Policies and Archives

Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 7

Question: What lasting positive or negative impacts have societal changes due to the COVID-19 pandemic had on physical or mental health for autistic people? (Examples of societal changes: disruptions in services, increased remote work and school, increased use of telehealth, reduced in-person social interactions and obligations)

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote work was good for me because I could regulate myself in my own, quiet room at home and could work a flexible schedule and got a lot more done. Luckily I live in a household that was conducive to me getting things done at home. I didn't have to mask (camouflage autistic traits) for the benefit of everyone's little feelings at work. I do miss the concept of "third places" where you could just go hang out and "people watch" for awhile, just simply exist somewhere without having to pay lots of money to do so. The disappearance of third places has been slowly happening since suburbs were invented, but COVID accelerated their death. You can't even go to a park without there being hostile architecture, or you're lucky to even find a bench to sit on and watch the day go by. It's sad. But the elders want to yell at younger people for being "inside" all day, but there aren't any good and safe places for people to hang out outside, either.
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Name	Aaron
Demographic	Autistic individual
Response	Being able to stay home and not interact with anyone face to face was honestly one of the best things I ever experienced in my life. It’s hard to always be social and sociable especially when working or in public, and the pandemic at least temporarily helped that aspect and allowed me to not be anxious about social interactions or masking all the time. I was finishing college and working remotely when it started. Since coming back to work and obligations in person again, I’ve noticed how drained I always am masking compared to when I was able to just do everything from the comfort of home and on my laptop.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	The reduction of social gatherings has made many people with autism regress in their social skills.
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response	I really struggled with school due to the lack of structure. However, my depression actually got better during the pandemic. The overstimulation of a classroom caused me a lot of distress, and social distancing allowed my brain to get a proper break.
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Name	Abi Lea
Demographic	Autistic individual
Response	Some societal changes because of COVID-19 have had a positive impact on the autistic community. Events, services and therapies being held online often makes these things more accessible for many of us. Working from home is also a great benefit for many autistic people who find working at the office taxing due to thing like sensory issues and social challenges. However the change caused by the pandemic has been also created issues for many autistic people due to an increase in feeling socially isolated and difficulties processing and handling change.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive - As a parent I have come to accept that my son is better off in a small social circle than in the community. Negative - I lost trust in the system, in the government and policymakers.
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Name	Adam
Demographic	Autistic individual
Response
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Name	Adam Wehn
Demographic	Autistic individual
Response
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Name	Adriene Fern
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Adrienne Benjamin , Parent/Gaurdian
Demographic	Family member of an autistic individual
Response
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Name	Advocates of Autism of Massachusetts
Demographic	Representative of advocacy organization
Response	COVID has had a devastating health impact. Reduction of workforce and number of viable LTSS providers, exacerbated by the pandemic, continues to date. Many autistic adults have yet to return to services, particularly those with severe behavioral or medical challenges with more intensive staffing and those transitioning from education to adult services during and after COVID. (The vacancy rate in direct care positions in MA in Oct. 2023 averaged 24% (Association of Developmental Disabilities Providers survey).) Reduction in services has increased isolation, loneliness, skill regression, lack of exercise, and lessened overall well-being. After COVID closed in-person gatherings, some autistic people became anxious to leave their homes - even for school - due to social anxiety or fear of germs, leading to worsening mental and physical health. One positive outcome of the pandemic: an increase in telehealth services which can be a real advantage for some with autism. Some telehealth flexibilities have since ended, however, e.g., no more billing for remote CBDS services. There are circumstances when this would be beneficial to ensure continuity of care. e.g., when a participant is not in person for medical reasons, but still could participate in some activities. Also, some individuals are more comfortable participating in certain services online versus in-person. Eliminating such flexibilities fails to recognize that online communities are a new reality and provide benefits.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response	We were able to see the benefits of work from home and how much better that was for us, but that option has been taken from many people, and the same goes for telehealth. I personally found quarantine to be a healing experience., with less physical and mental pain and overstimulation. I was able to get good grades, thrive in my job, and maintain friendships all virtually much better than I did in person.
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	Service disruptions in day programming were terrible due to Covid. Many people with severe autism just sat at home. Most were not able to work with any on-line services. Negative behaviors increased due to the lack of routine. Family members had to "pick up the slack." I know people who dropped out of the workforce or retired because they had to be there for a disabled child or adult.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Weirdly, the resulting cost and scarcity of safe foods for my digestive issues. I can’t even afford most of what I can still even find since COVID.
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	I think the introduction of remote work and school are of great benefit. I never thought I could go back to school due to being forced into a crowded classroom with multiple noises going on and trying to focus. I am learning programming on my own in a nice quiet environment I can control. Having a hybrid schedule really helps me rest from sensory overload.
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Name	Alan Owen
Demographic	Autistic individual
Response	For those with social anxiety, the lockdowns were a blessing. Remote work and schooling were a benefit as well, and not worrying about social responsibilities was also good.
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	It has negatively impacted their development for socialization, environmental awareness, sensory input, and generalization of skills across different environments and people. Things have gotten a little better now but people with autism continue to struggle more than ever before on these important skills because the lack of interactions and going to different places was cut during covid. Some of the most detrimental years of development were cut for children that impacts their development.
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Name	Alex
Demographic	Autistic individual
Response	Positive, less people approach us. Which creates less of an overload on us. Negative, people are more likely to reject each other which is something we already struggle with and it makes it harder on us to ask for help and get the help we need, even if it’s just asking where something is in a grocery store.
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Name	Alex
Demographic	Autistic individual
Response	Having an increased option for work from home where I can control sensory overload and reduce burnout has been greatly beneficial the same goes for higher access to delivery and telehealth appointments. The ability to move about with people distancing and masking has also greatly reduced the burnout I'd experience before the pandemic making it easier to retain a home and a job. I'd love to see these things grow and continue so that when there is space for it more people can enjoy more 3rd places more often without causing total shutdowns due to being repeatedly sick or overwhelmed
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Name	Alex
Demographic	Autistic individual
Response	The increase in remote work and services was a huge, but short lasting win for autistic workers. We're largely disconnected from society by non autistic people, so the mental health impacts didn't hit our community as hard. I wish remote work was the standard.
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Name	Alex Curtis
Demographic	Autistic individual
Response	There is an increased use of remote work and school, and disruption in in-person therapy or other resources.
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Name	Alexandra Carlson
Demographic	Autistic individual
Response	I love video meetings (vs in person). I love being able to order food. I love self-checkouts. I love the explosion of discussions about mental health and recognition that addressing it is important. I worry that many children weren't socialized properly during lockdown and remote learning. They didn't get support services or testing and there are still shortages. Poverty here is still awful - mental health suffers when people's needs aren't met. Problems that existed prior to the lockdown still exist. Universal healthcare. Universal basic income. Universal Housing. Hell, universal internet access. Still upset that my city didn't figure out how to give all kids access to the internet during remote learning - that the school district had to shell out for hotspots rather than access to information and education being treated like a basic human need.
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response	Increase in remote access which is a good thing
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	Telehealth/virtual therapy sessions, decreased socializing in person, forced isolation, increased depression.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of access to stores being open 24/7. Pharmacy hours being limited. More difficulties getting medicine filled in a timely matter. Less support people in schools.
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Name	Alia Campagnone
Demographic	Autistic individual
Response	Positive impact on telehealth Negative impact on providers thinking we are faking even worse.
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
Response	People started unmasking during lockdown and isolation. Now it’s too hard to mask again, so mental health issues are made worse
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
Response	My autistic son was completely unable to interact with tele-school during the 2020-2021 school year. However, it is the increased use of tele-everything that is negatively impacting his overall development. While he enjoys conversing with friends over "discord," I've seen that the benefit to him from services like behavioral health therapy are cut in half when done on screen. He is at a point where he'd like to improve his social skills but programs like "PEERS" are only being offer virtually now. If he is eventually able to attend school again, he will need tutors to support his academic losses. I have only found one agency that is still operating in person, and their rates are almost double.
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
Response	The option to work from home has helped immensely for my mental health. The social expectation when in the office is so draining and makes me want to not work. Though I do appreciate that I go in once a week. Any more than that is draining. The options for no face to face interaction in most places also helps me when I want to go out for food or shopping but having an option where there is no talking is helpful.
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response	Positive: more opportunities to work from home, more access to telehealth. Less pressure to perform socially. Negative: less opportunity to make connections with people, lots of disruption to routines, people seem more hostile.
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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	One bright spot in the pandemic was the expansion of telehealth opportunities for families. In fact, telehealth was a blessing for some families (and found to be helpful for autistic adults with mental health issues) but after the pandemic, the ability to cross state lines for interventions/support via telehealth stopped. Accessibility to telehealth and to clinicians across state lines should be re-introduced and encouraged. In fact, some people got more access to services during the pandemic and now that has ended. Also, the ability to prescribe controlled substances across state lines should be reinstated.
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response	Increased remote work and school was a positive development until it started to be taken away. However, I appreciate the drastic uptake in the use of asynchronous and written communications methods such as Teams/Slack, as well as digital record keeping.
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
Response	Telehealth access, remote work access, and reduced social interaction for me was positive
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Many parents lost their jobs over riduculous mandates so were unable to afford services for their children. Many autistic children also couldn't manage masks due to sensory needs or language needs, and were ostracized at school or kept from public places.
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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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	I would say that a lack of treatment for mental illness (along with autism) is the biggest challenge. For those of us in SC, treatment of those with co-occurring disorders is bleak as the state agencies offering the answers are the same: they throw their hands up and act as if treatment for these folks is not their responsibility.
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Name	Amanda Kulesza
Demographic	Autistic individual
Response
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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	I think covid gave some people an opportunity to educate themselves on autisim. Many people came out of it with a different understanding of society and how they fit in. I think remote work/school was a good thing and a bad thing. Autistic people need social interaction more so then neurotypicals. But they need it calmer and quieter. It gave them a space for that, but took away the much needed face to face interactions. It's easy to hide when you don't have to and that's not healthy.
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Quarantine showed us that if everything stopped we’d all still be ok. It showed us that our government is fragile and we have a huge impact on its functionality. It allowed most of us to truly discover life without built in systems, and how much better society would be without them. It showed us that our “challenges” are only challenges to NT people in a NT world.
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I think a lot of positives that have come out of covid include the addition of more remote work opportunities, increased options for telehealth, fewer social obligations, and more understanding toward those who are struggling mentally. That being said, I would have preferred to not have chronic illness and worse depression than ever. It wasn't a good trade.
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Name	Ambree
Demographic	Autistic individual; Family member of an autistic individual
Response	The push for online school and learning on your own. They say it's "at your own pace" but in actuality they're not because the idea that you can do it whenever makes them a lot less sympathetic when you miss deadlines.
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Name	Amelia
Demographic	Autistic individual
Response	Reduced public transit meant I had to drive more, which is hard for me. I am still scared of public transit now because of how unsafe it seems to be and how everyone seems sick so often. Increased remote and hybrid work has been a godsend. I am often overstimulated in offices and by others, so having my own self-designed workspace where I can thrive is amazing and has helped my sanity tenfold. It allows me to take better breaks where I can try to manage my household chores better too. Increased telehealth has also been amazing. I no longer have to plan long commutes or worry that someone in the waiting room will get me sick. I also get to be in my safe spaces with less sensory input and focus on the appointment rather than my discomfort. Reduced social obligation has been a nice break, but the obligation part is what kept me social. I am learning how to be social on my own terms, but it is more difficult now than it previously seemed.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	Speaking solely for myself, the aftermath of the pandemic has simultaneously improved several aspects of my life and highlighted how little most Americans care about disabled people. On the one hand, the pandemic allowed me enough time to think and feel for the first time in over a decade. If it hadn't been for Covid-19, I'm not sure I would have figured out I was autistic. It would certainly have taken a lot longer. For me, being allowed to stay home and attend/teach classes when overstimulated has been incredibly useful. I don't have to hem and haw as much about advocating for myself in that regard. On the other hand, the blatant disregard for mask mandates and Biden's eager declaration of the end of the pandemic has solidified for me how America thinks about its disabled citizens. If it weren't clear before 2020 how expendable disabled people are to the rest of the population, it is certainly clear now. Just because the pandemic is over for able-bodied people doesn't mean it's over for immunocompromised people. The lifting of pandemic protocols has contributed greatly to the segregation of disabled people, and I think that is a real shame.
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	One of the positive impacts is the increased use of telehealth which helped improve access to medical and mental health care for some autistic people, but some payers and states are reversing some of the increased telehealth access and flexibilities from the pandemic. The increase in access to virtual school and work options has proved to be a benefit to some individuals, as more robust online communities and communication tools became available during the pandemic. Additionally, these remote options have helped reduce access barriers such as transportation. One negative impact is the decrease in social experiences. For example, remote school learning can work well for some individuals, but can also result in increased feelings and reality of isolation for others. Additionally, some of the social experiences that autistic people participated in before the pandemic have not resumed due to a variety of reasons including lack of funding. Additionally, many autistic people have increased anxiety as a result of the pandemic and societal changes related to the fear of being exposed to or getting sick from COVID-19. The pandemic also significantly impacted access to healthcare services, which has resulted in delayed diagnoses, delayed behavior services, and a loss of healthcare providers. This has created a rise in behavior symptoms due to the delay in services, which has impacted social re-integration and increased caregiver burnout.
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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	Telehealth care models were fast tracked at the start of the pandemic and have continued to be used as they provide many advantages such as savings on the cost of travel, reduced time away from work, and access in rural areas. With increasing prevalence of ASD, access to diagnostic assessments is crucial. Telehealth evaluations for children with suspected ASD can be completed effectively and have been shown to leave both providers and caregivers satisfied with the experience (PMID: 35579789). Family-centered interventions focusing on physical activity, executive function, and social skills have also demonstrated efficacy via video (PMID: 35184077). Innovative treatment delivery methods have been developed to remotely enhance social communication skills in autistic children, such as at home electronic games (PMID: 34788890). Psychiatric pharmacists are well positioned to complete medication management via telehealth appointments. BCPPs can reduce medication-related problems that autistic children have higher rates of, such as polypharmacy, and side effects from psychotropic medications. Additionally, telehealth visits can be utilized to answer patient and caregiver medication related questions, and support medication adherence (DOI: 10.1002/jac5.1880).
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response	Being left alone has been great, people keeping there distance from me has greatly improved my mental health. Not being expected to go to gatherings has also helped
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
Response
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Name	Amy Cox
Demographic	Autistic individual
Response	Self checkout and mobile apps have been great! Less human contact and much faster service. Covid was great for me, because of enforced social distancing and more sef serve options that lessened interpersonal contact.
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive: more curbside pick up makes it easier for me to get goods more easily Con: the staff shortages has made longer waits for even less services
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Name	Ana Pereira, Mother of an amazing autistic boy
Demographic	Family member of an autistic individual
Response
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Name	Ananya Rishi
Demographic	Autistic individual; Service provider, health provider, or educator
Response	- More remote opportunities. - AI assisted schedules. - More access to people online with similar conditions.
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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	Lack of availability of mental health care and or physical health care in general. - longer wait lists, disruptions in services, provider burnout/transfer of care to new providers because of burnout reduced social interaction and increased isolation limited opportunities to practice skills in community settings increased challenges in school settings Increased use of telehealth/video appointments
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	My daughter received school services and school related speech and OT via zoom for almost a year. Her summer program removed community activities and socialization for 3 summers. Nothing has been done to rectify all of the progress lost and the dive that my child took.
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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	Positive impacts I had was things like social distancing and services like grocery delivery. There was also a lot less societal pressure to go out, to interact, and to touch (such as handshakes or hugs). Negative impacts would be things like a massive increase in changes surrounding things like businesses. There were rules that we had to follow but not everyone followed them, hours changed and you could no longer go later at night when less people were around (even my 24 hour gym is no longer 24 hours and closes early).
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	He was already being ostracized by the community, COVID just made it that much worse. In fact that was when he started to get into more trouble being totally on his own. Also he thought COVID was just another excuse for people to treat him as bad and worse that they always have.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	Each Autistic person is different. For some autistic people like me, asking people to quarantine during covid and stay indoors unless absolutely necessary for work made for a quiet commute, free from many types of smells, loud noises and radio playing, and inconsiderate people on the subway system. For people that are hypersensitive to sound, light, and smell this was a blessing at times for me and others. Being able to go and work from home, and the Advent of hybrid education is taking society in a more inclusive direction even though people have tried to force human beings back into the cubicle, back into the hustle and bustle that degrades our mental health.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	My spouse has enjoyed the reasons to stay separate from crowds of people, and it hasn't been easy getting back to "normal" with going back in public. It causes her anxiety just going to the store. She would love to find remote work after discovering the peace of mind that staying home each day afforded.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response	I can only speak for myself, but I actually enjoyed quarantine for the most part. I know that might sound crazy, but after 18-19 years of masking, saying "I'm tired" would be a gross understatement. I loved not feeling that intense, relentless anxiety I always feel whenever I leave the house. It was also nice to not get judgmental looks from strangers all the time since I'm "odd-looking." I haven't worked a remote job, but that sounds like a literal dream come true for me, personally.
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	The societal changes brought about by the pandemic have had both positive and negative impacts on the physical and mental health of autistic individuals. The widespread acceptance and use of telehealth has increased access to care and support services. Similarly, the flexibility of remote work and tele-education have provided new opportunities for individuals with autism. However, for many, increased social isolation and reduced in-person interactions have negatively impacted mental health, leading to regression of skills in some individuals and heightened anxiety and stress for both autistic individuals and their caregivers. Service disruptions and staffing shortages for treatment personnel have also directly impacted quality of life for many people.
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	My son’s internship with the local hospital was delayed, but they were able to train in a food bank and hotel instead. Eventually they had access to the hospital program with all the necessary vaccinations and precautions. As caregivers we had to be extremely cautious not to contract COVID. Our lives were greatly impacted, minimizing social interaction to remain healthy. Parents of ASD children cannot get sick. We have few options in caring for our children.
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	see my previous entry. But Covid showed society that their addiction to in-person work and social structure was just an un-necessary preference, not a vital need. We can work, shop, meet, learn, play, and engage in so many more ways. Covid changed society to be more inclusive of a wider range of engagement methods and strategies.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response	We need more person to person options. A lot of my Autistic friends have issues when dealing with strangers/people on the phone. This is how their social anxiety show themselves.
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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	Telehealth is a positive. I was unable to go to the gym during COVID-19 and now cannot return due to long COVID. I am returning to school for a graduate program, but my attention span is nonexistent. I cannot sit still and continually fidget. I cannot concentrate at work. Increased remote services are a bonus, but some employers do not believe in remote, even during the pandemic they operated fully staffed in person.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	Reduced in person interactions because no one takes covid seriously
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Isolation from support Hard to breath and move More sensitive to the environment than before
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response	That was extremely hard for our son who thrives on routine and in the span of moments their life changed with no alternatives available to fill their lack of routine. My son went from school, aba, speech, ot, special needs swimming & adaptive tennis and golf to nothing available at all. Not even being able to go in many places comfortably. It truly left many families with a void and scrambling with how to create a new routine that would help their child process the world around them. Also when the world switched to virtual learning it was a literal joke for my son. The support wasn't there to keep him engaged and as a parent it seemed as though most of these individuals fell through the cracks.
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response	All of the above. Disruptions have negatively affected every aspect of life. Remote work and remote school simultaneously was impossible. Mental health suffered enormously. Reduced activities, reduced interactions. On a positive note, Telehealth was a major bright spot! We continue to use Telehealth to access care with our son's neurologist, and we were able to get parent coaching through Telehealth that we wouldn't have been able to do otherwise, with our busy work schedules.
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Name	Ann, Parent
Demographic	Family member of an autistic individual
Response	Covid19 isolated people living in group homes from their families. Please pass the Essential Caregivers Act.
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	Isolation, depression, anxiety all appear to have increased. While some contend that telehealth and remote learning prevented a disruption in services, minimally it caused a difference in services that has never returned to pre-COVID. As mentioned, requests for in-home services/telehealth continue which promotes isolation and is frequently driven by anxiety and fueled by depression. Anxiety related to fear of contamination/illness which has compounded existing concerns about navigating the social environments of the community depending on the severity of the person with Autism's social judgement. Socialization is critical for all humans and COVID has markedly changed our patterns of socialization. I go into homes now because clients won't come to the clinic. Many only leave the home for school and an occasional outing. In many ways, this is not solely and issue regarding the person with Autism but more a statement about how culture in general is more isolated.
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Name	Anne Marie Price
Demographic	Autistic individual
Response
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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	Tele-instruction and tele-health are both positive and negative. Depends on the individual. Disruption in services during critical learning windows is a negative impact. Reduced community interactions results in less practice in social exchanges and less opportunity to learn about your sensory reactions and adaptions to a variety of settings.
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Name	Anthony
Demographic	Autistic individual
Response	I think that the examples all have implications both positive and negative. The big change that is a relief is that the social contract of physical contact(handshakes and hugs)
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Name	Arianna C
Demographic	Autistic individual
Response
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
Response	Longer waiting lists and services being interrupted by providers leaving and not being able to find replacements
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Name	Arushie Nugapitiya
Demographic	Other
Response	The individual support was not available
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Name	Ash Keen
Demographic	Autistic individual
Response	Remote work and telehealth appointments make employment and healthcare much more accessible for some autistic people
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Name	Ashleigh
Demographic	Autistic individual
Response
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Name	Ashley
Demographic	Family member of an autistic individual
Response
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Remote work and telehealth have made things much more accessible for autistics. But lack of clear guidance and rules and education regarding the seriousness of COVID has made it difficult to know what is and isn't safe or reasonable to ask of people.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	A positive is increased telehealth.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Audrey
Demographic	Autistic individual
Response	Remote work has done more for my mental health than therapy ever could!! Being able to stay in my safe safe, surrounded by comfort items and with support people has been MONUMENTAL in allowing me to find a day to day equilibrium with fewer meltdowns and fewer sensory interruptions. Venue caps on attendance are fantastic to make sure things will not be overly crowded and I know how many people to prepare to be around!!
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	It being more social acceptable and the online resources to help with coping mechanisms
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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
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Increased remote work has helped me decide whether to go to work in-person or remote according to my social battery. This has helped me prevent autistic burnout.
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Name	Ava
Demographic	Autistic individual
Response
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Name	Azure
Demographic	Autistic individual
Response	I have social difficulties due to my autism but I love to go out and I love to be around people who are understanding. I was also born with orthostatic hypotension. This condition can be caused by COVID 19. Should I ever get COVID 19 mine would likely get worse, permanently. The lack of precautions has forced me into isolation.
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Name	B
Demographic	Autistic individual
Response	It was good for a while, a lot of jobs were letting people work remotely or hybrid but now a lot of companies are backpedalling on that and requiring documentation despite productivity being up for a lot of these companies. Which ahas then led to issues with people scheduling appointments, increased social interactions and misunderstandings and obligations which lead to burn outs.
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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	See questions 6 response
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Reduced social interaction and setback in terms of social progress
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Name	Bella
Demographic	Autistic individual
Response
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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	I have found that the decreased social obligations due to covid have allowed my nervous system a bit of a rest. Telehealth has been wonderful. Before I would opt to not address medical issues because hospitals and clinics are so overwhelming (bright lights, noise etc.)
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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	This is not applicable for every autistic. Not all of us struggled during the pandemic. Please don't focus the entire research on COVID-19 impacts on autistics. PLEASE. THERE ARE MORE IMPORTANT THINGS WE NEED YOU TO COVER AND UNDERSTAND.
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Name	Bern.W
Demographic	Autistic individual
Response	Remote working Flexible hours Homeschool support More contact via email
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	My son's life already had negative impacts before the pandemic, and nothing has improved for him and the stress on the family.
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Name	Beth Greenspan
Demographic	Autistic individual
Response
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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	Providers are unable to attract quality service providers. And the providers they do have are more susceptible to colds and other illnesses. There is also an increase in mental health and capacity related issues among providers. This has led to long wait list, inconsistent application of therapy, and increased burnout.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	All of the above referenced.
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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 on the spectrum are germaphobes. Their anxiety and fears about germs have escalated and not come back down.
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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	I eruptions in service care and isolation.
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Name	Beyza
Demographic	Autistic individual
Response	insanlarla fazla iletişim halinde olmak zorunda olmamak rahatlatıcıydı. maske taktığım için yargılanmıyordum çünkü herkes takıyordu. (daha önce yüzümün görünmemesini istediğim içün maske takmıştım ve bu yüzden zorbalığa uğradım) [Translation: It was a relief not to have to interact with people so much. I wasn't judged for wearing a mask because everyone was wearing one. (I wore a mask before because I didn't want my face to be seen and I was bullied for it)]
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Some autistic students thrive in remote schooling when in person school was hard to access due to social and sensory challenges. COVID-19 actually made school MORE accessible for a subset of autistic students. This should be a lesson not lost moving forward. Remote schooling should be a viable and equitable option. Remote therapy has created more options for families to access mental health services as well, giving families much needed time back into their day that is not spent driving family members to appts.
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Name	Blair
Demographic	Family member of an autistic individual
Response
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response	The online schooling was a big set back. Learning and social skills stuffers a lot
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Name	Brandy Joy Leigh
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Breana Turic
Demographic	Autistic individual; Family member of an autistic individual
Response	As I mentioned previously, the societal decrease in social pressures and demands has greatly improved my mental health and the mental health of all my peers on the autism spectrum. We are grateful for remote work and school options and reduced social obligations. If these options could be continually offered for those with disabilities I believe it would be a huge step in aiding mental health for those with autism spectrum disorder.
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Name	Brian
Demographic	Autistic individual
Response	Unfortunately it made stuff better. Things were more obtainable from stores, and messaging drs and even the delivery stuff. It is horrible that a pandemic had to happen for this stuff but it made stuff more easier to access.
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	Socialization is so so so important. Isolation causes long lasting mental anguish because we did not have choice - government made choices for us and shamed those that chose not to have vaccinations. Covid shattered by trust in people. Please note - I am a non-speaking Autistic and answered these questions through Spelling on a letterboard. Please, Please listen to us - we have the lived experiences that the decision maker do not have. I struggle to speak - but my thinking and understanding is fulling functional.
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	Disrupting his school was the biggest. He was pushed back a year because he couldn’t sit in front of a computer for remote learning. There was many many disruptions in therapies due to outbreaks. And his regression a consequence of that.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	I feel it has made people more aware of their autistic behaviors and existence and really united the community. Especially in their co-occurring conditions. New research has been able to come out due to people self-isolating, allowing them to "unmask" (not hide autistic symptoms) and being more aware of their condition(s). At the same time, I feel it has made people painfully aware of how much our society does a disservice to people with autism and its related conditions. In general, there has been more individual improvement, but more mental exhaustion from society at large.
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Name	Brittany
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Health services across the board are more difficult, many places lost funding, resources are strained or completely gone. This is a mess.
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	As per previous comment, a positive has been the implementation of virtual/remote options for appointments, school, and work. Not having the obligation to attend uncomfortable functions was also a benefit. I feel more Autistic people have been able to set better boundaries since the pandemic.
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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	I mentioned that stuff in the previous question. I feel that the increase in remote services has been extremely beneficial for me. I dread the idea of things “going back to normal”.
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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	I do appreciate that it is more socially acceptable to school from home now. Families are seeing the benefit of being able to meet their kids unique needs at home with less stigma.
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Name	Bryanna
Demographic	Autistic individual
Response
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Name	Bryanna, self
Demographic	Autistic individual
Response	increased remote work and use of Telehealth services have been magnificent with helping me with my ability to work however after 2022 those options started to disappear from the realm of possibility
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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	As an outside ever alienated citizen, tele socialising and tele schooling, even tele working and self tele employing is the VERY BEST thing ever to happen as a reasonable adjustment we (I) needed from 20 years ago. I will ever keep saying Covid lock down and all post keep safe protocols saved my life.
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Calen
Demographic	Autistic individual
Response	expanded access for telehealth + remote work, contactless delivery
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response	Positive: Increased accessibility of communication, work, and service options. Increase in remote work, online school, online communication, and alternative school offerings. Negative: Significantly longer waits for medical and mental health support. Much harder to find and access care.
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response
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Name	Callista Markham
Demographic	Autistic individual
Response	I think that the pandemic has mostly affected positive societal changes in my life, with concerted effort to make modified communication more accessible and acceptable than ever. I think work and school should be more disrupted by health and environmental factors than it is.
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	Our life has turned upside down since the pandemic. Trying to endure the distance learning and covid scares/tests increased our child’s anxiety and getting back to public school has led to burnout twice now. We are on waiting lists for an autism assessment and have been about 2 years now. We now once again rest to heal our child’s nervous system since the school couldn’t support her properly and we had no proof of her struggles on paper.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response	Disruption of speech and occupational services caused regression of years of gains. Social isolation and tele-health has caused extreme anxiety when we now visit in person. Missed years in school instruction do to inability to tolerate online education.
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Name	Caroline Rodgerss
Demographic	Researcher
Response
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Name	Carolyn Holston , Democrat
Demographic	Service provider, health provider, or educator
Response	Routine is often quite important to many on the spectrum. It was more traumatic to them than us, if they didn't understand why they just couldn't go to the store.
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Name	Carolyn T
Demographic	Autistic individual
Response	While remote services may benefit some, increased remote interactions have also lead to isolation and probable depression in individuals – these aspects are not inherently related to the autistic community, but this community is more vulnerable to change and emotional dysregulation which could lead to self-harm or suicide.
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	The lack of qualified experts and technical service providers have created long waitlist and delays in getting services. Medication shortage is by far the worst part for kids that need the meds.
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Name	Caryn Cramer
Demographic	Family member of an autistic individual
Response
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Name	Casey Foster
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased telehealth and remote work during and after the pandemic have made the world easier for neurodivergent people at large.
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	There was temporarily a positive change in that remote work became normalized, but that positive change is rapidly disappearing because executives are trying to force everyone back to the office, which is eliminating a lot of remote work roles.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The reduction of in person health appointments, increased use of zoom meetings for school, and the inability to get needed services greatly affects children who are in desperate need of in person health services, schooling, and physical/occupational therapy.
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response	Therapist were not able to work with your child. Having to stay home with kids and help them work from home. And reduce interaction with others
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	Being isolated when you already have a tendency towards shutting yourself off socially is damaging to the psyche and can be extremely hard to break
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Name	catherine martell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Catherine Nimmons, Parent of a child with autism
Demographic	Family member of an autistic individual
Response	Telehealth is used way too much. People with profound autism don’t respond well to telehealth
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Name	Catherine Slocombe, Mother
Demographic	Family member of an autistic individual
Response	An increase in telehealth is a problem. My son has had therapy for years, but it has done nothing to help him. He needs, and wants, to have therapy in person, but nobody does that anymore.
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	Positives: reduced in person interactions, virtual appointments, increased access to remote work and school Negatives: More sensory overstimulation, unmasking complications, people are less likely to be understanding of social and political differences after the political conflict over the pandemic and other policies. The world feels less safe. It is harder to trust people.
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Greater access to remote access to services, including work/school have been especially useful. However many services are no longer being covered. This includes getting access to stimulant medication which requires in person visits again after the COVID 19 emergency measures expired. Increased access to services that allow for delivery or decreased social interaction have been useful, but are often very expensive. The disruption of routines and coping skills has been both positive and negative. Many undiagnosed Autistic people have begun self-identifying due to the disruption and getting supports. However getting diagnosed is time consuming, expensive, often comes with long wait lists, and many providers who are not appropriately trained or qualified to diagnose high-masking adults, women, BIPOC, and people with extensive trauma and other cooccurring conditions. Many Autistic people have sought out testing and diagnosis to only be dismissed and increased experiences with trauma from medical providers dismissing their experiences.
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Name	Celine Fortin, The Arc of New Jersey
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Thank goodness for telehealth. My son would not be able to have any health or mental health appointments without it. It is still limiting as his communication skills are poor but it is better than nothing.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Positives: The ability to say no to social gatherings. The ability to wear a mask or practice sanitation precautions, and the ability to distance without as much judgment in certain settings. The stimulus check and free Covid tests. Negatives: Disruption in services because people with disabilities (including Autistics) always have to wait ridiculous amounts of time to move forward with basic life needs anyways due to societal barriers. Barriers to ASD diagnosis in adults and adolescents especially because some professionals assume that Covid caused socioemotional developmental delays.
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	Definitely disruptions of services, increase in remote work, school, therapies sessions, and some doctors' appointments whether medical or psychological.
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Name	Charli Barraza
Demographic	Autistic individual
Response	Many of us experience agoraphobia, either chronically or temporarily, and now we have a very real threat to our well-being that reinforces our fears, especially for rural, poor, and/or disabled Autistics who may not be able to receive immunizations for access or medical reasons
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Name	Charlie B
Demographic	Autistic individual
Response
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Name	Chris Bruner, Family
Demographic	Family member of an autistic individual
Response	I believe that it will take a great, maybe insurmountable, effort to help my nephew catch up. Because education is not funded appropriately, and there is not funding for additional treatments, he will be further left behind, and it will be harder for him to succeed
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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	vast bad needs in covid nasty for both physical and mental health. i learned to do zoom, safe great needs met in zoom.
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response	Fewer social obligations- such a relief!
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response	All of the above mentioned have been helpful for the autistic community
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	Difficulty obtaining income and health insurance
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	There is a placement shortage for adults who have autism that need extra support. There is a staffing shortage that is preventing agencies to move forward on new CILAs, day programs, community outings etc. Remote learning did not work for school. We have used telehealth due to debilitating anxiety since lockdown restrictions caused so much confusion and disruption.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	Positive: Telehealth whenever appropriate is a wonderful thing for this population and those who care for their medical needs. Negative: Health care providers and facilities experiencing long wait lists for services. For several years, my son has not been able to get an appointment with his dental clinic (specializing in treating the developmentally disabled). There are few options in Upstate New York for dental providers who are knowledgeable and willing to work with individuals like my son. Also, staffing levels have plummeted for Direct Support Professionals at residential programs, and these are the people who supply 24-hour care for our residential children/adults.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The ability to get out and do things with other people
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	Permanent Reduction of services
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	It's nice to be able to work from home. I have a college degree and my father gave me a work from home job in his company because I'm very privileged.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	Lockdown was an absolute nightmare. I had to bear hug my son to attend zooms. It was awful to have to try and force him to be in front of a screen. On the positive, my husband now works from home and that has been such a blessing. I’m not sure if I would still be married or alive today if not for his presence to support me and keep me safe from Caleb’s outbursts.
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Name	christine smallin, orange county dmh
Demographic	Service provider, health provider, or educator
Response	significant reduction in opportunities for community integration, socialization and work
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Name	Christopher M Sculley
Demographic	Autistic individual
Response
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Telehealth has been a huge positive that has come from COVID in general. It has increased access for so many people with multiple conditions that make it harder to get to multiple physical appointments. My flexible, hybrid work schedule has been a big improvement for me in terms of sensory overload and my physical health has improved some over time.
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased remote work during covid proved helpful for many then it was taken away due to prioritising investments in business workplaces. Severe isolation from lack of informal social access has hurt many people.
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Name	Claire Rattey
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Clayton Oliver
Demographic	Autistic individual
Response	See previous - it depends on the autistic person.
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Name	Cody Rabalais, Parent/Autism Society of Acadiana Board Member
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response
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Name	Colette
Demographic	Autistic individual
Response	I very much like having telehealth and hope the government continues with it indefinitely. I think covid was less mentally detrimental to me because I need less social interaction than a NT. I isolated at home and I live by myself. I had an elliptical machine and I increased my aerobic to 1 hour on it and it strengthen my legs. I also have a full set of dumbbells and love lifting weights. I have a balance pad so I do balance exercises weekly also as well as strengthening and range of motion.
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Name	Colleen
Demographic	Family member of an autistic individual
Response	Waiting lists failing services OMRDD services are fully responsible for the neglect and community waiver program never coming due to COVID never calling it was unreal my son still receives NO disability from NYS ... Community waiver program stated due to covid they must not of received it. So [PII redacted] is in jail !!!
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response	The behavioral health workforce shortage that existed before COVID has become significantly worse.
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	greater flexibility to remote work possiblities has been realized for the disability community. On the contrasting side, loss of basic social funcitoning has appeared across nearly all age ranges.
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Name	Connie Fitler
Demographic	Family member of an autistic individual
Response
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Name	Coordinated Care Alliance
Demographic	Representative of advocacy organization
Response	Increased remote services does hold promise for individuals with Autism as well as other chronic conditions including mental, behavioral and physical disorders. However, improved reimbursement and availability is paramount to long term success.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response	I was lucky. My son got diagnosed at 22 months in May 2020 and amazingly got some in-person services during lockdown.
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	Disruption in services, and a move to more telehealth services has been a major area of concern with my autistic child. In his case, he does not respond well to telehealth services and disruption of services dis-regulates him. I am grateful for the ability to access telehealth services despite my son, not responding to them as well, however, because it makes it easier to at least access services in times of emergency.
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Name	Crow
Demographic	Autistic individual
Response	Options for remote appointments is good. But only remote can cause problems for people who cant make phone calls or cant speak. Supply chain issues causing problems for people with restrictive needs like specific food, specific medical supplies etc.
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Name	Crystal Neihart
Demographic	Family member of an autistic individual
Response
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Name	Crystle
Demographic	Autistic individual; Family member of an autistic individual
Response	I'm happy to have more tele health options. I'm glad to have less stress on social obligations.
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	The increased access to and acceptance of remote work is almost certainly of most benefit to autistic persons, allowing them to better function in a sensory environment tailored to their needs. A cultural drive to “return to the office” may deprive opportunities for employment for individuals who were previously able to provide labor – an internet connection is much more accessible than a functioning car and a suitable commute. Additionally, forcing autistic people back into the workplace, when remote work was previously feasible, subjects them to sensory environments they can’t control, negatively affecting their capacity to work, and hurting the output of the workforce in aggregate. Hostile social work environments are especially detrimental to autistic people, who struggle with performing the correct body language, and who are not naturally adept at operating within the confines of social hierarchy; these are learned skills that take time and patience to cultivate, and inadequate management structures lead to failures to mediate social conflict – the figure of only 15% of autistic people maintaining steady employment is directly reflective of a near-absence of effective support within the workplace in Western society; autistic people bear nearly the entire brunt of trying to maintain safe, productive workplace relationships, or face chronic unemployment.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response	My adult son developed Autistic Catatonia during the pandemic and is still recovering. All of the day programs in our area are still functioning at minimal capacity due to losing so much staff during the shutdowns. Most clients haven’t been able to return. I have been told there has been a spike in catatonia diagnoses in our area due to the loss of services. My son was severely injured in a day program that reopened at minimal capacity after the pandemic. He has been home with me ever since. Safe options are minimal, and that is inhumane. The high needs community are not properly being represented by your verbally -privileged self-advocates and that needs to be fixed NOW.
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	Telehealth and online programs have been wonderful and should be expanded. In person opportunities are growing, but can be over-rated. Social interactions should be meaningful rather than just more time in a van going from A to B. "Social" needs to be re-examined to include what is meaningful for autistic individuals, not what the general population considers social. Overcoming sensory issues in many public settings makes it not worth participating as the rest of the day becomes a nightmare.
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Name	Cynthia Macluskie, Autism Society of Greater Phoenix
Demographic	Family member of an autistic individual
Response
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Name	Cynthia Tyler
Demographic	Family member of an autistic individual
Response	Remote work actually benefited many disabled individuals and autistic persons. The remote work allowed them to interface and interact in more accessible ways. The disruption of schedules was disastrous, however, as structure and schedules are the backbone of many autism families.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	Simply put, STOP USING COVID-19 AS AN EXCUSE TO NOT DO YOUR JOB.
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Name	Dale
Demographic	Family member of an autistic individual
Response	Many programs for adults with autism have disappeared since Covid. Transportation services have ended in some areas.
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	The most positive effect COVID19 had for autistic people is the restructuring of society to allow autistic people to be in public with things like masks, headphones, sunglasses and hoods up on hoodies. All of these help with sensory issues. There are also more work from home jobs which allow an autistic person to create their own work environment. The negatives include having these accessibilities removed, particularly work from home jobs as many employers feel the need to micromanage. This adds back multiple layers of stress and may result in the person leaving employment or losing employment due to meltdowns. Examples of this include significantly increased social interaction which typically requires masking, increased uncontrollable sounds, fluorescent lighting, close proximity to others, and the commute.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	Negative- disruptions in services, years of waitlists for therapies and treatment that didn’t exist before. Employers attitudes towards parents with children who are disabled has changed for the worse. Theres no longer an ability to balance work and care for severely disabled children. Less resources!
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Name	Dana Haff
Demographic	Autistic individual
Response	I had Medicaid for a while and was granted 40 hours a week of caregiver services. The public health emergency ended, I was removed from Medicaid, and now I have no services. I’ve basically been left to die.
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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
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Name	Dani
Demographic	Autistic individual
Response
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Name	Danica Allen, Educator
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Daniele Armstrong
Demographic	Autistic individual; Family member of an autistic individual
Response
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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	Some people and children found remote or virtual work/learning less anxiety-provoking and were able to switch to jobs or schools where this was more of an option. That is a positive. Some people and children had increased anxiety during COVID and due to the isolation did not leave the house, which reduced their social interactions and actually heightened their anxiety so they are still living in an isolated state.
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Name	Danielle Mays
Demographic	Family member of an autistic individual
Response
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Name	Danielle Terrell
Demographic	Service provider, health provider, or educator; Other
Response	Disruptions in services, switch to virtual modalities/tele-health, changes in routines, regression, agoraphobic thoughts and/or behaviors. I have a client who was diagnosed with PANDAS as a child, and developed OCD. Their OCD was described as moderate, and they was able to manage his OCD and live a routine life, attend school, social events etc. Since getting the COVID vaccine, and tested positive for COVID there was been a significant spike in their behaviors and OCD tendencies, increase in agoraphobia, and limited social interactions due to heightened anxiety, multiple hospitalizations, denied access to services, financial burdens on the family. Health and safety risks for the autistic person and their family.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Less trust, less freedom, more judgement from society and newspapers which is very unfair and increased anxieties and stresses with schools, parents, exams, work, people not understanding fears over germs/virus and isses it has on disabled community
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	remote appointments with providers that do not capture the individual
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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	Disruption in services
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	Staff stopped working with individuals during covid and staffing has never recovered. People can make more money at mcdonalds. remote education doesn’t work in autism. totally ineffective. no day programs available for my son who has aged out of school and is sitting home doing nothing.
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response	On the up side - Remote work has been life changing in so many positive ways. It gives me the opportunity to better manage my epilepsy and do so more responsibly. It allows me to control how much human interaction I am required to have. My institutional trust has been devastated by half of the government showing that they are nudging genocidal by minimizing the deaths of millions of americans because they weren't "The right kind" I feel less safe in public. Particularly when masking. I experience belligerence and denial of access to some businesses because I am wearing a mask, and folks only care because it got politicized by losers. I feel as though the actions of the government during covid emboldened the worst of our society, and I look back at the folks Nazi's started killing and I check more than one of those boxes. The government's complete failure in these matters has worsened my life immeasurably and killed millions. The psychological and social impact of these things cannot be overstated. It is the responsibility of elected officials to act like adults. Their failure to do so endangered and killed millions.
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Name	David
Demographic	Autistic individual
Response	I was working remotely before. Less socializing work of otherwise, was actually easier for me.
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	Stopped working due to COVID-19 and never got reemployed Remains at home 24/7
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	All types of intervention needs to be individualized. For each improvement in response to Covid and the current culture, there may be an equal and opposite set of disadvantages. For example use of gaming as a reward or stress reduction technique can lead to a dependency that is counter productive.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response	None for us.
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Name	David McWaters
Demographic	Family member of an autistic individual
Response
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Name	Dawn Werner
Demographic	Family member of an autistic individual
Response
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Name	Day, Autistic, ADHD, Dyslexia,and co
Demographic	Autistic individual; Representative of advocacy organization; Other
Response	people are more aware of their health so, make it safer for me and mine, i was forced to mask less so now i can breath, triggered my tics are more noticeable and paralysis worsen
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response	It was good when social stuff like church and also appointments were online but as soon as Covid was done they went back to face to face and autistic people were excluded again. Need the choice of online or face to face.
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Reduced person to person interactions
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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	He is still very isolated and unable to work or have an interesting full life.
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response	Negative. Programs like Kennedy Collective have greatly reduced the number of program locations following COVID shutdown. My son's autism school Giant Steps School closed permanently because of COVID. Far fewer day program opportunities & many do not accept participants who need 1:1 support. Hours of operation for day programs are shorter. My son does not have transportation to his program in Wallingford. We live in Milford.
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Name	Delia Ruiz
Demographic	Family member of an autistic individual
Response
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Name	Deon
Demographic	Autistic individual
Response	Increased isolation as a result of more remote interactions. Decreased tolerance for sensory input. Increased emotional overstimulation due to more time spent online
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	ability to do remote work and therapy
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response	reduce in person social interactions and obligations
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Name	Dongmei Li
Demographic	Other
Response
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Name	Donna Costello, Private practice. Retired from public school as school psychologist working with students K - 12 with what was formerly known as Asperger’s
Demographic	Service provider, health provider, or educator
Response	Reduced in-person social interactions - although social communication is an area of deficit, there was an expectation that the AS individual had to be around others and required them to rise to the occasion ( so to speak). The isolation resulted in a loss of social communication skills due to lack of opportunity for something that was difficult to deal with, making it easier to opt out and stay alone. I noted lots of deterioration. I worked with a group of 8 students/ families from K - 12 and college. I still am in communication with some of them.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	Social changes related to reduced in-person social interactions exacerbated isolation for autistic individuals. Making the transition back to being socially engaged is a challenge and in some instances caused a setback of gains previously made for autistic individuals. The impact of being in isolation has also caused increased anxiety and depression as autistic individuals readjust and navigate their environment.
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response	thankfully, my son School realized that zoom didn’t work for him and brought him and a few other kids back in person while keeping the majority of kids online. Now most things seem back to pre-covid.
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Name	Doreene Donald
Demographic	Family member of an autistic individual
Response
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Name	Dr Christopher Pyne and Holly Swan, Parents
Demographic	Family member of an autistic individual
Response	Our son cannot easily sit still so he could not really participate in virtual learning. And would add his hard earned skills regressed.
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	For many autistic people, COVID-19 was a turning point in one way or another. For some people, the loss of existing structure and supports was terribly difficult and resulted in losses in functioning. For older autistic people with fewer support needs, the increase in access to telehealth and reduced in-person requirements. Many of my clients have thrived with remote work.
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Name	Dr. Autumn Dae Miller
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	I'll answer just as an Autistic person and not with my professional hat on. I'm tired of people PRETENDING that actions that taken during pandemic and as part of the ongoing COVID19 effects were JUST because of a virus. A huge part of the last few years of our lives is that we also realized that: black lives STILL didn't matter and they MUST, people only value helping professions because they don't want to DEAL with the messiness of humanity themselves, that wars are happening and our country is too stubborn to care about any other humans unless it directly benefits them or makes for a great social media campaign, that people still do not believe WE are having a negative impact on the health of our planet, and that disability as a whole is a social construct where someone is only DIS-abled because society doesn't accept, adapt, and appreciate the all-natural variety of humanity. The worst part during COVID-19 is that we learned large parts of our country HATE anything that is different. I'm different. I've always been different. I thought that was a STRENGTH in this world but so many people said no, we hate you because of that and all your other identities. THIS is what affects my MH, my physical health, and the health of all the people I love and care about - even those I've yet to meet. Remote work is great; social media is a space where those without microphones in their faces can be recognized, and hate has no place here. Thank you.
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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	For more of my life than not, I have been the bad guy, and it didn’t have to be this way. One of the major findings of my PhD dissertation, about sociosexual ecologies in the algorithmic age, was neuroqueer self-realizations on platforms, like TikTok. This summer, I published books about why there are massive queerness and neurotype (in other words, neuroqueer) self-realizations happening. Within the last 10-15 years research has shown that millions, if not billions, of AFAB (assigned "female" at birth [ideas of "biological sex" and "gender" are built through language usage]) autists have been missed, and the world is still too discriminatory for us to safely be open about our neuroqueernesses. We also have high rates of substance abuse, 9 out of 10 AFAB autists experience sexual violence, and we have exceptionally higher likelihoods of suicidality. Research shows that, especially Black and Brown AFAB folks, are dreadfully undiagnosed, leading to additional discrimination(s) and unemployment. Whether formally diagnosed or not, many autistic individuals are also high risk for significant health complications, including severe (short and long forms of) COVID-19. And, many, likely don't even know it, due to self-advocacy challenges and/or normalized medical gaslighting. Our community is not a hivemind. Many of us, however, have exchanged unprecedented solidarity regarding uncanny similarities during the most connected time in human history, and changed our lives for the better.
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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	Autistic people for the most part have been surprised by the pandemic where non-autistic people were forced to adopt our lifestyle. Social distancing gives up the space to flourish. Zoom calls gives us an opportunity to have realtime captioning. Telehealth gives us an opportunity to be in our sensory friendly space while having a potentially traumatizing encounter with a generic provider.
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	For many autistic people, the disruption of routines, social isolation, and the general uncertainty of the situation (which continues on some level) have contributed to worsening mental health conditions. However, there have also been some positive impacts from these societal changes, especially through revealing preferences/needs related to working from home, becoming more aware of social bandwidth and sensory challenges, and increasing access to neurodiversity-affirming providers through telehealth services.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Everyone in clinical health is exhausted and less patient with us. It's harder to see psychiatrists and neurologists. It's been impossible to get Autism-HEDS diagnosed because of instability in the field. For me, I've become so stressed out that I feel safe mainly at home. The public feels less thoughtful, more hostile, less hopeful, and inconsolable. Positive impact? For a while, the world felt quieter.
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Name	Dulce
Demographic	Autistic individual
Response	Most of the societal impacts caused by COVID-19 have been positive throughout the community since we don't have to be around a lot of people in person. Though in the beginning the disruption of services especially within the medical system was not ideal when it came to needing help with therapy for example.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	Societal changes resulting from the pandemic have both positive and negative impacts on the physical and mental health of autistic individuals. Increased remote work and school might offer flexibility, but disruptions in services and reduced social interactions may pose challenges. Understanding these impacts is crucial for shaping post-pandemic support strategies.
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Name	E.R
Demographic	Family member of an autistic individual
Response
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Name	Elena, Mother
Demographic	Family member of an autistic individual
Response	My son used to have regular weekly in person social gatherings at his local YAI. However, Covid ended that. On-line social meetings have been a lifeline, as have been the few and far between in person gatherings - which I fear may dwindle again if infection rates continue upwards.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	I think that increased remote work, school, and telehealth improved my quality of life drastically. I do not feel much need to go out and do very public events and usually can not handle them anyway. Shifting back to in-person was a much more negative impact on my quality of life because insurance is now fighting me on my doctor's appointments and I am struggling to find work in my field in my area, so shifting away from remote-work really impacted my ability to find a job. My brother, on the other hand, is already limited in how he can get out of the house so removing his in-person services really impacted his quality of life negatively during the pandemic.
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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	Telehealth and telework has been a positive outcome of the pandemic for me as an autistic adult. My psychiatrist’s office had electronics that emitted a high pitched frequency that interrupted my concentration. Now, I can attend my appointments in a comfortable, familiar environment, and our sessions have become more productive.
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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
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	reduced in person social interactions and obligations
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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	The accumulation of stress leading to chronic dysregulation often leads to a greater need for reliability, predictability and management of changing social and environmental experiences- this is theorized as a significant underlying experience in the perceives social and cognitive differences of the autistic individual. While there were opportunities for Autistic individuals to be more accommodated in their differences, such as with flexible telework schedules and use of technology to communicate, there were also sweeping changes in the way day to day life was managed and ambiguity in these experiences that increased unpredictablity and forced change for folks before they may have had ample time to process or adapt. More research is needed to explore the nuances of these experiences of accommodation and adapting to changes and how they impacted Austitic individuals overall.
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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	More remote services and work options is helpful for a lot of folx with autism. Disruption in services is dependent on the state, as many states don't have sufficient or clear resources for autistic individuals.
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased remote work has helped a lot of autistic people. I think things being more accessible online has helped a lot of us as well.
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Name	Ellen
Demographic	Autistic individual
Response	Increase remote work Masks Reduced in-person interactions More empathy
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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
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Name	Emilee
Demographic	Autistic individual
Response	Positive: more remote options
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Name	emily
Demographic	Autistic individual
Response	This one i'll also put quite frankly, sirs and madams, and I think you'll catch my drift here: if y'all let us die out like it has seemed might happen, you could be making things worse for yourselves in the long run - I don't think any of you understand that an alternative to dystopia can exist, let alone map out the moving parts necessary for change for sixteen hour stretches at a time. But we both knew that, didn't we?
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Name	Emily
Demographic	Autistic individual
Response	It has all been negative. My work load has increased but my pay has not, and I am burnt out constantly and have had to go to therapy because of it.
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Name	Emily
Demographic	Autistic individual
Response	Telehealth and work from home have been the best things ever. Delivery services are great as well. I don't need constant human interaction to survive like neurotypicals do. I prefer isolation and am better mentally because of it.
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response	The covid pandemic and shutdown was the catalyst that led to us seeking an autism evaluation for our son. The sudden shutdown of school, classes via zoom, the fear of catching and dying from covid, isolation from friends and extended family really caused his mental health and autistic behaviors to worsen and his quality of life hasn’t recovered.
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	To some extent, the increase in remote work has been a positive, which allows me to avoid sensory overloading public transit use more days of the week. There was a period of time, however, in which the increase in online compared to in-person work was incredibly stressful for the amount of screen time required, learning curve involved in learning virtual systems, etc. To some extent I've experienced a relief from financial pressures due to enhanced unemployment benefits available during the pandemic. In both the short and long term, the pandemic has complicated my access to health insurance. Relaxed eligibility requirements, the 6-month federal COBRA subsidy, and short-term bridge plans made available by my union's health and pension fund helped keep me insured for the duration of the pandemic, but impacts on my career field and the finances of our health and pension plan have made our insurance more difficult both to qualify for and to keep.
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	One positive impact Covid-19 had on my son with autism and has his mother is working hard to get him to wear a mask. Imagine having a child that is nonverbal and intellectually disabled be forced to wear a mask or they won’t see your child. The hours upon hours working with my son we were able to have my son wear the mask without displaying challenging behaviors.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response	Disruption of services was hugely impactful to myself and many other autistic individuals during the pandemic. Many of my services paused entirely, and others were not conducive to a telehealth format (for instance, occupational therapy). That said, the increase in the use of telehealth appointments has been very beneficial in the long run. It allows me to attend my appointments without having to overwhelm my sensory system on days when getting out of the house is too overwhelming. I have also heard other autistics who work more traditional office jobs say that they have benefitted greatly from their new ability to work from home.
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Name	Emma
Demographic	Autistic individual
Response	Increased availability of virtual options for healthcare and employment is a good thing.
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I have been lucky that is feels like my social circles have become far more well versed in online communication and online meet ups as a form of socializing - note most of my friends are also disabled and this has opened our worlds up in many ways. While it was nice to see increased accessibility at the start of the pandemic - finally it felt like my own variable ability to attend in person events was being accommodated through online options - I was worried like many people about when this accessibility would end. I did not experience this same flexibility in university or high school settings and it has now felt like people react negatively to being asking if there is a virtual or hybrid option offered. I also really enjoyed masks as it out less pressure on my to preform emotions with the lower half of my face but it has become hard as I now receive increased questions about why I am still masking - despite having individuals in my close friends who are immunocompromised.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	Complete cut off from services during Covid. My son actually had a crisis. I have stated before he ended up in the hospital for 46 days
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Please refer to last answer. But, individuals who are already challenged with social and communication skills, were further hurt after we shut everything down. Also, many with hearing impairment, and other communication impairment rely on reading lips. Masking further disabled and hurt these individuals.
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response	When everyone is inside, it was easier for my spouse to feel less pressure/stimulus when we were to go out of the house. Was also easier to maintain a routine in daily life easier.
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Name	Eugenia Ramsey
Demographic	None Indicated
Response
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	I love tele-health. I dislike people. I was fine with isolation. It didn’t bother me a bit. I do like that some work from home jobs have remained, but there should be more. The idea that overhead or micromanagement is necessary for quality work was proven false. Yet tons of companies are demanding a return to the office. It’s bad for all disabled people (social model or otherwise). This should be addressed with corporations. Remote work could mean less reliance on social security.
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Name	Ewa Omahen, PhD, Retired school psychologist
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Fin Finney
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Untreated long Covid and the exacerbation of existing untreated conditions Lack of health equity programs and lack of development of real plans that involve community collaborators at all levels. Loss of valuable social autonomy. The groups and programing that were once available online too have gone mostly in person with no mask requirements. As someone with multiple conditions and a history of provider bias I am hesitant to raise my risk of experiencing long Covid symptoms when I have seen the real harm it can cause first hand in my community.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	service availability is very important
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	Change of routine, lack of family support, and disruption of service has been difficult for families. Remote therapy and telehealth are a positive alternative but does not work in all cases and cannot be compared to in person treatment.
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response	The reduction of in-person business interactions and obligations has been a massive boon for autistic people, especially when paired with the massive improvements made to online systems during the pandemic. However, the reduction of in-person non-business interaction has made socializing as an autistic person [profanity redacted] near impossible. We live in a country of only work and sleep, there is no joy.
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Name	Freya
Demographic	Family member of an autistic individual
Response	negative impact on routines More ability for carers to work from home and flexibly to be present and support
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	The pandemic taught me that I won't get any help if it gets really bad. And I learned that remote work is possible, but not for individuals with disabilities because nowadays many people want to work from home and people with disabilities are just too much now.
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	we are still seeing a disruption in his services. We are still seeing a huge lack of staffing that has just not been back to what it was before the pandemic.
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	Severe PTSD from being quarantined for a year with little contact with the outside world has given my son increased paranoid delusions of "other people coming to hurt/get him". He regressed in his social skills because this occurred during his senior year in high school, reducing social interactions in-person. He is very anxious and medicated for his anxiety which I believe was exacerbated from being quarantined during BLM protests, the Trump/Biden election, and the insurrection. The inability to decipher what is realistic versus what the news/social media put out is an increasing concern. His paranoid delusions are fueled by the inability to communicate and socialize with peers, accompanied by outrageous claims by social media and news from the fear-mongering used to get "watches", "clicks" and "likes."
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Name	george knoth
Demographic	Family member of an autistic individual
Response	disruption in level of service no opening in group homes to provide 24 hr care or to provide direct care, shortage of staff
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	Social isolation of children. Welcome to my world. I have no empathy towards those people when the message I have always gotten was "deal with it."
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Name	ginamarie
Demographic	Other
Response	the telheath no option good for me - when covids come in no have intrnet so how gonna do that. making big assumps that we ables app on phone to with our differ function levels. services stop and still stop and the or change for less, i less physcial connect to others and i be hard time many things. i feels i be much worse my functions cause of the covids and i live in new jersey - it extreme wonky depend where in state lives for so the call state program resources service cause the limits be no active yet service be state wide program then i be have no helps. lost my case worker - then new one be part time and send me wonky text then ignore me when i ask no text me call me please. etc just hurtful
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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	Doing school at home was very challenging to keep on task. New math for an old grandparent 😱. Talking with a therapist over the phone seemed ok. The child was open, maybe due to not having to look directly at the therapist.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	All of the above were affected! Zoom dr appts, Decided not to pursue Department of vocational Rehabilitation services. On line school & services did not have any benefit for her. Less social interactions
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Name	Grace, Autistic person
Demographic	Autistic individual
Response
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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	On a societal level, one positive is that people who have existed with undiagnosed autism are starting to recognize their need for care and support. The idea that remote work or school is a fix for autistic engagement is rooted in the neurotypical mindset and extreme capitalist values. Just making a job more accessible to someone doesn’t mean working will be any less overstimulating or agonizing for them. Telehealth has been somewhat beneficial; however, the problem remains that nearly 85% of autistics are unemployed, meaning access to services is restricted to those who show extreme disability.
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Name	Greg
Demographic	Autistic individual
Response	Positive to a degree. Work from home is a perfect environment
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Name	Gretchen Stewart, Center for Learner Equity
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response
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Name	H
Demographic	Family member of an autistic individual
Response	Increased used of telehealth and remote school options is something we continue to enjoy and make use of on a regular basis.
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response	Service disruption for those who need structure more than typical age peers
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Name	Heart of Texas Behavioral Health Network
Demographic	Service provider, health provider, or educator
Response
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Name	Heather
Demographic	Autistic individual
Response	I felt more normal because more people are shut ins like me; increased remote work.
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Name	Heather
Demographic	Family member of an autistic individual
Response	Disruption in services
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased remote work I think has made a difference for autistic people seeking jobs because they have been able to get an income while being in a place they feel is safe. I have not personally experienced this, but the community I talk to has said this. I also personally think that social distancing and mask wearing has helped me to feel more comfortable leaving my house and going to crowded areas such as grocery stores.
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Name	Heather
Demographic	Family member of an autistic individual
Response
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Name	Heather Bourne
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased remote work and school. VERY hard to activate to do things in person when remote is less of an emotionsla and cognitive demand-- but SO much less enriching. My daughter has both figuratively and LITERALLY developed mypopia during the pandemic.
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Remote learning has been beneficial for some Autistic students. Being able to learn in a more suitable environment is one of the few positives that has come from COVID
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Name	Heather Gray
Demographic	Autistic individual
Response	Going from a more controlled environment back into the work force made me feel like a failure. During COVID, I had time to exist and create a functioning routine for me. Being forced to be in public often and without choice is debilitating.
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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	I think there have been clear benefits and drawbacks from the pandemic in terms of help with autistic people, and these may be quite different depending on individual circumstances. It’s hard to make a generalization. Some kids have thrived remarkably well once remote learning was started and they were finally able to have some relief from systems that were traditionally seen as best practice. Of course, suspension of services for some kids was difficult and lead to possible regression, but to others, it allowed some relief again. Ultimately, I think the effect of the pandemic would need to be clarified on a case by case basis.
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	Negative impact. My daughter needs to be physically present, zoom sessions are useless. Mentally she will never recover from covid.
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	Isolation during Covid caused disruptions in attending workshop sessions and even having visits from parents/guardians. Visits now can be done at anytime, if using the proper PPE equipment.
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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	People should now understand what it feels like to be controlled and isolated against their will like many on the spectrum. One would hope there is some actual empathy that has developed on having to be forced to change to fit the "new model of norms" that autistic face every day!
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Name	Ian Morris
Demographic	Autistic individual
Response	I have discussed COVID-19 with my psychiartist and psychologist. I have monthly sessions with the psychiatrist and weekly sessions with the psychologist. Since I live on disability and spend most days at home, I am not certain how COVID-19 has affected fellow autistics.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	A. Telehealth: Increased access to telehealth has been a significant positive change from the pandemic and has reduced barriers diagnosis and treatment. PAR recommends that the IACC consider looking at ways to protect individual’s access to telehealth services including, but not limited to, advocating for the amendment of 42 CFR § 440.90 to allow for greater flexibility of the practitioner’s and individual’s location. B. Remote Activities: Remote activities have provided flexibility and convenience, but have also decreased face-to-face social interactions, limiting opportunities for individuals to build communication and social skills. C. Program Closures: Many community-based programs that closed during the pandemic are also still closed or are operating at reduced capacity, limiting opportunities for skill development and structured socialization. D. Social Isolation: Disruptions in school, work, and social engagements not only increased social isolation during the pandemic, but also has continued negative effects today. For individuals with tendencies to avoid social situations due to social anxiety, anxiety symptoms have often only increased or intensified after the pandemic.
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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	Disruptions of service and reduced in-person social interactions continue to affect us even after the pandemic. We have yet to recover from the Mental Health impacts. And while some services have increased, it is still very difficult for those of us who were diagnosed as adults to receive supports and services.
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Name	Irene Tanzman, parent/guardian
Demographic	Family member of an autistic individual
Response
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Name	Izabella Pulvermacher, Dental Coordinator Department of Developmental Services
Demographic	Service provider, health provider, or educator
Response
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Name	J Maust, HUB 302
Demographic	Family member of an autistic individual; Other
Response	Positive is availability of telehealth , ability with zoom to now connect in a much broader way.
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Name	J Olson
Demographic	Family member of an autistic individual
Response	Increased acceptance of remote work/school has been both a positive and a negative. It allows parents to better support their child at home when need be (so long as the school is willing to work with the family), but it also exacerbates a lack of social interaction.
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Name	Jack Brownn
Demographic	Autistic individual
Response	Wearing masks is very hard to manage. The sensory sensitivity makes it difficult to wear them although they are a line of defense against COVID.
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Name	Jackie
Demographic	Autistic individual
Response	Disruption in services, isolation. It's lead to some skill regressions and then to be thrown right back into society like nothing has changed has been very triggering and scary.
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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	Telehealth is a major plus in some cases it exposed so many flaws in a very frail service delivery system - the system is now officially broken but it’s an opportunity to fix it. I say to many - now that everyone has had to isolate they have an idea of what life living with a profoundly autistic person is like - we never go anywhere crowded - we are home more than not - it was hard to believe our world could be any smaller Many of our guys like my son did not do well with virtual stuff but many did.
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Name	Jaime
Demographic	Family member of an autistic individual
Response	Disruptions in crucial services. Scheduling conflicts with doctor visits. Limited availability to live personnel and the increased reliability to remote resources.
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Name	James V. Bradley
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	James Weingardt
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Increased use of computers, reduced sleep.
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	We have no workers to help care for our kids and governments do not seem to grasp the need and complete desperation of our families.
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	NA
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Name	Jana Young
Demographic	Family member of an autistic individual
Response	Massive increase in childhood anxiety, particularly in my son’s grade 2 cohort… the number of neurodivergent diagnoses at his school ballooned for his age group, which started kindergarten during the pandemic
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Name	Jane Horn
Demographic	Family member of an autistic individual; Other
Response
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Name	Jane Roberts, University of South Carolina
Demographic	Researcher
Response
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Name	Jane Seymour
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Jane, County AE
Demographic	Other
Response
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Name	Janet Callahan
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Disrupted services have not been un-disrupted, which is a problem. Virtual schooling is not good for everyone, nor are telehealth appointments. Increased remote work has been good for me as an autistic adult. It's been good for my kids because I am here and can step in when things are not going well no matter what time of day it is. On the whole, though, I think it's mostly been negative.
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	The COVID shutdown has had a devastating impact on programs serving individuals with autism and intellectual disability. Many programs were unable to keep staff during the pandemic and closed their doors, leaving many adults isolated with little or no access to day services or community engagement. An already severe shortage of direct support professionals has become even more dire, and many individuals who ostensibly have waiver supports cannot get those supports because there simply are no DSPs or personal assistants or job coaches to provide those services. This is sometimes referred to the “shadow wait list,” as these people are enrolled in waiver programs, but they aren’t being served. While the increased use of remote work has helped some autistic individuals and their families, for many families, remote school was a nightmare, and their children lost enormous ground. The disruptions to child care programs, and now the loss of pandemic funding to help stabilize them, has exacerbated the huge issue of finding appropriate child care for autistic children and teens for working families. The federal government should take action to facilitate the use of telehealth across state lines. At this time, many areas are not served by autism specialists, and telehealth can provide access to many more people. However, while many autistic individuals can benefit from telehealth, for many others, virtual options simply do not work, and telehealth cannot be seen as a panacea.
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Name	Janice
Demographic	Family member of an autistic individual
Response	Remote college classes have been a good thing for her. It decreases the anxiety and since she doesn’t drive requires less coordination to get her there. However she does better with the structure of a zoom class vs pure online go at your own pace class.
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response	The availability of telehealth has been helpful.
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Name	Jared Goodrich
Demographic	Autistic individual
Response	Telehalth has been so useful
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Deaths, changes at work and then layoffs, refusal and reversal of accommodations, exploitation and scams, people seem more greedy / mean / selfish / violent, reduced interactions, widespread depression / anxiety / fatigue, no meaning or purpose.
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	I would say similar to non-autistic individuals.
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response	Increase use of Telehealth
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic children had their routines thrown off completely and suddenly which put a pause on learning. They also struggled with remote learning.
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	The reduced in person social interactions and obligations have been a reset for my nervous system. Making health/store systems more accessible to disabled people has been one of the positive outcomes of social changes post COVID-19. Being able to do pick up orders and avoiding the dreadful overstimulating stores has been helpful.
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Name	Jeffrey Poms
Demographic	Autistic individual
Response
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	I really need Human contact and the China Plague prevented that.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response	I see this is the last question, so let me take this opportunity to say that these questions are ridiculous. You're asking me to describe the entire autistic community, even though that's literally the job of the research you're wanting me to comment on. Furthermore, these questions betray a fundamental lack of a modern understanding of autism. Spend some time on online forums where autistic adults share experiences and further their understanding of themselves. You'll quickly see how far ahead of your studies we are. We still need the scientific rigor, but wow, you all have fallen behind even the most obvious of areas.
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	During quarantine in the pandemic the remote work and a remote doctor appointments were a lifesaver, but we have begun making a shift away from that because able-bodied people are able to and it's better for company's bottom line.
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Name	Jemima J
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Positives: Parents/ caregivers became more proactive in the child's life/ more aware of their functioning and needs. Perhaps even more creative in meeting these needs without access to regular facilities. Negatives: Disruption in services vital for them/ disruption in play opportunities and avenues for socialization.
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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	Telehealth has been a wonderful tool that allows appointments to occur, which we would otherwise have had to cancel due to behavior issues. The disruption in services during COVID definitely derailed things. My son has become used to sitting at home and it is a struggle to get him back into any type of routine.
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Name	Jenn
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jenn Raley Miller, Parent
Demographic	Other
Response
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Name	Jennifer Colberg, Grandma
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Disruption in services and no attempt to make them up
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Name	Jennifer Higgins
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jennifer Proffitt , Parent and Teacher
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Reduced rigorous educational activity, disruption in therapy services, disruption in regular schedules which is a huge deal for people on the spectrum, reduction and social opportunities for them to grow and learn.
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	The reduced in-person social interactions hurt the most. Most children on the spectrum regress when they are not consistently in their schedule. Taking them out of their "known plan" upsets and possibly scares them. They cannot take change. Aside from a known schedule, they need interaction with others. My son needs interaction with others. The daily interactions with his peers, teachers, and staff members at the school help him grow and learn.
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response	COVID-19 has made it more difficult to retain talented staff to maintain the services that my son requires in order to live in the community. He has been through 5 care coordinators since 2020, and this is a low number compared to some of my friends and their family members. I am pleased with the increased access to Telehealth services as it does make it easier to attend services and medical appointments. This has eliminated the need to travel from work to home to get my son, then travel to his appointment and then back again. Telehealth means that I can attend from work and my son can attend from home with the support of his paid staff member.
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	positive- people are more aware of diversity and needs in adults negative - children are under more pressure to catch up and school is seen as a cure for everything
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	Positive for a short while was the access to remote work, but as the society continues to gaslight and remove access to remote work and access to public spaces with out covid precautions we are again entering the age of the ugly laws returning. The understanding that our systems are not meant to protect us.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	As I stated in the last answer, POSITIVE impacts: MORE telehealth, MORE remote work and school (MY kids THRIVED during the school shutdowns and hated to have to go back to the classrooms!), LESS social interactions and obligations is ALWAYS a good thing for us, because we see those things as AWFUL, not enjoyable.
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Name	Jesse Scott
Demographic	Autistic individual
Response	Positive impacts: Increased telehealth access has benefitted some by improving continuity of care during isolation through virtual appointments/ services. Work/school accommodations allowing remote participation have enhanced inclusion for individuals whose incontinence may be exacerbated by traditional in-person settings. Reduced social/sensory obligations gave respite to exhausted caretakers and those whose mental health relies on low-pressure environments. Potential negative impacts: Prolonged isolation has worsened anxiety/ depression for individuals reliant on community support systems and face-to-face interaction. Disruptions in daily routines and structure removed important coping mechanisms and management support for physical health conditions. Transition challenges reacclimating to pre-pandemic expectations have taken both physical and emotional tolls, especially without adequate accommodations.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	Personally, I’m more socially isolated. My husband is military and they stopped all the wives groups during COVID. I haven’t been able to rejoin and making friends post COVID is somehow more nightmarish than before. I like telehealth. Now when I’m ignored at least I’m at home in my pjs. Plus I don’t have to deal with people. I just really wish I could make friends and that there were things to do. Lots of businesses shut down. As far as services go… what services? There are no services for adults. If they did exist they are so difficult to access that someone with a nervous system disability won’t have to capacity or desire to obtain them which is a huge barrier to care.
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Name	Jessica Bearden
Demographic	Service provider, health provider, or educator
Response
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Name	Jessica Blackmon, Just an ADHD dyslexic autistic girl
Demographic	Autistic individual
Response	We definitely reduce social interaction and obligations due to the fact that that was something that helped motivate me to be on time and get things done because I had to physically be there in the breakdown of routine was devastating because my loss of time became so bad that several days I wouldn't realize that it could be 8:00 at night and yet it was only one in the afternoon to me there is nights that I would stay up until 4:00 in the morning because I didn't realize that it was 4:00 in the morning for me and my brain even though I woke up at 9:00 in the morning it was still 7:00 in the afternoon so now I have days where I would wake up before my alarm for work just because I'm terrified that I might miss work and get in trouble I have to set an alarm for even more things than I did before so I can have some reassurance that I am not feeling at my job because I can't afford to lose it.
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Name	Jessica Iverson
Demographic	Autistic individual
Response	COVID-19 caused increased isolation and worsened mental health in autistic people more than the average person especially due to difficulty adapting and lack of access to supports, consistent schedule, access to healthcare, and medication shortages.
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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	See response to previous question. The medical community's decision to abandon Covid precautions has led to some autistic people being unable to access needed care. We can do better.
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response	My son has regressed in what he has learned when time has been off and unable to receive support
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Name	Jessica Smith
Demographic	Autistic individual
Response	i just like not always having to go in person. I wish there were more text services so i didn't have to call in or talk over skype (its strange and an invasion of privacy) i also dont like being precieved so having to be on camera, without a script, is horrid. there should be more remote work, more work done from home. ike no one really needs to be in the office and going to the office having to deal with a toxic work environment is not healthy for anyone. most if not all jobs can really be done from home and forcing us to go back into work is a living hell and causes a lot of issues. also school can be done from home as well, i get doing a test on site, but school work. like i learn better on my own anyway. i like having a teacher there for questions but id rather self study than listen to a teacher drone on for hours. plus student to teacher ratio is always off so in a classroom theres no time to ask questions and we usually get made fun of if we do, so id rather just type it to my teacher and get help that way then when they answer my question go back to independent study.
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	we stopped wearing masks. i dont care i kept getting myself sick. i didnt have to express my thoughts or feelings on my face. now i have to AGAIN its annoying. the incress remote school given i got into the right one isn't fully negative. showed me their were other options i could do. for a long time i couldn't see my friends, even after the "dust settled" due to their being a stigma around having flu or covid like syptoms. (which i have year around due to allergies)
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The Covid shutdowns have had a lasting devastating impact on programs serving individuals with severe and profound autism. Many programs, particularly those serving high-needs adults, have shuttered, leaving many adults almost completely isolated with no access to day habilitation or community engagement. We also believe that the federal government should take action to facilitate the use of tele-health across state lines. At this time, many regions are not served by autism specialists and their only hope for reasonable treatment access is through tele-health.
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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	reduced in-person social interactions and obligations
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response	Negative: Disruption in social learning via the virtual model.
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Postive: Remote work Telehealth Online scheduling Reduced unessesary social obligations No contact deliveries Negative: Denied access to safe and prefered or established providers due to covid scheduling
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Name	Joanna
Demographic	Family member of an autistic individual
Response	Assessments through OT on NHS were done via phone call and the outcome was underwhelming and very poor . May aswell have not bothered .
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Name	Joanne Miller
Demographic	Service provider, health provider, or educator
Response
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Name	Joanne Van Hoosear
Demographic	Autistic individual; Family member of an autistic individual
Response	A positive for autistic people is the greater availability of remote work, schooling, health care, etc.
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Name	Jobless autistic
Demographic	Autistic individual
Response	My final year of high school was disrupted, and so was my graduation. I had so many plans that year that never got a do-over because of covid-19 and it was really hard for me because that was my plan/ schedule! I also unmasked my autism while at home and now I struggle to put the mask back on. In some ways I don't even think I can mask again.
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Name	Jody McCormick
Demographic	Autistic individual
Response
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Name	joe valenti, parent advocate
Demographic	Other
Response	I believe individuals have become more isolated. I also feel it highlighted the significant staff shortages in the provider area.
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response	Reduced in-person requirements & fewer large meetings have resulted in a much lower stress level for me. Also, the emerging community of ADHD-Autistics that has grown on TikTok/Instagram would not have exploded without the impacts of the pandemic. There so many of us undiagnosed autistics who benefited from the additional time & space at home to genuinely evaluate ourselves & our interactions with others, leading to discovery of our condition, and allowing us to seek diagnosis & therapy. Without the pandemic, I would probably still be a burned out underperformer at work and in my relationships.
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	Need research on what lasting impacts these changes have had! Families of people with profound autism have experienced loss of income, restriction of activities/movement as they care for their loved one at home due to loss of services and programs. Research on families, higher rates of mental health issues for family members. Research on profound autism is urgently needed to answer all the questions asked in this request for comments.
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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
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Name	John Yacks Jr.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I can't ever be the same. What semblance of normalcy I have now is really the only thing keeping me from destroying myself. It would wreck my soul to have to go through that again.
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	Telehealth and access to virtual appointments have been some positive impacts that the pandemic had on the physical and mental health of autistic people. Unfortunately, a lot of people like me never recovered from the disruption to supports and services that occurred during the pandemic. I depended on those supports to be a part of my school and neighborhood community and their disruptions put me further behind, both socially and academically, compared to my neurotypical peers. The reduced in-person social interactions made me feel even more socially isolated and hampered my ability to develop my social skills, skills that I need to depend on to navigate my community as a youth and that I need to develop. My depression and anxiety increased, and I never returned to the levels that I was before the pandemic.
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Name	Jonni Jordyn
Demographic	Autistic individual
Response	Although I had been noticing personal traits that were on lists of autism symptoms for decades, the quarantine period freed me to start questioning these with my therapist. As a well compensated technologist, I was able to perform all my duties remotely. I never suffered the shut-in symptoms that others have, possibly because I'm less social, in which case autism was a boon.
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Loneliness
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	My son started school post covid
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Name	Joye, service coordinator in HCS program
Demographic	Service provider, health provider, or educator
Response
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Name	Jude
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	more pressure on the 77 yr old autistic man of my references here apply to there being less empathy and understanding, less professional ability and time, and money within the mental health systems and social services here -- which of course are under huge ongoing pressure - to grasp the severity of autism for older people -- at least in my case for my 77 yr old partner whose brain -- like mine -- continues to deteriorate...AND THANK YOU ALL FOR CARING ENOUGH TO BE DOING ANY OF THIS IN THE DOMINANT POLITICAL SYSTEM FOR WHICH LOVE AND CARING OR ITS LACK -- COUNT FOR ANYTHING
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Name	Judith Ursitti, Profound Autism Alliance
Demographic	Representative of advocacy organization
Response
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Name	Judy Stoltz
Demographic	Family member of an autistic individual
Response	All of the above were an issue My son Had severe self injurious behavior with no social or physical stimulation Since starting to use SPELLING BOARDS, (only one yr ago) he has not yet spoken of his mental health, but he is no longer self injurious
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	The ongoing COVID-19 pandemic -as well as policies implemented to mitigate it- have had enormous impacts on autistic people for both good and ill. For example, the continuous coverage provisions authorized by the Families First Coronavirus Response Act enabled autistic people to maintain access to health care and services, and its expiration caused many autistic people to lose coverage. Provisions of the HCBS Settings Rule relating to community integration were delayed, which further heightened social isolation for those in congregate settings, while service disruptions put autistic people at further risk of institutionalization or reinstitutionalization. The provider shortage—while exacerbated by the pandemic—predates COVID-19 and must be addressed as a longstanding and systemic issue. In order for autistic people to receive higher quality care, direct support providers must be paid a livable wage, receive adequate training, & be free from workplace racism, sexism, & xenophobia. Increased use of and support for telehealth has expanded access to mental health providers and specialists, including for those who need specialist care that is not readily available locally. Efforts to preserve telehealth availability should ensure that they are and remain accessible for autistic individuals, particularly those with intellectual or communication disabilities.
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response	Positive effects include more access and acceptance of remote meetings, acceptance of being germ-conscious, increased awareness of distance-learning opportunities, increased opportunities to work from home, and access to telehealth appointments. Negative effects include isolation, increased mental stress, and having to learn and navigate a new set of societal rules. An effect that has both positive and negative effects is the loss in masking skills.
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	For my family the most significant ramification has been the diagnosis of long Covid for my spouse. This affects the entire family and inhibits professional/work—not to mention lack of energy as a parent.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The lasting negative impacts of increased remote work and school...rolls down to IPSE programs for young adults. The move to remote classes after COVID puts individuals with autism in a format that goes against their need to learn social behaviors as adults. Reducing everything that goes into being a successful member of society - including good hygiene practices, communication practice, interpersonal relationship practice, and beyond.
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response	I cannot give a fully informed response to this question.
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Name	K
Demographic	Autistic individual; Researcher
Response	The impacts of COVID on society were mixed. Increased remote work and school could increase social isolation and negatively impact social skills, but they were also less cognitively demanding for many autistic individuals. Remote participation involves less sensory overstimulation, less need to cope with changes and transitions, and no need to worry about driving or managing public transportation. Similarly, increased telehealth expanded healthcare access. Many autistic people also find it easier to communicate through mediums such as emails than in-person conversations. Fewer in-person social demands also allows autistic people to interact on their own timeline and avoid overwhelming environments. More online social events could increase community inclusion and socialization. However, those who cannot reliably access or use the internet well may be more severely negatively impacted. Finally, disruptions in services are always a major problem.
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Name	K
Demographic	Autistic individual
Response	I’ve loved the increased availability of remote work. It doesn’t always work for me, I need to be in a physically different place I associate with getting work done, and my home doesn’t really have that mindset. However I love that it is an option. Some days when I can’t make myself get out of bed, it’s easier to convince myself to do my work remotely then geting up and doing my get ready tasks. However, I found that the inability to rely on services, due to unresolved understaffing from poor management during COVID, is increasingly frustrating. That needs to be addressed immediately. Covid allowed a lot of people already in power to take advantage of it. And it’s not okay.
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Name	K
Demographic	Autistic individual
Response	I think it sucks that remote work was only offered temporarily despite the fact productivity didn't decrease while people worked from home and allowed them to save time and money commuting. Telehealth is still available but now certain medications are not allowed to be prescribed via telehealth. These services were temporary and taken away so people could go back to micomanaging every aspect of our lives even though it doesn't improve productivity or morale or save money. I think things were better when we all had to wear masks and stay six feet apart and the rules were all black and white. Now it's mask if you want to and try to stay away if you have flu like symptoms but there are no actual rules.
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Name	K
Demographic	Autistic individual
Response
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Name	Kaalyn
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Truncated this answer with the response to the last one
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote services /telehealth was a positive change. Destabilizing responsibilities and accountability (financial, educational), inflation of medical and professional costs, increase in unsafe behaviors (dopamine seeking), stress in overall state of economic collapse and societal instability due to COVID was a huge negative impact for the autistic community.
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Name	Kaela
Demographic	Autistic individual
Response
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Name	Kai
Demographic	Autistic individual
Response	Useful! Much less in person interaction required. I can order groceries online, I can wear a physical mask more so I don't have to think about my facial expressions so much. People respect personal space more
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Name	Kai C.
Demographic	Autistic individual
Response	Increased remote work. Decreased incentive to socialize in situations where I’m uncomfortable. Less talking to strangers. Increased boundaries in my general life being respected by more people as to where they were barely respected previously. Now I don’t have to worry about strangers in the super market putting their hands on me. I don’t have to worry about people walking up to me and harassing me for “looking weird” or “looking tired” as much.
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Name	Kaisi rolfe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Karen
Demographic	Family member of an autistic individual; Other
Response
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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	Options for home-schooling greatly improved. This individual learning could be augmented but group activities for small groups of home-schooled children with autism, in person play groups or discussion and activity groups for older students.
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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	regression
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Name	Karen Gee
Demographic	Family member of an autistic individual
Response	Affected their group sessions which is sometimes the only in person contact they had.
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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	interruption of services, lack of socialization, tremendous regression being home 2.5 years.
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response	Telehealth services for this population are minimally effective, as a whole. Since COVID, with staffing shortages, sometimes telehealth is the only thing being offered. This is not effective or adequate for many of the individuals on the spectrum. The overall lack of staffing and long wait lists were bad before COVID but are significantly worse since COVID, with no end or solution in sight.
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	There are still disruption in services such as day habilitation and significant reduction in ability to hire. Wages are increasing in other sectors syphoning off good personnel that we could previously hire. Individuals who are in self-directed waiver services, those using agencies for care needs and agencies that operate day habilitation centers are all vying for the same workers and all are having grave difficulty in hiring. Wages need to be increased through Medicaid waiver programs.
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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	Many people report positive outcomes around use of telehealth and remote engagement as normative (or at least more available); we need to ensure those remain available and covered by funding entities, especially for those who have other challenges to using in-person only services. More research is needed (and being done) on when and for whom and for what services telehealth leads to equal outcomes.
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Name	Karey
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Kari Johnson
Demographic	Autistic individual
Response	The cost of living crisis and being denied disability even though I can't work has caused me to become suicidal at times and feel like what little life I'm capable of might not be worth it. I like being able to have telehealth appointments.
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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	More acceptance in not showing up. More mental health acceptance in societal norms.
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Name	Karoline Moxham
Demographic	Family member of an autistic individual
Response
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Name	Kat
Demographic	Family member of an autistic individual
Response
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Name	Kate D
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I believe the increase in remote work and health options has been positive and helpful for autistics
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Name	Katelyn
Demographic	Autistic individual
Response	I haven't been able to reap the benefits of the things mentioned above.
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	We were fortunate that some of our son's usual people came to our home dinner the pandemic. This was valuable. Other changes in routine were very painful. Work skill training came to a halt
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Name	Kathleen Walker
Demographic	Autistic individual
Response	Remote work and the increased availability of telehealth have been helpful for me. The reduced demand on my energy and having access to therapy via telehealth have contributed to a big improvement in my mental health. However, I feel that the COVID-19 pandemic revealed longstanding ableism in our health care and public health systems, and that has been detrimental for the mental health of disabled people overall. For example, policies that prioritized "getting back to normal" while downplaying the importance of protecting others sent the message that disabled people's health is less valuable. Since many autistic people have co-occurring conditions this messaging hit close to home.
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Name	Katie
Demographic	Autistic individual
Response	Burnout from going back after a break. I miss the flexibility of working from home and going in. I now feel like I’m always burnt out and overstimulated. It’s like I notice my autism more now because I stopped training for a year.
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Name	Katie
Demographic	Autistic individual; Family member of an autistic individual
Response	I really love working from home and using telehealth. It's much easier than going into public spaces. Even grocery ordering saves me a meltdown.
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response	See comment on previous question regarding work from home.
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Telehealth access has been a godsend, and remote school has been so helpful for our family to help reduce burnout in our child. It makes me sad to see so many beneficial policies of COVID be aggressively rolled back, like remote work.
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response	The lack of a need to interact in person for most jobs due to working from home can be helpful for those who have trouble with socialization.
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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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	Increased isolation; emotional dysregulation; lack of community connection could lead to worsening mental health conditions; remote services often offered first/ more available even when that’s not what is best for the individual; increased sensory issues
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Name	Kelley, parent
Demographic	Family member of an autistic individual
Response
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Name	Kelli
Demographic	Autistic individual
Response	Positive changes. Working from home has been life changing and helped quality of life so much. Much less anxiety about work. Like the not interacting with people as much and having to mask all the time is wonderful. I can take my time and make the work day how i want it to be. Don't worry about getting sick as much in the office.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response	My son's therapies were disrupted and his therapists were changed due to fear of cross-contamination of some kind. My son had a huge problem with the masks, as they block out social cues on somebody's face. It took him over 6 months to finally wear one but returning to school without the virus completely under control and having to go to school with a mask, started the ball rolling for me to completely withdraw him and homeschool.
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	Disruption in services Availability of telehealth, sometimes good, sometimes bad but available. Learning loss Job and skill losses Staff shortages and loss of support. Isolation, decreased social connections Supports systems cut off
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response
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Name	Kelly Tabeling
Demographic	Family member of an autistic individual
Response
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Name	Ken
Demographic	Autistic individual
Response	The COVID-19 pandemic occurred after my retirement, so there was no work related issues. I found telehealth to be awkward, but functional. I prefer in-person visits as long as the doctor and staff understands and respects my autism and treats me accordingly. Reduced in-person social interactions and obligations was a benefit, dramatically lowering my overall anxieties.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	The shift in the American workplace to remote for many technology-based jobs has been an incredible help for me, and people like myself, who get overstimulated in office spaces, who can't relax and focus in those spaces, and who get anxiety being around people. The improvements to telehealth, while modest, are also greatly useful and appreciated.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	I think the main positive changes are more access to online meetings / telehealth appointments (& them being considered more acceptable in general society). The other main impact for our lives was having the time for self reflection which resulted in us realising we are in fact autistic with ADHD, which we weren't cognitively aware of prior to that. We knew we weren't like most other people, just hadn't been able to get to the bottom of it.
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Name	Kerry
Demographic	Family member of an autistic individual
Response	None
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Name	Kerstin Powell
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All negative, disruptions in employment of caregivers leading to more poverty, not to mention the fact that people with special needs individuals in their families are hurting and struggling with basic daily needs. Childcare is a big issue with employment. Public schools are not properly equipped to deal with individuals with autism to begin with.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I think the biggest thing here is the disruption of services, and the slow rebound in getting quality staff back in sufficient numbers to support the population.
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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	Anecdotally, numerous individuals diagnosed with Autism have experienced mental health benefits by being able to work remotely, as well as access health care via a telehealth option. A significant negative impact would be the lack of social skills that young Autistic children were exposed to during the pandemic, and those children now struggle able to integrate into what we would consider a traditional school environment (i.e. lack of social distancing, hugging/handshakes, masks, etc.). Doing school from home allowed students diagnosed with Autism to learn in a more comfortable environment, and many students are struggling with the transition back to more in-person scheduling. More Autistic students and parents are continuing homeschooling, despite schools going back to in-person.
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Name	Keyunna Harris, Caregiver
Demographic	Family member of an autistic individual
Response
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Name	Khalila
Demographic	Autistic individual
Response	Emotional distress over gap between current data and public attitude.
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to more of the world virtually has been a positive impact.
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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	Increased use in telehealth is basically equal to no treatments or therapies. Prolonged remote school has completely negated learning for someone with learning disabilities and is way farther behind than she would be. Societal changes include lost time of in person interactions… making friends and experiencing social gatherings and learning how to interact with people in general.
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response	Given the extreme delays in processing applications for supports and services, along with the shutdown of community based programs, young adults on the spectrum were left even more isolated and in turn more depressed
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Academics were completely stopped for a period. My son was unable to attend school. He was unable to learn via telehealth models that were tried therefore, they disruption and services increased remote schooling an increased use of telehealth all affected him significantly
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Being able to work at home
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	If you look at the impacts of social isolation and discontinuation of services during COVID on typically developing kids, multiply that by 10x. How do you explain to a profoundly autistic individual with ID/DD that they have to stay in your home, no more access to the activities they relied on for support, development. These individuals required 24/7 care -- and families were left bearing the total burden and stress of that during COVID.
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response	Disrupted schedule changes
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	In my experience the changes brought about by the pandemic are the realization that we can be so accommodating for individuals who have social differences and challenges, offering zoom connections and digital schooling (which was a highlight for my autistic child who no longer had expectations held over him related to eye contact, fidgeting, or doodling), but then increasingly rolling those options for digital interactions back with an attempt to “return to normalcy”. It reverses everything the pandemic showcased about disparity for social demands autistics face. I do think a positive that came out of it are the agencies that have offered more flexible, at home career options. And some are understanding of the increased need for sick and personal time.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	That virtual services are possible - this needs to be an automatic accommodation permanently offered
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Name	Kylie
Demographic	Family member of an autistic individual
Response	Definitely disruption in services and societal changes. Anxiety has increased as a result of not being able to go to school. Covid really had a set back for us as socialisation was already hard and it has exacerbated greatly since lockdown.
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Name	Kym Pettitt
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	L. Void
Demographic	Autistic individual
Response	I felt safer on the roads with less drivers. Working remotely was amazing and the only way I want to work. Access to telehealth services increased and helped me see more doctors & therapists on a more proactive basis.
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Laura
Demographic	Autistic individual
Response
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Name	Laura
Demographic	Autistic individual; Family member of an autistic individual
Response	One of the best things to come out of Covid was curbside grocery pickup and grocery delivery. I wish more virtual health services were still offered. I shouldn’t have to physically go into a doctor’s office to get an antibiotic.
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	The process for finding appropriate help is difficult anyway. But, COVID made it that much harder. For my son, in-person meetings/appointments are the most effective.
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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	As said previously, we attempt to be as diligent as possible to avoid infection, because it is much more difficult to care for someone who is unable to articulate what is wrong. It causes us to reduce the amount of time in the community, and we are able to work on social goals less often as a result. My daughter cannot do her ABA therapy over the computer, so there is an increased risk of infection by allowing multiple therapists into our home.
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Name	Laura Mewbourn
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Laura Saenz
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote school should be an ongoing option for all. When someone doesn’t feel well, they can do on line school. It would be helpful when my autistic daughter is disregulated. Sending her to “power through” at school is just cruel. She’s in emotional and even physical pain.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	Access to support being delayed.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response	Lack of services during the pandemic, for servers cases online school don’t work,
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	The increased use of telehealth services and normalization of remote work and school options have had a positive impact, along with the reduction of in-person social events. In an academic context, recorded lectures, flexibility with attendance, and increased teacher empathy for absences and accommodations also represent positive change. However, I believe that an uneven and unspoken, but still insidious pressure to transition back to “regular” life, despite the realities of the pandemic still persisting, creates a lot of negative stress even with the increased accessibility options brought about by remote work and school.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive - work remotely is great! Negative - video conferencing is so exhausting for autistic people
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	In general, we would also highly recommend referencing “Educating Children with Autism” which has clinically researched interventions for effectiveness. We also highly recommend the NIH National Center for Complementary and Integrative Health as the NIH found almost 81% of families of children with autism used alternative medicine. We would also suggest consulting with the AAP (American Academy of Pediatrics) clinical guidelines and policy statements as they relate to autism. For example, AAP cites the dangerousness of chelation for autism, or that gluten/casein-free diets do not cure autism but may be helpful in identifying food allergies only.
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The pandemic has allowed many Autsitic folks to work from home and be virtual that has increased accommodations for many folks. During the height of the pandemic, much of health care was also accessible virtually, though that has been decreased and causes serious set backs for folks with multiple mental and physical distress.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response	During the pandemic remote schooling had a very severe negative impact on my austistic daughter as the ciriculum changed and the online classes were unable to affectivly keep her interest . The lack of a support person and in person learning interaction also negativly affected her . Reduced in person social interactions and obligation are a lasting negative affect During the pandemic she did not have to interact with her peers , she did not have to keep a rigorous schedule (get ready , eat, breakfast , get on bus, arrive to school ontime) She has since graduated and I believe this has perpertuated the lack of social interactions and obligations
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Longer wait times to get medical care. The healthcare system is crumbling, it is harder to get healthcare needs met. I work in healthcare and the mass exodus of early retirees has led to an extremely stressful work environment. Loss of work-place culture as most meetings are remote/virtual.
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Name	Leanne Maidment
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Leanne-Claire Civiletti
Demographic	Autistic individual; Other
Response	I do like having zoom appointments with medical care. If I know the physician prior and there is a established relationship. Masks and disinfecting which triggers mast cell activation reactions. Challenge. I don’t recognize medical professionals when they don’t have a mask on. I can’t communicate. I can’t recognize the affect or response in a person who is wearing a mask that I don’t know well.
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Name	Lee S.
Demographic	Autistic individual
Response	I personally found the distance between people and the decrease in crowding very positive, however not having the opportunity to distance oneself from family, etc. was difficult. One thing that is a negative consequence is that, while Autistic people would have less contact and hence less need for altering their behaviors and dealing with difficult situations, we also move further out of the culture and so societal norms have changed. This means, when Autistic folks have to re-engage the public, they are now at a significant disadvantage of trying to figure things out as they go, even the older individuals with more experience.
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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	It has further heightened the staffing crisis for DIDD/ECF Choices Waivers. The safety, stability, and security of those with disabilities is disrupted by lack of staff, untrained staff, and constantly revolving staff. Some families are being told to come get their family members because there is no staff available to care for them.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	Disruption in service
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Name	Lesley
Demographic	Family member of an autistic individual
Response
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Name	Leslie
Demographic	Autistic individual
Response
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response	There is now a human services worker shortage that leaves to few day placement programs understaffed s d has created waitlists lasting years for services. We need to train and pay the direct care workers much more for the important work they do and attract them back to this field of work.
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	see previous response
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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	Recent diagnosis, so not sure
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response	Grocery pickup/delivery has been a huge benefit for our family. I no longer have to deal with the anxiety that grocery shopping induces. My child is no longer tempted by all the colorful things, so there is not a subsequent meltdown or PDA response when he is told he cannot have something.
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Name	Linda
Demographic	Family member of an autistic individual
Response
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Name	Linda , parent of adult with autism
Demographic	Family member of an autistic individual
Response	Telehealth has been a positive change. Sometimes you do not need to see a doctor or mental health professional in person and it makes it much easier to access the support needed. In the past those telehealth sessions were not covered by insurance.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	Telehealth has been great
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Name	Linda Jones
Demographic	Family member of an autistic individual
Response
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Name	Linda Kline, DDA SDS Family As Staff Direct Support Staff
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	There is a Head Coach in Washington County Special Olympics that wants my son jabbed so bad with the Covid injection, he refuses to invite him to State Competition using the excuse you aren't injected, well that's nice he don't have to be to participate at state level and that's discrimination and our representatives got an email about this.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	Less large social gatherings is a plus for some people, particularly true of those on the autism spectrum.
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Name	Linda Schepis
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Linda, Parent
Demographic	Family member of an autistic individual
Response	Hard to get help, waiting lists, telehealth has been a benefit bc it’s hard to go places and waiting is always an issue due to hard time waiting.
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Name	Lisa
Demographic	Autistic individual
Response	Positive: remote options, teleheath as these can be accommodating to autistic individuals. Negative: reduced in person interactions have caused many including myself to regress.
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Access to mental health services has been limited here in Indiana with very long wait lists, It seems to be getting better. Telehealth has been great as has remote schooling when ill. He has been sick more this year.
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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	Largely positive but lately I am craving and sealing out more one on one visits in real life not virtual.
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Name	Liv
Demographic	Autistic individual; Family member of an autistic individual
Response	its too expensive to live a life
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Name	Liz
Demographic	Family member of an autistic individual
Response	Staffing issues have changed dramatically since Covid 19,
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The Covid shutdowns have had a lasting devastating impact on programs serving individuals with severe and profound autism. Many programs, particularly those serving high-needs adults, have shuttered, leaving many adults almost completely isolated with no access to day habilitation or community engagement. This also causes their families/caregivers to be isolated and often unable to work. Our program remained open but the costs of hiring and retaining staff with the appropriate skills have skyrocketed and are not adequately reflected in the funding we receive.
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Name	LizC12, Self
Demographic	Autistic individual
Response
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Name	Lori Hogenkamp, Center for Adaptive Stress
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	The COVID-19 pandemic has profoundly impacted the physical and mental health of autistic individuals, highlighting the necessity for neurotype-specific care and a deeper understanding of stress mechanisms. Autistic people's unique responses to stressors like a global health crisis require personalized healthcare approaches, especially considering the varied symptoms and recovery patterns in 'long COVID.' Mentally, the pandemic has intensified stress, anxiety, and isolation, disrupting routines and increasing sensory challenges. This situation calls for a reassessment of mental health support, focusing on interventions tailored to the specific stress response patterns of different neurotypes. The pandemic also presents a chance to reform healthcare systems, emphasizing integrated care models that concurrently address physical and mental health. For the autistic community, strategies informed by the complex interplay of neurotype, stress mechanisms, and environment are crucial. In summary, the lasting effects of COVID-19 on autistic individuals emphasize the need for an ESF-aligned approach in healthcare, focusing on neurotype-specific care to effectively address the unique challenges of this community
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	Loss of direct care workers - even though my daughter is still wait for services, the loss of the direct care workforce and other service providers will probably delay even longer the amount of time we/she waits for the assistance she actually needs, despite what they said when she was 18.
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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	Some positive changes as a result of the covid-19 pandemic is that many providers now offer a Telehealth option and a lot more jobs ate remote increasing the ability to work from home which is often necessary with co-occurring conditions. Another positive, is is expanded access to online ordering decreasing social interaction which reduces social anxiety. I was able to get an undergraduate degree during this time because of the increased access to online school and that wouldn't have been possible previous to the pandemic . I think several autistic people got some social advantage during the pandemic as these opportunities became available. Some of the negative impacts that I've seen, is the pressure to get back to work and recover the economy when many of us have new conditions. The increased prices of everything makes it harder for autistic people with co-occurring conditions as many of us were already living below the poverty line and that has only increased after the pandemic. A lasting social impact for minority stress, is the knowledge that many providers could do Telehealth because they did during the pandemic, but now they've refused to do it, showing a lack of accessibility. Another lasting impact is the provision and removal of government services, where many services were expanded during the time of the pandemic which helped many, but now the services are reduced again making it very difficult for those who are reliant on services because of the strict regulations.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased waiting times for assessment. Lack of available support without a diagnosis.
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The pandemic demonstrated that capitalism does not care about disabled people, especially those with high support needs. COVID is mostly fatal for those with pre-existing conditions, after all. Corporations raise prices arbitrarily while wages stagnate. Companies demand loyalty and productivity without returning it. People do not feel safe in or appreciated for their work. COVID protocol was lifted prematurely, leading to surges in infections and more people permanently disabled. Disability services were deemed essential but the pay was made unlivable. Many of the systems adapted during COVID showed us that society actually could be more accessible to disabled people. Telehealth was a good option but is no longer offered. Healthcare workers no longer mask. Remote work is nearly impossible to find. My city council member ran on a campaign of filling downtown office buildings and ending remote work. Given a remote position with autonomy and limited communication, I could thrive. During the pandemic, many people stopped working long enough to consider their health. Many found out they were autistic. They found out they were disabled during a mass disabling event in which our government and culture demonstrated it did not care about people with disabilities. I believe this too has led to a surge of support for Palestinian resistance, as their genocide is another mass disabling event sponsored by our government. COVID changed everything.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response	Several day programs, including the one my son attended, have shut down or decreased capacity since the pandemic. Those programs that still exist are not suitable for an individual with needs such as my son's.
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	lack of boundaries and structure increase workload lack of in person interactions when it comes to requesting accommodations. prejudice by services that are available to provide accommodation in certain educational field such as the USMLE disability boards and Law School Admission Council (LSAC) disability boards.
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Name	Mabel Thomas
Demographic	Family member of an autistic individual
Response
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Name	Maci Barbour
Demographic	Autistic individual
Response	Reduced social interactions and availability of services for adults, changes in routine
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Name	Madeline Lodge
Demographic	Autistic individual
Response	The increased remote work and reduced in-person social interactions have benefitted autistic people greatly because they can now earn money in low light environments without interacting with other people who they cannot understand and who are very likely to be ableist towards them.
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Name	Madison
Demographic	Autistic individual
Response	Being able to work from home has allowed more flexibility, and telehealth has helped me a lot as well to accomadate my sensory and travel issues.
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Name	Maegan Hayes, Social Science Specialist
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Maeve Sherry, Pan-End-It!
Demographic	Autistic individual
Response	Long covid
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Name	mags, diagnosed autistic
Demographic	Autistic individual
Response	I have close friends I haven't seen in years because of quarantine. My services are at times a nightmare to navigate, and moreover, people are less willing to be patient with autistic folks and I think it's because for the duration of quarantine nobody was patient with themselves.
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Name	Maija Vance
Demographic	Family member of an autistic individual
Response
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Name	Mara LaViola
Demographic	Family member of an autistic individual
Response	Disruption in services has been severe with no governmental response that is anywhere near appropriate. Much outcry over the isolation and educational regression of neurotypical children with no reflection on the fact that this is actually how our autistic children have experienced the world both before and after COVID.
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The pay for support staff is abominablle. There is lack of good, quality and qualified professionals who serve people with I/DD and therefore causing decrease continuity of care, lack of services that an individual qualifies for but not available, Another disparity is people having aging primary caregivers or primary caregivers who have died of Covid or now disabled or daily functioning limited as a result of Covid. Domino effect.
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Name	Maresa
Demographic	Family member of an autistic individual
Response	I feel that all the examples listed above have had negative effects on autistic people’s physical and mental health.
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	It's been widely document that it has been bad for children in general (i.e. increase in mental health, lower school scores, less social interaction) - it seems reasonable to posit that that kids with autism would be equally or more so impacted.
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	There are MANY negative consequences I cannot think of any positive consequence to the COVID-19 pandemic emergency period.
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Name	Maria Maiorano
Demographic	Service provider, health provider, or educator
Response	In my opinion, some lasting positive impacts we have societal changes due to the COVID–19 pandemic are that we do not have to do as many face to face social interactions leaving the many people who have autism communicating no differently behind a computer and/or phone as the rest of us. By reducing the social interactions for some, may reduce the anxiety many people with autism have on their mental health. I think with more and more online platforms becoming normalized in our society we will see people with autism meeting people across the world giving them a sense of belonging. Although, I do think there may be many negative effects that will come of the COVID -19 pandemic. Time will tell, like anything else it is extremely individualized and we will have to wait, ask and learn more through continued research.
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response	It is difficult to tease this out, but it would be worth looking into. For my daughter, our proximity to her daily functioning and her interactions with the demands of school, allowed us to better see the issues that she had been masking for 15 years. In mentioning that, I also think it is important to continue to study and publish about the differences in how males and females present with ASD. Our daughter had plenty of issues, but it wasn't until the pandemic that we began to add up the sensory sensitivity from birth, the slight lack of coordination, the executive functioning issues that have been with her for years in spite of her sweet nature and her "seeming" ability to get along socially that she was in fact on the spectrum.
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Name	Mark Byam
Demographic	Other
Response	Increased telehealth appointments
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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	More challenging to see person as a needed, and fundamental part of society.
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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	The lockdowns severely limited access to community and recreational activities and shuttered the “adapted” activities that are so necessary for people with severe autism. This has had a colossally negative impact because almost none of the activities have come back. A FINAL COMMENT: The wrong and misleading media narratives of the last 25 years claiming that autism is a “super-power”, people with autism are “different but not disabled,” parents of children with autism are “bad and evil” because they seek treatment for their children’s conditions instead of accepting them “as they are”, ABA is “bad”, etc., have had a devastating impact on access to care. These media narratives have denied and trivialized the stark reality of autism, the difficulty of getting quality, coordinated care in medical, educational, and therapeutic settings, and they deny children and adults with autism the opportunity to learn the skills that everybody else learns (communication, reading, writing, math, appropriate public conduct, etc.), and they deny and minimize the crushing round-the-clock care burden placed on exhausted and maligned parents. The result is that the past 25 years, which could have been devoted to research and improved care for this growing population, have evaporated. POOF. We are still in the Neolithic Age when it comes to autism, with continued stone-throwing at these suffering children and their families.
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Name	Mary
Demographic	Family member of an autistic individual
Response
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Name	Mary Jane Reis, Parent
Demographic	Family member of an autistic individual
Response
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	Virtual appointments & therapies have made specialists and engagement more accessible.
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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	Positive is continue the hard work of addressing accessibility and accommodation barriers to A system that has not have that opportunity to grow from and Nativity is what I see not continue to move forward and understanding individual access need of autistics individuals across the board from health-related problems and issues to mental health related problems and issues to society health and problems issues and to Transportation barriers to solve Health disparity issues across the nation's Nationwide
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Name	Mattie Wentz
Demographic	Autistic individual
Response	I have not been able to “bounce back” from isolation like everybody else seems to. I tried to go back to my job but I haven’t been able to handle it for a while
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Name	May
Demographic	Family member of an autistic individual
Response	The negative was reduced in-person interactions, the remote work was really challenging.
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I have had almost no in-person interactions and social interactions since the COVID-19 pandemic. I've had to move my housing multiple times to stay safely housed and have relied on family members and friends to supplement my income as I closed my self-employment business in 2023 because it is too much to manage and too expensive to run. The inflation has smothered my ability to stay afloat both emotionally and financially. I am not able to see my parents or friends. I've only been able to access behavioral healthcare via telehealth and I feel it's a different type of therapeutic benefit being in person. I no longer feel safe in the general American society because generally, Americans don't seem to value or care for communal care or the elderly or disabled communities.
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	all of the things mentioned in the question. Although, the use of virtual visits has been good for individuals who may not like strangers or having people in their homes. BUT this also means that that social skill is not being exercised.
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Name	Megan
Demographic	Family member of an autistic individual
Response	The decrease in opportunities to have social interactions has negatively impacted my son. They option of hybrid school learning maybe beneficial in the future
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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	Increased use of telehealth has been good. Access to remote school was terrible in the public schools- the assumption of ability to hear and understand with headphones, etc., caused major trauma.
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	Remote work and schools generally, but not always, good. Disruptions of life patterns generally very bad.
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased remote work has hugely impacted the autistic community. Autistic people are highly unemployed due to the lack of accommodations in the work place, and other limitations like often not having a drivers license. Access to remote work improves so many employment options for autistic individuals, as well as all individuals with disabilities. Employers should be required to have remote positions available if specific criteria are not met that would require a person to be in office, like needing to open and scan mail, be present to sign in packages or greet customers, etc.
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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	It has been positive in my situation: I can work from home now and don't feel as bad when I do not want to leave the house or socialize.
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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	One size fits all does not work for all. While flexible adaptations for the healthcare, education, employment, social connection have been innovated and disseminated since 2020, access to these options is a privilege not available to all. Part of holistically addressing the health of all Autistic people requires zooming out, offering services, programs, etc. in multiple different ways, and giving people freedom and choosing to identify what works best for them. If the IACC is interested in learning more about an Autistic-led movement to incorporate universal design principles into the delivery of healthcare for Autistic people, I am available to provide additional public comment.
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response	My son was unable to attend OT, PT, and speech therapy. The services were all virtual, and he was unable to participate because it was difficult for him to sit still and learn anything through a screen or zoom meeting
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	reduced in person social interaction practice (in a safe caring environment). increased remote work/school.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	Telehealth has improved significantly and is more widely accepted and offered which is Amazingly helpful to me .
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response	fewer respite workers as most want to do com hab as the pay is better and the hours are during the day.
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Name	Melissa McKenzie
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Melissa Sanchez
Demographic	Family member of an autistic individual; Other
Response
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Name	MG Chappell
Demographic	Autistic individual; Family member of an autistic individual
Response	The increase in working from home and remote schooling actually helped a lot for me. I was previously a teacher and was very stressed by how students would not follow directions when given and I could not understand why that was. Being removed from the interpersonal aspect of the classroom was life changing. I loved creating and leading remotely. I taught music at the time. It also helped with my overstimulation of sound and activity. I am very sensitive to sound and quantity of types of sounds. All this led to changing work fields after going back to in person teaching. The increase in telehealth services opened the door for mental health support and I have kept that going even afterwards since we don't have local supports in my area. The closest is 30 min drive away. However, not having our normal routine was difficult for myself as well as my children, resulting in behavioral issues and depression. My daughter is a people person and was very down with not being able to see friends.
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Name	Mia
Demographic	Autistic individual
Response	The pandemic has exponentially increased my social anxiety. The unpredictability of it all made life so difficult to adjust to and I can confidently say my mental health has never fully recovered. I felt so isolated and alone and still do. I'm scared to talk to people. My anxiety when talking to people is palpable. I was anxious before, but now it is paralyzing. It is much harder for me to leave the house. My body feels like it's unsafe when I leave the house. I grew accustomed to living isolated. I got comfortable with being depressed and doing nothing most days. I felt so disconnected having every interaction through a screen. Reading people's body language allows me to contextualize their facial expressions more accurately, which I could not do from zoom.
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Name	Michael
Demographic	Autistic individual
Response	My anxiety is through the roof every day. I think many autistics are just overwhelmed by the number of alarming issues looming over us at all times, but this last year has been quite bad. I'm not sure how long I can keep this up.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	Disruption of in person services, lack of social interactions
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Name	Michael Raney
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Michael Rathbun
Demographic	Autistic individual
Response
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Name	Michaela
Demographic	Autistic individual
Response	Increased remote work has definitely helped/been a positive in my case. I can control my environment and since everyone uses text-based communication, people feel the need to be clearer in their words. I also don't have to "mask" (hide autistic traits) for ten hours a day when I'm working from home, which is really nice.
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Name	Michelangelo molina
Demographic	Autistic individual
Response
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Name	Michele Brady
Demographic	Family member of an autistic individual
Response	My son graduated from high school in 2021 and it was very difficult to find a post-high school program that was open and accepting new students. These programs are still having issues retaining staff and returning to regular activities. Being forced to stay home continues to cause anxiety and depression.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Negative: Disruptions in services, more specialists leaving the field or moving, less options for services, remote school and therapy were inadequate for our Autistic children. Positives: Mobile patient intake processes, waiting in care to be called, telehealth options, reduced numbers of people crowding together, sensory sensitive times at many businesses, increased availability for curbside and delivery for grocery and take out
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	See previous answer
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Name	Michelle Grochocinski
Demographic	Other
Response
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Name	Michelle Harris
Demographic	Family member of an autistic individual
Response	The pandemic was extremely hard on our teenage son with autism. The burden (financial, emotional, physical) toll of providing 24/7 care was very tough on parents, and has continued to lead to health issues for older parents. The pandemic led to a total disruption of services (in home techs) and educational and recreational services.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Many services were interrupted for disabled individuals and the efforts to get the back on track are almost nonexistent. Working in early intervention with public schools, there was already a long line of children waiting to be evaluated for an IEP and covid19 shutdowns made the list even longer. Currently there are many children that should have been evaluated already, but haven't been because the wait is so long or parents are at a loss of what to do next. Autistic adults are struggling to navigate this post shutdown world, as many of us are in tune with disability rights and advocacy and when we look around we see almost nobody wearing a mask to protect themselves and the individuals within our society who have disabilities and weak immune systems. Better covid19 safety measures need to be put back in place to make disabled people feel like they can go participate in society safely. Autistic people need more opportunities to continue school and work remotely as well as telehealth and other obligations.
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Name	Michelle Linn, Parent, Provider
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	COVID-19 infections were mild and did not affect our family at all. Since we help run the day treatment facility that supports our son, it did not close or discontinue services to any client. The isolation of COVID-19 was business as usual for us, as we did not go out in the community with our son due to his aggression and self-injury. Autism already devastated us, COVID-19 therefore had little effect.
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lawmakers and providers were forced to adopt practices that they would not traditionally embrace as an option. IE remote, eligibility requirements. Take time to look at outcomes before adopting the status quo
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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	Increased remote work and school has improved things for many autistic adults, and some kids. Some of the kids had increased stress instead... it all depended on family engagement and collaboration with staff. Disruptions in services was huge, especially when dealing with accessing medical care, and most especially with accessing specialists... but that is also the case for neuro-normative people with illnesses/conditions requiring that access.
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	Disruption in services, less help and more isolation,
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Those people who are still at risk, including disabled autistic folks, are not getting any precautions anymore. Positives: easy access to online services like therapy
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Name	Mikol Bailey
Demographic	Autistic individual
Response	Increased telehealth is helpful, as is the increase in the availability of telework.
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	virtual participation in all things has made things more accessible, only there is this weird far right/republican refusal to allow these things as a norm that continues to block adopting these as standard norms.We changed the open meetings laws here in louisiana with specific carveouts for the disabilities community YET the Disabilities Council still is under a specific cease & desist virtual meeting participation as a direct result of driving the need & changes to the laws successfully.
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Name	Mina
Demographic	Autistic individual
Response	Increased remote work has made some aspects of employment more manageable. It is more flexible, so I can take time for my mental health without missing a full day of work. However, it also leads to more demands for communication by phone/zoom/email, which can be more stressful than in-person communication due to the different expectations of communicating virtually.
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Name	Minela Fernandez MD
Demographic	Service provider, health provider, or educator
Response
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Name	Missy Garcia
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Misty Cameron
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Being able to work remotely has done wonders for my mental health. Employers should not be able to require in person work if they cannot adequately show that someone’s job cannot be done from home.
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Name	Molly
Demographic	Family member of an autistic individual
Response
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	A positive is that I think a lot of autistic people discovered they can function pretty happily in society when expectations are adjusted. A negative is that now that the pandemic is no longer a global emergency, we have gone right back to the old systems that have excluded autistic people for ages.
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Name	Monica Allen
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Telehealth must continue indefinitely. Online options for arts events and social interactions must continue. Wider access to high-speed, affordable internet continues to be needed in rural areas. Due to the ongoing pandemic, many people are delaying necessary health care. Providers, hospitals, clinics, MUST reinstate and require precautions against COVID and other airborne illnesses, so Autistic and disabled people can get the care that they need and deserve. Examples of precautions: air filtration and ventilation, easy and free access to vaccines, PCR and RAT tests, 94 and 95 high quality masks for free, offering early appointments to those who need more safety, isolation recommendations that are based on facts of how long people are still contagious (including asymptomatic people), and more. COVID is still active. Lastly, our family learned that schools are not equipped to offer special education virtually. Instead of forcing disabled children to come into schools, or forcing them to withdraw and homeschoool, public and private schools should proactively prepare plans for distance learning, before it's needed again in the future.
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Name	Moriah Adamick, parent of Autistic child
Demographic	Family member of an autistic individual
Response	increased use of telehealth is often missing details in assessments that are obvious in in-person assessments.
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	Societal changes decreasing the amount of physical time people spend together has had lasting negative impacts in socialization.
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Name	Myles Davis
Demographic	Autistic individual
Response
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	One negative effect from COVID for me is that I am constantly distressed and disregulated due to my heightened sensitivity to justice. Seeing the government and people around me refusing to mask, get vaccines, or take care of each other caused me to have intense meltdowns on a regular basis. Positively, I liked wearing masks because it meant I didn't have to make myself smile or stress about my facial expressions as much, and I liked the peace and quiet of being able to go into public spaces without everyone crowding together and getting in my space.
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Name	N/A
Demographic	Autistic individual
Response	I think an increase of remote jobs has been a good impact however myself I’ve had trouble finding those jobs, there’s always a catch like you have to meet a quota to be able to stay working remotely I personally think any job that is on a phone or computer should be remote and there shouldn’t be a goal you have to meet either you do good and you work or you don’t and you get fired and that’s that
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Name	Nancy
Demographic	Family member of an autistic individual
Response	All of the above And no start on improving services, putting much more money in budget for HIGHER PaY for staff who work with Disabled
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	The internet is both a positive and negative for people with disabilities in general. It is a necessity but can often disrupt in person social interactions. There needs to be choices for both internet based and in person based social interactions.
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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	Ability to use telehealth for those who do not want to go out in large spaces or with lots of people. Perhaps decreased interest in in-person interactions is a negative to some.
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response	Reduced in-person social interactions and obligations were actually beneficial for my child. Having telehealth as an option was very helpful.
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	I love remote work. I love that delivery is available for pretty much everything now, even more so than before. I like telehealth. Some things are obvious and no longer require the added burden of calling for an appointment, talking to several different people in the process of the appointment -- all just to spend 5 minutes or less with a doctor to confirm what you could have told them over the phone (especially for common recurring things). I would not say service disruption is an issue because I never have had any services, nor do I even know what services are available.
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Name	Natalie
Demographic	Autistic individual
Response	Having less people in public places was an unexpected positive. The changes in my work within the healthcare field were close to unbearable. The masks gave me sensory overload.
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Name	Natalie , Woman
Demographic	Other
Response
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Name	Natalie Mason
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Love telehealth. See previous comment for mental health issues seen in my children.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Because so many people begin offering telehealth services, it now feels like it is more difficult to get in person appointments because lot of providers have chosen to maintain telehealth. This is often not the most effective way for us to receive care
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Name	Nathan Blenkush, The Judge Rotenberg Educational Center
Demographic	Service provider, health provider, or educator; Researcher
Response
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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	Disruptions in services, now for all services you have to have an appointment, which is okay, but the appointments you can make , are dates way tooooo far ahead… Less social obligations are better
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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	Interruption on face to face services, loss of services when virtual services were not able to be accomplished. Resource gaps. Loss of staff and providers. Loss of opportunities that were opening prior to covid.
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	Disruption in support services, reduction of service access, more unexpected/unplanned obligations, reduction of work from home time, forced in person interactions
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Name	Nicholya Crockett
Demographic	Family member of an autistic individual
Response
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Name	Nick McCurdy, Patient/Advocate
Demographic	Autistic individual; Family member of an autistic individual; Researcher; Other
Response	Overall I believe the pandemic has made society much less accessible for disabled persons. From a cognitive science perspective, highlights include difficulty safely going out in public to access healthcare, work, social, and other needs, and feelings of not belonging or falling behind. Additionally beyond public spaces not being safe for disabled people, not enough jobs and services are available online or over telehealth (which can also be challenging for autistic patients with language issues, to be fair).
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	A lack of services for very early diagnosis and assessment due to the insufficiency of health personnel and teachers who have left Puerto Rico.
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Name	Nicole Corrado
Demographic	Autistic individual
Response	Zoom and videoconferencing was the best thing for accessibility to ever happen. It opens up possibilities for work, education, social interaction, all with the option of various methods of communication.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autistics are a heterogeneous population and different individuals will have been impacted differently and have different needs. For some, increased/improved telehealth and other remote services has actually broken down barriers and improved access to services. For others, the heightened stress of the collective nervous system (of society) and persistent instability in various systems (healthcare, education, social systems, etc) continues to takes its toll.
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	HAVING TELEHEALTH AND REMOTE WORK HAS MADE LIFE LESS STRESSFUL FOR THOSE OF US who dont drive or get HCBS support and are low income has made it easier to get things done. Its much more cost effective to do therapy, go over lab results with doc over computer than spend another 30-60 $$ on LYFT.Its nice not having to always wear DRESS CLOTHS, SIT IN TRAFFIC EVERYDAY. We need to allow therapists to see PWD ACROSS STATELINES. ON DOWNSIDE SOCIAL ISOLATION, LACK OF HCBS FOR ADULTS WITH AUTISM
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Name	Noemi Spinazzi, MD, FAAP, Down Syndrome Medical Interest Group (DSMIG), DS-ASD workgroup
Demographic	Researcher
Response
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Name	Olive
Demographic	Autistic individual
Response	I can’t speak to the full extent but I know a large part that impacted many people myself included was being disconnected from community and major changes in routine. Paired together it brought out a lot more depression and anxiety and it’s taken us longer to bounce back than our allistic counterparts, I know a lot of people struggled maintaining an education as all of sudden they were no longer able to be accommodated do to the shift to online schooling. It felt very much like we were being left behind and having to fend for ourselves because a lot of the resources that were available became harder to access
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Name	Olivia
Demographic	Family member of an autistic individual
Response	Increased homeschooling and more use of telehealth.
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response	Personally it has allowed me to perform at a higher level in my career because I now work from home and have the personal space I need to mask/perform and recover privately.
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It seems that lasting impacts of the pandemic have had some positive impacts on autistic people, including increased opportunities and acceptance of remote work/school as well as reduced in- person social interactions and increased use of telehealth and services such as curbside grocery pick up.
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Name	Parent
Demographic	Family member of an autistic individual
Response	Disruptions in services, ability to access the community, isolation
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	See response above. Most of the impact for us has been loss of services and increase in disruptive behaviors. We have fewer supports. We cannot tell if she has permanent physical or cognitive damage. On the positive side, we learned about new activities that our daughter likes. She is very active and her anxiety is reduced with physical activity like long walks, particularly outside, bowling, etc. She has a greater tolerance for different foods. She ate at home exclusively for over a year and we learned she can be a very healthy eater. So, we learned that some of the "behaviors" and preferences were actually made worse by her pre-pandemic setting. These individuals benefit from being out-door and not cooped up. They will eat fruits and vegetables if offered, not just pizza. But good food is expensive and not often offered in institutional programs.
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Name	Parent
Demographic	Family member of an autistic individual
Response
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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	I can only opine, but significant changes of any kind disproportionately affect the most vulnerable among us. Anything that results in less predictability and fewer services has likely wounded the autism community greatly.
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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	People are more guarded and there may be fewer sports and other in person meeting and interacting opportunities Many small programs have closed and the emphasis on self direction vs. congregant care activities (to eliminate expensive programs and employee benefits for states?) mean that there are fewer social opportunities. There are also not enough residences for people who cannot live with families. The socializing activities levels in these homes that exist are nil due to lack of training and adequate treatment planning.
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response	The positive is the creation of social "zoom rooms" for members of this community to interact from different parts of the country. And the telehealth component can be very accommodating to the individual and their families to receive some services.
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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	Remote school work nearly caused me to repeat a year of high school because I benefit greatly from having a specific space just for school work, as I cannot get into the same motivated headspace at home as at school or work. I benefit greatly from a structured routine, and deviations from it can be damaging. Telehealth is convenient because of transportation concerns and the difficulties that come along with going to new places and meeting new people. I have mixed feelings about the social obligation part of this question.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	When it comes to COVID-19, the positive impacts were increased remote work and school, the rise of Telehealth, and feeling more connected with people while the negative impacts were isolation, delays of services, and not enough support.
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Name	Payton
Demographic	Autistic individual
Response	The increased remote work can be a benefit to most autistic people and undoubtedly helps those in fields where they would be working with customers and clients to keep their distance and maintain a greater amount of energy by staying home and working on their projects in the comfort of the familiar rather than going into work. While routine is important, and sometimes essential for the average autistic person, ultimately social distancing has made life easier for the average autistic person and an option should be available to continue doing so without risking their job or their education.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response	Alone time, increased opportunities for remote or hybrid work, social distancing/personal bodily space (all positive).
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Name	Person with Autism
Demographic	Autistic individual
Response	Telehealth has been great
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	Increased telehealth may be a positive impact. Increased internet services in general have probably had a positive impact in our case. Paradoxically reduced social interactions and obligations may have had a negative impact.
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Name	peter mazure, parent
Demographic	Family member of an autistic individual
Response
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Name	Pon kavitha Anbarasi, St. Mary's College
Demographic	Family member of an autistic individual; Other
Response	It created a negative impact during the COVID 19 , as some children's have affected by prone to the screen which led to develop some development problems .
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	Telehealth services have been very helpful. Not being able to see parents or guardians over extended periods of time was difficult for them Not being able to go out to restaurants and fun activities was tough as well
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Name	Purna Waldow
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	I observed enjoyed the decreased social expectations during the pandemic. The increase in available telehealth services made accessing care easier and less stressful. The increased availability of remote work also made life easier and work sustainable. I was, however, disheartened to see the utter selfishness people exhibited during the pandemic and their willingness to put others in danger, especially people who were already vulnerable due to pre existing health conditions. It contributed to me leaving my career in healthcare to pursue work I could perform remote and I have no desire to work directly with the public anymore after the way I was treated during this time. It's also been disappointing to watch the spike in corporate ableism as companies try to force people back to in person work, regardless of the benefits remote work brought many people, not just autistic people.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Rachel
Demographic	Family member of an autistic individual
Response	i actually addressed this in the previous question
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Rachel
Demographic	Autistic individual
Response	There has been a big positive impact of COVID-19. It has provided online pickup for groceries so an autistic person does not have to shop inside. It has provided a six feet recommendation so people do not get too close to autistics who can be sensitive to their personal space.
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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	All of the above. It has been a huge issue.
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Name	Rachel Payne, PhD, Didlake, Inc.
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Rachel Spencer
Demographic	Family member of an autistic individual
Response
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response	The increase in telehealth has benefitted my son tremendously. Though the disruption in his schedule was a challenge, the availability of his doctors, nurses, and specialists via telehealth was a godsend for him. He does well with telehealth appointments, sometimes better than in person.
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Name	Raine
Demographic	Autistic individual
Response
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Name	Rainier, Endeavor to Hope Counseling, LLC
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The ability to work from home, use accommodations, and normalize a life that many disabled people live already has increased access and freedom in ways that technologies are cheaper and options for work, support, therapy, and more to be online or hybrid are available.
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Definitely, Flexible time schedule has been a good thing. Do not resuscitate orders were bad thing, as if Autistic/dyslexic lives are less worthy
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Support in schools has declined for this group
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Name	Rashelle
Demographic	Autistic individual
Response	Many are introverts, but it made needed social interactions worse among ballistic people. People effected forgot how to interact properly.
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Name	Reagan
Demographic	Autistic individual
Response	It’s been 100% harder to even find a job. I applied to over 237 last year. And I never got anything back. No calls backs, even when I tried to call for updates. People have treated me worse since the pandemic. Everyone seems more hurt or something.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic people already feel isolated. Working from home is better for us. But not feeling like we can go back into society without jeopardizing our physical and mental health is taking a huge toll. We live with fear of ourselves or our loved ones dying from Covid complications daily.
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response	Positive impacts include increased access to telehealth services, when appropriate, and increased acceptance of social media and alternative communication means (e.g., text, videoconferencing) improved assistive technologies like word prediction, voice banking, voice assistants, speech to text, and text to speech. A negative impact is delayed access to services resulting in language and learning loss post pandemic.
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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
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	More people were educated on autism during the pandemic, leading to more awareness and acceptance.
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Name	Rebecca Farrell
Demographic	Family member of an autistic individual
Response
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Name	Rebecca Jukes, Mom of Autistic Child
Demographic	Family member of an autistic individual
Response	During remote learning and telehealth the stress of social interactions and going into the public decreased and made things easier, the ease of self paced learning, shorter hours and being able to be in a safe, comfortable and familiar environment where they were not restricted to social norms, strict schedules and the distraction of others and fear of upsetting their teacher they thrived and were happy. Once things started moving back into normal routine it became stressful, the anxiety and ADHD meds increased, the stress of homework being counted as part of the grade compounded with 5-6 hours of needing to be normal, calm, quiet and pay attention increased behavior problems at home as well resulting in bad grades and social issues.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	The labor shortage has made it difficult to find qualified direct support professionals.
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Name	Rex Frasier
Demographic	Autistic individual
Response	I think employers that were more willing to adapt to remote work and schooling were beneficial for autistic people who are immunocompromised as well as those who have social phobias or are distracted easily when surrounded by other activity going on in a work space that can cause them to lose focus on their duties. This also comes with a decline in ability to be in social settings or how to respond to people during person to person interactions.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Disruption in services (including services to get a diagnosis and management) reduced in person social interactions which may lead to loneliness and isolation Obesity loneliness, depression and anxiety
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Name	Rick Grossman
Demographic	Autistic individual
Response	if someone lived in the community where they were services for artist who were adults, they don’t exist anymore. Suicidal changes have made it more difficult to communicate with businesses, and to get a helpful response. Businesses are only providing phone numbers which make it very difficult for autistic people to communicate And people are flawless tolerant, and angrier today our problems have magnified and there’s nothing or no one to help
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	The question seems designed to emphasize the negative impact of the U.S. government & societal systems on ASD individuals. The lack of positive experiences & pervasive maleficence towards autistic people in this country are highlighted. Service disruptions persist, with limited options due to legal restrictions. Remote work opportunities for autistic individuals are scarce, and the brief respite from in-person interactions was short-lived. The hope for positive change through commentary is overshadowed by a sense of hopelessness & past trauma by the system ASD people live within, I am anticipating continued struggles for all autistic adults. The analogy of autistic individuals as the canary in the coal mine reflects ASD peoples role as indicators of societal health. A thriving society is evident when ASD individuals face fewer challenges, while a corrupt one manifests in their daily struggles, co-occurring conditions, and trauma. My contribution may be futile, but it underscores the urgent need for systemic improvements to support & uplift ASD individuals. More help. You asked for our commentary? We don't have enough help monetarily and empathetically to function as adults. Do something to actually help, please.
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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	Lack of access to ADHD meds
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Negative: -increased stress, trauma, and potentially worse outcomes/regression -difficulty wearing masks, while simultaneous stress when others disobeyed rules regarding masks -loss of autonomy, especially for those stuck in controlling or abusive environments Positive: -WFH/remote access increased accessibility -online interactions are generally also more accessible
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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	Disruption of services. Changes to daily routines, vacation plans, family functions.
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Name	Robin Rhoades
Demographic	Family member of an autistic individual
Response	Severe disruptions in services and school. Loss of any supports and schooling for 2 years. Caused even more developmental delays. Can’t do distance learning. Reduced in-person social interaction and obligation.
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Name	Robin Weisman
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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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	The negative impact of COVID-19 is seen in the worsening of an already barren landscape of Direct Support Professionals willing to work with autistic people in the home and community. Post-COVID, it has become even harder to find qualified individuals to support individuals on the spectrum because higher wages are paid for easier jobs.
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	Working from home is a positive for people with ASD and other conditions. For ADHD we need some routine and the structure and a slight pressure to get anything done. So I think identification of conditions like ASD/ADHD etc is vital and at and age before working life starts so we can know ourselves and what works did us. Early intervention is vital to live a good life knowing yourself and what works best. We want to do well, we want to work and have families and thrive, but that is very challenging without diagnosis in a world that is not designed for our needs or with flexibility. To survive we have to know early on our diagnosis and put strategies in place to navigate the world.
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Huge disruption in services
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response	I like that I can wear a mask if I find that a place is too smelly, IE too many strong perfume smells. I also like the social distancing is still kind of a thing and it makes shopping better. I have more anxiety over shopping in person now, especially if the store is hard to get out of, like my local Smith's. I am sad that telehealth is less likely going to be a thing now, I enjoy being able to have an appointment in my office rather than having to leave work and drive halfway across town to see my doctor.
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Name	Rowan Gibson
Demographic	Autistic individual
Response
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Name	Rowan Leshy
Demographic	Autistic individual
Response	I don’t need more isolation, i need more connection. Especially with compassionate employers and coworkers.
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Name	Ruby Bard
Demographic	Autistic individual
Response	Ive found that social anxiety has increased and lonelyness, but honestly the original pandemic was really scary; I was really glad I didnt have to go out and interact. Im aloud to be more rude and go home because im sick or overwhelmed I can just say "im not feeling well" and go home. A quick covid test will tell me how dangerous a cold is and I can move on from there. Getting back out in the world is the hardest part because people get more pushy, or maybe I just wasn't used to it like I had been. I was severely burnt out from masking at the start of the pandemic and went through a major depressive episode. It took a very good ESA Rat, Trained to alert to psychiatric episodes, to get me back to a new normal. Im still very dysfunctional in public and can barely step foot into a grossery store without cringing but my Service Dog helps loads and grounds me and lets me stimm on her when i get overwhelmed. I already had a special interest in disaster preparedness and Medical emergency care and triage so I qutie enjoyed being able to use my knowledge.
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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	Losing the social life I had developed over the last 15 years was devastating. It was a level of change I couldn't handle. If I hadn't been making enough money to afford neurofeedback sessions I would have become suicidal. Now that I'm on federal disability I can't afford neurofeedback to help me recover from this last autistic burnout that is NY far worse than anything I have experienced before
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	When covid first happened my college classes became virtual for the rest of the semester which I really enjoyed and it helped with my energy level since I didn't experience as much sensory overload. I have never had remote work unfortunately. My mental health therapy did become virtual which I was really nervous and hesitant about at first because of possibly not having a private space to do it. But now my therapist has in person or virtual option and I have chosen to continue virtual because with my chronic neck pain from my rare disease it is more accessible. I have done physical therapy virtually at times which was more difficult.
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Name	Ryan Bradley
Demographic	Autistic individual
Response	Increased remote work Increased Telehealth reduced in-person obligations Increase in depression, self-afflicted harm, suicide, dietary problems, loneliness
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Name	Ryan Erdozain
Demographic	Autistic individual
Response	I had a really hard time with Zoom school. Many panic attacks happened on camera, and it was very draining. The pressure to succeed when I didn't understand the rules of the game was exhausting and trying to wrap my head around it all was mental agony, to say the least. The rapid change in my schedule was hard but after a couple of years, I started to get used to things. The social effects are still damaging as I still only have contact with a handful of people and am unable to reliably travel to hang out or meet new people on a whim.
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote work is great.
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Name	S.
Demographic	Autistic individual
Response	The COVID-19 pandemic had has a negative impact on socialization. As an autistic person, it is even more hard for me to socialize.
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	Positive: more online/phone options for doctors's appointments. Negative: fear of leaving the house and getting sick
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Name	Sacha
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The only good thing from covid is more availability of telemed and other virtual events which help make them accessible for autistic people.
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Name	Sam Stern, either individual person or democrat-center
Demographic	Autistic individual
Response	- stores do not stay open late anymore seriously restricting access to wall mart, home depot and ote4hr stores that I used to be able to goto late at night to avoid crowds. - COVID helped normalize work from home, making it teaser to discuss those alternative experiences and seek them out - the anti vax movement has added to the language bank of words that indicate that I should not ask for help from or should seek out help from specific folks depending on how they react to masks, hand washing etc.
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Name	Samantha
Demographic	Autistic individual
Response	In some ways, the societal changes after the pandemic have increased resources and opportunities available. However, the increased isolation may only serve to exacerbate problems that can be worked on with diligent effort and proper support.
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased remote work Increased understanding that matching external expectations for socializing can be unhealthy for some.
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Name	Samantha
Demographic	Family member of an autistic individual
Response	cannot find providers, long wait list, staff leaving the profession due to long hours and lack of funds those who could do therapy on zoom have been able to get services without leaving their home which is nice for some.
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Disruption in access to medications has been a serious negative impact. The post-pandemic economic greed of massive corporations has crippled the mental health and positive outlook of most autistic individuals. Medications are too scarce and far too expensive, often I have to choose between my meds and food for the next few days.
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Name	Sandra
Demographic	Family member of an autistic individual
Response	Didn't really matter before covid , we live a secluded life due to the disabilities.
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response	There are even fewer options available for diagnosis which is very limiting
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Name	Sandy
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Sandy Wormald
Demographic	Autistic individual
Response	Personally I’ve found it better for me. It stopped the world and I was able to find out what personally worked for me in regards to living life. Instead of trying and failing to do things as others told me I should i just did what I enjoyed and I found new ways to make money and use my giftings. Instead of fighting my audhd I now have learned how I like to do things and I enjoy everything I do. This makes it easier to deal with everyone else and my quality of life has improved. In some ways I go at a slower pace and I now have grace in that. I also have many giftings and now I’m able to express them instead of being forced to focus on only one or a few and being frustrated and bored all the time. I deal better with things being alone so Covid was good for that. It’s not truly that I like being alone, it just wastes a lot of time and energy when people enter your space but consistently try to force you to mask with policing and judgements. It’s easier to be alone and just get done what I need to without the control and judgements because I don’t do things like others or care for what others care for.
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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	Covid has shown us just how self-serving many of us are- controversies around masking, judging people who wish to remain remote workers, and a general lack of empathy, something Autistic people have an abundance of.
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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
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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	The single best thing has been the rise of telehealth appointments, contactless delivery, and curbside pickup.
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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	Positive- greater access to telehealth, which can increase equitable access to services as long as Medicaid is providing phones (as they do in Pennsylvania) and those who are autistic with comorbid conditions can access Medicaid.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response	The ability to get more telehealth visits has made it possible to keep more appointments.
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased Telehealth options eg it’s counselling has been excellent for my PDAer as they find it very difficult to leave the house. Long term the increased flexibility of remote work may also be helpful to thrm, but remote schooling was a disaster for both my Austistic kids
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Reduced interaction and disrupt ion in services
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Disruptions in services, increase in remote school and work without adequate training or infrastructure to compensate, more convoluted systems in place to get services, technological advances moving faster than are taught/ processed
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Disruption in services, increased telehealth
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Name	Sarah Muecke
Demographic	Autistic individual
Response
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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
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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	One positive (perhaps also negative) aspect that came out of the COVID-19 pandemic was the reality that remote work has always been a feasible accommodation. It just took non-disabled people needing the accommodation for it to become a broadly acceptable one. Many of us are grateful for this option, but it’s truly unfortunate that it had to come down to a global pandemic to witness change in this area on such a large scale.
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Name	Scott Jones
Demographic	Autistic individual
Response	resocialization, changing in patterns and routines,
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	Increased remote work has held a major impact by reducing commutes and in-person social interactions. 'Masking' requires a great deal of effort. To do so properly, one must be constantly vigilant of their surroundings and social interactions to include context interpretation, tone, facial expressions, gait and body language/proximity. Masking for 8 hours per day could be held akin to walking with an 80lb backpack for 8 hours, every day (exhaustion and muscle fatigue, translated into mental fatigue known as 'burnout').
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Name	Shannon
Demographic	Family member of an autistic individual
Response	We have no services. I had to quit my job to stay home and be a paid caregiver, increase use of telehealth, increase in medical visits, increase in medications, increase in medical bills, increase in mental health diagnoses, reduced social interactions, reduce obligations, reduce outings, reduce social activities, reduce tasks, basically reduce productivity in life.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	Finding services was hard before Covid-19 and even harder during and after.
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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	increased virtual services
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response	There really was no remote work. Parents were not trained on how to work with students who were Autistic and had IDD. Students in self-contained classes were not afforded Chrome books to work with. Papers were sent home. A student in 8th grade and who cannot talk, write, communicate, hold a pencil, crayons, or scissors, etc. meant that the parents or another family member was physically doing the work; and without pay. The struggle was real for students and families. The lack of social interaction I feel impacted everyone then and I feel we are experiencing residual effects now. People are still uncertain in large crowds. When someone coughs, people become afraid. I think Covid-19 will impact our lives for years to come and I don't think most of us will feel "normal" ever again. I think we will all be on alert. The damage has been done.l and have long term implications. Thank goodness the physician still saw us as needed.
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Disruption in services such as day programs for adults with autism Skill loss Isolation Social interactions became more difficult
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	The increase in remote work and more options for remote schooling are very positive impacts for those of us who struggle working in traditional environments. Another positive effect was the availability of take-out and other delivery services that make the world much more accessible to those of us who are often stuck in our homes.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response	For our family there were some positive impacts, I am now able to work from home all the time which allows me to be at the ready when my son needs me. Covid opened the door for employers to really see how challenging it can be to be a parent of a child with a disability. Policies are changing for employees because of Covid. our biggest negative impact for my son with autism is I believe Covid exacerbated my son's trauma. It also impacted his agility to be social which caused a regression in his social and communication development. This has made it very hard for him as is now out of high school.
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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	One of the lasting impacts from COVID is that many day-programs were stopped, which was a big loss for people who attended them. Patients are often in group homes or at their own home without any structured social or work programs to attend. A lot of patients really enjoyed the social interaction that their day-programs offered, and not having this has left a big void in their lives.
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Disruption of education and friendships.
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response	Remote working & schooling has been difficult for some because it requires skills in being organized & self motivation
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	It made getting a job as a disable person really hard, and if you do get a job they exploit you by making you think your about to get fired because of your struggles do to your disability, making you ever work yourself. But it also has given us the courage to call in sick when we need. The biggest issue in the work force now is lack of mental health assistance and the unafordability of Healthcare to receive medical help to get therapy and medicine to be our best selves
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	I genuinely felt better during the COVID-19 lockdown as I did not have to leave the house and when I did, did not have to interact with many people. It was less stressful to grab feminine hygiene products and bread when no one approached me every thirty seconds.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response	Doing tele speech/language therapy is more difficult than in person, but the decrease of Speech language pathologists overall makes tele services better than none.
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	The entire medical industry is a disaster such that getting ANY services has months, even years long waitlists! We currently have zero options for in-network psychiatric services for medication management because the major group that provides it is so impacted that they aren’t even taking people on a waitlist anymore.
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Name	Shelly Moss, Atypical
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I believe it has damaged social structures beyond repair for allistics and autistics alike. The isolation caused many to become feral and unhinged socially.
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	It was a disruption in people's schedules. If only online school was available many autistic people either thrived or did horribly and there was no middle ground.
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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	Disruptions to services and community activities turned into permanant termination of many services. Lots of programs still do not have enough staff.
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response	Well, our kids need more support in the home. We just do not have people who can do it. We have a lot of kids in my county who need home-bound school services and have been waiting 6 months for them because there is no staff to do them. Without a structure to our kids day, and then them continuing to learn when they already have a developmental delay, holds our kids back even more. There is so much stress on a caregiver, and now we are to be teachers, therapists, be on the phone with insurance all day, etc. It's too much. The mental toll on a caregiver also affects our children with autism significantly.
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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	disruption in services, home heath aid workers shortages due to low pay
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response	Addressing these challenges will require a shift in discourse that moves away from siloed systems and fragmented services and instead prioritizes comorbidities. Labels are for insurance companies, not humans. This urgent, collective challenge calls for the commitment and work of self-advocates, healthcare professionals, lawmakers, and caregivers/families all working together — and the outcomes will define the mental health of a generation.
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Name	Sleep Research Society
Demographic	Other
Response
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Name	Sloane Walters
Demographic	Autistic individual
Response	A very positive impact is the widespread acceptance of telehealth, which allows people with sensory issues to seek care from their own house.
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Name	Sonia
Demographic	Family member of an autistic individual
Response
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Name	Sonja
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Special needs mom
Demographic	Family member of an autistic individual
Response	It was a bit frustrating due to change in routine, children missing their friends, virtual learning being absolutely ineffective
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response	Positive: telehealth and accessing services remotely are much easier Negative: reduced interactions outside the family delaying diagnosis. Hard to see impact on socio-communication if not around people
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	Our son graduated from college in May, 2021. He had not been on campus since March, 2020. As a result, he did not have an opportunity to use his school's career placement services to find a position in his field of study (and still has not found one today, almost three years later).
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Name	Stephanie
Demographic	Autistic individual
Response	I think the changes from Covid-19 have affected lesser access to services, City Transportation, doing online work and school, more online doctor's appointments and using online communications for friends and family.
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	All.
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	Some of the impacts were positive- remote work allowed for more line of sight into the challenges for my kiddos in the classroom. It also was a challenge for social connection and increased isolation and computer device usage which was a negative.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response	Increase in telehealth and decrease in social interactions due to events, services being shut down.
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Name	Steve
Demographic	Autistic individual
Response	None that I can think of.
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Name	Steven Lunseth
Demographic	Autistic individual
Response	It is harder and harder to try and make any connections with people. It is also harder to get proper medical care. I moved into a independent living apartment run by Fraser which is a company based in Richfield MN. They said they had social opportunities that are just starting to come back but vanished during COVID. It made it harder to leave the home during COVID leading to a increase in Agoraphobia. As for positive things. Some companies are actively trying to hire neurodivergent people.
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased use of teleworking and remote educational programs have been an absolute godsend for me, but have also worsened my social isolation and resulted in some lost skills (e.g. planning to get to a workplace or an appointment on time). I dealt with agoraphobia for a good year after the first vaccine came out.
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Name	Susan
Demographic	Autistic individual
Response	I can see that as a benefit for many but not myself as NY job is hands on.
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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	Services were disrupted for 2 years and have not been re-established; job opportunities have disappeared;
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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	Disruption in service and isolation
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	Negative: disruption in services across the board, including therapy and psychiatric hospital bed availability Positive: Reduced social interaction was actually very helpful for my daughter. Increased use of telehealth was great, fewer appointments away from home to affect her schedule and overall ability to cope with new situations.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response	Access to telehealth has been amazing for my family. Less travel when it comes to making appointments saves us on mileage, gas money, and stress of getting our kid ready and in a state where he can have a successful appointment. Traveling 3-4 hours one way for 15 minute appointment and then 3-4 hours back is hard on all involved.
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Disruptions in services. Their needs were ignored during COVID.
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Name	T. Gittleman
Demographic	Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Tanina Cadwell, Unaffiliated
Demographic	Autistic individual
Response	Same answer as previously: Surprisingly, my mental health and physical health were drastically improved during the mass quarantine due to COVID-19. Because I was allowed to work from home, everyone had to wear masks, and many social / professional events were cancelled, there were fewer triggering stimuli and traumatic / stressful events to push me towards burnout. I very quickly deteriorated when people were starting to pick up conferences & hybrid work again - April of 2023 was when I ended up quitting my job of just over 3 years due to severe mental & physical symptoms of burnout. I’ve been unemployed since.
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Name	Tara
Demographic	Autistic individual
Response	What has been helpful is the increased use of Telehealth and work from home. It illuminates some stress. Normalizing this gives disabled people better care.
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	The use of remote work and services have been a tremendous asset for the autistic community. Being able to reduce the amount of social interactions one has to endure daily to remote access has been very positive and I have for one been very active using remote services in response to the pandemic.
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Name	Tempest
Demographic	Autistic individual
Response	Negatives: The masks, while necessary, prove to be a sensory issue for me and many other Autistic people. Service disruption could upset an Autistic person's schedule which may be extremely rigid (Mine tends to be flexible to accommodate my ADHD, even though I would prefer a rigid one. However, I am still distressed by schedule changes.) Positives: The chance to unmask, telehealth options, remote work/school options, reduced obligations, and the ability to stay home to mitigate sensory input.
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Remote education and job opportunities are the biggest positive impacts of Covid-19.
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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	Negatively it has impacted how people treat one another. They are much more hostile to everyone. It felt easier at first since everything was remote and social interaction was not required. It did cause a lot of emotional weight with watching the virus kill, shut down places and cause a huge rift that is still not fixed.
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Remote learning and working options however a lot have reverted, more connections made between neurokin and some improvements in less pressure to be doing more out and about.
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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	Increases in remote work and telehealth
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Name	Tosha Brothers
Demographic	Autistic individual
Response
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Name	Tova
Demographic	Family member of an autistic individual
Response	big gap in socialization for children
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response	We had to provide all services ourselves as no options were available for over 18 months.My husband and I work full time and it was difficult to provide activities
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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
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response	It seems like access was as bad as it always is.
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Positive: More options for participation in society - online or remotely. Negative: death. folks with mental health or neurolgical conditions at the bottom of the triage.
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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
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Name	Val Luther
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive effects for our family have been Telehealth appointments
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Name	Valerie Beckwith
Demographic	Autistic individual
Response
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	Bad. very very bad. I don't want to admit to any of it being lasting because I have faith that our government is going to get its [profanity redacted] together and Fix it.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	More opportunities to work from home.
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response	The ability to have more services available online has been both a positive and negative for my child. It does allow him to meet with therapists from further away and also in a convenient and comfortable setting for him (home) but there are times when in person services are really the only effective option and making them available remotely simply isn't good enough.
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Name	Vee Crowe
Demographic	Autistic individual
Response	There's been disruptions in routines, disruptions in services, caretakers can't take their clients out with how everything is and the reduced interactions has just isolated many who usually were able to socialize outside before. Sure, reduced social interactions can be nice but we need to socialize every once and while as we are a social species. Without it, we become withdrawn, depressed, poor in most mental senses of the word. Caregivers must be allowed to accompany their client, especially if said client needs them for everything. Isolating them further does nothing but harm the community.
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	The lack of routine , social interaction increases anxiety. Isolation lack of therapy , use of electronics to try to find social interaction .
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Many individuals became much more isolated and socially regressed
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Name	Vienna
Demographic	Family member of an autistic individual
Response
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	The disruption of services and schooling made it very challenging for my son to return to in-person activities. I believe it impacted his social development dramatically
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Name	Viktoriia
Demographic	Autistic individual
Response	it was better actually - I love working from home. And I was happy to stay there most of the time
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Name	Virginia Fox
Demographic	Autistic individual
Response	Increased use of telehealth is nice because it makes doctors appointments easier. Reduced in person interactions made my social skills suffer and I got unhabituated with coping with social environments. Increased remote school/work has helped schools and companies be more flexible with accomplishing tasks in person or at home, and that flexibility has helped autistic people.
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response	School being so easily canceled now that it messes up their schedules
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response	I cambiamenti sociali legati al Covid dovrebbero aver fatto capire anche alle persone non autistiche e verbali che si può comunicare in modo efficace anche senza la voce e l'interazione sociale stretta, ma con l'aiuto della tecnologia e della lettura-scrittura se c'è interesse e attenzione al valore delle persone, anche di quelle autistiche [Translation: The social changes linked to Covid should have also made non-autistic and verbal people understand that they can communicate effectively even without the voice and close social interaction, but with the help of technology and reading-writing if there is it is interest and attention to the value of people, even autistic ones]
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	As I previously noted, increasing work from home and a better understanding of Autistic needs for accommodations in the workplace are a positive. Telehealth is preferred by most Autistic people and the increasing availability of this has been very positive.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response
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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	See my previous response - social distancing was overall experienced very positively for autistic people, but the return to "normal" has been traumatic.
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Name	Whitney Voltz
Demographic	Autistic individual; Service provider, health provider, or educator
Response	For me it has been largely positive. I LOVE telehealth visits. I understand that sometimes I must go into the clinic (for blood draws, for example). It is much more bearable now that I can do the majority of my clinical visits virtually. I’ve also worked 100% virtually the last few years. The reduced need for in-person interaction has been a godsend. I’m physically, mentally and financially better off. Leaving the house 5-6 days a week, dealing with sensory overwhelm, transportation, unaccommodating coworkers and having to mask were horrible for my health and felt like they were shortening my life span.
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	Tele-health and work-from-home positions have been of incalculable benefit to us at large. I have not worked a remote-work job, but being able to communicate with my doctor via worded messages OR video call was a tremendous relief and incredible convenience, during the short time I used them.
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Name	William Spell
Demographic	Autistic individual
Response	I had used more telehealth, and there are far lesss in-person interactions nowadays.
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Social life is much more atomized, there are little to no public social gatherings in my area, and even large cities like Chicago, which I live near, have lost their sense of community. When people do interact, such as in school, no one speaks, it's deathly silent. While I'm sure many autistic people may find comfort in a more personal and intimate social environment, for me and those around me the stink of death and the eery silence are nearly impossible to cut through, and it leads to incredibly diminished mental health. I have no idea what solution you could have that would encourage social gathering but life is just so empty now, and I'm sure people who have difficulty talking to people or making connections are more lonely than ever.
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Name	Wylder, Autistic
Demographic	Autistic individual
Response	Virtual appointments for school and medicines are much much less effective in my experience. Specifically, my psychiatric care has decreased drastically in quality. it is much harder to say what i need to say virutally than it is in person, making it much harder to have my needs addressed.
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response	Telework has been a major improvement and wearing mask.
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response	All of the above- mentioned examples can be part of the overall systematic issue we continue to face without the adequate effective long term treatment models we need to implement, in order to see positive long term changes.
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Name	Zachary Kopel
Demographic	Autistic individual
Response	Dealing with less people
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I can meet w my care team virtually. This access improvement is immeasurably positive. Being on lock-down and working from home were the best thing that has ever happened for my mental health. Just the mere presence of people is painful. Having to be back out in the world is the absolute worst.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The current spectrum of housing, vocational and care options for adults with severe autism is that most participants want to solve problems for the easiest-to-manage people, maximize profit for minimal effort through this strategy, and ignore the most vulnerable who are also the most difficult and expensive to support. This dynamic results in the least vulnerable taking all available public support for housing and care, leaving the most vulnerable underserved and endangered, and placing an undue burden on their families. As parents of a severely autistic adult child, we expect to commit all of our remaining years and resources to his care, because there is no other viable option. Policymakers and legislators do not understand this, and there are too many actors in the autism community who are only too happy to victimize the vulnerable to gain greater resources for the less vulnerable (who are more numerous) and to resist changes to the status quo from which they prosper.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	I have heard stories from the Competitive Integrated Employment experts about how people with disabilities who were employed during the pandemic sometimes thrived with remote supports in a way that far surpassed expectations. The shift from exclusive in-person medical and mental health services to remote services has been a huge boon for people with ASD and other disabilities, significantly improving access to supports (particularly when the providers and the clients are physically distant from one another). I love that most of my many weekly meetings are now held via Zoom. It puts me on a more level playing field because some of the nonverbal messages that neurotypical people use to their advantage are not available. Obviously covid continues to be a top cause of morbidity and mortality around the world. Long-covid can interact with ASD and other common comorbidities to make life more difficult for people with ASD. This is another area that is ripe for research. We know that the prevalence of depression, anxiety. nonsuicidal self-injury, and suicidality has increased dramatically since covid amongst adolescents. We don't know the situation for people of all ages with ASD.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased remote work has actually been very helpful to me. I would have most likely lost my job due to the amount of school refusal we've had to deal with over the last couple year. As companies are starting to push for employees to return to the office, I'm concerned about the potential negative impact on my career that his PDA diagnosis could have (and I carry our health insurance). Telehealth has been great for quick doctor appointments, but it's been ineffective for therapy for my son. (I personally have found it very helpful for therapy for myself).
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The increase in acceptability of remote work and virtual presentations has been a gigantic improvement in the lives of autistic people. Transportation to and from work and being in offices, office buildings, and otherwise having to deal with the sensory and interpersonal experiences in an office are debilitating. Open offices, bad light bulbs, perfume, etc. are hell. And asking for accommodation meant a) giving HR a reason to target you for firing and b) having co-workers asking questions and resenting you. Now, we can self-select employers that have employees who can communicate without needing to do so "over a beer". In terms of virtual video of events there are so many more things to attend and participate in. The groups who cut out the accessibility of participation from home prove they don't want people who aren't like them and that they can and should be written off. The distinction that this type of inclusion versus exclusion decision draws in "post"-COVID-19 times is apparent and improves lives. It's also clear who does and does not still require masks, air filtration, testing, and vaccination. Some people care about others and some people don't. It's now very easy to tell the difference and stop wasting time on discriminatory groups.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Tele- health for mental health is one of the greatest benefits of COVID along with remote work for individuals with 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	None Indicated
Response	• Disruptions in services (Adult Day services and community engagement) • Continuity of care - increased use of telehealth, still experiencing virtual visits that do not capture the full picture of the person when reporting to the clinician • Staffing shortage • Caregiver and provider burnout • While increased remote activities provide flexibility and convenience for some, they also reflect decreased face-to-face social interactions, which limits opportunities to build and refine skills related to communication and socialization increasing the need to adapt and be creative with social interactions and events • Unwittingly promote social isolation
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I already wrote in my last entry about the positive impact of virtual appointments from the pandemic. Another positive impact on our family was my husband's ability to work from home remotely during the pandemic, so he was available to attend appointments and help out when our son was experiencing challenging behaviors. The ability to have IEP and team meetings remotely was also a big help. On the negative side, my son's anxiety increased during and since the pandemic. He was unable to attend school in person for about 5 months, and keeping on a daily routine was difficult. He developed some bad habits of avoidance that we're still working on to this day.
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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	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	The world is generally less stable and predictabke which increases anxiety. Followed closely by issue caused by fake self dxers on social media
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All if the above
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Disruption in services and access to community supports has had a significant impact. Many providers are short-staffed and appts stretched farther apart as a result. COVID resulted in my son losing a chunk of time in his integrated pre-k where he should have been in class with on-site therapies. This resulted in loss of progress for his speech and social interactions.
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Name	Anonymous
Demographic	Autistic individual
Response	Its been very eye-opening seeing how easily society was able to adapt when THEY were the ones in need. It has made so many things easier for us. Not needing to leave the house removes some of the burden.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	remote delivery options have been a life saver, making trips for groceries is not ideal for me and if i have to do that it typically takes a long amount of time to recover/decompress (issues with lights, people, scanning noises, etc.)
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive impacts are telehealth and general social communication "meetings" like Zoom, Teams, Meet, etc. Online communication is very good for those who find it difficult to travel to community locations. Negative impacts are reduced in-person interactions so that individuals do not get to practice those social skills.
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Name	Anonymous
Demographic	Autistic individual
Response	telehealth and remote work seem to have benefited autistic people, certainly myself, by increasing acceptance of communications limitations.
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Name	Anonymous
Demographic	Autistic individual
Response	People got a lot more involved on social media as it was the only way to connect with people while social distancing, and that opened up an entire WORLD of connections to multiple autistic people. It allowed easy access to autistic from autistic that helped to provide a lot of self diagnosis to something that people hadn't been able to understand within themselves before, especially for women. Because of the way autism is diagnosed, women are overlooked too often, and Covid finally gave some answers to people whom doctors didn't notice.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Delayed identification or placement for school services support. Families are addressing behavior with ABA and sensory with OT but the anxiety continues to be neglected and untreated.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	ending of services and a failure to adapt services to include reasonable ongoing infection protocol at a prepandemic level have caused many deaths in the autism community.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Researcher
Response	increased use of telehealth may create a digital divide among individuals with SES disparities.
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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	Positive: Many families learned that their kids did really well on distance learning and with telehealth for therapies. These options prevented disruptions in education and treatments during lockdown. Negative: the total removal of most of these options has unfortunately led to major disruptions and many children, including my own, have regressed drastically. More exposure to illness at school, loss of learned skills, and overall greater anxiety.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased remote education has decreased communication disorder treatments.
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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 increased difficulty with cost of living is causing a massive and escalating homelessness problem and the stress is felt very acutely. As already being “bad at capitalism” the autistic community is doubly suffering from economic strain.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Disruptions with public education that led to staffing issues, less college graduates, lack of special ed support staff and teachers, that led to the inability to keep up with NT students. Now many are being home schooled or participating in on-line learning to catch up or re-regulate. On-line/home school education cannot replace social interactions with per's and team, school supported athletic activities.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Easy at the time as no pressures, but after the lack of support has been significant. The excuse for every failure by the services meant to help.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased fear of in-person social interactions. Increased fear of zoom-based communcation.
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Name	Anonymous
Demographic	Autistic individual
Response	The pandemic was a blessing in disguise when everyone suddenly became aware of germs and how they are spread. I’m not going to sit here and pretend I forgot the general public needed to be educated on basic handwashing. People started doing the things I had always been saying they should do, such as, social distancing, wearing masks, properly washing their hands, using hand sanitizer, and stores sanitizing after each customer. When normally I would get sick when anyone would so much as breathe in my direction, the world had finally become clean and I didn't get sick that year. Masks and proper handwashing for everyone in society are imperative to the health of Autistic people with co-occurring health conditions. Reduced in person social interactions and telehealth reduces social anxiety. Remote work and school lets us do things from the comfort of our own home while still being productive members of society. Unemployment is a huge problem for Autistic people, we need more remote jobs and we need Autistic people to be considered first for these jobs.
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Name	Anonymous
Demographic	Autistic individual; 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	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Increased remote work and reduced in-person social interactions and obligations has seemed to have a positive impact on the physical and mental health of not only autistic people. I have heard women of color on social media talking about how they don’t have to “code-switch” or worry about their hair because of being able to work at home. Working at home is a more flexible option for people who have special needs. For me personally, I prefer to leave the home regularly and I prefer to feel physically safe in the workplace. The COVID-19 pandemic has left me feeling more afraid to leave the home. I did contract COVID-19 in my workplace last year and I am concerned about what long term health effects I might encounter. A thoughtful, introspective autistic person is likely to be more affected by these concerns for themself and others than the average neurotypical person. This is an overall negative impact of the societal “acceptance” and dismissal of COVID-19 as serious.
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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	Increase in remote work has been great. I was miserable conjuring into the workplace daily prior to the pandemic. But the more recent push by many for more presence in the office has been very stressful. We demonstrated that we can do our jobs from home, but management often wants to force employees into the office due to their personal preference.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	I now better appreciate how workplace flexibilities, including remote and hybrid work, are accessibility issues, and how unduly requiring employees to return to the office (without a business need) can unfairly disadvantage workers who do their jobs best from home. So to improve workplace accessibility for autistics (as well as many others), I want to see a greater push for and normalization of remote work flexibilities. I certainly work best from home - as someone who is autistic, I save physical energy by not commuting, experience less distraction within my home office, and reduce stress by having better control over my environment, including the ability to step away to rest on short notice.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	School children in general have been most affected by covid-19. Positive impacts, family time sometimes and a slower pace.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	All of the above - more entrenched social isolation (and distrust)
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Name	Anonymous
Demographic	Autistic individual
Response	Disruption of services resulting in homelessness and loss of healthcare.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Flexible workplaces allow for us as parents to be able to WFH when daughter is not able to go to school. More people needing to access MH supports which leads to more pressure on the public system and less availability of good quality practitioners
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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
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Less socializing, which for some autistic people can be soothing, but for others it can be more difficult to learn more language and socialize (especially small children).
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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; Representative of advocacy organization
Response	Increased remote educational opportunities and employment opportunities. More respect for personal space, and more acceptance of non-social time - those are all positives.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased use in telehealth, availability of work-from-home jobs and classes, and no-contact services like store/restaurant pickup or delivery are all positive changes. It means better access to care, accommodations for work and school, and the ability to still get food if you feel overwhelmed, respectively.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	disruption in medical services and increased use of telehealth fora few months overall it was minor
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Name	Anonymous
Demographic	Autistic individual
Response	There have been some positives from COVID. The increase of curbside pickup and normalization of grocery delivery has been helpful for many of us. However, COVID did put in more barriers to access when we already had enough problems to begin with. Social programs lack workers, which makes our services (those of us who can get them) inconsistent and low quality. Many of us also struggle with long COVID. For example, I now need a CPAP machine and have had such an increase in general body pain I can no longer walk normally. I am lucky to have Medicaid so it will cover most of my needs, but others aren't.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The increase in remote work, schooling, telehealth, and reduced social interactions and obligations has been helpful. The expectation to change from remote to in person has been challenging and difficult for many. Many with the PDA profile, find social expectations and experiences to be debilitating and traumatizing.
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Name	Anonymous
Demographic	Autistic individual
Response	The increase in remote work and school, and increased use of telehealth was positive for the autistic community, but unfortunately these were not lasting changes. More and more jobs that were remote during the peak of the pandemic are forcing workers back to the office or laying people off. Furthermore, more and more states are now greatly restricted what services telehealth doctors can provide, to the point of making it almost useless.
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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	Less meltdowns because there are less social interactions, but that also means less opportunities for growth in such areas
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The break from the need to constantly socialize in a way that is unnatural to me was very helpful to me as an autistic person. Working from home also allowed me to be much more productive and at ease, as I could control my environment and avoid sensory triggers.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of exposure regarding social and anxiety leading to increased social avoidance
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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	Positives: - normalizing not touching strangers - normalizing working from home - More widespread telehealth services - masks to reduce spread of germs Cons: - when care rationing is in effect, autistic people are more likely to be denied care - parks and other public spaces shut down - disruptions in supply chains
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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	COVID-19 has disabled and killed many autistic people, along with the rest of our population. However, the switch to having many more remote opportunities can be very helpful for autistic people, as they allow us to interact from a more controlled sensory environment.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Negative - increased isolation, inability to access virtual school and therefore causing regression, loss of/limits to services and community opportunities. Positive - less crowded and less overwhelming community interactions and events, greater understanding of mental health challenges overall (hopefully at least; everyone experienced isolation and difficult changes to routine which is a similar feeling that neurotypicals hopefully can use to relate to what autistics often feel every day), increased telehealth (helpful for both my sons who can struggle with in-person medical visits in less familiar environments with unfamiliar people).
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased work remote, families can be home and take care of autistic kids, also it's more acceptable that 0-7 can stay home instead of forced into daycare
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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	inconsistent access to IEP services, long wait lists for various services, economic hardship,
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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	All of the above.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Positive is more people seem accepting of those who don't prefer social interactions
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Benefits have been that we've been able to access more services remotely, which offers more flexibility when there may be struggles to leave the house or otherwise engage. Spouse has been able to continue working from home -- which has been extremely helpful as our autistic/PDA teen has been struggling. The disruption of the pandemic but the breaks on our teen being able to attend school, led to reduced ability to engage socially, fear of crowded spaces, and an increase in anxiety, depression and isolation.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Masks obliterated th e face - so verbal communication with enunciation is delayed in the elementary set- middle school Lacks social Skills and high schoolers cannot properly inference or utilize critical Thinking skills- all ages have issues with coping
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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
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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	The lasting positive impacts on what I've seen, the willingness to participate in group setting like community engagement project. The negative parts are finding the activities they want to be involved and comfortable with. Why not start your own small group in community with the goals of Employment and Self-Advocacy.
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Name	Anonymous
Demographic	Autistic individual
Response	Discovered how much I liked being at home
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Disruptions in services for autism, mental health and transgender care overlapping to create negative outcomes Reduced in person social interactions
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Professionals blaming covid for not doing what they should have been doing, e.g. ignoring EHCP provision, not following their promise of submitting an EHCP request for my son so I had to do that. LA using covid as an excuse. Especially when my husband and his work colleagues had to step up massively from 2020 with the spread of covid, certain LA and education professionals took a step back. Don't get me wrong, plenty of teachers went above and beyond but for 2 children who should have 1:1 support, my son got 10 mins a day and my daughter received no support. I have one child who has been failed by school and LA and now has EOTAC (Education other than at school). She can't leave the house. Anxiety has increased for all my children and I believe Covid has played a part in this although there are other more significant factors that have played a role.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased remote work and schooling, reduced in person interactions.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Autistic people have multiple co occurring conditions and are higher risk than the general public. Bc of this, they are more likely to get long COVID, be hospitalized or die from COVID. Since masking is no longer used by others, those that find masking difficult for sensory issues are no longer protected. Society and the government has failed our kids.
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Name	Anonymous
Demographic	Autistic individual
Response	Our basic human rights were taken from us for no reason and they threaten to do it again. I'm scared.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Reduced in person services has been difficult as Telehealth options can make communication more difficult, but at the same time increased flexibility with Telehealth and remote working arrangements has been very positive for many. Reduced in person interaction and environmental noise reduction during lockdowns were very positive.
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Increased remote work and school has allowed my AuDHD PDA child to homeschool and has allowed me to work almost entirely remotely. This is better for our sensory profiles and sleep patterns.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Reduced schooling
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Name	Anonymous
Demographic	Autistic individual
Response	I guess I answered the previous question more with what this one is asking. I think remote work and school is more helpful than society wants us to think. For me, it’s helped to be more at home because it made me realize how dysregulated having to be in public all the time can be for me. I also think autistic children can benefit more from virtual school than some think, as typical classrooms are overstimulating and constricting. I’ve also been more lonely from less social interaction, but less lonely from more virtual communication and more regulated from less in person social interaction and obligations.
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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	Telehealth use has been great for families of children who struggles to leave the house/leave the house safely
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More access to services from home, don’t always have to leave the house for support. Increased opportunities to socialise online which is often a more comfortable environment for autistic people to connect with others
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
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	For myself the reduced social demands was helpful, as well as opportunities for remote work and telehealth.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased use of alternatives like telehealth, awareness of neurodiversity and neurodivergent diagnoses, people having an opportunity to recognise some societal things that made life harder for them and that it wasn’t their own fault, social media sharing of information. Negatives are reduced resources.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased use of telehealth has been beneficial for us as parents not needing to Endeavour to encourage, force, coerce etc our child’s attendance at in-person appointments. The reduced social interaction, however, has not been beneficial.
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Name	Anonymous
Demographic	Autistic individual
Response	Again, I have no problem with increased remote work, telehealth, and reduced in-person obligations. The only thing I'm noticing is some business leaders seem to be having a negative reaction, and instead of compromising with hybrid work schedules, are demanding in-office only every day. It seems to be a backlash.
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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 think as a whole society has suffered trauma from the COVID-19 pandemic, not just autistic people. As we are speaking about co-occurrances, many disabled people, autistic or not, have co-morbidities that makes them more at risk if they contact COVID-19. As a society we have mostly moved on from masking and social distancing, this makes it difficult for our most vaulerable members of society to participate in school, work, and social events. Not feeling safe to participate in society makes it difficult to attend events and live a more normal life.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	COVID lockdowns were mostly beneficial to my family of autistic people, we loved it. But being forced back into society has caused massive problems, depression and anxiety as well as disinterest and hatred of work.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Having it be more socially acceptable to avoid social interaction and contact, more services are available online (telehealth, jobs, etc)
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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	Increase in remote working has definitely been a positive change, but autism can be very lonely to experience without at least a few solid relationships to lean on and COVID definitely took some of that away. Telehealth is a positive change, but the schedule II drug distribution issue for ADHD medications has been terrible. The strain of the economy has really hurt people with disabilities because so many of the accommodations needed are coming out of pocket and things are so terribly expensive now.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Personally, I have had an even harder time reintegrating into society than pre covid. Once I was able to be comfortable with my mostly sedentary way of life it’s still been really hard to get “back to normal” and engage with society in the level I used to.
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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 was in early elementary education - so he worked on phonological awareness through virtual learning. The effects of virtual learning not being successful still is a challenge.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Impedes social interaction and supports
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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
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Name	Anonymous
Demographic	Autistic individual
Response	Had become autistic after a flu vaccine reaction. Have very little social contact so felt that others also got to experience what those with autism face everyday.
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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	Remote work has been a blessing for those of us with sensory sensitivities. The year I spent working from home was the healthiest year of my life, ironically, especially on the mental health front. Since I have a co-occurring disability that prevents me from driving, I have also benefited from expanded telehealth services. It's interesting that the rest of the world got a taste of the environment that suits autistic people best and ran away from it screaming.
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Name	Anonymous
Demographic	Autistic individual
Response	The increased use of telehealth has been huge for me as an autistic person. Being able to have doctors visits in my safe place (my home) makes them much more accessible to me. I'm not overwhelmed by things like the bright lights or sounds of a doctor's office, which allows me to focus better and form my thoughts so I can better communicate my needs to my doctors. Also, many more stores started having the option to place an order ahead of time and be able to just drive up and have the store employees bring your order out to your car. This has been life-changing for me as I can make sure I get all of the things I need due to not being distracted by sensory overload while at a busy store and it allows for less social exchange, which helps on the days when I'm really drained from having to script and mask all day at work.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Removed access to supports.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The negative impact for sure is service disruption. It’s an ongoing problem now. There aren’t enough service providers and Covid made it so much worse.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My child could have been encouraged to learn more online after the pandemic on a one to one basis, but after the pandemic school went straight back to face to face and there was no acclimatising period allowed for. The child either complied or was left to fall by the way side.
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Reduced in person social interactions have impacted all people. There is a need to better understand the effects losing a year or more of education and services for children at every age. E.g. if a student missed all of kindergarten, how should that gap be addressed and how would it differ from a student who missed all of fourth grade? What should educators be considering for each cohort as they move up in grade levels?
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased virtual and work-from-home options have been very helpful and allowed me to have more self-direction and flexibility, which has improved my depression, especially at work.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	Speaking for myself, it has allowed me to experience what it's like to work from home, to have people respect my physical space boundaries, and a reduction of barriers to accessing care in a way that works well for me. Since I've been allowed to work from home, my productivity has improved, my mental health has improved in relation to my work, my job satisfaction has improved, I am able to contribute more to discussions at work. I attribute this to being able to fine-tune my working environment to meet my sensory and motor needs, as well as the changes in communication patterns as now people are more likely to contact me via text means than walk into my cubicle and start a face-to-face conversation. The same has been true in accessing medical and behavioral healthcare, where providers are much more likely to have online scheduling systems and offer telehealth visits. Conversely, since the ending of the state of emergency, I often encounter people who are uncomfortable with me continuing to wear a mask. Masking provides me with protection against NT misinterpretation of my facial expressions in addition to protection against deadly diseases (I haven't been sick in 4 years, compared to every 2-3 months before masking everywhere was possible). I wish that the benefits of masking as a common choice in society had been lasting.
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Name	Anonymous
Demographic	Autistic individual
Response	It's been incredibly positive to have doctors do more virtual appointments.
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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	Increased use of telehealth has been wonderful, but being used to being in my house all the time has made socializing and being active a lot more difficult. Some people may have been on track to get a diagnosis or specialized treatment but the shutdown made it more complicated to seek any type of help
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Name	Anonymous
Demographic	Autistic individual
Response	Telehealth has been a godsend, as well as reduced in-person interactions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Inability to find respite providers.
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Name	Anonymous
Demographic	Autistic individual
Response	I was not a huge fan of the telehealth thing because it resulted in a misdiagnosis. However since there was less social requirements it was better for me. The personal space I require was accommodated for. It was easier to interact because I only had to change half my face expression wise. And I found myself wanting to be more social because I had more energy.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All the examples above. Harm caused was unprecedented, irreparable and inconceivable.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I faced loss of whatever few existing services for autistic adults we had. I had to move to another state to feel somewhat safer. People in general caused me to lose faith in humanity because they laugh about COVID vaccines, COVID deaths, COVID disabilities because our government dropped the ball and threw the vulnerable under the bus multiple times. We have more COVID deaths right now than during the entirety of the pandemic because we dropped masking in healthcare facilities - the last remaining safe place for the vulnerable. I worry what will happen as antivaxxers bring back measles and other diseases because they still push the myth about vaccines and autism.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	loss of acquired skills due to loss of ESY, or disruption in services, or their routine. Everyone handled covid in their own way neurodivergent or not.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Positive: increased remote work and school, increased tele-helth, reduced in person social obligations.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	I have not noted any decrement in the services I and our CHMC provide.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Reduced social interactions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son, as a lot of autistic people, tends to isolate. Virtual everything has made this much easier for him to do which is NOT a good thing. Isolation increases levels of depression and decreases motivation. I’m working against a tide of people wanting to provide services virtually while he needs in person interactions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	About the same as most people, I think. Deeply reduced care and assistance options. A social system that doesn't give a [profanity redacted] whether disabled people die.
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Name	Anonymous
Demographic	Autistic individual
Response	Throughout the Covid-19 period, I found myself grumpy and frustrated, possibly due to the overwhelming news and social media. To cope, I heavily relied on takeouts for comfort. Being a reserved individual since childhood, the solitude during Covid didn't bother me much, but I had a lingering concern about potentially reaching the end without forming any friendships. My academic performance suffered during online studies, especially in a stream I was forced into. However, I excelled in subjects I enjoyed, resulting in overall satisfactory scores. Post-pandemic, I dedicated effort to all subjects and achieved significant improvement in both academic performance and social interactions. Consequently, these changes had a positive overall impact on my mental health.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	While so many of us were deeply relieved to have less in person interactions, it also created struggles for those of us who depended on day programs for social and emotional and physical needs. It has been a mixed bag. Overall, many of us feel the increased stress of the past several years, both in changed economic realities and in changed abilities to move more freely in the world.
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Name	Anonymous
Demographic	Autistic individual
Response	Positive: remote options for work and school, reduced in person obligations, mask removes perception issues Negative: disruption to normal service routines, restructuring of society, negative health perceptions
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Name	Anonymous
Demographic	Autistic individual
Response	One positive impact that, I think, has been helpful for us in increased access to telehealth services.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Virtual health appointments as well as remote work and school lessons on zoom have been very beneficial for many. Also a heightened awareness of mask use for protecting immunocompromised people
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Negative
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	negative effects-reduced staffing at existing programs, long waiting lists, virtual only/telehealth services that don't really improve skills and leave the burden to parents to provide specialized teaching, long waiting lists for behavioral health services/therapy/ABA positive effects-telehealth available when child is sick or can't handle sensory input from going into offices
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Inability to get safe care because the risk of infection is too high. Telehealth is being discontinued for Medicare recipients in 2025, so how are we supposed to get safe care when COVID-19 is still spreading uncontrolled through our society. If it isn't safe to get in-person care as well, then you have to forego getting care making any of your co-occurring conditions worse. We don't get to socialize as much as those going about life like there isn't an ongoing pandemic, and contrary to past research we understand how to socialize, just in the appropriate environments.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Other
Response	Positive - Fewer expectations for social & work engagement. Flex work timing and location. Teleheath removes all of the operational tax (mental and nervous system/sensory) created during travel to and from physical locations...and saved travel time opens new opportunities to receive care. Negative - sensing the strain the covid illness or societal restrictions placed on extroverts, couples, families, essential workers or anyone who had mask sensitivites.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased work from home, telehealth options, more flexibility, wearing masks (helps with not having to worry about facial expressions), all of that has helped autistic people, but not all of that is accessible for everyone (not everyone can just work from home and be able to afford their overwhelmingly high rent that way)
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Name	Anonymous
Demographic	Autistic individual
Response	A combination of all of these, and that Telehealth is a viable resource but not a replacement for the very real support and services that are available for autistic people and more, but that these advancements do not have to take away from the benefits of either. That there can be a balance of both technological innovation and societal needs. And that autistic people should be able to have the resources and ability or should not have to feel obligated to either socially engage or distance, should not have to worry about disruption of communication, rely solely on technological means of medical care or have to replace already existing care, and that this is something that should be openly discussed, acknowledged and addressed as part of the autistic and autistic advocacy efforts.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Negative: increased social isolation, disruption of routines Positive: ability to work remotely in environments that we’ve adapted to meet our sensory needs, reduced expectations for in-person social obligations, greater availability of telehealth services, more options for delivery and curbside pickup of food and goods, more services that come to your home or are available online.
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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	I like being able to work remotely whenever I want because I can choose not to interact with others when I am feeling overwhelmed, I don't have to be interrogated every time I display Autistic traits at work, and I can move around as much or as little as I want which helps me focus.
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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
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	As I mentioned in the previous question, the virtual school was useless for my son; he was unable to engage via Zoom at all. For a while, his Applied Behavioral Analysis (ABA) services also stopped, which had been his only way of learning anything since he was 18 months old. (He is unable to learn at school because it's insufficient repetition, which ABA addresses). However, in-person school does serve the function of providing social interaction, so he missed that during the pandemic. During the shutdown phase of the covid pandemic, he had nothing in his life at all except interactions with me, who had to work remotely fulltime, and my daughter, who was facing her own struggles with virtual high school classes.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I like that telehealth is so much more common.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Increased remote work and healthcare has been the single best thing that has ever happened to my mental and physical health as an autistic person. I wish that things would go even farther, and that the default (professionally, socially, and medically) would be that everything is done virtually, and move to in-person only if virtual doesn't work. However, I do find that it's harder to see a medical doctor now. Doctors are quite booked up and like to get through the appointment as quickly as possible.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Anonymous
Demographic	Other
Response	More use of video conferencing for meetings and some activities.
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Name	Anonymous
Demographic	Autistic individual
Response	All sorts of things for me. I struggle to find quality friends. Then again lots of people do regardless of neurotypical/neurodivergent status.
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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	disruptions in services
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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
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Name	Anonymous
Demographic	Representative of advocacy organization
Response	academic skills are set back, reduced social interactions
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Break in providing regular service
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased use of telehealth has been very positive. Insurance should keep covering that. The serious lack of behavioral staff is a huge problem. DSP, BCBA. RBT, etc are so hard to find and keep.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Before Covid-19 we had an incredible support system of providers in our home that walked alongside us and supported our family holistically. We lost those providers due to in-person services being suspended and we have yet been able to find replacements.
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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; Other
Response	See previous response. EXTENSIVE and life-altering, not to mention exacerbating to all existent, autistic challenges.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Remote work, school, and healthcare may have helped some autistic people communicate and socialize more easily, learn more effectively, and get work done. For other autistic individuals, remote communications may have had a predominantly negative effect on day-to-day effectiveness, and emotional and social learning and growth. Many autistic people may have experienced both positive and negative effects from pandemic-related societal changes. Reading body language is harder to do when meeting with someone remotely. Autistic people's ability to read others' body language and be aware of their own body language and emotions (due to lack of feedback from others) may have been affected.
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Name	Anonymous
Demographic	Autistic individual
Response	Terrified to go anywhere because I am already immune compromised and no one will enforce public safety masking or immunization. Haven’t left hone but for doctor appointments in over eight years. This does NOT help my already struggling state of existance.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive: increased remote work and increased use of telehealth. Negative: perception that Americans don't care enough about people with disabilities to use prevention strategies consistently
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son lost his employment which he had for 13 years because of Covid. When it was over, because of staff shortages, he was unable to locate a job coach. His mental health and self-esteem suffered significantly. This has been devastating. My son lost his employment which he had for 13 years because of Covid. When it was over, because of staff shortages, he was unable to locate a job coach. His mental health and self-esteem suffered significantly. This has been devastating. He became more isolated and depressed. He cries a lot.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I have not seen too much other than maybe a little regression in school or interaction with peers as people were not engaging much in person, lack of good medical care as it was all telehealth
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We had a provider shortage prior to the pandemic that is now exacerbated. Telehealth was helpful during the pandemic and still is. We are still in the process of recovery from the pandemic.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased remote school was difficult for our daughter. Not being able to see a doctor in person and not being able to fine doctors that help with autism in old teens.
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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
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	provider changes increased virtual supports closed programs lack of staff
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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; Family member of an autistic individual; Service provider, health provider, or educator
Response	Positive impact in increase in working remotely and telehealth services.
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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	For some autistics a net positive during COVID-19 was remote work, remote schooling, more available grocery pick up and delivery options, as well as Telehealth appointments. Social interactions can be extremely distressing for autistics which can cause anxiety, depression and meltdowns. The ability to focus on work or schooling without distractions and the social interactions that can hinder the ability to succeed in those environments.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Negative - disruption, increased health anxiety, more illness, longer waiting lists Positive - more work from home, more telehealth,
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	You need to do this research. It has been a tragedy. Absolute. While telehealth is really important, it is NOT an excuse to NOT get people engaged, active and happy.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Social interactions
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Son died before covid. Since he mostly self isolated, didn't understand people and didn't know how to interact, I doubt covid would have affected him much except for wearing the masks.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Many to most of autistic children require routine. Everyone's routine changed dramatically because many things could not be done in person. The closure of special education classrooms around the country impacted a generation of ASD children. Virtual learning does not work for a ASD child with intellectual disabilities with severe ADHD.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	I think the greater integration of remote work/school has likely been overall positive by creating more opportunities / lessening in person demands that may otherwise impeded success. However, a negative issue is that by reducing in person requirements, we may be impeding autistic people's learning (in the way many students' socio-emotional development was impeded during the shutdowns). This could exacerbate / extend difficulties to engage "in real life" and I worry about the potential contribution to isolation longer-term for people who may still want to have in person contacts (but will have less 'practice' navigating such environments)
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	See prior question/answer. 1. We had multiple psychiatrists after moving to a new community who never once saw my child in person. Try doing telehealth with a ASD person and getting any meaningful interaction, a good assessment or plan. 2. I estimated all my kids were academically behind 18 months at the beginning of the hybrid year, and gained little academically during it, while suffering emotionally and relationally due to the isolation from peers. My child with autism initially lost all services during the shut down, and when he transitioned to online learning, he was 100% unable to stay on task, complete assignments, or perform on tests, he requires 1:1 for all computer based learning, or will accomplish nothing. Where he was on grade level pre-pandemic, He is now at least 4 years behind in reading and writing skills. Minimal improvements seen in social skills, and only in the last 18 months.
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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 only positive I see from the COVID-19 changes was the access to telehealth. Although therapies like OT, PT and speech were super challenging for my son online (he was 5 at the time), it's been very useful for me for ongoing checkups on things like his ADHD medication. I no longer have to pull him from school and bring him to a doctor's appointment. I can have it after school and take it online from my home. The most negative impact from Covid-19 was the remote schooling. Both my NT child and my ND child struggled with this. Both are now academically behind in a subject area. In Washington state, we were the last state in the country to go back to being fully in person. When kids were sent home in March '20 in Washington, they did not return to in person learning (and it was only hybrid) until February '21. They did not return to being fully in person until August '21. Cushioned grades are not showing the true reality of the impact this had on academics and learning. Kids with autism and other co-occurring conditions will feel these delays and their impact even more.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Increased use of télé health and increased remote work, lack of attending and family support and education for remote work, family obligations juggling, neglect reduced in person social interactions and work and other obligations disruption in services, nutrition snd food scarcity
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Name	Anonymous
Demographic	Autistic individual
Response	Reduced social obligations in person
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The pandemic has reinforced my introverted nature as an autistic person. I am struggling to perform socially the way I did before COVID. The world feels louder, brighter and more chaotic than it was during lockdown. My threshold for coping has diminished telehealth care is harder to navigate with autism. I struggle to communicate over the phone
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We love telehealth! It's improved our access to care
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I feel that the lack of in-person social interaction has brought comfort to my autistic daughter, but at the same time, it reduces the opportunities to do social activities that would mitigate symptoms. She is very isolated and there are fewer ways to help her interact. In other words, she can't learn to act within social boundaries if she is not interacting with people. It has increased the mental health challenges. During covid, it was easy to not shake hands or not interact personally. Now that covid is not viewed as seriously anymore, people (especially potential employers) accommodate autism much LESS than in the past. They see her avoidance as rude rather than something to accommodate because of the autism disability. It is as if she has to deal with the stigma of autism in addition to the stigma of social avoidance behaviors post-covid.
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Name	Anonymous
Demographic	Autistic individual
Response	The positive impacts that societal changes due to COVID-19 have had on mental and physical health are the increase to remote work and school and reduced in-person social interactions and obligations. Because there has been a decrease in social expectations for frequent in-person interactions and increases to alternative online options, a few ASD individuals and adults have expressed a decrease in anxiety (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9887236/). Having more remote work options as accommodations and/or having more remote jobs available for autistic people will benefit the community who wants to and is able to work. Increased use of telehealth has both positive and negative effects. Telehealth has given autistic the opportunity to receive mental health care without having to leave their home and worry about transitions, but if they do not have good internet, a private room, and adequate equipment, this could be a negative outcome with the increase in telehealth. However, disruptions in services and more challenges to accessing healthcare have had greater negative impacts to autistic individuals and their families. Getting a hold of a person has become more difficult in general, but especially for healthcare services. Making phone calls, appointments, talking to staff, etc. are already daunting tasks for autistic people, but their anxiety, burnout, and frustration can increase when access to someone is stilted or never resolved.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	The main positive effect of the pandemic for care of those with ASD and other mental health conditions was that we learned how to perform and be reimbursed for telehealth. I do not think that remote ASD evaluations are ideal, however, virtual follow-up care for coexisting mental, behavioral and educational concerns can often be well addressed by telehealth. This is something we need to preserve. It allows parents who are coping with stresses at home to access services even if someone at home may need them or the weather is terrible or their car has broken down.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	increased remote work and services which are not always appropriate for this population. Disruption in services, and therapies, increased telehealth treatment.
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Name	Anonymous
Demographic	Other
Response	The increased expense to have groceries shopped for and delivered is not within the limited financial means of someone living solely on Social Security Disability. Plus, we miss out on all in store sales. Quality masks are expensive for someone living on Social Security Disability. Doctor and dentist office personnel disregard the risks for someone unable to be vaccinated, living with immunodeficiency and unable to afford immunoglobulin replacement treatment. They are unmasked and roll eyes if you ask them to mask up.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Increased remote work has been so helpful. I don’t have to worry about masking my BPD & autism symptoms nor receive micro aggressions about it. I like that I can also schedule more appointments online so I don’t have to call and talk to someone on the phone.
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Name	Anonymous
Demographic	Autistic individual
Response	The only good thing that happened for me is that I can wear a face mask whenever I want in public and no one makes me take it off now. I would prefer to work from home, but I've never had that opportunity, even during covid. Most places want you to go back to work in person now anyway.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	More telehealth is good. Reduced obligations were nice.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Our older son was 3 during the pandemic and that's when we realized that he was autistic. He was diagnosed during the pandemic, but largely unable to receive services due to wait list and the difficulty of remote services. Isolation, lack of peer interaction, and a pediatrician who insisted "it's just the pandemic" contributed to his ASD challenges being worse than they are now. The good news is that with services and support, our son is doing very well at this point. But he missed a year of important social development and peer interaction, and so he's playing catch-up. The other problem with covid is that anti-vaxxers often point to a discredited study that suggests vaccines cause autism. This is false but it causes some parents to avoid vaccination.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Postive: new, more accessible modalities (namely telehealth). Negative: bottlenecked services and supply chain failure preventing much needed services/interventions/treatments; reduced masking demands=less burnout; social isolation; new paradigm shift of mental health awareness (self care movement supports mental health support)
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Name	Anonymous
Demographic	Autistic individual
Response	Increased remote work is helpful, although finding good remote work has been increasingly difficult as many push for return to office policies. For many autistic people, prolonged isolation during lockdown also meant getting out of practice masking. Masking isn't good for mental health, but it is often unfortunately required for gainful employment. Reduced demand for in-person social interaction is a mixed bag. The idea that autistic people don't want any social contact at all is misguided - the quality of the social interaction is important, and while lockdown and remote work reduced the kind of water-cooler office small talk autistic people tend not to like, it also reduced access to meaningful and rewarding social contact that everyone needs. During and post-COVID, there has also been a breakdown in some social norms about kindness, decency, politeness, etc., that is not about autistic people at all, but we especially suffer from people around us being more rude, impatient, or potentially abusive or violent where social interactions were already more difficult.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Separating people increased fear, depression and anxiety. This and wearing masks have delayed speech and reading, as well as socio-emotional learning.
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Name	Anonymous
Demographic	Autistic individual
Response	Most of the (temporary) positive changes were clawed away by institutions who want to get “back to normal” when normal was really bad for some autistic folks & others. Working from home, telehealth appointments, and remote options for attending conferences and other events are all things I had access to during the first 2 years of COVID but have now been dropped. One positive thing that has remained is that most work meetings are still via Zoom so we can stay in our own offices.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Much learning was lost during COVID lockdown. It was never made up.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Disruption of services and classes
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I think the COVID pandemic was tramatic fir children with autism and their families. Working remote with our son was extremely difficult. We had to be the teachers and therapist. There needs to be a better system set up when special needs kids have to work from home. There needs to be more resources available to the parents.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The positives are more things are online instead of in person. For me that means I feel more comfortable as I struggle with social settings and cues.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Reduction in adult autism services due to staffing crisis. The government still has not learned to fund increased wages for this much needed profession.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All of those mentioned above
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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 due to COVID-19 changes people with ASD (and basically everyone) avoids to have any social interaction. This situation impacts autistic social skills.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All the examples given are things we experienced, too, and they did increase our adult child's isolation, which worsened her moods and anxiety. Her therapist even commented on how poorly Zoom calls work for her. It is as though she is watching a program on television, and she focuses primarily on watching her own image. As a result, communication is worse, and she is less likely to pick up on social cues.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Ahh, answered this previously. The isolation and lessened in-person interactions have taken a heavy toll on my son's mental health and emotional well-being. He lost his jobs, and lost his way. Sitting home day after day after day with only his parents to interact with has led to major regressions in behavior, understanding and ability to perform adult tasks.
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Name	Anonymous
Demographic	Autistic individual
Response	To those of us who become more distressed at losing their normal routine, it was damaging. But to those of us who struggle in highly social spaces, it was a nice reprieve. Seeing a therapist over telehealth has been helpful for me for sure.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Benefits: (1) Increased discussion of mental health in society (2) Increased remote work and work flexibility (3) Increased concern for spreading any illness Negatives: (1) Increased cost of living (2) Increased job market volatility (3) Increased mental health concerns Autistics sometimes struggle to maintain employment due to lack of accommodations, personality conflicts, and low energy.
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Name	Anonymous
Demographic	Autistic individual
Response	The increase in remote work has been extremely beneficial in the employment of autistics. The decreased care for public health has been very distressing for many autists who use masks both to hide unnatural facial expressions and to avoid the spread of coronavirus.
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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; Family member of an autistic individual
Response	Reduced in-person social interactions and obligations.
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Name	Anonymous
Demographic	Autistic individual
Response	Telehealth has been helpful so if I have a migraine I don't have to drive, and I don't have to be around people as much which feels safer. I like not having to be around people as much and used the pandemic as an excuse to avoid some social situations. I feel like people, especially allistics, don't really take covid seriously anymore though which is very unfortunate.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased Hybrid School was great for me, but the way things changed in retail was rather horrible. Zoom meetings are artificial but a little less stressful than in-person meetings. A lot of jobs can't go hybrid, and that's where people seemed to get worse to all employees, which made things worse for anyone there. Since, I was working retail and currently work at a car dealership, these are both included. Also, I hate telehealth - talking over a phone about your Epilepsy doesn't allow for legit medical tests that can help a doctor determine change in condition. I apply that same logic to a variety of chronic conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Being at home I was better able to see how my child was not leaning - and after 18 months of legal battles was able to achieve out of district placement and she is now where she needs to be
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Name	Anonymous
Demographic	Autistic individual
Response	Covid has been a largely insulating epidemic, all new digital connection possibilities aside. There have absolutely been disruptions in services, including but not limited to mass shortages of medications, and the increased reliance on remote work and schooling has made traditional socialization much more difficult, especially for those who already struggle with social norms. Covid became an excuse to isolate oneself, making it exponentially harder for people with social struggles to get back into the world and be social again. Personally, I have much more social anxiety now than I ever did pre-pandemic. I find it much more comfortable staying at home by myself, when I know that pushing myself out of my comfort zone is necessary for my socialization and mental well being. But being immunosuppressed, I'm even less inclined to risk leaving my house in fear of exposing myself to the continuing ongoing threat of covid. The pandemic never ended, regardless of how people feel about it.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Access to telehealth has improved Provider burnout Workforce crisis
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Remote school was the BEST idea and plan of action in regard to protecting kids and everyone's health in the midst of the COVID-19 Pandemic. The DELIVERY of education during this time was the WORST. Teachers, tools, and technology were horrible. More than a year of education was lost. Teachers gave up. We saw it.
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Name	Anonymous
Demographic	Autistic individual
Response	COVID-19 was a major disruption to the routines of almost everyone on earth. For autistic adults, like myself, who are heavily reliant on routine, this was and is a huge problem. I am 38 and have managed my whole life by maintaining strict routines and structures in order to function as normally as possible. That all collapsed in 2020 and now I'm on my own trying to figure out how to rebuild routines and support structure. I'm finding this to be impossible without help. But no help is available. This impacts my mental health, my ability to work, my ability to care for myself, and my marriage even ended. It's devastating.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	It provided alternative educational and work conditions that were beneficial to those that found the typical environment stressful.
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Name	Anonymous
Demographic	Autistic individual
Response	Positive and negative impacts may depend on each Autistic individual. Personally, positives include less face-to-face interaction with strangers and mean people and easier access to online school, health appointments, and shopping. Negative impacts include less face-to-face interactions with loved ones and worsening of physical and mental health symptoms.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The positive change from covid 19 is the increase in autistic diagnosis for adults, and seeking help for mental health. The increased availability of telehealth for doctors and therapy has been positive.
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Name	Anonymous
Demographic	Autistic individual
Response	It's much harder for anyone to get hired for a job, and autistic people are often not hired because hiring managers will favor non autistic applicants and discriminate based on requests for accommodations in the work place, as well as wording their rejection differently or not giving a reason at all in order to avoid lawsuit. Autistic people that are occasionally hired to a new job have a much harder time keeping that job due to the same discrimination. Managers will find a reason that is unrelated to autism to fire them for even if it's false, or in the case of at will employment they won't give a reason at all. Reduced in person interactions can help sometimes, but other times it means more phonecalls which can be a detriment because multiple phonecalls can be overwhelming due to being unable to understand tone and having no way to see the person on the other end to look for clues in body language. Telehealth can be helpful in some cases but in cases like seeking therapy it can be detrimental to the treatment being effective and cause anxiety due to internet access, connection issues, and having a totally private space for a long enough time to talk about private health issues with no possibility of being overheard.
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Name	Anonymous
Demographic	Autistic individual
Response	I think the decrease in being able to go out in person and actually talk to others and do things we enjoy outside of the house has affected us very negatively. It’s hard for autistic people to deal with change so taking that away and then giving it back, especially when we already have a hard time with social interactions is so difficult and hard for us to navigate.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Covid presence interrupts routine, lack of focus conscious behavior amplifies concern of spread, lack of information literacy from allistic is deeply frustrating, mandating return to offices and in person interaction increases anxiety. Ableist policies on lax covid regulations extends to other disability inequities including autism.
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Name	Anonymous
Demographic	Autistic individual
Response	The positive would be more resources from home but that’s about it. Life has got harder to navigate since 2020 and society is more difficult.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Remote schooling is totally ineffective for my son. He should have compensatory time added after he “ages out” of school. Staying home caused a lack of physical activity, and increased separation anxiety on return to school.
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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	telehealth was helpful but reduced social interactions were detrimental
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	His reduced in-person social interactions have changed and really doesn't like to go traveling like he used to in the past.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	increased isolation
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Telehealth has been helpful. Remote work has been helpful for autistic individuals and their families. The acute shortage of disability services providers is at a crisis for people with complex autism that requires 24/7 support. Caregivers are burning out and quality of life for the individual is at very low levels.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Lack of experienced staff they are burnt out, inpatient, low income, low morale and lack empathy. On the job training is needed before the work alone by seasoned employees.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The Covid epidemic has caused many disruptions in community functions. With this lapse in people coming together some people are disconnected for their communities causing higher amounts of mental health issues.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Telehealth is amazing life has changed, online community has been amazing, struggle socially anyways, remote work and school seems like a positive change revolutionary for this day and age
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Name	Anonymous
Demographic	Autistic individual
Response	Positive for telehealth, remote work, and anything that can be done online. Negative in that it increases isolation and misunderstandings if everything is online. As a personal preference a hybrid model with mostly remote is ideal.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I massively benefitted from the expansion of telehealth services. My executive dysfunction and difficult with transitions makes it very difficult to leave the house sometimes, and telehealth has been extremely helpful for me. I also benefitted from the expansion of curbside pickups and shipping options since I struggle with overstimulation in stores. I also found that masking made me feel less pressured to mask all the time which was a pleasant shift. I also enjoyed the increase in virtual interactions with friends since it was more comfortable for me. However, the way people responded to the COVID pandemic was extremely distressing to me. People refused to mask, were verbally or even physically aggressive to people who did mask or isolate, and generally expressed disregard for communal well-being. It caused an increase in my anxiety and led to a lot of rumination. The aversion to public safety measures made me feel extremely unsafe leaving my home and was very distressing to me.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	What limited amount of social skills I had were lost through lack of social interactions. Remote connections are not the same as in-person connections.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I prefer virtual interactions over in-person, so this has been okay for me to transition to. Being isolated to lockdown wasn't that big of a deal for me as far as mental health goes. I love being by myself. I dont have friends and my soon-to-be fiance is a gamer so I just got a new hobby. I also started my journey of self-discovery and found the RAADS-R. I scored a 145 and sat there and cried. Everything made sense for once.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I think being able to work from home options have been super positive. Working from home allows us to avoid masking ourselves to the point of exhaustion. I find I am not as overstimulated and I have more energy to complete day to day “normal” tasks than before. I can still socialize over zoom/phone with work related people but also have more energy to socialize with friends/family. It feels much more doable and life feels more balanced overall.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	with so many people staying home and getting their infomation first hand from tiktok or other places-where professionals and educators can educate us right there at our fingertips; we have been able to connect and educate oursleves within the autistic community, and help a lot of people get self diagnosed which turns to getting a formal diagnosis but again, the wait list for an evaluation is ridiculous. This is a great thing! But now the government(and education and medical boards) need to catch up!! We are angry with you.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	One of my autistic adult children cannot interact online or on the phone--it is too anxiety-provoking for him. During the pandemic, he lost access to his psychologist for 18 months due to the counseling center using telehealth. Starting back up after that 18 months was difficult, and it was like starting all over (he does not like to leave the house, either, so after 18 months of being home, he experienced severe anxiety when it was time to go back to the counselor's office.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased ability to do remote work a huge benefit for those with Autism
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Definitely, heightened the anxiety and depressive states due to disruption in in-person school attendance, rupture in school friendships, being surrounded by family members who were working remotely, fear of the disease and death, being stuck in the house, and difficulty in finding an in-person therapist.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased remote work in some areas has been a blessing. We don't worry about childcare. We are not comfortable having our non-verbal son in daycare (we have found that they cannot accommodate his needs in the way that we need them to to maintain consistency). A bit more compassion for workers in general came of it but that compassion seemed to have has an expiration date
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	All of the above examples.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Negative- Lack of resources and accommodations Positive- Telehealth therapy
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has been negatively impacted by the disruptions in services, reduced in-person social interactions, and ongoing discussions about Covid and RSV and other illnesses impacting our nation.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Online school was a huge positive for her as mentioned earlier. It was the only time she actually felt comfortable in school. She also likes telehealth appointments and not having to wait in busy waiting rooms. I do believe her overall anxiety has also worsened and she has not had the social interactions that she did in the past. There was a time she didn't want to leave the house. She is past that now and doing much better. However, it took a while. Also, if someone is sick she worries it is COVID. She is very cautious and it is hard for her to understand why some people don't wear masks when near her or things like that.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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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	Telehealth is convenient for many families.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	There needs to be more caregiving, respite, and supportive housing for those with profound autism and co-occurring issues. COVID has broken the fragile caregiving system in place - people need to paid more money, get benefits, and have caregiving serve as a real career. Families need more support if we are going to continue putting the burden on them - respite, caregivers, therapy, and skill building.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Greater access to remote work, greater flexibility on schedules, more awareness of remote schooling
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Positive: - increase in remote-access services like self-check out, food pickup shelves, telehealth, more written chat or email communication options, online options for filing paperwork - decreased social obligations Negative: - increase in health issues from compromised immune system - medical system more full and less available - medical system more scary to navigate because of higher risk with COVID being so contagious
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Postives: - access to Telehealth appointments rather than having to schedule a time to meet then travel out of you way to see that person. - ability to take exams, quizzes, etc. remotely which is more accepted -within the safety of your home frequently Negatives: - limited access to friends &/or partner - lack of motivation towards classes/exams - harder to pay attention in said above and within job - changes to how frequently you can see friends - sensory issues with masks not fitting well (which is why I wear disposables)
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Covid caused a disruption to routines and caused less social interaction which autistic people may thrive on, but it also created a more accessible world for many with telehealth appointments, other virtual gatherings, more people to relate to about their experiences online, etc
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Name	Anonymous
Demographic	Autistic individual
Response	Positive remote work. Reduced in person interactions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Societal changes due to COVID-19 have resulted in educational losses due to online learning, attrition of direct support professionals due to poor pay and increased risk for illness and fewer opportunities for in-person interactions resulting in loss of social skills.
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Name	Anonymous
Demographic	Autistic individual
Response	Remote work, school & health services being normalized on a wide scale has vastly increased access to all three. Disruptions to public transportation and supply chains has decreased access to a wide range of goods & services.
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Name	Anonymous
Demographic	Autistic individual
Response	Ability to work remotely and use of teleheath services have had postive impacts of my mental health, as they have provided a lesser deal of anxiety with interactions with medical professionals. One of the greatest challenges I have faced with in person physical healthcare was the distance I had to travel for specialized care, such as when I had to travel from my home in a rural area of New Jersey to the Children's Hospital of Philidelphia or hospitals in areas outside of New Jersey in the New York City area. This provided me and my family with higher levels of anxiety due to the need to travel and our unfamiliarity with traveling in more urbanized areas. About a year ago, I was involved in a serious car accident and have had anxiety regarding car travel ever since, so being able to have access to telehealth appointments has decreased that anxiety, the anxiety of in person social interactions, as well as anxiety that comes with spending money relating to the necessary travel to in person appointments. In recent times, many of my providers have repealed their use of telehealth services and my college no longer allows students to choose whether they may attend class in person or virtually as they have felt virtual options were no longer necessary and because many providers or teaching staff prefer the in person interaction, though it is important to recognize the benefits of virtual interactions for autistic individuals.
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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	Access to services. In home support
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Positive impact: increase in app development that allows visual communication, like food ordering or purchasing things to be picked up curbside/drive up. Increased online business conduct will enable families to stay home and accomplish the same thing without minding autistic individuals in crowded places. Negative impact: reduction in places we can sit and enjoy. Therapists and other professionals wear masks that prevent autistic people from understanding/seeing critical non-verbal cues.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The negative side of things, I'm even more mistrustful of our government, federal and state. I'm more mistrustful of doctors and mental health providers. I lost my ability to function like a "normal" person. I had a nervous and mental breakdown. I experienced skill regression, that of which I have no recovered from. If I wanted to access public services to get help, you have to wait 6 months to a year to see anyone. Everyone wants to stay home now, or doesn't have the money to go out, and we don't have community spaces, those all have been defunded. The American people are unwell, even the providers. Insurance is a joke, we keep paying more for less coverage. Work from home actually was fine for me. I wish I could still work from home, but my school district in fully in person now. What I also see with working in public education, the younger generations are suffering terribly, and don't care about an education. Again, these kids, and teenagers have no support. My outlook on our life is pretty negative since covid.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The increased acceptance of remote work has been a huge boon for me as an Autistic person. It greatly reduces the cognitive overhead of being in an office, around so many other people, and expected to follow certain social norms. Text communication works better for me generally, and it's more acceptable to use it in a remote environment. I can also set up my environment the way that makes me most productive. Increased telehealth has also been beneficial, as it's increased access to therapists, making it easier to find one that meets my family's needs. However, it seems to have decreased the number of diagnostic providers, who tend to be separate from the everyday providers, making an already difficult thing nearly impossible.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Having more access to remote services and increased normalcy of remote work has been very beneficial.
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Name	Anonymous
Demographic	Autistic individual
Response	I think Covid had a positive affect on society with telehealth, work from home, and remote schooling. I can control my environment at home for my sensory processing disorder. It is much less stressful, and saves commuting.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Other
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Social distancing was a momentary boon. It was easier to manage things when folks kept their distance. It was difficult in pretty much every other way.
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Name	Anonymous
Demographic	Autistic individual
Response	Work from home is part of the reason I lost my job after 6 years. I do not work well at home it is not sensory friendly and not structured enough and i would have lots of melt downs. I like structure and organization. Politics made rules very confusing and I did not know what I supposed to do or not do and everything keep changing which I did not like.
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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	Positives - remote work Negatives - lack of remote work, low employment opportunities, long COVID, disruption in services, scarcity of providers, not being able to access support
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Name	Anonymous
Demographic	Autistic individual
Response	Since we aren't taken seriously 90+% of the time, remote work has been a good thing and limited interaction/communication has made employment easier. The isolation factor overall, the lack of social obligations, while temporarily a relief has significant negative long-term impacts.
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Name	Anonymous
Demographic	Autistic individual
Response	-New opportunities for employment and engagement as more services become available online and are not dependent on in person interaction
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increased use of telehealth left many medical services inaccessible to those that cannot communicate or advocate for themselves. It made in home caregivers and therapies harder to access, further isolating those with aggression from the community.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Increased remote work and school greatly benefit those who aren't able to travel or live away from family/support people, but it's also being slowly stripped away as businesses are forcing in-person attendance again, even in situations where it's not necessary. Many services were also put on hold or shut down due to the pandemic and there aren't resources to start them up again.
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Name	Anonymous
Demographic	Autistic individual
Response	Less in-person interaction has been a benefit for me.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	It was much better during lock down. We were paid to stay at home which would be helpful to many of us
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Name	Anonymous
Demographic	Autistic individual
Response	can't go anywhere at all because no one protects people like me anymore
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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	Structure and interpersonal relationships/daily interactions with people in and out of the home are what helps my child. COVID-19 shutdown was terrible; my child lost skills he still hasn’t regained. Trying to get a neurotypical Kindergartener to attend to Zoom lessons is hard, but impossible for an autistic child.
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Name	Anonymous
Demographic	Autistic individual
Response	Telehealth has been great for improving access for me. Reduced in person interactions have been great because they're typically with people I don't want to talk to and in overstimulating environments that I don't want to be in. Autistic people don't necessarily want to always be alone, we like interactions with people we understand and understand us in return.
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Name	Anonymous
Demographic	Autistic individual
Response	The COVID-19 pandemic has resulted in mental health problems for our society across the board, autistic or otherwise. In my experience, this has led to a breakdown in civility and understanding in daily interactions and, as a result, feelings of being “othered” by people much more than before. My difficulty with expressing my own emotions seems to create the false impression that I’m doing fine, and seems to make me an easier target for those who are going through their own struggles.
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Name	Anonymous
Demographic	Autistic individual
Response	The availability of remote work almost singlehandedly saved my mental health. I was able to get through a day without collapsing at the end of it for the first time in my life, and that gave me the chance to finally recover from burnout. I sincerely hope that remote work and appointments remain an accessible and equal option to in-person options. On the other hand, my therapy appointments stopped for several years, and I didn't get adequate support adjusting to changes caused by the pandemic. I still struggle with health anxiety caused by the COVID-19 pandemic as well. While I'm back to therapy now, the break in routine has made it hard to re-adjust, and the push to get "back to normal" is disrupting the routine I got used to during the pandemic. I don't want to go back to normal. I want to keep working from home and enjoying having the ability to get through a day without a mental breakdown from stress and overwhelm caused by sensory problems and high workplace demands.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The rise in some remote services has helped, but others I think hinder. Eg, grocery pick up and remote work helps while trying to do OT via telehealth is not helpful.
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Name	Anonymous
Demographic	Autistic individual
Response	Virtual interactions such as zoom meetings, online jobs, telehealth appointments, etc. were a lot more accessible for a lot of autistic people, because it limited the amounts and types of social interactions, it provided predictability, structure, and control to social interactions, it limited the need for access to transportation, and it allowed for multiple types of communication (for example, if someone is non-verbal, whether always or just sometimes, they could type instead of speaking if they were in a zoom call). Online ordering for restaurants and grocery stores was also helpful because of limiting social interactions and the need for access to transportation.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I miss the “vulnerable populations” shopping hours. I wish that hadn’t been a thing just during lockdowns, because those were the best grocery shopping trips of my life, even if they were at 6am. I love WFH but again, it’s so hard knowing how to set those boundaries when there’s no “end of day leaving the office” to enforce it or the social component to help ease it along. I am home and alone and working, all the time it seems. I love the more prominent availability of telehealth, but it seems the quality of these providers is INCREDIBLY hit or miss, which is frustrating. The technology isn’t always where it needs to be, which is maybe even more frustrating. Combine the two and I’d rather give myself a swirly because what is the point? Half of my conditions can’t be managed via telehealth wholly because they’re controlled substance refills or require actual medical tests, so it kind of negates the convenience of it.
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Name	Anonymous
Demographic	Autistic individual
Response	Some positive changes are; The increase in availability in things like; curbside pickup, telehealth appointments, pre scheduled appointments at places like the DMV, less people in waiting rooms. These changes have allowed me to be more comfortable and stick to a routine. The negative impact is from the lack of services causing regression.
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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	Positive impacts were the increase in money for school services. When that support was taken away we felt the difference in being able to provide that amount of service. Negative were social isolation. Contrary to some myths about autism - autistic people like to socialize it’s just different than neurotypical individuals.
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Name	Anonymous
Demographic	Autistic individual
Response	-More people have self-reflected and researched autism -More people have gotten diagnosed due to increased awareness -Stigmatization that people are getting diagnosed because it's "trendy"
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Online school helped since I was able to study and attend lectures in the comfort of my home without having to worry about being overstimulated or having a meltdown in class, but being suddenly cut off from my social group due to fears of infection negatively impacted my ability to socialize once things started opening up again, as well as my ability to mask or understand social cues as well as I did before the pandemic.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My loved one lost contact with most of their friends, as well as lost their routine. This severally impacted their mental health and while we are recovering and rebuilding the affects are still felt.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	The increased use of telehealth has made mental health care accessible for me, and it has been life changing. Reduced in-person interactions and obligations has certainly been a blessing for me, but the sudden societal shift and disruption of services at the beginning of the pandemic was deeply damaging to my health, only now after years of recovery am I seeing light ahead of me. I feel very deeply for all those with disabilities and mental health issues, they are already vulnerable and in need of help the pandemic made things worse.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Remote work/school is helpful, the constant fear of getting Covid well into 2023 is not.
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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	Reduced social interactions has been helpful, as has some remote work. A quiet space I control is helpful, but video calls are very difficult—I feel under the microscope and like any flaw in my social skills will be blatantly obvious. Telehealth has been great—psychiatry access is easy now.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	1. Work From Home has majorly benefitted autistic people. Autistic people's sensory issues and tendency to be socially rejected by others are unique challenges that contribute to preventing autistic people from succeeding in on-site workplaces. Work From Home needs to be an accommodation for autistic people, because it has allowed many autistic people to thrive and be significantly more productive in work. 2. Telehealth has been beneficial. I used it for part of my diagnosis of autism.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	It depends on the individual. Increasing remote work and school, and telehealth was beneficial.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased remote work has allowed me to maintain employment
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Name	Anonymous
Demographic	Autistic individual
Response	I can't work anymore. I worked before the pandemic but my health got so bad that now I can't. Even if I was able to I'd spend most of the day terrified I'd get sick and it would get bad again. I've gone to people's homes since but I think it made my OCD worse because now it has a "justified" reason to worry about how many germs I touch
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Name	Anonymous
Demographic	Autistic individual
Response	Positive- more at home options that reduce anxiety for work, school and medical. Negative- mental health decline in general and insomnia
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	i can’t work remotely. it just simply isn’t possible for my brain to process anything that way. jobs need to support both remote and in-person employees. the pandemic also affected a lot of peoples’ ability to communicate effectively, and more support needs to be in place for people who have lost communication skills because of that.
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Name	Anonymous
Demographic	Autistic individual
Response	things are more accessible without face to face interaction now. practically every restaurant has online ordering options, many grocery stores allow for orders to be placed ahead of time and picked up without entering a crowded building, and telehealth appointments with physical and mental healthcare have allowed me to receive help in situations I would've previously been unaccommodated. negatively, the pandemic seemed to reignite the conversation about the long-discredited myth that vaccines lead to autism. ive noticed a rise in both general autism awareness (good) and hate speech/personal discrimination towards autistics, especially autistic adults (bad). the trend towards remote work is excellent, however it seems like many places of work are starting to reject it in favor of returning bodies to offices, probably to justify the overpriced real estate the business has leased. it's discouraging to see remote work as a concession to be made only when in-person work is verboten.
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Name	Anonymous
Demographic	Autistic individual
Response	One positive is curb side pick up so that we don't have to traverse sensory overload in grocery stores. More options to reduce high volume people interaction. Increase in remote work. More remote options should be available to those with autism, adhd, depression, and anxiety, telehealth briefly being more accessible made healthcare more accessible
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Name	Anonymous
Demographic	Autistic individual
Response	n
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Name	Anonymous
Demographic	Autistic individual
Response	Returning to society was a really rough transition for almost everyone. For autistics, the change was nearly impossible. A lot of people I know, myself included, have had a hard time re-learning to handle overstimulation and understimulation in public spaces after being cooped up in our homes for several years. Telehealth, remote meetings, and increased work-from-home opportunities are the best thing to come out of the pandemic. This is how we all get our lives back in the current socioeconomic climate. In 2021 I had to change career paths due to serious health issues that left me disabled, so I found my first work from home job. Working from home is the only thing that allowed me to earn an income with my disability. I've also discovered that I'm significantly more productive, both at work and in my personal life, when I don't have to expend so much energy (spoons, if you will) on social interactions with coworkers. When these interactions are limited to messaging and remote meetings, I can use much more of my energy to do my job well and to maintain my physical and mental health needs. Having that extra freedom has truly changed my life, and I think it can for a lot of neurodivergent folks. Thank you for putting out this request for public comments. It means a lot to know that somebody might be listening.
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Name	Anonymous
Demographic	Autistic individual
Response	Honestly, quarantine was so healing for me. I ahd just graduated high school, was deep in burnout. My catchphrase was, "I don't want to die. I just need to be in a coma for a year." and that's essentially what covid quarantine was. The the reduced in-person social interactions and obligations was just what I needed. I was pursuing old and new hobbies, and was happier than I had been in years. This ultimately led me to my autism diagnosis -- for years I couldn't figure out why I was so depressed. Quarantine made me realize it was my sensory processing issues tied to autism. The increased access to services via telehealth has also been incredibly helpful. As part of my executive dysfunction issues, I have yet to get a driver's license or a car, so getting to appointments can be incredibly difficult for me. Telehealth, especially for therapy and psych appts, makes this process so much simpler for me. I also have issues with change and interruptions in my day-- not needing to leave my comfort space to go to therapy or a psych appointment allows for me to devote energy that would have been devoted to transportation/acclimation
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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	Service provider, health provider, or educator
Response	Disruptions in services, reduced socialization, increased demand for virtual learning which tends to be highly stressful for those particularly with cooccuring ADHD
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Name	Anonymous
Demographic	Autistic individual
Response	The reduction in my ability to safely do in-person social interaction has severely increased by depression and loneliness. If people were required to wear masks, I could actually go out and try to meet people in person, but my safety is important to me.
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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	From my own personal experience, I have not seen any positive lasting change. A lot of people experienced negative change because of it and a lot more ableism within their day-to-day life since COVID.
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Name	Anonymous
Demographic	Autistic individual
Response	The COVID-19 pandemic helped many seek diagnosis, and the change of work styles and shift towards work from home has allowed autistic people to stay employed. increased reliance on online communication has helped autistic people make appointments, communicate more effectively with others, and take advantage of services not traditionally available to the social impaired.
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Name	Anonymous
Demographic	Autistic individual
Response	For me personally, the changes were actually great because health providers started using telehealth instead of requiring in-person visits. However, going back to in-person appointments has been difficult for me because I struggle a lot with pathological demand avoidance and I also have a lot of trouble with changes to my usual daily schedule. Leaving the solitude and safety of my apartment is upsetting to me and I will avoid it at all costs.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	COVID has had a part in exposing glaring, widespread inequity and inaccessibility that has already affected disabled people as a whole, including those with autism. I've shared that being mostly homebound, little about my way of life had changed between pre-COVID and lockdown. In terms of positives, there's more of a social awareness of disability (although it's definitely lacking still), and using proactive, preventative health measures to protect many of the most vulnerable in our communities, and increased use of technology and remote communication to eliminate risks, with the added benefit of increasing accessibility. We saw firsthand how our former way of life contributed to ecological degradation, needless extraction of resources and labor, and the exclusion of disabled people. Differences illuminated in that time helped us face the apocalyptic trajectory we all face and clearly outline changes in the sociopolitical order that would allow us to avoid that. People have become more aware and politically active. Part of the negative impact is that there's a greater divide than ever between the rich and poor, and the attitudes of younger and older populations on how to handle the existing decay of society and life as we currently know it. These aren't directly about autism, but sensitivity and susceptibility to trauma and stress are clear predictors of health, and these pressing issues are all many of us can even think about.
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Name	Anonymous
Demographic	Autistic individual
Response	Positive: reduction of obligatory social demands, greater equanimity, increased work/personal/creative productivity. Negative: autoimmune disease increased fear of interactions, reduced connection to FOO and extended family because of phone aversion (no non-verbal cues & PDA), object impermanence, very little desire for communication reciprocity
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	While being home, more autistic people were able to learn about autism and either self diagnose or seek medical diagnoses for autism and comorbities.
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Name	Anonymous
Demographic	Autistic individual
Response	Better public awareness of how health issues impacts daily life, access to remote work/school without structural issues, then taking away of that option out of apparent pettiness, reduced societal obligations, severe social and touch starvedness becoming even more common, young people in crucial development periods during that time facing huge setbacks due to isolation
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Name	Anonymous
Demographic	Autistic individual
Response	I’ve found that due to long stretches of remote work/school, my socialization skills have gone from mediocre to fumbling. I was however more comfortable/less stressed existing more privately.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Negative impacts: Minimal for my Autistic self and my Autistic teen since we’re both Level 1 autism (don’t get autism services). Our largest struggles: not seeing family (our main support network) in-person each weekend during lockdown, and increased anxiety with worries about friends or family getting COVID-19. Positive impacts: 1. Remote school & work—Fewer in-person social interactions and struggles with time management/organization (AKA arriving to places on time). 2. More telehealth—Being in your home/familiar environment helps to focus on conversation (e.g., no overstimulating smells/textures/lighting/sounds, no stress of trying to navigate through confusing medical facility, no traveling unfamiliar routes). Telehealth also makes it possible to avoid eye contact, which can be so distressing or uncomfortable for some Autistics like me that I struggle to follow the conversation. People are used to eyes looking slightly above or to the side in video calls; it’s socially acceptable. 3. Fewer social interactions & obligations—Being introverted and Autistic, people would judge myself and my teen for being homebodies and not wanting to do “normal” things on weekends (e.g., go to bars or mall for “girls night”, have playdates where kids play while moms talk, etc.) 4. Curbside pickup—Store music, noise and lighting; navigating around crowded aisles; checkout lines; finding items in the store (especially if the store rearranged); etc.; can be overwhelming.
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Name	Anonymous
Demographic	Autistic individual
Response	The reduced societal habit of unnecessary touching is good. The introduction of telehealth and other online options for obtaining services is also good.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increase in remote work and telehealth has been positive. Social isolation was difficult. Autistic people have trouble making and keeping friends. The pandemic made that harder.
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Name	Anonymous
Demographic	Autistic individual
Response	Societal changes from the COVID-19 pandemic have brought both positive and negative impacts on the physical and mental health of autistic individuals. Positive Impacts: 1. Remote Accessibility: Increased use of telehealth has enhanced access to healthcare services, potentially benefiting those with sensory sensitivities or transportation challenges. 2. Flexible Learning and Work: Remote work and school options provide flexibility, accommodating diverse learning styles and reducing environmental stressors. 3. Reduced Sensory Overload: Decreased in-person interactions may have alleviated sensory overload for some, providing a calmer environment. Negative Impacts: 1. Disruptions in Services: Interruptions in therapies and support services could exacerbate challenges associated with co-occurring conditions. 2. Social Isolation: Reduced in-person interactions may contribute to social isolation, impacting mental health and social skills development. 3. Increased Anxiety: Uncertainty and changes in routine during the pandemic may have heightened anxiety, affecting both mental and physical well-being. Understanding these impacts is crucial for developing post-pandemic support systems that leverage positive changes while addressing challenges, ensuring a more inclusive and supportive environment for autistic individuals.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I don’t think there’s anything positive that came about for COVID-19.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Lots of changes very quickly. Not great. Now people also think covid is the only bad virus out there, and more people are willing to get sick and others sick because they don’t have covid.
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Name	Anonymous
Demographic	Autistic individual
Response	All of it i guess. People in business managment especially retail and remote work have gotten lazy in creating solid teams with proper training while remaining inclusive.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Big question, small box. Disruption in quality services, socializing, safety in some cases due to DV issues or abuse at home. It's made it hard to get quality people hired in community mental health, which means less therapists and more people looking to pass the time.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	After being unmasked for so long I will never get the ability fully back. And I'm not sad about it. I'm an adult now so fewer people can hurt me. So, I will be autistic fully and unapologetically, if they have an issue with that I am confident I can get out alive. Normalization of telehealth and other non-in-person social interaction has been helpful in maintaining old connections. However it has been harder in making new ones. Physically masking was LOVELY. Goodness, getting to hide half my face me me feel so much safer. But now wearing a mask makes you a target which makes me sad. I loved not having to think about and monitor the bottom half of my face.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Disruptions of services and lack of providers, remote services which were not suitable for most autistic individuals, and lack of social interactions and experiences to work through challenges and make progress.
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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	Increased remote work and telehealth had significant improvements for autistic people by reducing the social requirements of work, school, and healthcare access.
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Name	Anonymous
Demographic	Autistic individual
Response	The increase in remote learning has really put a dent in the educational habits that I have. Not being able to physically interact with the work I am doing and having to talk through a screen has removed all connections I have with my professors.
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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	The increase in remote school and work has been extremely positive because it allows individuals who either suffer from social anxiety to stay home and work, while also helping those who suffer from health conditions to have flexibility in their schedule and also allow them to continue to work even when they are unable to leave their house. Reducing the social interactions has also been helpful since the anxiety of talking to people has now decreased.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I personally have liked the move to a more telehealth based approach. I have agoraphobia and prefer to have as little face to face contact with other people as possible. But, by not having access to in person medical care my health has deteriorated drastically.
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Name	Anonymous
Demographic	Autistic individual
Response	Allowing some services to be virtual like meeting with my case manager.
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Name	Anonymous
Demographic	Autistic individual
Response	positive: increased remote options! In medical appointments, work, shopping, etc negative- we all slowed down for a bit which was wonderful, but we are feeling left behind as things speed up again
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Once everything could be done online, it became almost impossible to get him to leave the house. I think the fear of the pandemic also did emotional damage to him. He disengaged from the few friends he had and still chooses to be alone most of the time.
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Name	Anonymous
Demographic	Autistic individual
Response	Remote work, telehealth, and reduced in person obligations are very good for autistic people as we are allowed to accommodate ourselves, and work around what our body is wanting. Uninformed people cause most of our sensory issues.
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Name	Anonymous
Demographic	Autistic individual
Response	I have heard from a lot of us that we are having a hard time adjusting back into society because we lived in a place where we didn't have to mask and the sensory intolerance was lower. We have become more introverted and are having a hard time succeeding, even more than normal.
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Name	Anonymous
Demographic	Autistic individual; Other
Response	The sharp change in societal expectations for one being sick, the increased unpredictability and lack of communication or transparency from officials who are able to help mitigate impacts of the pandemic, and the lack of more policies to ensure safe existence in society during the pandemic (i.e. mask mandates or isolation mandates, with strict regulations for monetary or material reimbursement for any losses due to falling ill with COVID-19) has created a much more stressful and intense experience with mental health disorders such as major depressive disorder or generalized anxiety disorder.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	telehealth has been extremely helpful for me. there have been periods of time where i could not leave my room, but i needed help. i sometimes prefer therapy in person but my mental health doesnt always allow for that. i appreciate being able to wear masks in public as it helps keep me comfortable. my mouth shows a lot of my emotional reaction so i like keeping that to myself. when i was employed the mask helped to comfort me. i also have contamination ocd so im happy about the increase in sanitary practices. I've been looking for some kind of remote work but there arent a lot of entry level positions that arent focused on customer service. my anxiety continues to hinder my ability to speak well.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It was wonderful for many activities to move online to accommodate social distancing. Telehealth is great, but I also mean museum virtual tours, online clubs and workshops, online support groups. My Autistic child struggles with agoraphobia, so this was much appreciated. His social life actually improved.
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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	Free Falestine!
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Name	Anonymous
Demographic	Autistic individual
Response	Increased remote work was the best thing that ever happened to me. It makes it much easier to hold a job and not wonder if I'll burnout and stop going. The increase in these kinds of opportunity for remote interaction and less in-person obligation has overall reduced the amount of stress that I normally feel when doing day-to-day operations. My hope is that we further improve upon our ability to do things in this manner. It allows me to reduce the burden on myself and keep some of that "social battery" for attempting to interact with friends and/or hopefully make friends.
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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	Oh, I answered this in the last question but the online world has been a boon. Online shopping, working, health care all reduce the anxiety of crowds, interactions and other ick. And I love video calls cuz I can see my face and adjust quickly.
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Name	Anonymous
Demographic	Autistic individual
Response	I think the simply the period of quarantine offered a period to reflect. That alone shifted the perspective on autism a lot. The world has learned a lot about autism in the time we had to spend inside, and subsequently autistic people learned a lot about themselves. Being in the safety of our own homes for months taught us how to properly accommodate our own needs, and for some we learned that we may have needs greater than we knew that we were complety neglecting. We learned how to listen and work with our brains and our bodies when we were given time off to process and recalibrate.
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Name	Anonymous
Demographic	Autistic individual
Response	I can only speak on what I have personally experienced. Increased access to telehealth and remote work has helped me access more of the world. However, because we have access to the world through the internet, autistic individuals with justice sensitivity have been incredibly active in social movements like speaking up against our government's funding of Isreal's genocide against Palestine. We have been active in speaking up against our government's treatment of disabled individuals. We have been active in speaking up against our government's treatment of Natives and other racial minorities. We have been active in speaking up against our government's horribly outdated systems, including both governing and schooling systems and because we experience great physical and emotional distress at injustices we will continue to speak up on issues like this. We are more physically separate from each other but more socially connected than ever and many of us wish to change things for the betterment of everyone.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	I think that isolation offered me an increase in mental health, as it felt like everyone was feeling how I have always felt. Remote work does not work well for me however, as routine is important and executive functioning has decreased. I have also noticed something that may be referred to as skill regression, as I can not grasp the personality or performances that I could accomplish before the pandemic. Because I can not drive, the increase in food and grocery delivery services have changed my life, as I can not yet afford to live in a walkable city. Telehealth is not something I think I would ever use, instead I choose the stress of in person appointments, as I know I can mask my symptoms easier through the phone or video call. Reduced obligations seemed to save my life, but now I have trouble rebuilding my resilience to obligations and tasks. I also struggle to rebuild any coping mechanisms that helped me get through over stimulation. I did successfully graduate from university in 2021, fully online, however it was much harder than I ever thought it would be. I successfully completed trade school after, as I sought out more guided education to keep myself in line, however I found I was no longer able to mask as I was used to, and I was noticed as very different.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It has been very difficult to readjust to post-covid society. The disruption of life as we know it caused myself and many of my autistic friends severe mental distress and depression, which many of us have never recovered from. The lack of support for autistic people during lockdowns has caused lasting impacts on our ability to operate out in the world, especially for those who were in a period of critical development at the time
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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	Family member of an autistic individual
Response	Having less pressure to attend in person events was positive. Services moving online was good. The pressure of the pandemic on people in general has made society as a whole less patient, less forgiving and more hostile, which affects autistic people disproportionately. The closing of smaller independent businesses and constant merging of larger companies leaves fewer to no employment opportunities for autistic people who need a little job in a little shop to get by.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The increased use of electronic options has been a mixed blessing. The option for Telehealth, for more online schooling, for online work options, and other similar baselines have helped me and many of my autistic friends and family. Our ability to engage the world digitally while controlling for our environment and adapting for our disabilities has been a massive improvement for many of us. Yet, the downsides have been that the increased fear in the world due to the pandemic and consistent social isolation have significantly reduced our ability to tolerate a lot of the environmental factors we previously had habituated to. This has increased a lot of overall anxiety, agoraphobia, fear of germs, and has lowered many of our abilities to effectively "mask" and engage in social niceties like we could prior to covid-19.
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Name	Anonymous
Demographic	Autistic individual
Response	One positive change is the increase in telehealth and remote work. I hope those two things are here to stay. Not being able to see my friends IRL was hard on my mental health though.
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Name	Anonymous
Demographic	Autistic individual
Response	Lessened anxiety by working from home. Less likely to get sick working from home. Increased use of telehealth. Reduced in person interactions.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote and hybrid work is life saving.
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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
Response	For some autistuc individuals, the increase in remote opportunities was a blessing, but for autistic children the transition back to school has been tough, and many are not recovering from the missed time.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	After requesting to work from home for years, I have successfully worked from home for 4 years. Come June, it is being mandated to come back to the office 3x a week. I don't think I can handle that. The infrequent days I am in office leave me drained, exhausted, and I'm likely to pass out very soon after getting home. I do not miss the exhaustion or the forced social interaction. I also have been less sick while staying home and have a greater flexibility with doctors appointments that are offered via Telehealth. The idea of having to go back to the office 3/5 days honestly makes me feel a bit crazy. I have IIH and will experience migraines that require me to lay down for an hour or so. I have the flexibility to do that while working from home. At the office, I'd be forced to take FMLA (which I qualify for) and that would be a drain on my team, my time off, and my workload.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Negative impacts abound. The positive has been increased time to self-explore and identify effective supports.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I think the growth of remote work reduced frequency and size of social interactions was helpful to autistic people at first, but now there are big movements to return to the office, and in-person social interactions are no longer requiring masks or vaccinations, making the decision to participate or not all the more difficult.
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Name	Anonymous
Demographic	Autistic individual
Response	All the delivery options and telehealth options have been amazing. I know autistic people who only shop through delivery because going to the store is too much. I still shop physically because I cannot afford delivery and I also have family to go with me and assist me. Being able to conserve energy by staying home instead of going out is extremely beneficial.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I feel a lot of positive has come for autistic people, especially in terms of remote work, telehealth and even an increase in availability of delivery and pickup shopping services. For me personally, working remotely opened my eyes to just how disabling working in an office environment was for me.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote work has been better for me. School has been difficult for my kids because cruelty from their neurotypical classmates has increased
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Name	Anonymous
Demographic	Autistic individual; Other
Response	The use of video conferencing and other means for communication that are not in person has been a positive change. Another positive change is that assistive technology has come a long way to support autistic people. Resources such as ChatGPT, text to speech with more human sounding computer or AI voices, apps that helps autistic people do things more independently are more abundant and freely available than ever before.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	[profanity redacted] Hybrid schedule. the absolute worst possible schedule for an adhd autistic who thrives on routine and systems to thrive. can’t get a routine set to save my life. work days always rotating in the office and all work can be done from home. telehealth has made going to counseling feasible. i missed a lot of appointments i had to psychically show up for. teleworking brings work/life balance
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Positive: Telehealth services, optional remote work and school when needed, reduced in person interactions and obligations, grocery pick up, more awareness of mental health. Negative: fear of Covid, increased cost of living.
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Name	Anonymous
Demographic	Autistic individual
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I think many autistic people may have enjoyed the reduced social interactions. Some haven’t been forced to exercise enough, which is difficult and bad for physical health. Being on the screen for school for more than an hour was a nightmare for everyone. It seems the schools may have learned that. Not seeing everyone get vaccinated, boosted, and wear masks causes a LOT of anxiety for us because we understand how this virus is transmitted. The infected person is the person that needs to wear the mask. And with so many being asymptomatic, it’s just horribly immoral to not wear a mask to a public place. It is also a crime that the federal government doesn’t put out public service announcements that are clear, dry and unapologetic about the facts of COVID. Everything seems to be an apology for being the messenger, the bearer of bad tidings, instead of just giving us facts. We all need facts to be able to make good choices. And honestly, the government needed all along to have actual laws in place. But instead it was an allistic popularity competition. So Covid was and is frustrating, and shows us that we would have a much better and safer world if people were more autistic, literal, honest and ethical. This is where the allistic fail, in disseminating info and making good laws. It’s been frustrating to watch most of society live as if things were the fairytale they wish it were, instead of in reality, where we can actually protect each other.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The isolation from COVID 19 had a dramatic, negative impact on my son's communications and ability to socialize with non-autistic peers. He can't make friendships like he did. Academically he did much better with remote learning, but because I created an environment that was low disruption and used Alexa devices for transitions while I worked (time for a break, time to return to school and log into Math, time for lunch, etc.), I also make the return to school, albeit online, as something fun and special to make it seem exciting. Socially my son struggles. He is well liked but his limited interests in addition to struggling to remember people's details makes it harder to pick back up interpersonal communication and take acquaintanceship to friendship.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Reduced social obligations was a benefit. It is exhausting to be around allistic people in social settings. Disruption in services needs to be addressed as an equal access issue for all. Remote learning is not designed for neurodivergent learners, and failed many students who are allistic as well. Better understanding of how to deliver learning online that has flexibility for different learning styles is needed.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Remote work has been amazing, as has the reduced social obligations. The cons are how the world is trying to whip back into creating more social demands and ending remote work and services. The quiet is being taken away.
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Name	Anonymous
Demographic	Autistic individual
Response	My mental health was better / has been a lot better since covid. A lot of places made it so you could do more things online instead of in person. Social distancing helped me not feel pressured to communicate with people.
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Name	Anonymous
Demographic	Autistic individual
Response	disruptions in services (negative), increased remote work and school (positive for many), increased use of telehealth (positive in the sense that more people are getting help, negative since its harder for doctors to assess patients online and many things go missed since autistic people have a harder time describing pain/emotions and advocating for themselves), reduced in-person obligations (positive, but it would be nice to have more safe spaces for autistic people to interact in person or virtually),
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
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Name	Anonymous
Demographic	Family member of an autistic individual
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Name	Anonymous
Demographic	Autistic individual
Response	Telehealth and remote work/school are great! Stop trying to remove them, please. Less social interaction in-person, please. Normalizing respirators would help reduce social stigma for all vulnerable populations. Lasting negative social impacts from Covid— Covid made people I’ve served in my community for over a decade say the most horrific things about “Darwinism” to my face. While still expecting me to work & serve “with a smile on my face.” Humanity is imperiled. Apathy has given way to direct cruelty. No one cares if we live; the least you could do is make it humane.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Class consciousness and the faint hope of a revolution before total climate collapse.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased acceptance of remote work has been beneficial for me. Prior to COVID-19 I was starting to get panic attacks from having to visit my workplace in person, due to the hostility of co-workers. That said, I'm much more socially isolated after COVID-19 than I was before. I think it's still a net benefit given that my ability to tolerate long exposure to allistic social environments was breaking down, but it's definitely not ideal.
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Name	Anonymous
Demographic	Autistic individual
Response	Working from home is ideal. Reduced in person social interactions is also ideal but I still am able to get enough social interaction. Even wearing a mask is great because I don’t have to worry about making the right facial expressions. But now it seems like there’s less and less opportunity to work from home. Companies should be encouraged to allow anyone to work from home. It’s better for productivity and for people with disabilities.
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Name	Anonymous
Demographic	Autistic individual
Response	Unironically appreciate the way fewer strangers try to talk to me in public (I look like a white guy with a soft face, I assume that it comes with the territory). I barely noticed the pandemic because my parents are wealthy and I could afford to just stay inside the whole time. And then my friends started dying. And then the lockdown ended while infection rates skyrocketed. I think the deaths of innocents staining our hands at various intensities is probably the most lasting impact.
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Name	Anonymous
Demographic	Autistic individual
Response	I greatly reduced my social interactions since the beginning of Covid 19 societal changes. I developed OCD around cleanliness and illness and have since found it hard to go in public or be with friends/family. I did appreciate telehealth and work from home becoming more acceptable as it have helped reduce much of my anxiety around public and social interactions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Positive: Tele-Health appointments
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Name	Anonymous
Demographic	Autistic individual
Response	remote schooling has been very beneficial. Though the furthering of isolation and increased separation from those around us makes loneliness a much more common issue. Many people are severely depressed about the state of the world.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	Pros: increased awareness of Autism, remote meetings, hobby time. Cons: Grown agoraphobia, mysophobia, and anthropophobia
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Increase in remote work, remote learning, telehealth
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The increase in remote work, remote schooling, homeschooling, and telehealth services over the last 3-4 years has been an immense blessing for me and my family. We are much more easily able to accommodate ourselves and thrive due to these changes. The lack of social obligations has been beneficial to our mental health as well. Additionally, we have been less “othered” in social situations thanks to the increase of people who have social anxiety now. However, due to the teacher and medical staff shortages that have occurred as a result of the pandemic, getting in person services we need has become much harder. In person school has become a non-option for us in part due to the lack of staff who see autistic people as people. Socialization anxiety has increased due to the cultural changes that we are unsure on how to navigate and due to being out of practice in dealing with humans.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I don’t see any lasting positive or negative. I’d love more remote work but companies want us to go back in.
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Name	Anonymous
Demographic	Autistic individual
Response	I can't get the appropriate medical attention I need because doctors give up when covid happened. Nobody cares about anything anymore. It used to be easy to use pick up services but now people assume you're just entitled. It's harder to do literally everything.
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Name	Anonymous
Demographic	Autistic individual
Response	Same response as last question.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Increased remote work and remote access to public life was great, increased Telehealth services have been helpful as well. But the going against logic and pushing vulnerable people back into public without any real safeguards is a huge negative.
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Name	Anonymous
Demographic	Autistic individual
Response	you just asked that question
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Name	Anonymous
Demographic	Autistic individual
Response	My life was not impacted as much as allistic people. I was already working remotely and I live in an RV by myself. I’m glad to see more remote work available, although the number of applicants for each job has greatly increased, and because employers still put so much stock in how well we interview, rather than our skills, it’s more difficult for an unmasked autistic person to gain and keep employment. It’s also great that tile health services have increased. Doctor offices are sensory torture chambers for me.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Increased telehealth, but decreased concern for immunocompromised individuals (including Autistic individuals, who are at higher risk of comorbidities). Increased wait times for doctors appts due to greater need for HCPs than the current amount of professionals available. Compassion fatigue from caregivers / lack of financial support for overnight and evening respite care. Burnout from underpaid and overworked professionals both in schools and in healthcare settings
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Name	Anonymous
Demographic	Autistic individual
Response	Extreme isolation, feeling like I’m younger than I am, loss of experiences and milestones, sudden extreme changes, frustration with technology/post-pandemic work life, loss of social skills
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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	Less access to diagnosing providers and
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Positive impacts were increased remote work/school. However, this has not lasted as finding remote job opportunities is incredibly hard right now. Negative impacts have been increased isolation and disruption of services.
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