult autistic persons are unemployed.
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Name	Anonymous
Demographic	Autistic individual
Response	In terms of learning challenges, it can be hard for me to grasp certain topics that others can get easily, leading to me failing classes, falling behind in schoolwork, and heightened stress levels
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Many don't realize that they hire IQ autistics frequently have learning disabilities. We are not Sheldon. We have intellectual abilities and intellectual shortfalls. We need comprehensive testing to find our shortfalls before we are defeated emotionally. Some things we just need to be led through and not expected to figure it out for ourselves. I never saw a testing for things like dysgraphia dyscalcula. People assumed because we are smart we can't have these. But some of us do. They don't test for irlens syndrome either. It's amazing how changing background color can suddenly make reading or math easier. Fixing that can suddenly change a child from looking like a 70 IQ to 130. Common core math is an issue for us. We are much more concrete brain.
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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	Communicating with a nuero-typical individual is very difficult because when I believe I'm being direct an concise in my word choice they still can't understand what I'm trying to say. This misunderstanding makes getting through the interview process, ordering food at restaurants, receiving medical care and so much more impossible because we are disregarded.
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Name	Anonymous
Demographic	Autistic individual
Response	Learning disabilities
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Name	Anonymous
Demographic	Autistic individual
Response	extra processing time- our world is really fast paced and this is the biggest disabling factor in my own life misunderstood learning disabilities sensory processing disorders- sensitivities
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Some Autistic individuals don’t “look” disabled. Because it is an invisible disability, it is often disregarded and disrespected. We struggle in so many ways and sometimes are not believed by the public.
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Name	Anonymous
Demographic	Autistic individual
Response	Misunderstandings, or infantilizing us. People often assume we mean something we dont or will treat us as children. Autistic adults are adults. We are treated like we can't make decisions or are incapable of understanding things. We are fully aware people.
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Name	Anonymous
Demographic	Autistic individual
Response	Finding the right accommodations to fit you and then getting those implemented. It is often a fight to find accommodations that help you, and then an additional fight to get them implemented. Things like virtual learning for a hyflex environment should be an easy adaptation for those that need it, but there is great resistance from people like professors and teachers. Even the simplest of things, like adhering to accommodations such as extended time for tests or assignments are fought.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	The largest challenge for autistic individuals facing interpersonal difficulties or other difficulties that can co-occur with autism is a large lack of public education regarding how autism can present in individuals (i.e. an autistic individual may have an amazing talent with communication, but horrible abilities with sensory regulation, while another may be able to regulate their sensory overload but be unable to pick up on any subtext, tone, etc. in communication) and a SEVERE lack of support for autistic individuals that both keeps in mind how unique autism may appear in each person and respects the autistic individuals knowledge of themself and symptoms.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have trouble processing what i hear and speaking to people. when i attended school it was hard to follow what my teachers or professors were saying. If i missed one note i would be lost for the rest of the class. i usually have to teach myself the subject at home anyway but it's very hard to be present in the moment. in hand with that comes the speech issues. i usually have to think up scripts when i expect to speak to someone. once i say what i prepared myself to say, i cant follow up with the conversation because obviously interacting with people can bring the unexpected. its so hard to get noise out of my mouth and by the time i figure it out it's to quiet or monotone for anyone to understand my words or intention. a lot of what i say sounds sarcastic or rude when I don't mean for it to.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Effective accommodations are unknown. It's difficult to ask for accommodations when you cannot imagine what will help. It also takes time to adjust, so results can be slow.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The autistic people in my life are the smartest people I know. However, the current schooling system does not accommodate properly for them. They tend to be left behind when they should be far ahead.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	FREE PALESTINE FREE CONGO FREE SYRIA FREE YEMEN NO MO GENOCIDE JOE! END MEDICAL APARTHEID FOR BLACK AND BROWN FOLK IN USA! FREE HEALTHCARE FOR ALL!
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Name	Anonymous
Demographic	Autistic individual
Response	I'm lucky enough to not have learning disabilities, but as far as communication and developmental. ADHD is a nightmare on wheels on fire, but not being able to burn to death or crash. You're just forced to take the ride and scream into the void. It affects my work, my home life, my relationships and literally every and anything else one could think of. There's literally no aspect of my life that isn't somehow affected by it. I may not even remember to use the bathroom because of what ADHD does to my mind. I'm lucky that the people I do know are somehow understanding enough to not take offense when I forget they exist. All of this is just me being lucky because I know many people with no such luck in finding peers. Communication wise, I can be socially awkward and it's very difficult to maneuver those situations. I'm not sure what is the right thing to do and I certainly struggle to understand mannerisms of other people. I've learned some of the social scripts and use those accordingly, but it doesn't always work. Humans are unfortunately only sometimes as simple as reading a book. I have alexithymia which makes it nearly impossible to truly understand what other people may be emotionally radiating and I also barely understand my own emotions. Even as I'm learning and becoming more aware of my internal feelings it's still not perfect. I still very often miss my own emotional cues and for everyone else it's pretty much out of the question.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I struggle with reading as well as struggling greatly with math. I was in special programs as a child to help me, but the training for special education teachers has to be atrocious with the way me and my classmates were treated. Every autistic person I know has a horror story to share about life in special education. Being locked in "time out rooms" which were really dark closets, being screamed at for simply stimming or talking, being forced to sit and watch the same movies all the time instead of being taught anything. We are not lost causes! Just because i don't learn the same way others do, doesn't mean i don't deserve to learn at all. Even those of us who don't speak still understand. We crave learning. We just need teachers who care to teach us.
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Name	Anonymous
Demographic	Autistic individual
Response	I chafe at the language used here. Autistic folks learn differently. yes. But is that a disability or just difference? Personally, I learned very slowly but once I finally got a concept. I really 'got it' to a depth beyond many others who 'learned' it faster. People said that was a disability. I disagree and at 50 years old I feel I've surpassed many of those 'normal' learners.
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Name	Anonymous
Demographic	Autistic individual
Response	I have Dyscalculia and ADHD which makes it hard to focus and learn the way that others do. I find myself knowing information but not having the confidence to recall said information when it's asked of me, and my Dyscalculia has gotten me fired from workspaces before for being unable to reliably do basic treasury functions.
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Name	Anonymous
Demographic	Autistic individual
Response	I did not realize I was dyslexic or had dyscalculia until I was an adult and out of schooling. Once again caused by a fundamental misunderstanding by doctors and teachers that leaves many outside of the support systems we do have. The tendency to blame the child for difficulties instead of working with and learning from them causes incredible trauma on developing brains. Nonverbal support and understanding is minimal, especially when someone experiences it only some of the time. Suddenly shutting down and not being able to speak or only being able to speak with great effort is often turned against the person experiencing that distress as having behavior problems instead of empathizing with the situation.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	I struggle to communicate and always have. I look like someone who would not struggle, so I often appear rude, standoffish, or too confident. These are values I despise, so I become anxious when I am aware of this which is often when communicating vocally. I have always hidden my learning disabilities, but I know that due to my age and how public schooling was, I was separated as a "gifted student" which did offer me a chance to learn deeper in small groups, and that helps. I often can not focus or learn when being watched, and I can not perform as much as I know is possible when in a competitive environment. I do often feel developmentally delayed, but I have always hidden that. However, as I grow into adulthood I find new difficulties with every transitional period. I do not complete tasks as quickly as others, and I do not complete major life decisions in the time it seems I should. For example, I am not able to drive or get my drivers license.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I struggle to process new information that I hear, as it's very difficult for me to register the individual sounds as complete words. I also struggle to interpret vague or broad statements which could have multiple meanings and get into conflict because I don't understand what the other person is trying to communicate to me.
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Name	Anonymous
Demographic	Autistic individual
Response	I need extra time to complete tasks and my workplace closes early so always feel so much pressure to try to beat the clock. I benefit from direct and literal communication, most people do not communicate this way and am regularly confused by people. I also need space to be curious and ask loads of questions without being perceived as questioning authority. Due to how I communicate my directness has been viewed as insubordinate and had many issues staying employed in corporate settings.
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Name	Anonymous
Demographic	Autistic individual
Response	i could not multiply till i was in middle school. i have some dyslexia, and have difficulty reading even if i enjoy it a lot. i did well in school because i have good pattern recognition, and can use logic to make assumptions about the answer to questions, this was not good for me in the long run, because i never received accommodations or aid so my mental health suffered even if i could get by.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication differences cause a lot of misunderstanding and mistrust as does having spikey skill sets. Being good at one skill and bad at a related skill can look like trying in the one case and not trying in the other, but the autistic person is trying and trying harder. Executive dysfunction is a huge problem. Without significant support, the autistic person may not be able to make or enact long term plans.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Communication disabilities are often the hardest. It is often not just a measure of fluency in a language, whether written or oral, but that the way in which the autistic mind processes and uses language often demonstrates a systemic difference in categorization and clustering of language. As a PhD student in psychology, I can communicate at a very high level: Yet, I am often misunderstood in common contexts of communication due to the fact that my Autism does not encode implicit social implications and symbolism from the enculturated baselines that are standard within allistic communication patterns. As such, my intended meaning is often distorted through the translation and implicit social attributions that are interpreted by an allistic listener.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	ADHD
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Too many to include even a fraction here... This summer I went to the emergency room for a neck injury and because I was in so much pain, I lost my ability to speak. But I was crying and looked "hysterical" to the doctors and nurses. They gave me anti anxiety meds which did not help. What I needed was X-rays and treatment for my neck. Because people don't understand autism, they misread us as having mood disorders or being irrational, but really our needs are valid.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Social anxiety caused by autism is huge! People can just pick us out and it feels like I’m in a full performance of a play, but i missed every rehearsal and no one gave me a script. It’s like there are rules for everyone but they only apply to me and I don’t even know what they are. I want to have friends but no one wants to be my friend. I am constantly on guard for any social rule I might be breaking. But it makes me even more insecure and unlikeable. I wish that when I meet people for the first time I could say, “Hi my name is, blank, and I have autism.” Then they would know I’m a bit different and then they might be able to make any adjustments for how they interact with me.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I do not personally experience this but as a special education worker, I witness autistic students with comorbid cognitive and intellectual impairments struggling to gather information from the environment like their peers do, which means they need more one-on-one communication, even when they wish they didn't have it
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication is a science to learn and it always felt like everyone got a manual but me. I'd fight with my mom because we don't think alike and I'd take her words at their meaning and not search and hunt for a new one based on the person. What the person says is what they mean. I would say that undiagnosed ADHD as a child was a learning disability. I never functioned properly in a classroom. My partner suspects he is autistic due to his comorbid dx's of Dsylexia and ADHD. He struggled a lot with his Dyslexia. He also never functioned in a classroom well and while he's extremely intelligent, he was not given the tools to succeed. Neither of us were.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The communication disabilities impact all of us severely and play into the experience of the other conditions. We often cannot effectively communicate our experience so that other people (even providers) can help us.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication issues are often not "disablilities," in my opinion. They become disabilities when neurotypical people are not informed about how best to communicate with us.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	It can be extremely difficult as an autistic person to get the help needed to manage life, home and work because of these co-occurring disabilities. When one has difficulty communicating, learning, managing documentation and understanding the processes we need to follow, it leads to us not being able to get help through assistance programs and if not diagnosed in childhood it is exceedingly difficult for an adult with autism to jump through the hoops needed to not only get a diagnosis but then also to get assistance or SSI. This leads to many becoming more and more burnout or worse, houselessness, substance abuse or even suicide. Without easy to aquire and understand advocacy, we go without critical aid potentially as long as our whole lives.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Establishing a functional communication system for non-verbal individuals is critical and is NOT happening in schools. Too many non-verbal people lack a way to communicate and therefore engage in the only form of communication they have which is their behavior. As a teacher I am tasked with creating behavior plans for students who are physically aggressive because they cannot communicate what they want/need. They don’t need a behavior plan, they need an AAC device!!! AAC devices are too hard to get and there often isn’t knowledgeable staff who can teach them how to use it AND teach their parents or guardians so they can use it everywhere.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Learning process is too slow and boring. american school system is designed to teach hours of nothing and kids need to learn important things from those in their lives who were never taught in school or seek mentors (privledge) Extreme miscommunication, especially in writing and expressing things that affect me personally. social interactions are confusing and exhausting. many jokes need explained and i’m often funny when not trying or realizing i said something funny. Financial disability- manic spending for dopamine, inability to budget, paying more for paying late.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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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	Communication disabilities. Clumsy. Non-athletic. Most of the autistics in my family are very gifted intellectually. Neuroscientists, doctors, engineers, very high intellectual scores and IQs… Not all, but most. Even the most severely autistic child in our family that is non verbal scores ok on standardized tests. You would think he isn’t picking up anything, but apparently he is.
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Name	Anonymous
Demographic	Autistic individual
Response	I tend to over explain everything in extreme detail and it’s often treated as making excuses.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has dyslexia and is a slow processor on neuropsych testing. If you look at his IQ without timing, he would be gifted but his processing is so slow an IQ cannot be accurately assessed. He struggles to get the thoughts out from his head, both verbally and in writing, unless he is repeating what he learned from another source which was audio. It's his original thoughts that can't get out cleanly. He also struggles to remember basic things like the order of the months on the calendar but can remember complex concepts. We have been told it's an issue of mind mapping and accessing parts of information. He also has trouble remembering peoples faces and names.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Because of a lack of education on the part of allistic people about autism, autistic people struggle to learn in traditional classroom settings and to communicate their needs. Autistic people expand a great deal.of time and energy having to navigate systems that are not designed for them, and this requirement that autistic people accommodate allistics is exhausting and frustrating.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I struggle alot to cmmunicate. I don't understand some social ques, have an understanding of "normal" behavior, and find I vant express how I feel in convincing ways that are also natural to me.
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Name	Anonymous
Demographic	Autistic individual
Response	Having a job. Even when they say they will accommodate you the managers never do because “you can’t be expected to have special privileges.”
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Name	Anonymous
Demographic	Autistic individual
Response	communication disabilities, learning disabilities, intellectual disabilities, developmental disabilities, chronic pain & illness, poor mental health
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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	Some of the most t challenging things I would say is not knowing what my child feels, or needs. My child is non verbal and because of this I don't know what he feels. I don't know what he understands or doesn't understand. There is also lack of understanding from the community and in this case the world. There isn't enough resources or education. For example at the moment I have no idea what I am going to do for his education.
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Name	Anonymous
Demographic	Autistic individual
Response	Just seeking help in the first place is difficult. Having to struggle with paperwork, phone calls, rescheduling, remembering appointments. Then, if you can make it to the appointment, having to struggle to be heard or treated; to communicate with the doctor in their very limited time what is wrong; they do not have time to properly listen and consider and communicate clearly with patients who are disabled. They do not know enough about these disabilities either.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I live in a society that is not only not designed for people like me to thrive, it seems to actively work against disabled people many times. I have been failed by the us healthcare system, the education system, everything.
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Name	Anonymous
Demographic	Autistic individual
Response	Difficulty with communication has made it difficult for me to access health care, and difficult for me to deal with employment. A couple years ago I was forced out of a permanent federal position because of a hostile work environment related to systemic dishonesty. In short, I was hired to do work that I believe in, but which my co-workers did not, and the fact that I took my responsibilities seriously led to hostility and social isolation. Luckily, I ended up in a different federal position in which these issues are greatly reduced. However, for my prior position I had developed substantial expertise over nearly 20 years, most of it through unpaid effort on my own time, and now I find that this expertise is worthless. It's depressing. I thought I'd found my life's work, only to find that it was all a waste of time, that my efforts and expertise are not valued because of my social / communicative limitations.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Im sighing right now. You're sighing right now. Everyone is sighing right now. Social isolation and the impossibliliyy of even living. There's something to be said for the destruction of public schools, with inflating class sizes and shrinking teacher salaries here. Something else to be said about how neurotypicality is the social structure creating the conditions necessary for autism to even be considered a serious disability as opposed to a certain kind of neurological difference. But we don't mind that overmuch, do we? We'd rather let millions of immunocompromised people, who are disproportionately likely to be autistic mind you, die for the sake of SOME extra money for the people who'd hardly notice it missing if you stole their [profanity redacted] wallet. The hardest part is knowing most people do not care, do not want to care, and likely will not start caring in your lifetime.
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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	Autistic individual
Response	Dyslexia and Dyscalculia lead to difficulty processing info especially at school/work. Dyslexia also affects ability to recall left from right. Auditory processing difficulty also can lead to issues when learning new information and will take longer to process what has been said.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	Dyspraxia, ADHD
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Communication Challenges for Autism- Level 1 Individuals
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My child has dyslexia and a speech disorder. Reading is a constant challenge for them and most other parents and educators do not understand. Until a couple of years ago, my co-parent and I were the only ones who could understand our child’s speech and we often had to act as interpreters for them as a result. Their speech disorder has also made it even more difficult for my child to socialize with other kids.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Communication disability
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Name	Anonymous
Demographic	Autistic individual
Response	People assume you are an [profanity redacted], get bullied, have to work twice as hard to communicate efficiently with many types of people and still get treated poorly for being autistic
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Name	Anonymous
Demographic	Autistic individual
Response	I feel like this is being answered in the other questions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I also have adhd.
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Name	Anonymous
Demographic	Autistic individual
Response	I also have dyscalculia, which is a condition that is not widely known or understood. I didn’t know it about myself until recently. It caused widespread financial problems for me, especially in conjunction with spending impulses and hyperfixation.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Lack of resources for alternative forms of learning and communication beyond K-12. California colleges (community through postgrad) have poor to no resources for ancillary courses such as basic arithmetic, social skills, and occupational therapy-based classes on writing / learning needs.
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Name	Anonymous
Demographic	Autistic individual
Response	Never receiving aid for cooccuring disabilities, forced to verbally communicate
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Delayed speech, delays in learning to read and write, Dyscalculia, Alexithymia
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Name	Anonymous
Demographic	Autistic individual
Response	I also have ADHD I struggle between needing a solid routine and wanting spontaneity.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The most challenging aspect is not being able to go to school or work even though I'm an intelligent and once productive individual. It affects my self esteem that I cannot function in society.
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