Request for Public Comments on Co-Occurring Conditions in Autism

Responses to Question 6

Question: What lasting impact has COVID-19 infection and illness had on co-occurring physical and/or mental health conditions for autistic people?

Name	A.S.
Demographic	Autistic individual; Family member of an autistic individual
Response	So much. COVID has so many neurological side effects, so it's not just an upper respiratory disease. The number of people with long COVID being basically ignored by the CDC, NIH, and medical profession at large is no less than criminal. When you already have disabilties and co-occuring conditions, this just adds another layer of pain and exhaustion to your life. I mask to protect myself and vulnerable loved ones, and the social and political nonsense people have around wearing masks has prompted strangers to harrass me in public over simply trying to protect myself. Autistic people are already targeted and bullied, so this adds another thing that people bully me over.
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Name	Aaron
Demographic	Autistic individual
Response	Just being afraid of getting sick or getting someone else sick. I’m worried about the long term effects the virus has on the body and it adds another thing to be anxious about in my life.
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Name	Abby Schindler, Institute on Disability and Human Development
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response
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Name	Abi
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Abi Lea
Demographic	Autistic individual
Response	A lot of autistic people who were already impacted by auto-immune diseases and connective tissue disorders, have had increased struggles with their physical health because of the impacts of COVID-19. Long COVID can cause muscle and joint pain as well as a compromised immune system- issues a lot of autistic people already face due to co-occurring physical conditions. Many autistic people also with executive function and focus because of co-occurring ADHD, and COVID has been reported to cause brain fog and executive function, which can therefore exacerbate these struggles. This causes even bigger obstacles to stable employment, ability to perform self care tasks, and overall good quality of life for autistic people.
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Name	abirami duraiswamy
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	COVID-19 has affected the NDD individuals and their families much more than the general population. Most programs for the NDD community are still impacted with long waitlists. More children are diagnosed with behavioral issues than pre-COVID-19
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Name	Adam
Demographic	Autistic individual
Response	One of the nice positive things from Covid was when I had to go into public. There was way less people, so I greatly enjoyed that, the other part that was very beneficial, and I hope it stays is the ability to go to my doctors and therapist, online and virtually that helps with the anxiety of driving And appointments . The other thing that was very beneficial for me and I feel for a lot of people with the ability to work from home I had my cat and my sensory been available when I got overwhelmed
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Name	Adam Wehn
Demographic	Autistic individual
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Name	Adriene Fern
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	The isolation find many to home, therefore propagating disengagement with others. Regression and social skills
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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	We are not in a position to comment on this and are not aware of research on the lasting impacts of COVID-19 infection and illness on such co-occurring conditions.
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Name	Aidan
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Aimee Doyle, Autism Mom/Disability Attorney
Demographic	Family member of an autistic individual
Response	I know individuals who responded poorly to the Covid-19 vaccinations. In some, it seemed to worsen their immune capacity. The vaccinations certainly didn't prevent infection, re-infection, or transmission.
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Name	Aimee Mingone, Teacher
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I never had COVID
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Name	Akash Dey, ASD level 1
Demographic	Autistic individual
Response	I got some heart problems after covid, I think it increases anxiety.
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Name	Alan Owen
Demographic	Autistic individual
Response
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Name	Alessandra Stark
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	It’s greatly impacted children’s attention span to task and activities that are not related to screen time. Also lack of socialization with peers has impacted children to not socializing as much losing those skills and unable to communicate effectively and endgame with their environment.
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Name	Alex
Demographic	Autistic individual
Response	The Covid 19 vaccine, specifically Pfizer vaccine has given me an allergy that is unavoidable, propelyne glycol, which is in everything down to city water and has made living my life nearly impossible without n allergic reaction, which makes attendance at work difficult, and then in turn makes keeping a job more difficult than it already is for an autistic individual.
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Name	Alex
Demographic	Autistic individual
Response
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Name	Alex
Demographic	Autistic individual
Response	I think that because of my agoraphobia and higher degree of education, i was able to accept and understand the conditions of the pandemic and follow protocols easier than most allistic (non autistic) people. I also find that many are still struggling with a return to pre-pandemic life because the lockdowns actually allowed us to work in our own homes and have more agency in our day to day lives. Masks hid flat expressions. Work from home let us control our environment (sound, temperature, lighting, etc).
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Name	Alex Curtis
Demographic	Autistic individual
Response	It has spread more awareness about mental health, but it also shut us in and made people see us differently.
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Name	Alexandra Carlson
Demographic	Autistic individual
Response
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Name	Alexandra Hathaway
Demographic	Autistic individual; Family member of an autistic individual
Response	Lack of accessibility because of a lack of wide spread masking and following proper protocols to avoid mass infection. Aggravation of symptoms from covid-19 infection.
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Name	Alexandra Hayman
Demographic	Autistic individual
Response	The covid 19 pandemic caused me to isolate myself so much more and thus my mask slipped and my therapist/psychologist suspected that I was autistic and wanted to get me assessed again in 2021. I also immensely became depressed when we were home for so long and couldn't function at all. I also got covid in April 2022 and after I had covid I started having signs and symptoms of Ehlers Danlos syndrome or HEDS and POTS.
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Name	Alexie Herrmann
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lost motor skills that weren't able to be gained. Mental health struggles. Social skills struggles.
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Name	Alia Campagnone
Demographic	Autistic individual
Response	It added to the tipping point of my body.
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Name	Alicia Whaling
Demographic	Autistic individual; Family member of an autistic individual
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Name	Allison Barcott, Parent
Demographic	Family member of an autistic individual
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Name	Allissa
Demographic	Autistic individual; Family member of an autistic individual
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Name	Allyson P., Autistic Adult
Demographic	Autistic individual
Response	It’s made it a lot harder to go out and interact with others, which we need just as much as neurotypicals. If anything it has stunted my social development.
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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	Isolation and masking during COVID (while necessary to prevent the spread of infection) was especially difficult on people with autism, who found themselves further isolated and had difficulty engaging socially. Additionally, social cues and expressions can be difficult to read on Zoom.
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Name	Alyssa J. Pearson, New Mexico Department of Agriculture
Demographic	Autistic individual
Response	Exacerbated depression. Also made it so that I realized how much happier I am working from home which has made returning to office absolutely terrible.
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Name	Alyssa Stephenson
Demographic	Autistic individual; Family member of an autistic individual
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Name	Amanda
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
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Name	Amanda
Demographic	Autistic individual; Service provider, health provider, or educator
Response	increased social isolation, more difficulty finding meaningful work.
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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	Increased isolation
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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	It made it hard to reintegration to society. Socal skills are learned from experience. With autistic people, they have to understand they "why". We understood the why with covid. The problem was, there was skills that were lost with the lock down. Resources were greatly reduced. The world became an autistic person's playground. It was quiet and there were a lot less people to try and fit in with. Then you took that away and expected a person who can't do change to just reintegrate.
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Name	Amanda Saffell
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	The lasting impact is the realization that our society is extremely fragile and ignorant.
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Name	Amber Robertson
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I developed chronic illness caused by the lasting effects of covid-19, and it's made me unable to work full-time, my mental health is in horrible shape, and I'm in constant pain. As an autistic adult woman who has autistic children and works in mental health extended services, I can tell you 100% that covid has set autistic people back mental health-wise.
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Name	Ambree
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Amelia
Demographic	Autistic individual
Response	Since having COVID, I have had persistent sinus issues and congestion problems which exacerbate my colds, my bad sleep, everything. I think having masks and being encouraged to be respectful of people's space honestly helped me. I like not having to police my expressions and masks made that possible. People being afraid of COVID meant I could walk in a grocery store and not get bumped or have someone invade my personal space. I felt more productive publicly, but that is going back to normal now and people are just as rude as before. I think it would have been worse if I was in school during COVID because I needed that forced social interaction to learn about people and, without that, my more difficult years would started earlier.
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Name	Amelia Cruz
Demographic	Autistic individual
Response	I've had Covid-19 twice. My long-Covid symptom was some nervous system irregularities. Autistic people are already prone to having issues with their nervous system, so I wasn't shocked by this. I have mitigated this issue with some supplements.
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Name	American Academy of Pediatrics, American Academy of Pediatrics
Demographic	Representative of advocacy organization
Response	Two of the main impacts of COVID-19 infection and illness on co-occurring physical and mental health conditions for autistic people are weight gain and increased anxiety which can cause difficulty with social re-integration. The delay in care due to the pandemic resulted in challenges related to feeding, constipation, and nutrition going unaddressed. Additionally, the pandemic increased the already lengthy wait times for specialty care, resulting in delayed autism diagnoses and services. Because of these challenges, the AAP recommends further research into increasing autism diagnoses within the primary care setting. Overall, there has been a decrease in health care services, with people leaving the health care field as a profession, resulting in a decrease in progress toward goals related to co-occurring physical and/or mental health conditions. Both caregivers and individuals on the spectrum have shown decreased mental and physical health since the onset of the pandemic.
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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	Autistic children are twice as likely to have an underlying condition that places them at high risk for severe illness from COVID, have orofacial sensitivities that makes wearing a mask challenging, and may be among family networks with higher vaccine hesitancy increasing their risk for contracting COVID-19 (PMID: 36799305, 36483100, 37147338). Young people’s mental health was particularly impacted by the COVID-19 pandemic with increases in suicide attempts and related emergency department visits seen (PMID: 37910582). Autistic children had an increase in aggression, behavioral outbursts, and regression during COVID-19 restrictions (PMID: 32503172). Autistic children often struggle to communicate medical illness, and feeling physically unwell can lead to an increase in behavioral symptoms such as self-injurious behavior or aggression towards others. It is important to ensure treatment teams complete a thorough assessment to appropriately treat the underlying condition causing symptoms, potentially including COVID or other medical co-morbidities.
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Name	Amy
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Amy Acevedo, Mother
Demographic	Family member of an autistic individual
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Name	Amy Cox
Demographic	Autistic individual
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Name	Amy Fowler
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I feel fortunate that I was able to cobble together supports for my son. But the pressure of managing the services and supports have left me exhausted.
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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	- Social anxiety. - Behind on social norms. - Antisocial behaviour. - Fear of being in public. - More comfort in virtual/indoor settings.
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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	unsure
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Name	Andrea Dahlberg
Demographic	Family member of an autistic individual
Response	Heightened anxiety, increased isolation, decreased socialization
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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	I don't have much to say on this but the struggle I faced most was the reaction to parents not wanting to give their children vaccines because they feared it would cause autism, even though that has never been true. It was hard to face a world that would rather see their children sick or dead rather than be like me. The other affect it had on me was my job. Because of my struggles I was unable to obtain a degree but work had become out of homes, but work from home jobs almost always need a degree. So I was forced to find a job that I was constantly exposed to others and at risk.
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Name	Andrea Webber, Mom
Demographic	Family member of an autistic individual
Response	Prior to COVID I had 2 support staff, students attending TCNJ, working with my son. One was going to have him interview at the school for food service as they had special needs people employed the other was going to have him interview at the ShopRite she worked at, all of this and then COVID lockdown. Not that I know what the outcome would be but it was close to hopefully having a chance at a job as they would have been his job coaches.
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Name	Andrew James Sanchez , Social Optics
Demographic	Autistic individual
Response	Covid-19 was extremely dangerous for autistic people as most of us tend to have extremely sensitive immune systems and were prone to being killed by it. No one spoke about this. Many of us use places like zoos and aquariums and even some amusement parks where possible as places of vital systemic regulation and sensory regulation. This also included parks and certain businesses that brought us a sense of comfort. Covid-19 not only left many of us in undesirable situations struggling with housing but the shutdowns also endangered our mental health when the places we frequent are closed. Because autistic people have a lifespan of about 40 to 42 without support needs. Being stuck into one place, wouldn't inability to obtain certain foods our body won't reject and certain replacements for medical products and sensory items covid-19 left a lasting effect on those of us whom survived it. From mental health aspect many autistic people thought of taking their life during covids highpoint.
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Name	Andrew, Spouse of person with autism
Demographic	Family member of an autistic individual
Response	The lingering threat of COVID, along with seeing loved ones who did or did not take the risk of getting COVID seriously, made it difficult for my spouse to trust certain people. Her black and white thinking makes it a challenge to empathize with family members who deliberately didn't wear masks or believed COVID was a hoax due to political or religious reasons. The distrust has lingered in COVIDs wake.
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Name	Andy
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Andy Shih, Autism Speaks
Demographic	Representative of advocacy organization
Response	The COVID-19 pandemic has had a significant and ongoing impact on the autistic community. Many autistic people have family members and/or caregivers who have experienced death, disability or long COVID symptoms, affecting their ability to provide care. Many are struggling with decreased availability of support personnel (e.g., therapist, respite, school staff) due to illness. Fear of infection has also exacerbated anxiety and stress, particularly for those with co-occurring mental health conditions. This often results in lack of service utilization, decreased social connections and increased emotional distress. In children, disruptions in school routines have led to potential regression and loss of skills in children. Across the Autism Speaks Autism Care Network, some clinicians have observed abrupt worsening of behavior following COVID infection (e.g., sudden increase in OCD type behaviors).
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Name	Angela Close, Parent of adult with ASD
Demographic	Family member of an autistic individual
Response	I can’t imagine what it was like for those fearing vaccinations. My son overcame his fear of vaccinations just in time. Luckily his sensory issues did not prevent the use of masks. The anxiety must have been tremendous. The long COVID must be worse amongst the ASD population.
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Name	Angela Hilbert
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I LOVED IT! Shut downs were awesome! No pressure to socialize or meet for lunch. I've been working from home for the past 15 years, but for many of us, working at home meant we were finally able to control our own sensory environment at work for the first time! It created an increase in digital and writen communication, which is a much more level professional playing field. Closed captions assisted those of us with auditory processing problems in meetings. I could flap my hands and rock my chair all day without lookign "unprofessional." Even now, that shut downs are a thing of the past, I still have things like being able to order my groceries and just pick them up instead of wasting my saturday in the loud, chaotic market. Covid also brought to light how much EVERYONE's mental health was suffering at work. A new focus on the importance of mental well-being in the workplace is a tide that lifts all ships.
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Name	Angela, Autism caused from brain damage at birth.
Demographic	Autistic individual
Response
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Name	Angeline Low, Apt Fitness, Inc.
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	I have had long COVID-19 for two years, and it has exacerbated both my Autism, ADHD, as well as depression, weight, anxiety, and all of my other issues. Chronic fatigue, insomnia, my brain will not calm to sleep. I can go for 30 days without sleep, but my body is tired. I then start crying, curled in a ball, wishing I was dead, because I'm so exhausted and want to sleep but cannot fall asleep or stay asleep.
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Name	Angie Gorz
Demographic	Autistic individual; Family member of an autistic individual
Response	More depression, increase in anxiety, increase in obsessive thoughts, decrease in happiness, increase in sleep disturbance,
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Name	Ann
Demographic	Autistic individual; Family member of an autistic individual
Response	Extream impact. I experienced 3 covid infections even with vaccines, because the timing of vaccine availability left gaps of exposure I am unemployable now because of my poor physical health and Autism but do not qualify for disability
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Name	Ann Glynn
Demographic	Family member of an autistic individual
Response
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Name	Ann Titus
Demographic	Family member of an autistic individual
Response	It's been devastating. Screen addiction, weigh gain/obesity, lack of friends, a disruption in my child's routine and sense of security and well-being. And when kids suffer, parents suffer.
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Name	Ann, Parent
Demographic	Family member of an autistic individual
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Name	Anne Cuvellier, MSW
Demographic	Service provider, health provider, or educator
Response	I want to comment that it is unclear beyond that I think the families and the person with Autism in many cases have increased isolation wanting only in-home services and not wanting to go to a provider as well as preferring tele-health appointments. There is a place for both of these services with all persons in need but for some aspects of the population, what serves others well, does not always ultimately help everyone. Remote learning, I am confident is saying, did not serve most of those I work with well. For a variety of reasons: talking to a screen, inattentive due to lack of interpersonal exchange, confusion re: game vs. school, confusion re learning environment home vs. actual classroom, learning deficits/lack of progress and/ or regression most likely occurred during COVID
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Name	Anne Marie Price
Demographic	Autistic individual
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Name	Anne Nagel
Demographic	Autistic individual
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Name	Annettr
Demographic	Family member of an autistic individual
Response	Terrific impact- all negative. Magnified existing anxiety, My grandson was 18 months at beginning of Covid. Isolation definitely hindered his social awareness,
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Name	Anonymous, public schools
Demographic	Service provider, health provider, or educator
Response	I think it is too soon to say how long lasting the impact will be. At the present time, I think emotional regulation, learning delays and struggles with social interactions are still be impacted for many.
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Name	Anthony
Demographic	Autistic individual
Response	Covid made it easier for us to isolate and not be questioned by society around us
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Name	Arianna C
Demographic	Autistic individual
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Name	Ariel Taylor
Demographic	Family member of an autistic individual
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Name	Arushie Nugapitiya
Demographic	Other
Response	Isolation. Limited to zero mental health and medical service access for the DD population
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Name	Ash Keen
Demographic	Autistic individual
Response	I don’t know
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Name	Ashleigh
Demographic	Autistic individual
Response
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Name	Ashley
Demographic	Family member of an autistic individual
Response	Tons! Virtual.therapy and one on one aba therapy do.not.work over video
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Name	Ashley Bayles, Autistic Person
Demographic	Autistic individual
Response	Many of us are afraid to leave home for fear of becoming more disabled through COVID infection and post viral illnesses. We struggle to trust our communities/peers because we know they consider us an acceptable loss and will do nothing to try to protect us.
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Name	Ashley Daly
Demographic	Family member of an autistic individual
Response	Delay in testing during hight of Covid/2020. Most of the neurodivergent testing needed to be done in person - Dyslexia, for example.
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Name	Audra Olazabal
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
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Name	Audrey
Demographic	Autistic individual
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Name	Aurora
Demographic	Autistic individual; Family member of an autistic individual
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Name	Autism high functioning, with Heds
Demographic	Autistic individual
Response	Mental health and struggle with depression and re entering society
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Name	Autism New Jersey
Demographic	Representative of advocacy organization
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Name	Autism Society of Idaho
Demographic	Family member of an autistic individual
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Name	Autistic Adult and Autism Researcher
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	As an autistic adult, I felt very isolated when COVID-19 began and have still struggled to make friendships since. My social anxiety increased due to the pandemic.
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Name	Ava
Demographic	Autistic individual
Response	I’ve been infected 4-5 times. I’m sure it has only negatively affected my cognitive + fatigue issues
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Name	Azure
Demographic	Autistic individual
Response
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Name	B
Demographic	Autistic individual
Response	Some of it was good. A lot of us who suffer from social issues were able to use written forms of communication versus trying to understands someone's tone, body language, facial expressions, etc. A bad thing would be the anxiety caused by the country's poor handling leading to a lot of misinformation and misunderstandings, especially regarding autism and vaccinations. Again.
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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	I only gave our daughter 1 vaccine (J and J) because she her immune system is very compromised and I didn't want her to have too many injections. I am more afraid of the artificial vaccines for her than the virus itself. I think that as a general rule that many individuals with autism have regressed after having numerous vaccines. Many are very sensitive to the vaccine and the ingredients due to over active immune systems. Also, in general, being even more isolated during covid has led to many challenges for autism families related to housing shortages, staff shortages and the inability to practice skills in the community. Much regression has occurred for people with autism as a result of the pandemic.
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Name	BAT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Anxiety, depression, isolation, flares of co-occurring chronic illnesses making supports harder to access. Clinicians ignoring the pandemic and blaming anxiety.
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Name	Beatrice Alvarez , Parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
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Name	Bella
Demographic	Autistic individual
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Name	Bella Taylor
Demographic	Service provider, health provider, or educator
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Name	Bellamy
Demographic	Autistic individual
Response	I don't believe that covid has had an signifigant effect on my autistic symptoms .
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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
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Name	Bern.W
Demographic	Autistic individual
Response	Chronic fatigue Weakened immune systems
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Name	Bernadette
Demographic	Family member of an autistic individual
Response	Unemployment, excessive loneliness, and boredom is what they get up to every day.
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Name	Beth Greenspan
Demographic	Autistic individual
Response	The pandemic has caused me to become even more home-bound than I was before. It has made being in public so much more challenging than it was before. Not only because of sensory issues, but because I am at high-risk for catching viruses, so it is easier and more comfortable to just stay home. And receiving healthcare has become more challenging, more challenging than it was before because I have less support due to staffing shortages and staff being out sick with viruses. As a low income disabled person with many needs, I have become even more low income due to rising prices, lack of resources, and lack of decent affordable housing in my community. Also, a widening gap between the "haves" and the "have-nots". And the technology gap has widened also.
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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	The most common mental health/behavioral issue I have noticed as a professional is social anxiety. People spent two years locked in their homes. For the first time in 15 year we are treating children who are unable to be outside of their homes and away from their families.
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Name	Betsy Pilon, Hope for HIE
Demographic	Representative of advocacy organization
Response	Isolation has been extremely difficult for patients and families, as well as exacerbated illness and impacts from COVID-19 itself.
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Name	Betty Lehman, Lehman Disability Planning
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Those who don't understand why they need to protect themselves against spreading disease become anxious because they don't understand why their Day program closed, for example, or why they can't behave in ways previous to Covid precautions.
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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	Much less care and much more isolation.
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Name	Beyza
Demographic	Autistic individual
Response
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Name	BJohnson
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Blair
Demographic	Family member of an autistic individual
Response	Increased anxiety and nervous system dysfunction
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Name	Brandi Johnson
Demographic	Family member of an autistic individual
Response
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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	In many ways COVID-19 improved mental health for people with autism as it offered more work from home options as well as contactless services and delivery options reducing social pressures. If these options could remain open to those with disabilities I believe it would greatly improve the mental health of the autism population sustainably. I have a reduced immune system correlating with my disability so as far as physical conditions go, COVID-19 reduced my body's already lowered ability to fight upper respiratory illnesses and I often get sinus infections, ear infections, walking pneumonia, and other related issues due to the constant re-occurring upper respiratory infections.
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Name	Brian
Demographic	Autistic individual
Response
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Name	Brian Foti, Non-Speaking Autism Presenter
Demographic	Autistic individual
Response	We are tribal by nature and need to be social (at some level) to thrive and have our nervous system engaged in a positive way. Taking all social interaction away is much more harmful than the health system accounted for. There is physical and mental health - they live together not separate. Taking our physical interactions away had a grave effect on our physical health. The emphasis on physical safety became the ONLY focus and there was not a solution for how it tore down our mental health. I, personally, now live in fight/flight.
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Name	Brianna Kerchner
Demographic	Family member of an autistic individual
Response	Absolutely, they lost out on so much therapy and socialization. Children that are already years behind their peers are now even farther behind their peers. There was nobody looking out for our kids during the pandemic. Our kids could not sit in front of a computer for remote learning. So he was just held back a year. Also sensory wise excluded my kid from the public in many occasions for not being able to tolerate a mask.
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Name	Brichard Brummel
Demographic	Autistic individual
Response	I feel COVID-19 has only made it harder for autistic people to get treatment and care for co-occurring conditions. As from my perspective, prices have raised for insurance and treatment, and appointment availability has been horrendous making care much more inaccessible than it already was. It has never been worse, but it was already terrible before.
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Name	Brittany
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Brittany
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Covid has actually improved a lot of Autistic's mental health because we as a society have learnt that work from home and hybrid options are actually very do-able. I'm not sure if it's from Covid (have had twice) or age but my POTS symptoms and shortness of breath have worsened the past few years. I have also been struggling more with swallowing (oropharyngeal dysphagia & aerophagia)
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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 appreciate that we have more alternatives to interacting with people and going into stores. I like that we can have most things delivered, groceries brought out to our cars without having to shop for ourselves, and that work from home and online education is more common now. I don’t like going out in public for sensory reasons, and thanks to all of these things, I am finally feeling less burnt out.
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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
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Name	Bryanna
Demographic	Autistic individual
Response
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Name	Bryanna, self
Demographic	Autistic individual
Response	The Covid-19 pandemic has increased my anxiety to being around people being sick and has given me increased Dysautonomia, Tachycardia, and Postural tachycardia syndrome
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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	Among already spoken health issues are the bodily ones, like the very common concurring of iron deficit syndrome for life, the autistic celiac disease which includes serious issues with dairy, egg calcium causing internal non visible chronic disease like permeable intestine, psoriasis and adult acne, migraines, mood disorders, chronic articulation pain (very similar to arthritis), all of this debilitate the person to points of break where an opportunistic infection like a respiratory one like covid takes a high life threatening toll on us, vaccinated or not.
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Name	Caitlin
Demographic	Autistic individual; Family member of an autistic individual
Response	Autistic children and adults are at a far greater risk for developing long covid. More research is needed to learn how this will present and how it could impact someone through their life. More information is needed and resources are needed to stop the spread of Covid in ABA centers. Surgical masks aren’t enough.
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Name	Calen
Demographic	Autistic individual
Response
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Name	Cali Hayes
Demographic	Family member of an autistic individual
Response
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Name	Cali, Worker/Student
Demographic	Autistic individual
Response	A bad one. covid has seen massive skill regression which has caused higher autistic unemployment and lower graduation rates
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Name	Callista Markham
Demographic	Autistic individual
Response	The onset of the pandemic is when I first lost my job due to overwhelming anxiety that led me to discovering that I was autistic. Since then I have terrible anxiety every day because of the laxity of public restrictions and overall neglect in my part of the country. Knowing that COVID-19 could further disable me while still not receiving the help and accommodations that I need paralyzes me with dread.
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Name	Candice
Demographic	Autistic individual; Family member of an autistic individual
Response	Personally my health has declined as my child’s mental health is struggling. We saw through the pandemic that we don’t have to be forced into environments that take all of our energy just to satisfy societal pressures. Life has gotten harder but so much happier knowing ourselves and getting to know the neurodivergent community. We have never met such an amazing group of welcoming and non judgmental humans as we have since discovering our autism and adhd. Knowing that you aren’t a broken human and only wired differently helps to get through the hard days. The biggest struggle is ableist attitudes and people who would rather make assumptions and be mean to one another than to try and understand and show compassion to a story that seems so unbelievable to you.
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Name	Carey Holm
Demographic	Family member of an autistic individual
Response	Covid 19 lockdown brought on highly aggressive and OCD behavior that has continued to this day.
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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	As COVID only continues to mutate, fear. It depends on their ability to understand that.
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Name	Carolyn T
Demographic	Autistic individual
Response	Like many neurotypical individuals, COVID has effected both physical and mental health in individuals with autism. It caused a disconnect within safe communities, changed routines for those who rely on them, put immunocompromised at risk, and I’m sure over all caused fear and possibly took the lives of their loved ones/ care takers.
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Name	Carolyn, Parent
Demographic	Family member of an autistic individual
Response	The anxiety relating to social interactions suffered. They lost skills and have reverted to connection through screens.
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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
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Name	Cassandra Mccarthy, Self, diagnosed Autistic
Demographic	Autistic individual
Response	Personally speaking, being forced to work through the pandemic to support my family was traumatizing. It has permanently impaired my ability to seek further work because I spent a full year at minimum having to risk my life working with the public every single day because I knew I wouldn't be able to get approved for disability insurance so that I could quit my job and take care of myself properly.
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Name	Cassandra Rooney
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Quarantining during COVID severely impacted the development of socialization skills for children with comorbidities, especially within early childhood. Continuously getting sick thereafter has impacted the ability of autistic people to function at their highest potential, in addition to missing school and/or work.
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Name	Cassandra Stanolevich, Mother of autistic child
Demographic	Family member of an autistic individual
Response
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Name	Catherine
Demographic	Autistic individual; Family member of an autistic individual
Response	We are not 'allowed' to visit the doctor when unwell anymore, and cannot afford mental health support
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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	Affected education. Our daughter was home for 6 months. Was a nightmare
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Name	Catherine Slocombe, Mother
Demographic	Family member of an autistic individual
Response
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Name	Catrina
Demographic	Autistic individual; Family member of an autistic individual
Response	Isolation from lockdowns had a lasting impact on mental and physical health. Depression and anxiety remain high. Covid still causes a lot of illness and is unpredictable in how it affects anyone. But co-occurring conditions can make autistic people more at risk. Unmasking at home and late discovered autistics are having trouble integrating back into society now that there is a push to return to normalcy. Sensory difficulties are more difficult and old coping mechanisms are not working. Lack of insurance creates barriers to therapy and other services.
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Name	Celestine Cookson
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Vast amounts of Autistic people with comorbid disorders (which is all of them) have suffered increased issues related to long Covid, and increase activation of morbid disorders related to having had COVID infections. This includes worsening sleep issues, executive functioning struggles, worsening depression and anxiety. This also is greatly tied to more physical issues related to increase fatigue, chronic pain, memory issues, and activation of various disorders including POTS, PCOS, food intolerance, and immune system issues.
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Name	Celine Fortin, The Arc of New Jersey
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	Unfortunately the pandemic has isolated people with autism event further than before. Individuals who experienced anxiety regarding social situations became even more isolated and now have an even more difficult time interacting in social situations. Also, anxiety over getting sick still keeps many people at home. if they are not utilizing hard won skills they are losing their abilities to communicate and participate in everyday activities.
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Name	CFT
Demographic	Autistic individual; Service provider, health provider, or educator
Response	The obvious response would be increased isolation and loneliness. Other responses are autistic burnout, autistic skills regression, financial hardship, chronic fatigue, reduced social connections, increased mental health issues.
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Name	Charles Coleman, The Arc Massachusetts
Demographic	Family member of an autistic individual
Response	Personal none however I don't know the impact on others.
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Name	Charli Barraza
Demographic	Autistic individual
Response	COVID has exacerbated at least one autoimmune disease, if not brought another one out entirely, for the majority of us who were already living with one. We literally will never be the same after a single infection.
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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	C19 definitely put a hole in his learning and treatment plan. Lack of access to healthcare therapies and therapeutic services set him back substantially. The switch to electronic education also made it easier for him to be left out and behind.
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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	nasty needs in me get worse in covid time. fast heart, anxiety is great
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Name	Christi Caprara
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Christie Long
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Christie Patterson
Demographic	Autistic individual; Family member of an autistic individual
Response	Chronic fatigue, loss of skills, depression and anxiety
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Name	Christina
Demographic	Family member of an autistic individual; Other
Response	COVID-19 infection did not cause physical or mental health problems. The COVID-19 restrictions and school closures caused anxiety, fear, confusion, routine disruption, isolation, loneliness, lack of support and staff shortages.
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Name	Christina Stearns
Demographic	Family member of an autistic individual
Response	My 19-year-old son (Level 3 ASD) lives in an Intermediate Care Facility (ICF) in upstate NY. When lockdown of these residences happened in our state, we could not see our son from mid-March through mid-June of 2020. This created a mental health burden for both our child and our family. I understand that this was a state pandemic response, but it went on for so long and did more harm than good.
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Name	Christine Buffington
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I still can not get my sons out of the house. This has increased depression but when I try to push they become super anxious and it just goes round and round.
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Name	Christine Conway, Parent
Demographic	Family member of an autistic individual
Response	Increases anxiety, regression and medical issues
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Name	Christine Crum, Professionally Diagnoses with ASD Level 1
Demographic	Autistic individual
Response	None for me. I had Covid twice and it was hard but I wasn't diagnosed then so I don't remember it because I was dealing with so many symptoms alone and blocked it all out.
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Name	Christine Deitcher, Mother of a 9 year old boy DS-ASD
Demographic	Family member of an autistic individual
Response	My son has had Covid-19 at least once. It is not clear to me that any physical medical conditions he is experiencing are a direct result of infection from Covid-19 at this time.
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Name	christine smallin, orange county dmh
Demographic	Service provider, health provider, or educator
Response	I do not think we know the full effects yet
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Name	Christopher M Sculley
Demographic	Autistic individual
Response	For me I stayed mostly isolated as an introvert and recluse it worked out for me.
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Name	CJ Morefield
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Those of us with POTS that I have spoken with have experienced worsening of their POTS symptoms - increases in frequency and intensity of flares. Post-infection, it takes much longer to get back to being able to work than is likely average.
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Name	Claire
Demographic	Autistic individual; Family member of an autistic individual
Response	A lot of people are experiencing chronic fatigue without recognition and support. Businesses need to allow work from home option
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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	Again, this is an awfully broad brush. For some of us, particularly those with co-occurring autoimmune disorders, it's still a lethal situation, as it is for all other individuals with autoimmune concerns. For others, a year of social distancing was great because the stress and trauma of dealing with neurotypical society was reduced, and we wish we could keep working remotely and having a valid reason for declining most social invitations.
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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	With the tendency of Autistic children to gravitate to electronic devices the requirement for remote learning further embedded screen time into their daily lives. The lack of peer interaction during periods of mental development has forever affected all children especially autistic children who often learn by observing others.
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Name	Colette
Demographic	Autistic individual
Response	I do not have a direct answer to your question. I had all of the vaccines and boosters so I never dreamed I had covid on Oct 7 2023. After having a variety of symptoms for some time my daughter suggested I test for covid and yes, I had it. It appears it was present for about 6 weeks and then for about another month my capacity was not what it used to be. I am now just getting back to having my “normal” amount of energy. Since about age 50 I have exercised aerobically and done strength training and my HDL recently was 67 which is quite high and likely a result of my enjoyment of gym activities. But, I guess my age of 78 caused the covid too really “sap” me.
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Name	Colleen
Demographic	Family member of an autistic individual
Response	He went to jail due to waiting list OMRDD services years on waiting list housing etc.... the system has failed my son ... His civil rights have been extremely violated ... City honors refused to educate him saying he was unable to learn.... Due to behavior then police courts etc... failed failed failed ... My son almost died Oct 13, 2022 at the hands of inmates and guards!!! he had broken finger NO EAR LOBE has extreme pain ... Neglect of medical neglect all around ..
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Name	colleen allen, autism alliance of michigan
Demographic	Representative of advocacy organization
Response
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Name	Colleen Floyd
Demographic	Family member of an autistic individual
Response
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Name	concerned citizen
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response
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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	During the pandemic, resources were limited creating gaps in care plans, leaving people at higher risk of adverse health effects. While those gaps are narrowing, many providers have not fully recovered, creating a myriad of underserved populations, including Autism and developmental disability.
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Name	Courtney, Parent of diagnosed child
Demographic	Family member of an autistic individual
Response
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Name	Crickett Ravizee
Demographic	Family member of an autistic individual
Response	Covid has further isolated many people with autism. The waitlist for care has only grown and many community supports are gone. Smaller programs that were beneficial to autistic individuals mental health often were not able to stay open during Covid. I have also noticed a decline in my son, overall health since having Covid in 2020 that has impacted his quality of life and his ability to stay mentally healthy.
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Name	Crow
Demographic	Autistic individual
Response	Services are harder to access due to more precautions with no alternatives for alternate access. Plus long coverage making chronic conditions worse
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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	Wearing a mask for so long is over stimulating. Certain sensory conditions can make repeated touch feel painful and that makes wearing a mask, even for short periods over whelming. If you have a job that requires mask wearing, that can make over stimulation happen quicker and burnout worse
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Name	Cullen Forster, Veteran
Demographic	Autistic individual; Family member of an autistic individual
Response	Under the acute sensory environment of autism, the altered senses invoked by “long COVID” may be especially disabling for autistic people; previously-acceptable foods may no longer be edible with an altered sense of taste, further limiting their access to adequate nutrition. Under long COVID, the reduced lung capacity may compound with the effects of POTS to induce struggles to remain conscious after standing, at lower thresholds than previously endurable. The disproportionate injury rates for autistic individuals with hypermobile joints – and the problems with hand-eye coordination that accompany it – may be negatively affected in the rate of healing, with a hindered cardiovascular capacity under long COVID.
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Name	Cyndi
Demographic	Family member of an autistic individual
Response
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Name	Cynthia L. Reed, Parent
Demographic	Family member of an autistic individual
Response	It was a re-set. More online programs were offered which was a huge bonus. Forcing autistic people to attend in person classes, recreation etc, is not always in their best interest. Online classes (yoga, dance, strength & conditioning) are accessible and cost effective. Every state should offer them statewide. The resultant online community is amazing. Train more providers of these services. Huge fall off in community work opportunities, volunteer and paid. Need to regain and expand those opportunities.
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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	In a way, it was a quieter world during COVID. Autistic people were more isolated, but some (not all, as not all autistic persons are the same) were more able to regulate their environment due to the isolation. But autistic persons with higher-support level needs also experienced a struggle as their caregivers experienced that isolation as well, which did become overwhelming in cases. Remote access jobs are a boon to the disability community as a whole, the technology removed the mobility requirements and access requirements, and as we have shifted back from that in the following years, that has negatively impacted disabled Americans, not just autistic persons.
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Name	D. Buzz, guardian and SDE Supervisor
Demographic	Service provider, health provider, or educator
Response	Another excuse to funnel money away from where it is needed and another excuse to undermine the work force needed.
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Name	Dale
Demographic	Family member of an autistic individual
Response
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Name	Dallen Williams
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	As an Austistic ADHDer with anxiety, depression and a host of other conditions, I found that the lasting impact is anxiety so severe surrounding doctors' offices and anything that involves going into a office where a sick person might have been causes not only anxiety attacks but also meltdowns. I have not seen a medical professional in person or had blood work done since late 2019. This is particularly dangerous since I have multiple medical conditions that require better monitoring, but doctors' offices have not been accommodating of the mental health reasons, I have not been able to go in person. Odd hours or booking so that I can go straight into a room even if the visit takes just as long.
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Name	Damaris Hadayia , Parent
Demographic	Autistic individual; Family member of an autistic individual
Response	It gave my child asthma, which he didn’t have before. It also halted all of his therapies, caused me to loose my job, then my apartment trying to care for him during covid as schools and therapies were basically nonexistent. It destroyed my family’s life, and eventually cause our homelessness! This should never happen to a family, because of autism!
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Name	Dana Haff
Demographic	Autistic individual
Response	Many of us have developed post-viral sequelae because hypermobile Ehlers-Danlos Syndrome is a common pathway to a virus causing ME/CFS, Long COVID, and other post-viral illnesses. I can’t say this often enough: no doctor I have seen has any understanding of this.
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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	For many with co-occurring anxiety and depression, the isolation has continued and caused significant impairment in daily life activities.
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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	COVID-19 has impacted individuals, hypersensitivity to infection, increased behaviors, increased anxiety, changes in routines, identify crisis, limited access to services, increased barriers to service.
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Name	Danielle Willsher-Goodman
Demographic	Autistic individual; Family member of an autistic individual
Response	Lock down increased stress and anxiety and brought new level of threats to those suffering with compromised immune systems
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Name	Danni Zou
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Danny Schaible
Demographic	Family member of an autistic individual
Response
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Name	Danyale Sturdivant
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	The increase in a lack of skilled service provides who are able to provide tele-health services
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Name	Darcy Janowski , parent
Demographic	Family member of an autistic individual
Response	my daughter was very social before covid but such a long time with masks and separation from others took that away. She has never returned to the social butterfly she was. just starting to improve recently
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Name	Dave, A citizen from Oregon
Demographic	Autistic individual
Response	It set me back 6 months on fitness training, it worsened social isolation, it increased anxiety, and the fighting to get insurance to pay for the missing time was terrific, and was made harder by the executive function issues. I had an enormous number of focal and complex partial seizures caused by the infection, and I still am not back to baseline for respiratory health three months later. Beyond that, it has made networking to advance my career much harder, even in the face of the extraordinary challenges that already exist for folks with disabilities. The social isolation and failures of institutions worsened anxiety - seeing the government be inaccurate repeatedly, and the social instability caused by people pretending science didn't exist, seeing 1/5 of americans just call the deaths of the weakest among us an inconvenience, and throw violent tantrums because they couldn't get their hair cut. I live in a nation less safe for me and folks like me than it was 10 years ago.
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Name	David
Demographic	Autistic individual
Response	I was only diagnosed post covid. But the extra frustrations from covid brought out the worse in my autistic self as things even more chaotic and illogical than normal
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Name	David Gartland, Father
Demographic	Family member of an autistic individual
Response	None
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Name	David Grady, California State Council on Developmental Disabilities, Central Coast
Demographic	Representative of advocacy organization; Other
Response	Advantages and disadvantages of virtual education. Over-reliance on technology (social media) and how it might lead to isolation. Inconsistent special education practice. Impact on school attendance.
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Name	David Kaufer, Parent
Demographic	Family member of an autistic individual
Response
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Name	David McWaters
Demographic	Family member of an autistic individual
Response	Social interaction can be difficult in the best of circumstances and for many became impossible during the pandemic
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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	harder to mask or function regularly in public
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Name	Dean
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Deb
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Less accessibility for person to person assessment for planning, teaching, supporting and arranging services
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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	My son was so isolated and bored during Covid that he developed aggression for the first time in his life. He was nearly 30 when this happened. He became very anxious and self injurious, also much more than prior to Covid.
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Name	Debra Yurschak, NCSA member
Demographic	Family member of an autistic individual
Response
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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 fatigue and inability to perform basic tasks necessary for daily living. Far more dependent on others for basic needs. More avoidant of people/infection
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Name	Devorah, mother
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	loss of year of therapy and learning
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Name	Diana Gonzalez Madin
Demographic	Family member of an autistic individual
Response	the social/communication progress was affected during COVID
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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	My client dropped out of college one year from graduation during the pandemic due to isolation. It was actually easier ( more motivating) for her to get to class, focus, and complete assignments ( mostly papers) in person than online.
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Name	Donna Johnson, Parent
Demographic	Family member of an autistic individual
Response	COVID-19 has had a lasting impact on co-occurring conditions such as anxiety, depression, sleep disturbances, and executive planning.
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Name	Donna Narey
Demographic	Family member of an autistic individual
Response
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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	It has made hiring people to work in this field even more difficult, thus, many with autism haven't even been able to get the services that have been PROMISED to them.
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Name	Dr Jessica Myszak, Help and Healing Center PLLC
Demographic	Service provider, health provider, or educator
Response	COVID-19 infection and illness has created more isolation for many autistic people, and added yet another layer of challenge onto a community of people who already experience numerous additional obstacles to societal participation.
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Name	Dr. Autumn Dae Miller
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	You are asking what COVID-19 has done to physical and mental health for Autistic people...similar to what it gave & took away & made messy for everyone... 1) Remote work: finally people got the chance to work from home...where the food I can eat is, where bathrooms that feel safe are...where I can move, jump, fiddle with a fidget and not be judged. This has completely changed the game and made it possible for people to be more authentic and safe(r). 2) People are so stressed with the way the world is these days, the expectations are off the charts (do more with less than half of what you had before...of everything), and we expect folks to just KNOW how to survive it all. 3) For those who DO reach out for help, the BEST providers refuse to put up with the harassment and belittlement of insurance-funding or waiver-funding. To get the best, you have to bit rich and that's absurd in a world where those who need the most qualified cannot access them. It's not the fault of the therapist who would only get paid $45/hour from Medicare when their time is worth $150-$250/hour elsewhere. They went to school, they have bills to pay, and the clients NEED them. COVID showed us that we treat the people our world needs the most like crap; hospital workers, therapists, teachers, human service workers in general...this negatively impacted us all.
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Name	Dr. Bernadette "bird" Bowen (She/they/Dr.), Media Ecology Association
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Other
Response
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Name	Dr. Henny Kupferstein, Doogri Institute
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization; Other
Response
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Name	Dr. Karissa Burnett, Divergent Pathways: A Psychological Corporation
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I know many autistic people who have been dealing with long-COVID, which seems to exacerbate many underlying conditions (e.g., MCAS, dysautonomia/POTS), with significant impacts on daily functioning and limited treatment options. Lingering symptoms like brain fog, chronic fatigue, and other physical and cognitive challenges can further complicate existing co-occurring conditions and impact quality of life. Additionally, autistic individuals with pre-existing mental health conditions like anxiety or depression may have experienced intensified symptoms during and following the pandemic.
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Name	Dr. Marcy Epstein, University of Michigan/Athena Autism
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	Overall, we've suffered along with everyone else. More people at home means more opportunities for overwhelm. Masks can make our skin break out. When we got sick, we were in a hospital emergency, in all sorts of chaos, with communications gaps and highly variable pain thresholds. For the first two years, I was glad to be home, though, because I finally could do some overdo calming. But I had some major traumas, too, and every change from routine felt scary. I got Covid at the end of Year 2, and it came with terrible gastritis and brain fog. I still have flareups and don't know if it's all post-Covid or part of my autism journey.
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Name	Dulce
Demographic	Autistic individual
Response	COVID has overall been good to us mentally due to the physical masks and physical distance we don't have to mentally mask and preform for all the steps of regular socializing. Though physically infection and illness has rendered many of us with significant chronic conditions like POTS, ME/CFS when many have not had them beforehand.
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Name	Dylan M. Fish, Disabled Autistic Student at RIT
Demographic	Autistic individual; Family member of an autistic individual
Response	The COVID-19 pandemic has likely had lasting effects on co-occurring conditions for autistic individuals. Disruptions in services, increased remote work and school, and reduced in-person social interactions may have exacerbated challenges or, in some cases, provided new opportunities for support and adaptation.
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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	Change in routine can be more difficult for those on the spectrum. My son, who had previously volunteered at a Nursing Home for five years and traveled locally on his own ( thanks to a great public school for special needs populations, as well as a great travel-training instructor), has not wanted to think about looking for another volunteer or work opportunity since Covid. He is still frightened of getting sick and of not finding something that will last. He has only just began going places on his own again (like to the local barber shop) these past two months. Now with rising infection rates in NY, he is growing worried again, as are we all, and is more hesitant to go out, even with a N95 mask on. We have all gotten the latest vaccine, but unfortunately, too many others have not.
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Name	Elenna
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	COVID-19 taught me that my quality of life is mostly better when I am able to perform most tasks remotely. Being able to access telehealth made it easier for me to receive medical care because I was not restricted to doctors within a commutable distance. I was also able to access a doctor for basic care when I would otherwise feel too sick to take myself to the office which is about 40 minutes away.
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Name	Elio McCabe, Autistic Women & Nonbinary Network
Demographic	Autistic individual; Representative of advocacy organization
Response
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Name	Eliot C., Disability Network Washtenaw Monroe Livingston
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Elise Aguilar, ANCOR
Demographic	Representative of advocacy organization
Response
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Name	Elizabeth Bennett, Children's Hospital Colorado
Demographic	Service provider, health provider, or educator
Response
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Name	Elizabeth Doolittle
Demographic	Family member of an autistic individual
Response	It seems like after COVID my son withdrew socially more. He was not super social before COVID but he lost his confidence after not getting as much exposure to friends from school - birthday parties etc during this time.
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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 pandemic resulted in a collective prolonged anxiety that had impacts on every systemic level of daily life for US individuals. The access to social and economic resources was a potential mediator for the individual/family experience of stress. For those highly impacted by stress prior to the pandemic, the pandemic contributed to the accumulation of dysregulation and lessened capacity for many that may not have manifested as quickly or in the same way without the global experiences related to COVID-19. For all individuals, cumulative anxiety and prolonged dysregulation has significant impacts on physical and mental health experiences. For autistic individuals, this experience from the pandemic was superimposed on other layers of prolonged anxiety and distress that were already present related to neurotype and environmental interactions.
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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	Anxiety, weakened immune systems, social phobia. Depression, anxiety, lack of confidence.
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Name	Elizabeth Olson
Demographic	Autistic individual; Family member of an autistic individual
Response	Working from home has been an improvement for a lot of autistic people.
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Name	Ellen
Demographic	Autistic individual
Response	1. Stuck inside more 2. Change of routine 3. Not able to see normal help or support
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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	It has shown that too many people do not care about their community and people with illnesses, and only care about themselves. This makes me fear being around others more than I did previously
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Name	emily
Demographic	Autistic individual
Response	I will keep this one simple: I have a worse case of long covid than anyone i know. I can feel myself dying. And after screaming for help from my community for years now, stating my needs directly and deteriorating in front of their very eyes, I know what the idea behind chewing one's own tongue off is.
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Name	Emily
Demographic	Autistic individual
Response	Regression in mental development, brain fog.
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Name	Emily
Demographic	Autistic individual
Response	Isolation was not stressful. However, coming back after isolation, I realized my 'autism mask' has come off. I didn't have to 'act like a normal person' for so long I sort of forgot how to. Ive finally allowed my natural self out and as a result my anxiety has decreased. The options for being able to do more things online has helped as well.
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Name	Emily Garris
Demographic	Family member of an autistic individual
Response
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Name	Emily Paige Ballou
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	Personally, while the lasting impacts of Covid-19 infection itself on my physical health are yet to be clear, the experience of the pandemic in a multitude of other ways has left me suffering from heightened anxiety, isolation, and loneliness, as well as overwhelming circumstances at work (understaffing, erratic schedules, physical stress associated with mask-wearing requirements, poor physical working conditions).
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Name	Emily Ransom
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Covid-19 has made a huge impact for families to seek early intervention care on their young child showing signs of “autism” because the world was shutdown for months. Waitlist became even longer. The child continues to struggle and intervention is put on the back burner because of the waitlist.
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Name	Emily, Autistic individual
Demographic	Autistic individual
Response
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Name	Emma
Demographic	Autistic individual
Response
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Name	Emmett Lockwood
Demographic	Autistic individual
Response	I have not had a COVID-19 infection at this point - knock on wood- but as someone who was diagnosed with autism during the COVID-19 pandemic and as someone who has experienced healthcare systems both in the rural Vermont town I am from and in my college town is a small city in Wisconsin I can say the waitlists for seeing providers have ranges from months to years long (I have been on waitlists for an appointment for a specialist for Ehlers Danlos Syndrome for over a year and have been told I will probably have to wait a year and a half before I see the provider). Wait times aren’t just annoying but often because there is the administrative burden of having to call providers every month to make sure my name is still on the waitlist (a requirement by many providers) it adds an administrative burden for autistic folks.
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Name	Erin , Parent/guardian
Demographic	Family member of an autistic individual
Response	The real impact on Covid was all the programming closing. The very few things that were available no longer are. Our loved ones sat at home with no services for almost 3 years! And as a result of no more programming, They are continuing to sit at home in crisis. State of Washington must create some sort of deep programming for those High, profound autism. Employment is not the answer! That’s a feel good statement that ends up discriminating within the community those who were too disabled to be in the workplace end up, sitting at home for their entire lives!
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Name	Esther Caletka, HOME Incorporated
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Programs shut down. Some with autism were not able to receive remote services due to their disabilities. I , personally saw a decline in their cognitive function, behaviors, some becoming more "institutionalized" - not wanting to leave home. And many of our individuals never returned to receiving their day treatment services.
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Name	Ethan, Care Giver/spouse
Demographic	Family member of an autistic individual
Response
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Name	Eugenia Ramsey
Demographic	None Indicated
Response
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Name	Evren Wiech-Barnes
Demographic	Autistic individual
Response	I believe I may still have a lung infection a year and three months after my Covid infection. I may have heart damage. It is unclear. Tests are on-going. I am extremely angry at the bungled handling of Covid from the previous administration. Each body is different. I don’t know what others are facing.
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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	I have no more trust in service providers. I have wasted so much time and money trying to be treated only to find myself making more progress at home with no support than I did while trying to navigate seeing multiple providers. I am burnt out on having the same conversations about weight and diet, anxiety and depression, and mild exercise. Understanding polyvagal theory and treating my nervous system as a real part of my body took ONE book and a few minutes of research to do. Why aren’t providers trained to provide care that has been proven to increase self efficacy? I want to trust my providers but I am overwhelmed by the grief of all my failed care. The provider in these situations will face no harm at their actions, but I will lose all of the resources that could improve my life outcomes. When people come to me seeking support getting an autism, or any diagnosis, I feel fear for the misdiagnoses from provider bias they might face, and I feel hesitant to encourage conversations with general physicians whose advice on mental is, in my and my communities experience, not helpful at best on mental health topics.
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Name	Firos Shamsudeen
Demographic	Family member of an autistic individual
Response	since autistic children and other differently abled people will have limited communication ability it is good to have special covid-19 clinic or service fore them.
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Name	Fraida Flaishman
Demographic	Service provider, health provider, or educator; Researcher
Response	This is an individual question based on the personal experience and environment of people during that time period. I have seen cases were families and children struggled during the time that schools and program and support were put on hold including those that recovered quickly and others where they are still struggling including needing psychiatric supports because the change of routine was difficult. It was most difficult for families to cope when their support outlets including school and vocational programs were not available for the individuals with autism.
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Name	Frank Camilleri
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Freya
Demographic	Family member of an autistic individual
Response
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Name	Gabriele Arnhold
Demographic	Autistic individual
Response	All help I got was canceled. I was cut off from medical help and my condition worsened. Health service for people like me were never established again like before. After the pandemic was over people were more selfish and I was told I should go to gas, I should die, I was not worth living, my life would not matter. The pandemic taught me that I won't get any help if it gets really bad. I lived more isolated during the pandemic and never got an infection until in 2023 kind of all inhabitants of the nursing facility my father was in were infected by a a doctor who did not follow the precautionary measures. I was infected by my father. My father died. We were both vaccinated.
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Name	Gabrielle Connelly
Demographic	Family member of an autistic individual
Response	When COVID-19 hit, we lost a lot of foods that my son used to eat due to people stocking up in their freezers and the inability to get his preferred items. we have not gained those foods back, and it’s been years. it took us years to get him back on track from potty training when COVID-19 hit he started urinating everywhere and anywhere with no rhyme or reason. we are still trying to undo what the pandemic did for his development
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Name	Genevieve Chaput, mother of 21yo with autsim
Demographic	Family member of an autistic individual
Response	Increased risk of cardiomyopathy, anxiety and paranoia
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Name	george knoth
Demographic	Family member of an autistic individual
Response	support staff is exhausted from pro-longed care when agency's were shut down
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Name	Gerald Wilgus
Demographic	Autistic individual
Response	None. However, I think it is scandalous that effort was made to help NTs with mental health issues stemming from isolation especially when no effort has ever been given to provide autistic individuals with help when they were isolated.
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Name	ginamarie
Demographic	Other
Response	i be have more visits the doc office - my function level be less - i be told it no more safe me try push self do many the things cause my immune be the low high risk of ables get the infect. yet the mores isloates be the more i becomes the high risk to have infect illness.....i be got the covids more one time now and i take longers since the covids for health improve ever thing. the stitches take longer close heal. a bruise.....sleep less....get more alergys....another snowball result that no make the since and it wonky cause many docs no respects to answer my questions and the or take times - sevral them want just pill me - like oh you no ables sleeps we give you the sleeps pill yet i be test and told i be hypoxemia so is the sleep pill make health care wellness me a good option???? alarming
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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	Our students in SC did not lose as much in-person school time as many states. The stress and anxiety increased over Covid in parents,grandparents and friends.
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Name	Gloria Derosa
Demographic	Family member of an autistic individual
Response	Covid terrified us, we didn’t take our daughter out in public for 2 years. Disabled people are more likely to die from Covid or suffer lasting effects. My daughter missed 2 years of schooling, and vital communication and physical therapy, and 2 years of transition services. the district offered a couple hundred dollars in compensation but that would pay for MAYBE 2 therapy sessions .
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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	Simply put, Covid has mostly made everything much worse. Those autistic people who had successfully learned to mask adequately enough to function in a neurotypical society have regressed substantially due to the social isolation of lockdown; and while from a mental health perspective, living an unmasked life is substantially less draining, it also means living with more pronounced and impactful symptoms. Those without that ability have found themselves even more isolated than before, and with more restricted access to the limited services available to them in the first place. This has led to a net worsening of the autistic experience overall.
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Name	Greg
Demographic	Autistic individual
Response
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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
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Name	Harriet Stuart
Demographic	Family member of an autistic individual
Response	Since COVID, there has been a serious shortage of direct support professionals.
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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	100 times worse. Everything is worse.
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Name	Heather
Demographic	Family member of an autistic individual
Response
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Name	Heather
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I am autistic and had covid-19 and in my experience I had a very hard time with my memory and orienting myself even at home. The brain fog had a lasting affect on me for over a month.
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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	Over-reliance in schools and socially upon screens has brought out-of-control and unavoidable hours of screen use, and autistic brains having greater trouble disengaging from screens. We need more outdoors, in=person interventions and so many are now delievered remotely, reducing opportunities for organic, real-time social learning
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Name	Heather Cellini , SLP
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Not sure but isolation and a higher level of overall anxiety in the population can’t have a great impact. Plus access to medical care is challenging even when there isn’t a pandemic
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Name	Heather Gray
Demographic	Autistic individual
Response	It has exacerbated my symptoms and made it borderline impossible to function.
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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
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Name	Heather margiotta
Demographic	Family member of an autistic individual
Response	My daughter became schizophrenic when covid shut down all programs . I truly believed her beening isolated for over a year caused this mental brake. It's now 2024 and still dealing with voices, fine motor skills decrease during that period and an adult, 25 with limited help.
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Name	Henrietta Reder, Friends of Ann Kiley Center; Parent
Demographic	Family member of an autistic individual
Response	I know individuals who have become so depressed they do not to want to even get out of bed. Medications provide little in the way of helping this individual. After having to go into isolation at the center where they live, trying to get these individuals back into attending the sheltered workshops is very difficult. As a result, aggressive behaviors are surfacing again.
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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
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Name	Ian Morris
Demographic	Autistic individual
Response	I was fortunate to not get COVID-19 during the hottest years, but I understand that it could still happen. I was homeless just before the pandemic hit, and there were fellow autistics sleeping on the street. I don't know, personally, how the pandemic hit them, but since we were sleeping cheek by jowl it seems likely that fellow autistics were more likely to be positive with COVID-19.
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Name	Ilana Gruber, Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities (PAR)
Demographic	Representative of advocacy organization
Response	Many individuals experienced disruptions in their routines due to the pandemic and are still building new routines or getting back to their pre-pandemic routines. These disruptions have caused social isolation, which has negatively impacted the mental health of many individuals. Furthermore, the pandemic limited access to essential services and therapies, resulting in delayed diagnoses, interventions, and increased/prolonged symptom intensity. Lack of medical care and mental health care, as well as the inability for teachers to observe students in-person, has also decreased identification of symptoms.
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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	Slow COVID has made an impact, and worsened an already challenging ability to respond. I am slower and I have fewer resources to call upon. And when I ask for help from my medical provider, I am dismissed.
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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	The good lasting impact is availability of mental providers’ telehealth. It aids in assuring appointment will be kept. No need to figure out transport.
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Name	J Olson
Demographic	Family member of an autistic individual
Response
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Name	Jack Brownn
Demographic	Autistic individual
Response	My asthma has worsened
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Name	Jackie
Demographic	Autistic individual
Response
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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	The pandemic was devastating - the little we had is still disrupted - so much regression occurred for so many - lost caregivers, loss of routine, setback in future planning, inability to return to volunteer or work program. Progress lost - hard to know with my son as he doesn’t talk but he is not the same post Covid none of us are
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Name	Jaime
Demographic	Family member of an autistic individual
Response	Covid caused more anxiety and more frequent allergic conditions. I perceive more anxiety in my child after enduring such long periods of time being enclosed at home. Post covid also brought more constant allergic reactions in my child's health not perceived prior to covid.
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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	Societal interactions have been less. Raise in obesity. unkown increased anxiety and depression or suicidality
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Name	Jamie Cullen, Parent
Demographic	Family member of an autistic individual
Response	My son lived at home until covid. He became so adisregulated because he didn't understand that he was hospitalized for 3 months restrained to a bed with the State Crisis Team telling us to keep him in the Hospital so he is first to get Transition Housing, That Housing never came and we had to place our son who does not speak in an Illinois State Approved residential School that was not appropriate for him because we had no other options. He eloped from the school and this is when Heartstring School had a student death due to elopement so the school kicked our son out after losing him and we had to get an attorney to get him into a school in New York. We had to send our already challenged limited speaking child out of State to a school and drop him off and go back to Illinois. I had to quit my job to find someone who would help get him back to Illinois. In the 2 years I have searched I found 1 place in Wisconsin willing to take him. We are having to move to Wisconsin for help. It's insane and I am thankful we can afford to do this but what about all the people who can't??
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Name	Jamin Johnson
Demographic	Family member of an autistic individual
Response	NA-- my daughter didn't get Covid! YAY!
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Name	Jana Young
Demographic	Family member of an autistic individual
Response
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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	It has made it worse for many people. Fewer supports exist now than pre-covid. It took us 2 years to hire someone to cover my children's state-approved support hours because so many caregivers left the field due to covid. They were not provided appropriate educational supports for virtual learning during covid, and lost ground. They were not offered any additional services when things started to return to normal. And because of their medical histories (all those co-occurring conditions), their medical providers did not feel returning to in-person school was a viable option. They lost out on things that were assisting their mental and physical health when things were locked down, and getting therapies back on track has been challenging.
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Name	Janet Shouse
Demographic	Family member of an autistic individual; Other
Response	Given how long COVID manifests itself in multiple ways, it’s extremely difficult to know the impact on those with autism who are not able to communicate effectively or to articulate their internal states. The mental and behavioral health impact of the pandemic itself was distressing to large numbers of autistic individuals. We do know that COVID-19 was far deadlier for individuals with intellectual and developmental disabilities than any other group. Additional research in those areas is needed.
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Name	Janice
Demographic	Family member of an autistic individual
Response	My daughter has gotten Covid twice (she works in an after school care program) but I don’t see any long lasting issues.
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Name	Janice, Parent
Demographic	Family member of an autistic individual
Response
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Name	Jared Goodrich
Demographic	Autistic individual
Response	Stress
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Name	Jason B, Self
Demographic	Autistic individual; Family member of an autistic individual
Response	Since the pandemic I can't leave my house most days and don't interact socially. I do live with my autistic partner, we are in our 40s. We have little support for chronic medical issues due to communication issues, depression, anxiety, burnout. We both lost our jobs and are unable to function. We struggle to do many daily tasks like meals, chores, basic shopping, maintenance, etc. These things are not due to severe financial issues, we just can't face the world and are in severe burnout. We started having issues like this in our late 30s but the pandemic made it so much worse.
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Name	Jason Montgomery
Demographic	Family member of an autistic individual
Response	For my son, similar to what other have seen.
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Name	Javier, Advocate
Demographic	Autistic individual; Family member of an autistic individual
Response	COVID was a very frightening experience, I was very depressed during the initial start of the pandemic.
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Name	Jeanine Castagna
Demographic	Autistic individual; Service provider, health provider, or educator
Response	COVID 19 made child find and crucial early intervention very difficult to find and access for autistic people. Which overall affected development
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Name	Jeannie C
Demographic	Autistic individual; Family member of an autistic individual; Other
Response
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Name	Jeffrey Poms
Demographic	Autistic individual
Response
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Name	Jeffrey Reeves
Demographic	Autistic individual
Response	The vaccines that I received seemed to benefit me in recovering from the China Plague.
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Name	Jeffrey Slater
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Jeffrey Thomas
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Humans are complicated and social creatures. The pandemic completely changed how we interact with each other, And now we essentially have to entirely relearn every new societal norm and social interaction queue that has come about because of COVID and the isolation we all faced during quarantine.
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Name	Jemima J
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Anxiety and delayed achievement of developmental milestones
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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	My son will no longer leave the house. He was on a wait list for a day program, which had to close during COVID. Staff turnover has, and continues, to disrupt programming.
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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	Early intervention delays and set backs. My grandson had just started early intervention when the shut down happened and we are still playing catch up because none of the services were available and none of the services were made up after shut down so he lost so much
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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	Autistic individuals should not be required to take mandatory vaccines. When the government wanted to make it mandatory that everyone got the covid vaccine this was not an option for our child. Their immune systems and body chemistry are extremely sensitive to medication, food, household cleaning products, etc. Forced vaccines are never an option. Government needs to realize that especially for people who have children on the Spectrum as well as other impairments such as ADHD etc.
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Name	Jennifer Quigley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Significant for my son. It derailed his early advancement and stopped his learning do to requirements to be on camera.
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Name	Jennifer Reppond, autism parent
Demographic	Family member of an autistic individual; Researcher
Response	My son was distraught with the whole COVID-19 pandemic. He still cannot get off talking about how this entire thing ruined his life. It stopped his life as far as he was concerned. He hated being stuck at home all day and not going to school. Our son is a planner, and this ruined all his plans. He had outbursts of anger that we had never seen from him. When he wasn't angry, he was weeping because he did not understand, and when we couldn't answer his questions or give him understanding, he was just depressed. I know some who did not want to rejoin society after the pandemic and secluded themselves. Our son is still mad at what he considers lost time and moments. One way or the other - mad that life stopped or not wanting to rejoin life - is terrible. So, I believe it did have mental health ramifications as well as ramped up more physical ailments. Stress, anxiety, anger, and confusion all mess with the mind and, if prolonged, can mess with the physical body, causing all sorts of problems. When you don't feel good physically - or mentally - you act out and behave differently.
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Name	Jennifer Sibley
Demographic	Family member of an autistic individual
Response
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Name	Jenny Folley
Demographic	Autistic individual; Family member of an autistic individual
Response	Long term fatigue long term chest pain long term asthma symptoms long term cramps
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Name	Jesenia, NeuroSpicy Networking
Demographic	Autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	covid like HIV has been horribly handled by the governments and politicians politicizing a deadly cumulative auto-immune disrupter. The misinformation and disinformation has deadly consequences on an already vulnerable population and social determinates of health are even more impacted by the lack of precautions, we also have to deal with minor co-occurring physical and mental health becoming flared or activated by degrading and dysregulated immune systems. Then add to that the lack of care from healthcare providers to believe us or take us seriously in knowing our own body-minds. It is a MASS DISABLING EVENT. It is not a matter of if you will become disabled but when. The future is and will be disabled by the our lack of care towards disabled people. eugenics runs deep in this colonized society and we must center care and compassion if we are to survive as a whole.
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Name	Jess Butler
Demographic	Autistic individual; Family member of an autistic individual
Response	Probably not a whole lot, you see, because many autistics LIKE to stay home, so the whole "stay home" thing was not like the punishment that the NTs thought it was. It actually SPURRED on things that HELP us, like telemedicine, remote work/work from home jobs, etc. I don't know any autistics who had COVID-19, possibly because our immune systems work differently than NTs.
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Name	Jesse Scott
Demographic	Autistic individual
Response	lsolation/changes in routine/structure disrupted established incontinence management plans for some, potentially exacerbating physical symptoms. Loss of employment/income led to inability to afford specialized products for Incontinence/prescriptions, worsening well-being. Overstimulation/distress from extensive safety protocols/PPE requirements made it harder to self-advocate needs and tolerate intimate assistance if needed.
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Name	Jessica
Demographic	Autistic individual; Family member of an autistic individual
Response	We often struggle with physical difficulties so for many autistics long COVID is a huge fear. The stress of politics and illness has made our anxiety worse. We also have a high sense of justice so bitterness has also been a side effect of feeling disliked and not cared for yet again.
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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	I can only speak for myself on this one and only with some limited knowledge of what others told me. For many of us that suffer with executive dysfunction disorder from our ADHD are places became tombs of our own messes as much as we tried we got to clean a little bit took care of things that we can take care of but there was not much to motivate us and so with many of the issues that come with ADHD and then coupled that with the autism we sell-sabotage ourselves mentally I continuously talk down about myself beat myself up mentally because it made me feel entirely worthless that I could not achieve the simplest tasks with so much time that I am stuck with along with not being able to being the ability to learn a new skill due to my severe dyslexia going online to read and learn a new skill was more challenging and stressful it got to a point where I threw my own work desk across the room and had a nervous breakdown so yeah that's my story and quite similar to several others that have told me there's.
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Name	Jessica Iverson
Demographic	Autistic individual
Response	COVID affected those with physical health conditions that occur with autism, such as long term effects on mental clarity, migraines, respiratory and digestive systems. It also greatly impacted people with mental health conditions, either worsening pre-existing conditions or triggering new ones including agoraphobia, anxiety, depression, and OCD.
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Name	Jessica Mullaney
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response	A high percentage of those in the Covid-cautious community are neurodiverse and/or diagnosed with ASD. When the medical community decided to "move on" even though Covid has not yet moved on and abandoned Covid precautions like masking in hospital and office settings, many Covid-cautious individuals, including those with ASD, were forced to start forgoing medical care whenever possible for our own safety. The long-term implications of forgoing preventative care can't be good, so the failure of the medical community represented by them giving up on Covid precautions is highly unfortunate, harmful and, frankly, ableist.
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Name	Jessica Phillips
Demographic	Family member of an autistic individual
Response
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Name	Jessica Smith
Demographic	Autistic individual
Response
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Name	jewel brobst
Demographic	Autistic individual; Family member of an autistic individual
Response	both good AND bad. bad because during it i couldn't socialize with the friends i had made. (lots of ties that i NEEDED broke.) cant function as well as i could before. (basically i hid everything that made me autistic and after covid i couldn't shove it back into that bag.) good things are that many of my local stores do onlline shipping, and curb side pick ups now. meaning i dont have to wear sunglasses and earbuds when going in stores to HELP dull out the bad sensory (bright lights, crowds of people, and louds sounds msotly) and possibilty get asked why i need all of this. (or pay for sunglasses that have my prescription because i need glasses) so over all, things came out decently well, my mental health suffered like i seen alot of peoples mental health suffered. (and yes this goes for alot of my co occurring cuz they are all tied together)
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Name	Jill Escher, National Council on Severe Autism
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response
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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
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Name	Jim MacNaughton, parent
Demographic	Family member of an autistic individual
Response	Schools moving to virtual model created a large socialization learning loss in our son.
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Name	Jimee
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Thankful for telehealth. This makes mental health care more accessible and accommodating. Also the ability to work from home. This helps so many autistic & adhd individuals do quality work and lesson risk of overstimulation and burnout
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Name	Joanna
Demographic	Family member of an autistic individual
Response	My child loved Covid as everywhere was quiet so he felt more comfortable accessing the outside world . For others I understand Covid will have had a negative impact effecting their daily/ weekly routines and they will have felt trapped .
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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
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Name	Jobless autistic
Demographic	Autistic individual
Response	My social anxiety has gotten worse, I'm slightly agoraphobic now, I'm suspicious of everyone because it's like a long game of clue since I'm immunocomprimised and therefore almost constantly sick, I'm mad at people for not wearing masks, I'm getting less exercise because of it and my physical health is suffering, and my depression is up because I'm trapped inside or else I'll get sick even with the necessary precautions
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Name	Jody McCormick
Demographic	Autistic individual
Response
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Name	joe valenti, parent advocate
Demographic	Other
Response	In some cases, they have become more isolated. Less social
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Name	John
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	John Collins, Mass General
Demographic	Family member of an autistic individual; Researcher
Response	Fewer opportunities for people with profound autism to be in the community. Insufficient staff has closed day programs and closed group homes, fewer jobs/volunteer sites. Families continue to be required to be home to supervise without support services. Need better supports for families, career paths for workers, training for staff and clinical staff working with people with profound autism, more telehealth, online healthy programs, alternative options for exercise Have state universities open gyms and recreation facilities to these state residents for free use as part of a healthy living protocol.
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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 have PTSD from having to isolate. I have resentment in my heart for a government that deliberate turned a blind eye to how all this could have been avoided. I have no faith in anything that is being done at a federal level. Physically? I have had COVID 3 Times while being unvaccinated and vaccinated and I don't feel any different. I can still walk talk and breathe like it never happened.
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Name	Jonathan Fratz
Demographic	Autistic individual
Response	In the winter of 2021, I was infected with COVID and had to miss school for a month. As an autistic individual, I already had difficulty socializing with my peers, which was made even worse through the need to social distance and attend school via virtual learning. I was attending a new high school virtually and being sick delayed my return to campus. This negatively impacted my mental health, increasing my anxiety and depression, and making me feel even more socially isolated. In addition, I suffer from asthma and other physical conditions that were also negatively affected by my having COVID. I feel that my mental health never really recovered from the impact that COVID made, during the lockdown and when I got sick. I did not have access to my supports and services during COVID, including physical access to my behavioral aide. I had to interact with them virtually, which did not really help. I have severe anxiety and high level of frustration. The pandemic only made my anxiety worse. I received virtual services from my school psychologist, along with support from my family and therapists at home, but it was an extremely difficult time for me.
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Name	Jonni Jordyn
Demographic	Autistic individual
Response	I'm unaware that covid-19 had specific connections to autism or mental health. I've had two cases that were so mild, I had NONE of the classic symptoms (I had all my vaccinations.) I'm seeing my therapist today and will set her on the hunt to learn about these.
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Name	jorja harper schall, OHSU lend
Demographic	Autistic individual; Researcher; Representative of advocacy organization
Response	Anxiety getting out
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Name	Josephine Weber
Demographic	Family member of an autistic individual
Response	None
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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
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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	Lock down and isolation was not good for anyone But for an autism person who is also non speaking it was that much harder on them and their families
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Name	Jules Good, Autistic Self Advocacy Network
Demographic	Autistic individual; Representative of advocacy organization
Response	Long COVID is itself a co-occurring health condition. Autistic people have been found to have significant sequelae after infection. More research on autistic post-COVID experiences is needed, especially for Black and Hispanic people who “are more likely to report symptoms of ‘Long COVID’ than their White peers” though “White people are more likely to have a documented case of the illness”. Because of the heightened risk to our health, many disabled people have continued to take COVID precautions while many nondisabled people have stopped. Many autistic people are dismissed as “overly anxious” about COVID-19 when we insist on PPE and other precautions. In some cases, disabled people have delayed medical care because their providers refuse to wear PPE at appointments. We would like to see acknowledgment of PPE in medical settings as a reasonable accommodation under the ADA. As public awareness and reporting on COVID-19 has decreased throughout the pandemic, vital COVID-19 resources have disappeared. ASAN had to end its COVID-19 case tracker due to lack of data. Project N95, which donated vetted PPE to those in need, had to shut down due to decreased public support for masking and a resulting lack of donations. The loss of crucial resources as COVID continues to circulate and take lives needs to be addressed. COVID is an airborne virus, and proven methods of transmission reduction such as air quality monitoring, HEPA filters, and respirators should be broadly used.
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Name	Julie Bresette
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Julie Emig
Demographic	Family member of an autistic individual
Response	Nothing in our family related to autistic child…just the standard need to adjust to the consequences of isolation from Covid. Plus my spouse suffers from long Covid. The ramifications of long Covid for families in general are desperately in need of study to garner education and support.
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Name	Julie Lackey, OKIPSE Alliance
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response
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Name	Julie Schweitzer, UC Davis
Demographic	Researcher
Response
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Name	K
Demographic	Autistic individual; Researcher
Response	COVID-19 infection and illness worsened co-occurring conditions for many autistic people. Pre-existing fatigue, GI dysfunction, and dysautonomia could all be worsened, or they could newly develop or reach clinical levels. Additionally, the stress of the pandemic and quarantining worsened depression, anxiety, and OCD for many. Loved ones becoming ill could also severely negatively impact mental health, especially if the loved one died of COVID or a related complication.
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Name	K
Demographic	Autistic individual
Response
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Name	K
Demographic	Autistic individual
Response
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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	Vaccine hesitancy revived a reducing fear of autism being caused by them. Isolation massively hiked up the loneliness and ostracization of us from society Progress being made socially has regressed dramatically in 4yrs Masks make lip reading and auditory cues and more blurry/non-existent
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Name	Kacey M
Demographic	Autistic individual; Family member of an autistic individual
Response	I am often unable to breathe through my nose, constant nasal congestion, food processing issues has become more frequent, social isolation, chronic fatigue, constant anxiety for health
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Name	Kaela
Demographic	Autistic individual
Response
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Name	Kai
Demographic	Autistic individual
Response
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Name	Kai C.
Demographic	Autistic individual
Response	It’s scary because we are now seen and treated as second class citizens because we’re considered disabled. I don’t want to be the last person in the hospital to be seen because I have so many comorbidities someone thinks I’m better off dead. Frankly it’s awful how disabled people on the whole are treated in this country and how we’re frequently the least of anyone’s considerations.
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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	We did not have COVID-19 to my knowledge
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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
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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	Could make them more nervous to go out In Public
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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	It allows more remote services and that is a good thing
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Name	Karen P, Special Educator/Autism Consultant/BCBA
Demographic	Service provider, health provider, or educator
Response
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Name	Karen Scallan, Parent of Individual (22yo) with Autism and Down syndrome
Demographic	Family member of an autistic individual
Response	Isolation was profound and lead to depression in many.
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Name	Karen Weigle, National Center for START Services and Chattanooga Autism Center
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response	Our research indicates it parallels that of the general population with the caveat that the worsening of mental health is both more common and more intense for people with autism (as was the case pre-pandemic). We must remember that physical pain and emotional pain are biologically the same and that we must use multi-modal approaches to treat it, with less reliance on medications and more on building PERMA (a positive psychology term first defined by Seligman, which outlines "ingredients" necessary for health and wellbeing: Positive emotions; Engagement; Relationships; Meaning; Accomplishment) through a variety of possible supports and/or treatments.
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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	None for me personally.
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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	It’s hard to know how we’d be without Covid, but I see so much more anxiety in my kids than I ever experienced.
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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 feel it made my physical symptoms worse
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Name	Katelyn
Demographic	Autistic individual
Response	I've has much more issues with memory and brain fog and it's made my learning disabilities worse.
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Name	Kathleen Meyer
Demographic	Family member of an autistic individual
Response	I don't know. We were able to isolate and vaccinate.
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Name	Kathleen Walker
Demographic	Autistic individual
Response
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Name	Katie
Demographic	Autistic individual
Response
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Name	Katie
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Katie DuPree-Magat
Demographic	Autistic individual; Family member of an autistic individual
Response	Showed us working in an autistic friendly way (from home) is possible and benefits the many people, not just Autistics. Companies just need to be held accountable to keeping these accommodations.
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Name	Katya Siddall-Cipolla
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	There is a much higher rate of long COVID in this population, and people who were able to work and enjoy life are now almost completely disabled. It’s a public health crisis.
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Name	Kay
Demographic	Autistic individual; Family member of an autistic individual
Response	I personally feel it’s more complicated to socialize as an autistic person after the pandemic as the isolation hurt my ability to socialize in person.
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Name	Kayla Weant
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Increased anxiety and depression
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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	Autoimmune conditions, long covid, fibromyalgia symptoms are often worse for autistics. These have gotten worse with repeat covid exposure
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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	I don't have evidence, but my memory and anxiety/depression is much worse since having covid. And I'd assume it also has made my immune system worse. My knee joints also hurt for a very long time after covid.
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Name	Kelly
Demographic	Autistic individual; Family member of an autistic individual
Response	Severe anxiety and hypochondria, panic attacks, burnout, Raynaud’s Syndrome, tachycardia, increased sensory issues
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Name	Kelly Howard
Demographic	Family member of an autistic individual
Response
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Name	Kelly King
Demographic	Family member of an autistic individual
Response	COVID left a mark: learning loss, ineffective remote instruction and telehealth, lack of exercise, isolation, habituation to the home and loss. Some have yet to leave their homes. Fears persist. Needed residential services (RFTs) were unavailable and remain so. Therapies ceased so treatment stopped. Teletherapy was most often ineffective and individuals disengaged. Is there effective grief counseling? Those in group homes were cut off from their family, many could not communicate and quality of care is questionable across the time period. Disruption of the schedule and routine precipitated an increase in MH issues.
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Name	Kelly L. Nimtz-Rusch, DNP, RN, The Autism Collective
Demographic	Other
Response	Not entirely sure we know at this time. We believe there was a delay in diagnosis as many of the gold standard diagnostic tools could not be administered with masks on. Needed early intervention services were delayed and early interventions result in better outcomes. As routine and structure is often important regulating factor, many found autistic individuals suffered from severe dyregulation, inability to understand the change in routine, and frequent meltdowns. This impacted the family structure as many were ill-equipped to handle this level of meltdown on daily basis.
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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	For me, the COVID-19 lock down was a great relief. The solitude was a great benefit to me. The isolation helped me build the strength to get all the COVID vaccinations, boosters and tests. As a result, I never got the virus or any symptoms.
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Name	Kendahl Damashek
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Brain fog, inflammation that exacerbates diabetes
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Name	Kenneth Kaye
Demographic	Autistic individual
Response	I don't have enough context to provide an answer for everyone, but for myself long term physical condition degradation as well as mental degradation are apparent, and affects me not only emotionally, but also in my ability to provide and care for myself.
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Name	Kerri Greig
Demographic	Autistic individual; Family member of an autistic individual
Response	No idea. I wouldn't think that would have such a significant impact as to warrant it's own question.
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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	Everyone has mental health problems post covid. That whole thing did not have to happen, regardless, isolation and unpredictability, loss and pain, all of that has a negative impact on people in general. It was a struggle for everyone, worse for those who depended on their routines.
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Name	Kevin Gerrity, Project Beacon TX
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I do not have a view on this question...I do not see my son being impacted...more of an impact on the caregivers
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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	We need research into the impact of long COVID on this population as well as the general population. With increased anxiety of many Autistics, the fear of contracting COVID and fear of death of oneself and for loved ones has left an impact on people diagnosed with Autism. Anecdotally, Autistics have expressed significant trauma related to being isolated during the pandemic.
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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	COVID-19 infections can cause worsening of physical conditions such as POTS, common in autistic people.
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Name	Kia Green, Emerge, Inc.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Many individuals in my care with Autism regressed. It have been very hard for them to return to life as it once was. Many preferred activities no longer exist. Many individuals just cant bring themselves to leaving the home. Many others have developed a change in compulsion and or obsessions.
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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	The [profanity redacted] downs that occurred with the pandemic have been catastrophic for individual with autism. Telehealth is a joke and does not work with most children on the spectrum. Long wait lists have been made even longer since Covid pandemic.
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Name	Kristin Botwinick
Demographic	Family member of an autistic individual
Response	Some young adults were left with nothing as far as programming, supports and services for years as there was a drastic slow down in processing applications
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Name	Kristin H.
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Covid took my then five-year-old out of a school environment and prevented him from having the education he needed at such a formative age. In addition, he regressed in terms of toileting, and went from almost 100% potty trained to not potty trained anymore At eight years old.
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Name	Kristina Funk
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Hypermobility joint damage and cardiovascular health
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Name	Kristina Tober, parent
Demographic	Family member of an autistic individual
Response	The isolation and complete lack of services during the pandemic had a far greater impact on this population than the virus itself.
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Name	Kristoff Furgiuele-Weis
Demographic	Autistic individual
Response	Depression has gotten worse
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Name	Krystin LaBarge
Demographic	Autistic individual; Family member of an autistic individual
Response	I am of the belief that we are not yet fully aware of the extent COVID19 and has impacted co-occurring physical and mental health conditions, but I have experienced odd health occurrences after having COVID myself, and have many family members who fall into the autistic realm. We have very little data on the experience of perimenopause for autistic individuals, so it is also hard to differentiate that with post COVID or Long Covid possibilities. But symptoms pertaining to commonly co-occuring conditions like POTS have been far worse after COVID- more feeling faint, light headed. Very easily fatigued even after extra rest. Brain fog. Autoimmune responses with no prior history before COVID illness. Gastrointestinal conditions worsened and I received a diagnosis of EPI, among other increased infections. My autistic child has had recurring headaches and migraines after his illness. We all continue to struggle to fight viral infections with immunity theft. And all have far mentally weaker health than prior to COVID. Currently I struggle to leave my house and have anxiety attacks often.
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Name	Kyla
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It has compounded significantly
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Name	Kylie
Demographic	Family member of an autistic individual
Response	Socialisation is much harder due to Covid 19 and being locked up all that time.
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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 was doing pretty okay health wise. Then I caught covid twice in one year. After the second round, I caught strep throat 9 times and had a hospitalization for a UTI. I think covid severely damaged my immune system.
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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	I am autistic. I have permanent Covid parosmia taste and smell distortion, as well as long Covid. I can barely function. I am weak and exhausted all the time. I never recovered after Covid. Yet I have to stay home and care for my 2 kids full time and I am suffering horribly
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Name	Laura Cosgriff, Lakewood
Demographic	Family member of an autistic individual
Response	It's made everything more challenging.
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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	For the issues I am most interested in - chronic pain or other physical health conditions, substance use disorders, health disparities related to being LGBTQIA+ - there has not been research on the effects of the COVID-19 pandemic, but it is potentially relevant for all of these.
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Name	Laura Mansdorf, Mother of an Autistic Child
Demographic	Family member of an autistic individual
Response	We've had to reduce the amount of social interaction we participate in as a result of attempting to avoid COVID-19. There are times where staff is not available due to an outbreak.
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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	I’m autistic. I recognize patterns. I know covid never left. I am vaccinated and wear a mask. Although living in one of the largest metro areas in the country, and traveling internationally, I have not gotten COVID.
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Name	Laura Stoddart
Demographic	Family member of an autistic individual
Response	Access to services delay and increasing wait times for professional assessments etc putting more pressure on families supporting children in the home.
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Name	Laura thimen, Parent
Demographic	Family member of an autistic individual
Response	My son aggression is worst, after the pandemic he is not able to be with others kids.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual
Response	On the side of physical health, COVID-19 infection led to GI issues and constipation that lasted long past the initial infection itself. On the side of mental health, the pandemic has worsened my anxiety and depression. It worsened my previously uncontextualized OCD symptoms to the point where they had to be addressed. It has made socializing and public gatherings even more difficult both because of the added fear of infection or infecting others, and because in-person classes, work meetings, and social events seem more intensive and tiring after I became acclimated to remote options.
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Name	Lauren
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Decompensated overall physical health due to inflammation from covid. Increased fibro flares. Chronic tinnitus and laryngitis. Improved mental health being able to work remotely and no forced social encounters.
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Name	Lauren Agoratus, SPAN/Family Voices NJ
Demographic	Representative of advocacy organization
Response	The effects of COVID were two-pronged for people with autism. Physically, they were more at risk of COVID complications . Additionally, in some states there were actually injuries or even deaths due to health disparities, including for people with developmental disabilities, as healthcare was inappropriately rationed. Also, COVID exacerbated mental health conditions; some people who didn’t have mental health issues do now, and some of those with pre-existing mental illness worsened. Many people with autism also had difficulty understanding the changes, hygiene, and social distancing associated with COVID, and some were unable to tolerate masking due to sensory issues. Long term effects of COVID (including Long COVID), both in terms of physical disparities and inequities as well as increased mental illness, remain.
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Name	Lauren Dehler
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Many, increased health issues with autoimmune conditions and physical health issues, emotional heath issues of isolation, trauma, anxiety, increased ableism and ignoring of calls from those in the disability justice movement.
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Name	Leah Bennett
Demographic	Family member of an autistic individual
Response
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Name	Leah Goeres, Citizen
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I have no suffered a lasting impact of COVID-19 infection.
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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	Lack of support and care during the COVID pandemic. Isolation and masks and inability to see or “ read” the person examining me.
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Name	Lee S.
Demographic	Autistic individual
Response	Those were terrible times as the typical social structures, general scheduling patterns and behavioral processes that many of us studied for years to try and accommodate all changed overnight. This still continues to this day, since it has been noted that people are continuously recovering from the changes brought on by Covid, so to are many Autistic individuals who must now start from square one or risk negative impacts from their new inability to fit in.
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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	I stayed home with my son with no help for over a year and a half without going out in the community at all in fear that if I got Covid and died or were in the hospital there would be no one to care for my son. If I died and he was placed in ECF it would be so cruel for him as it would increase his aggression and he would end up hurting someone and in a very bad situation with no viable solution in sight. Literally torturing my son because there are no appropriate long term housing/supports specially designed for those with high behavioral acuity needs.
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Name	Lekeisha Williams
Demographic	Family member of an autistic individual
Response	Mentally
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Name	Lesley
Demographic	Family member of an autistic individual
Response
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Name	Leslie
Demographic	Autistic individual
Response	Now it is psychologically difficult to go to places .
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Name	Leslie Lussier, Parent and Guardian
Demographic	Family member of an autistic individual
Response
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Name	Leslie Welch, parent of adult with autism
Demographic	Family member of an autistic individual
Response	During covid, the isolation was incredibly hard on our son and we couldn't explain it to him. He lost his entire world, except us, and he depends on the consistency of that world to be able to function. It was hard to access his typical drs and sometimes his medication as well.
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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	No idea
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Name	Lilja
Demographic	Autistic individual; Family member of an autistic individual
Response
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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	Lots of programs and services have shut down. Transportation is terrible. Programs have all been forced to become community based which is pathetic and with covid, was and still is dangerous at times.
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Name	Linda Gone , Parent
Demographic	Family member of an autistic individual
Response	Better hygiene
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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	We are tired of people trying to get us to take the [profanity redacted] jab. After I watched the 3 shots my mom take kill her immune system, and after the 2nd shot my dad had a massive stroke that sent him on a life flight to Altoona PA 4 weeks before Christmas in 2022....and after having 4 of my own physicians tell me NOT to get it, trust me I don't need it. I haven't had Covid the entire time, not once, I don't mask either, I refuse to as it was causing my Rosacea to go up into my eyes and had constant eye styes, so them [profanity redacted] face diapers are trash.
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Name	Linda Luxenberg, Parent and Professional
Demographic	Family member of an autistic individual
Response	More reasons for the vermont system to whine about the “staffing crisis,” which was problematic prior to Covid.
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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	None for us.
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Name	Lisa
Demographic	Autistic individual
Response
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Name	Lisa Graf
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	My son has a lot of anxiety about the epidemic. He still masks in school by his choice. He has had covid several times. We think he has PANs now but not sure what virus caused it.
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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	Better access to closed captioning, community meetings and written communication accommodations. Problems are less safe access to the gym for excercise. Would love wood land hiking clubs as an option.
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Name	Liv
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Liz
Demographic	Family member of an autistic individual
Response
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Name	Liz Martineau, Nashoba Learning Group
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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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 highlights the need for comprehensive stress models, particularly for individuals with long-term impacts like autistic people. Key insights: Physical-Mental Health Interconnection: The pandemic shows the link between physical conditions (obesity, heart disease) and mental and cognitive health impacts through proinflammatory responses. Inflammatory Regulation and Trade-Offs: The Evolutionary Stress Framework developed by the Center for Adaptive Stress suggests stress responses, including inflammation, are neurotype-specific adaptations. Understanding these as part of a broader health system is crucial. Calibration in Treatment: Current models often oversimplify stress as a direct cause of health issues. ESF advocates for a calibrated approach, adjusting various health factors for optimal support. Chemical, Physical, and Social Stress Factors: Factors like cytokines (IL-6, IL-7, IL-15) are significant in stress adaptation and immune response, especially under social isolation. These should be integrated into health support models​​. COVID-19 underscores the need for dynamic stress models in healthcare, accommodating the complexity of individual health responses, especially in autistic individuals and those with neurological disabilities.
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Name	Lori, mother of 32 yo with autism
Demographic	Family member of an autistic individual
Response	My daughter is a rule follower. It makes her very nervous when/if people didn't wear masks. Research said we should wear masks so she couldn't understand why people weren't doing what was best for them and everyone else. This caused her a great deal of anxiety and made it hard for her to venture back out after the pandemic was considered over.
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Name	Louis
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	In my experience, I have had long covid and chronic fatigue syndrome as a result of the covid-19 pandemic. Myself and many people I know have really struggled with returning to social life even years after the pandemic, and feel there's been a sort of loss of social skills and regression of other skills mental and physical as a result. I think many are still feeling the fall out of the isolation, causing increased anxiety and depression. As for existing conditions prior to the covid-19 pandemic I and the many other autistic people have experienced increased symptoms of these conditions like increased pain, fatigue, musculoskeletal issues. Another effect that I have seen is anxiety around sickness and health.
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Name	Louise
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Luca Hardt
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I was working in a group home for teenage boys with autism when the pandemic began. Their routines were severely disrupted and they did not understand why. This led to high stress and restlessness in all of the boys, which led to violent behaviors. Staff were frequently injured, and the use of safe restraint became a daily occurrence. With a lack of previously available options due to shut downs, damaged property and sensory equipment, lack of maintenance workers, and shipping delays, fighting staff to invoke safe restraint became a sensory activity. There was an incredibly high rate of turnover at the house, meaning the boys could never form necessary bonds with new staff. We were frequently understaffed. Female staff were assaulted while working with boys who were supposed to be male staff only due to a history of inappropriate sexual behaviors. Multiple established staff members had to leave due to injury. The trauma of the pandemic set those kids back years and created many, many dangerous habits. My persisting brain fog is potentially linked to multiple exposures to COVID. I have received every booster and vaccine, but still I have had COVID 4 times. The virus seems to affect me worse than others. In the last four years, I have declined in functioning. My relationships and ability to work have suffered. I had to drop out of my MSW with only 6 months left. Due to the way I was treated once I was obviously disabled, I will not go back.
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Name	Lynn Cass
Demographic	Family member of an autistic individual
Response
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Name	M
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	depression anxiety lack of financial support
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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	Increased social anxiety and compulsions around germs
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Name	Madeline Lodge
Demographic	Autistic individual
Response
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Name	Madison
Demographic	Autistic individual
Response	Isolation exacerbated my symptoms
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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	Nobody is the same as they've been before Quarantine. My CPTSD has evolved into something much more life-defining since quarantine. If I didn't have my 40-hour comhab support I couldn't function either in society or here alone.
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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	Educational loss and social isolation severely exacerbated and no compensatory services as a result
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Name	Marcella Schieffelin, Member Colorado Developmental Disabilities Council
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	I’m not sure.
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Name	Maresa
Demographic	Family member of an autistic individual
Response
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Name	Mari Savickis
Demographic	Family member of an autistic individual
Response	I can only speak for my son, but he could not do Zoom. We are fortunate in that we have the resources to help him and get ABA in the home during the pandemic to work on social skills and needs. He was already behind to start and this just set him back further.
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Name	Maria Garritt
Demographic	Service provider, health provider, or educator
Response	The impact was HUGHE!!! By being isolated, individuals with Autism stopped receiving services and most of them regressed in their progress. Also, MANY individuals did not return to receiving services after the COVID-19 the emergency period was lifted. Another terrible consequence was losing many direct providers as people had to find other jobs and the vacancy positions were not filled out. Many positions were closed.
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Name	Maria Maiorano
Demographic	Service provider, health provider, or educator
Response	To be honest, I am not sure. I think that we will need many many more years to even begin to understand the lasting impact of COVID -19 infection and illness for people with autism. But the loss of learning through direct instruction in schools may show to be significant as these individuals get into their later school years.
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Name	Mariana Romano
Demographic	Family member of an autistic individual; Other
Response
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Name	Mark Byam
Demographic	Other
Response
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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	Unbelievable. Because mental health services are broadly more challenging, even more so for people with disabilities.
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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	COVID-19 exacerbated every single one of the many difficulties already faced by this population.
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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	For kids and young people, the COVID-19 epidemic gave them less time to work on social growth. I would say the pandemic set my daughter back at least one year, probably two. Also, the pandemic exacerbated her anxiety and depression. Like typical people, autistic people also do worse when they are isolated. They might not need as much interaction, but they do need some - which is why so many adults with autism struggle with depression once they age out of services / especially if they do not have meaningful employment or day services.
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Name	Mary Jo Cooper, Bay Cove Human Services & Boston Architectural College
Demographic	Service provider, health provider, or educator; Other
Response	continued and exacerbated isolation
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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	Health related issues with individuals with disabilities or Autism has brought forward in it inequities against individuals of color with autism and covid-19 long covid has significant damage to individuals with autism across the board of every health related issues .
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Name	Mattie Wentz
Demographic	Autistic individual
Response
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Name	May
Demographic	Family member of an autistic individual
Response
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Name	Meg Collier
Demographic	Autistic individual; Service provider, health provider, or educator
Response	I have been unable to work outside of my house since the Covid-19 pandemic. As an immunocompromised person with autism and ADHD, my entire way of life has changed since Covid-19. Since the CDC and the American government could not continue mitigating the pandemic and dropped mask mandates, people like myself have been left behind. I can not do many things I did before the pandemic including gather with people, eat out in restaurants, or shopping in crowded places. I worked for a radio station for many years and attended many concerts before 2019, now I couldn't possibly imagine being able to attend a concert because of an airborne pathogen that could cause me to be even more permanent.
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Name	Megan
Demographic	Service provider, health provider, or educator
Response	Fear. Quite a few of our participants now have an overwhelming fear of the world and what being 'sick' means. School age participants missed out on education, as virtual was not effective for them. They were not given the opportunity to make up for that missed time, plus the regression that occurred. We are seeing less people willing to be caregivers since COVID, so many of or participants are without the supports they needs to progress and be successful in life. There is a general shortage of medical professionals as well.
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Name	Megan
Demographic	Family member of an autistic individual
Response	My son has gotten COVID 19 twice and both times it increased his meltdowns, irritability, aggressiveness towards others While physical symptoms of COVID have been mild
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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	COVID-19 has changed the world 100% for our vulnerable population. Work, school, interactions made available at a distance via telehealth have helped. School, healthcare, mental healthcare structures that are in place are decidedly not supportive of autistic people.
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Name	Megan McLaughlin
Demographic	Family member of an autistic individual; Researcher
Response	On the one hand, many autistics reported feeling much lower levels of stress, since they could go to school or work on Zoom and avoid dealing with unforgiving people in person. On the other hand, people often report being highly stressed by the unpredictability of another, similar illness arising. The nation's treatment of autistics during the pandemic was shameful--as witness the catastrophically high death rates within this population. But so far as I can tell, no research has been done on the incidence of long Covid within the autistic population. Given their other vulnerabiities, it seems likely that long Covid would be an especially grave problem for this population.
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Name	Megan Mitchell
Demographic	Autistic individual; Family member of an autistic individual
Response	For me personally I have not physically recovered. Since having COVID I went from making over 46K per year, to making 25K per year. I have had so many absences for my health that I am regularly taking unpaid leave. I went from a thriving family to struggling to make ends meet. I don't know how to access the government systems to possibly go on disability, or how to get help.
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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
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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	As an Autistic physician caring for Autistic patients, my personal observations are that Long COVID has had a devastating impact on Autistic people of all ages. We know that Autistic people have higher rates of Long COVID. What we see is that Autistic people with an underlying vulnerability to multisystem neuroimmune conditions, that may or may not have yet manifested, COVID can put them over the edge. Given that Autistic adults already have a 2.5-8 times increased rates of being unemployed or underemployed, and the known relationship of unemployment to chronic illness, the role of Long COVID in this equation becomes even more concerning.
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Name	Melanie Del Ponte
Demographic	Family member of an autistic individual
Response
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Name	melany hansen, parent
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	isolation. "online" issues. interpersonal skills.
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Name	Melissa
Demographic	Autistic individual; Family member of an autistic individual
Response	It’s traumatic for me when I get sick because of the overstimulation of my bodily functions. Not being able to breathe well or coughing constantly or having pain I can’t do anything about is enough to cause me to go into an autistic meltdown. It’s almost impossible to function when I’m sick.
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Name	Melissa Foster
Demographic	Family member of an autistic individual; Other
Response	my son has a harder time out in the community. Can only stay out for an hour tops.
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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
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Name	Mia
Demographic	Autistic individual
Response
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Name	Michael
Demographic	Autistic individual
Response	The job market is tighter and more aggressive. Coworkers are the biggest threat to us frequently. I cannot hold on to a job long. The fear and risk from COVID is an ongoing concern as I work in healthcare. Stress from being sick has been significant.
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Name	Michael Confoy, parent of child on the spectrum
Demographic	Family member of an autistic individual
Response	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	This needs to be understood. I personally have had novel, apparently COVID-19-related adverse experiences that are outside my experience over the past 70 years or so.
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Name	Michaela
Demographic	Autistic individual
Response
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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	Regression in skills and increased mental health issues have occurred in this population. Anxiety and depression are still at a high level. And skilled specialists are hard to find for treatment and support.
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Name	Michele Lappin, The Center for Exceptional Families
Demographic	Family member of an autistic individual; Representative of advocacy organization
Response	It has definitely made accessing healthcare more difficult. Mask wearing is extremely difficult for some Autistic children and adults. It is also hard for them to understand language when other people wear them and talk. Virtual options for speech, physical, and occupational therapy did not work for our Autistic children. Hospitals only allowing one parent with a child in the ER made accessing care difficult because some Autistic children need 2 people for safety purposes. Overall it made accessing healthcare for anything including co-occurring conditions challenging.
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Name	Michelle Goldberg
Demographic	Family member of an autistic individual
Response	I do know that it was difficult to get back into a routine
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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	Basically 2 years of little to no schooling - the burden on parents was intense. The autism community was shameful in it's shunning of vaccines leading to continued outbreaks (in January 2024) of Covid-19.
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Name	Michelle Jace
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response	I think many autistic people thrived in the solitude of lockdowns due to Covid19 and they are hoping to get back to a quiet environment like they had before. However, many autistic people also struggled significantly during lockdowns because their routines, education, medical needs, and social plans were stopped and they have been unable to catch up or really find their stability again. I think more work from home and telecommunication opportunities need to be implemented particularly in healthcare, school, and the workforce. Governments should find incentives for businesses to hire more disabled employees as well as incentives for providing disabled employees with work from home positions. The impact of long covid is concerning for everyone, but for people already living with a disability like autism, the comorbidity can further impact ability to function within society.
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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.
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Name	Michelle OConnorTeklinski
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	There seems to be increased aggression and behavioral changes. Is this tied to the vaccine or illness?
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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	Access to regular supports, accommodations, etc. has varied due to the strain on the systems that normally provide them. Now that COVID-19 is less of a concern in general, the shift back to on-site employment is interfering with many autistic people's ability to self-support, and increases stress which exacerbates medical and mental health issues. Family stress because of other members of the family having cabin fever, anxiety over lack of rule compliance, etc. also contributes to stress levels.
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Name	Michelle Surgenor
Demographic	Family member of an autistic individual; Researcher
Response	It has desperately made mental health problems worse
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Name	Michelle, LMFT in California
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Increased social distress and anxiety
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Name	Mikol Bailey
Demographic	Autistic individual
Response	Covid-19 has disabled autistic people, along with the broader population. The effects of the pandemic have worsened health outcomes for autistics.
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Name	Mimi Rankin Webbq, Parent of 3 with Autism
Demographic	Family member of an autistic individual
Response	Society deems us lesser beings even more now than ever due to Trump & Repub policymakers openly allowing blocking access to healthcare,education & community with refusing to even simply mask up & get vaccinated. The anti-vaxx movement is openly anti-autistic people. You should know that already. We are dangerously close to prewwII level treatment of the disabled as nonhumans & worthy of experimenting on & expendable. Basic rights are being stripped & access denied to education, community &healthcare almost daily in the current political climate.This makes people even less inclined to accomodate, or care to provide access to services and education than ever. Sometimes its a fight just to access the grocery store without being made to leave.Same thing happens with healthcare & education.
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Name	Mina
Demographic	Autistic individual
Response	I have found the effects of long COVID to have a significant impact on my life. Fatigue is now a constant. Executive dysfunction and brain fog have worsened. My performance at work has decreased measurably and I cannot communicate as effectively as before. Anxiety and depression have also intensified. Additionally, despite dozens of visits to PCPs and specialists in the 18 months since infection, I’ve not been able to find a single medical professional who will agree that my symptoms are related to long COVID. Even though they’ve been unable to find any other conditions that could be causing such chronic fatigue.
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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	Since many of us also have autoimmune issues, once again, ignorance on the part of providers and the public is the biggest challenge.
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Name	Molly
Demographic	Family member of an autistic individual
Response	COVID lead to deep depression in my very young child.
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Name	Molly Schenker
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Other
Response
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Name	Monica Allen
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I do not have data to support this but I imagine the Autistic community suffered a disproportionate amount of deaths and long COVID compared to the general population. This issue again supports the need for funding, education, retention, PPE for home health workers under HCBS (home and community based services), so Austistic people and disabled people are not forgotten and neglected. In general, more training about long COVID symptoms is needed across the board, especially for people who may experience symptoms and/or communicate differently.
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Name	Moriah Adamick, parent of Autistic child
Demographic	Family member of an autistic individual
Response	Absolutely. Many of the services and supports have been ineffective during COVID
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Name	Mother of an autistic daughter
Demographic	Autistic individual; Family member of an autistic individual
Response	Primary effect is increasing social isolation.
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Name	Myles Davis
Demographic	Autistic individual
Response	isolation has increased anxiety and depression rates and worsened certain sensory deficits and internal functioning due to changes in routine
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Name	N Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	I personally have struggled with more chronic pain and immune deficiency since contracting COVID, and experienced pretty severe depression and anxiety symptoms during the height of the pandemic. I cannot "mask" socially the way I used to due to lack of social interaction during lockdowns and experience more social burnout and more difficulty regulating sensory needs now. My daughter has been constantly sick with many viral illnesses since contracting COVID in 2022 and now is often fatigued, and her growth has stalled as a result.
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Name	N/A
Demographic	Autistic individual
Response	Personally no physical impact but mentally after the lockdown it has been harder to get up everyday at a scheduled time to work, I want to be able to fulfill my days with what I want to do I don’t want to be required to do a job for 8hours everyday. I want to wake up and make breakfast for my family and clean and go do something fun or draw it’s also really hard to balance work/home life it’s like I can’t dedicate myself to both I always end up losing myself in one or the other usually it’s in work when I’m home I’m doing my best at work I’m giving barley anything, I recently had to cut back to 32 hrs a week instead of 40 because I wasn’t able to be a human outside of work all I did was come home eat and sleep now I have more time but it’s still not enough.
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Name	Nancy
Demographic	Family member of an autistic individual
Response
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Name	Nancy D Miller, VISIONS/Services for the Blind and Visually Impaired
Demographic	Service provider, health provider, or educator
Response	Access to the internet, assistive technology and affordable connectivity is crucial. Social isolation is a huge issue for both people with autism and people who are blind. It is double the problem if they are co-occurring conditions.
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Name	Nancy Hauprich
Demographic	Family member of an autistic individual
Response	The isolation of not being able to get out in the community has caused long term anxiety issues
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Name	Nancy Williams
Demographic	Family member of an autistic individual
Response
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Name	Naomi Mittet, Circadian Sleep Disorders Network
Demographic	Family member of an autistic individual
Response
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Name	Natalie
Demographic	Autistic individual; Family member of an autistic individual
Response	COVID has made me realize how absolutely minimal my socializing can be and still feel ok. This is good and bad. If I ever have to go back to work in an office instead of working from home, that will be very difficult. Then again, it was always difficult. Working from home has helped me tremendously.
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Name	Natalie
Demographic	Autistic individual
Response
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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	Covid 19 itself had little effect on my family. The fear, social isolation, lock downs, wearing of face masks in schools led to massive anxiety issues in my youngest daughter around school attendance and possibly played a part in her developing ARFID.
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Name	NaTasha Turley
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Many individuals lost access to their service providers, and thus experienced regression or exacerbation of behaviors of concerns and co occurring symptoms. It was during the pandemic, that my own autistic Child begin having suicidal ideation.
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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	Before lockdown: scared to get the virus, it was difficult for them to go ahead with things. Lockdown At that moment most felt safer,not only because they were safer, being deprived from the virus, but because they could stay home, with less stimuli… They experienced a new way of living that suites them more… After lockdown it is more difficult to get out of the house, because they experienced during the lockdown how safe they felt at home…
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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
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Name	Neoli Hernandez
Demographic	Autistic individual
Response	Potential activation of dormant familial health issues: immune system flares, skin issues, gut problems, sleep cycle disturbances, food intolerance, heightened sensory sensitivities, metabolic disorder, familial hypercholesterolimia
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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	Increased anxiety in public environments and potential cognitive impairments from COVID infections (still being researched, but there seems to be ties to existing neurological disorders like autism, ADHD, FND, and schizophrenia)
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Name	NICOLAS LINARES-ORAMA, FILIUS CENTER-UNIVERSITY OF PUERTO RICO-MEDICAL SCIENCES CAMPUS
Demographic	Researcher
Response	A high prevalence of ASD in Puerto Rico after the pandemic, perhaps due to lack of pre-natal visits of mothers afraid to be sick with COVID, and the extreme tension in mothers that could have changed their immunology and affect the baby's brain.
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Name	Nicole Corrado
Demographic	Autistic individual
Response	The pandemic delayed moving out, which caused incredible stress for me as there was a high profile very negative news portrayal of autism at the time in the city I was living in. But Zoom was the best thing that happened because it allowed social interaction and education from the comfort of one’s own home.
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Name	Nicole Collings
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I’m not sure about the infection and illness itself (I think the long-term impacts are still being investigated); however, the pandemic itself resulted in high levels of anxiety/panic for many, exacerbated mental health conditions, delayed access to health (and mental health) services resulting in worsening/compounding conditions. The pandemic caused trauma for many, and we are still suffering the consequences of that trauma. Autistic individuals have been more vulnerable to the aforementioned due to their neurobiology and high rates of co-occurring conditions.
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Name	NICOLE LEBLANC
Demographic	Autistic individual
Response	COVID19 CAUSES PTSD , WORSENING SLEEP, FATIQUE, ANXIETY, TRAUMA SYMPTOMS IN AUTISM, LOW THYROID, BLOATING, GI ISSUES, HORMONE IMBALANCES, WORSENING AUTISM ADD, ANXIETY SYMPTOMS, DISRUPTS FIGHT FLIGHT. LONG COVID HAS COST ME 8+ GRAND OVER THE LAST 2+ YEARS
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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	It’s hard to say the full extent the Covid-19 pandemic had on autistic people but I know for myself there was a huge adjustment in social norms and this caused a lot more stress and emotional disregulation making a lot of tasks more difficult as I lacked resources and were surrounded by people who didn’t understand and expected me to just get over it.
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Name	Olivia
Demographic	Family member of an autistic individual
Response
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Name	Pamela Bows
Demographic	Autistic individual; Representative of advocacy organization
Response
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Name	Pamela MacAllister
Demographic	Service provider, health provider, or educator; Other
Response	Not as much as people would think. However in NJ the over 21 programs have become very selective of participants. So less is available.
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	I think that, to some degree, the COVID-19 pandemic has led to some autistic people having increased anxiety around germs and illness.
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Name	Parent
Demographic	Family member of an autistic individual
Response
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Name	parent
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	We lost all of our supports and many never returned. My daughter's day program closed for 14 months. She still has not gone back to her regular schedule. She was so disrupted by the change, that she is just not the same person. She remains afraid of masks. Also, we lost about 1/3 of the staff in her program. The program is still understaffed AND the new staff members are not as well-trained or liked by my daughter. We also lost all weekend programing and most of that has not come back. Her anxiety levels are clearly higher and staying that way. Physically, her psychiatrist believed some of her newer and more disruptive behaviors were triggered by inflammation resulting from covid. She did have covid, and while the expected symptoms (eg. cough, fever, etc.) were unremarkable, her disruptive behaviors increased markedly and quickly. Antibiotics helped, but her base line remains worse than before the pandemic.
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Name	Parent
Demographic	Family member of an autistic individual
Response	My son struggled tremendously during shutdowns and with restrictions. He entered high school with wider social gaps than prior. He worries significantly about the world shutting down again. Schools are still going easy on students since reopening, not holding students accountable for their work or lack of. Not helping prepare these students for college or work.
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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
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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	Loss of support staff Increased isolation and regression socially and emotionally Loss of educational resources
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Name	Patricia Thomason, Parent
Demographic	Family member of an autistic individual
Response
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Name	Patricia Wright, Proof Positive
Demographic	Representative of advocacy organization
Response
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Name	Patricia, Student
Demographic	Autistic individual; Family member of an autistic individual
Response	I developed juvenile arthritis after having COVID-19, due to a predisposition to auto immune conditions. And I became significantly more depressed due to the quarantine, ending up in an inpatient acute ward for a suicide attempt in August 2021. I have only recently returned to the same headspace as before covid.
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Name	Paul Ridikas
Demographic	Autistic individual
Response	It had a tramuatizing impact on physical and mental health conditions for autisitic people for COVID-19 illness and infection.
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Name	Payton
Demographic	Autistic individual
Response	COVID-19 was an event that shocked the country and we are still currently recovering from. There are many autistic people that watched the government put out the order for a 2-week quarantine to be met with people dismissing and outright disobeying this order in order to fulfill their own wants and needs. For many, it was simply a shift in the view of the world that became much less hopeful now that they know the selfishness of the average american. I don't know that much can be changed in regards to that.
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Name	Penny, Autistic adult
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Person with Autism
Demographic	Autistic individual
Response	Honestly the biggest issue for me is that society has now acted like Covid is over and with co existing health issues I feel at risk of Covid. Providers and agencies no longer affordable to ability to do things remotely instead wanting to come to my home or me to go into an office and this is especially worrisome for me during the winter when Covid cases rise. I feel like my own safety from Covid has been jeopardized by the return to normal attitude.
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Name	Peter Brown
Demographic	Family member of an autistic individual
Response	Covid-19 lead to further social isolation and greatly increased anxiety with long term consequences.
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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	Learning disability, communication problems,
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Name	Priya
Demographic	Service provider, health provider, or educator
Response	Some patients have developed severe cardiac and respiratory illnesses. Lot of patients do not like to wear oxygen masks and it's challenging to provide oxygen therapy. Isolation during COVID was difficult
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Name	Purna Waldow
Demographic	Autistic individual; Family member of an autistic individual; Other
Response	I have witnessed long COVID in one neurodiverse person I know. I have personally isolated, stayed current on my vaccines and have yet to contract a symptomatic case or test positive for COVID. I have not heard much from others around me how they were directly impacted by having the illness in relation to being autistic.
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Name	Quinn
Demographic	Autistic individual; Family member of an autistic individual
Response	The massive disruption of social routine. Most autistic people (not all!) appreciate and thrive through a similar routine, as it brings a sense of normalcy to us as we fluctuate internally. Another aspect that is not inherently tied to covid itself, but more so the internet/Information Age, is that the amount of misinformation and infighting that is both documented and spread without question. I am a proponent of self diagnosis; as getting an autism diagnosis can lead one down a path that is not entirely positive (as it can effect adoption; immigration; employment; social standing; etc), I do find it disheartening that so many people, young and old, find untrue or misconstrued information online about autism. I think we need to do two things; to help both of these issues. 1. We need a truly unbiased, humanized and yet scientific, database or news outlet or nonprofit to share current/modern autistic data & information… and it needs to be accessible to the average autist. We can not continue to live in the dark about our own experiences. Thousands upon thousands of people have been different over humanity’s life span; we are no different. We must just come to an understanding. And our information must be provided by an unbiased, scientific but feeling perspective. 2. There needs to be a AA/Al-Anon type group/nonprofit that is created entirely for the sharing of the information
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Name	Rachel
Demographic	Family member of an autistic individual
Response	the isolation for a group of people with social challenges has caused a negative impact the increased use of technology as a substitute for in-person interactions has its place but can be overused
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Name	Rachel
Demographic	Autistic individual; Family member of an autistic individual
Response	It’s made it harder for me to leave the house
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Name	Rachel
Demographic	Autistic individual
Response
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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	It’s kept us from living our lives the way we want to.
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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	Lack of in person services and therapies for a long time delayed any progress in speech
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Name	Rachel Swisher
Demographic	Family member of an autistic individual
Response
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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	Many autistic folks lost some of their peer support and consistently used social skills from meetings, school, and otherwise, creating more “bridging of the gap” to renew the skill sets. However, many autistic folks enjoyed the reprieve and the normalization of technologies that allow for our comfort, connection, and ease of life. Many believe that some options “enable” people, however, I am of the belief as a therapist and autistic human, that we need only challenge ourselves to our passions and necessities. If it does not impact our life whether we, for instance, order groceries online or shop in the store, it doesn’t need to be an issue.
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Name	Rajarshi Rit, The University of Burdwan
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	The LOCKDOWN taught us several things. Firstly, flexible work schedule is possible. Secondly, Advanced countries can put "Do not resuscitate order" on learning disabilities, which means your Authority believes our lives are "Less worthy" than yours, which harms us the most.
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Name	Raliat Bello
Demographic	Family member of an autistic individual
Response	Support in the schools for their education has declined for this group.
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Name	Rashelle
Demographic	Autistic individual
Response	I was isolated which caused my depression to worsen. But when I caught COVID the second time I was in a non-functional fog that sent me to the hospital and I could not stop crying. I couldn't do anything for myself. After a month I realized my depression was mostly gone but my anxiety became a lit worse. I couldn't hold down a job, I couldn't finish duties. I needed a change in medications
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Name	Reagan
Demographic	Autistic individual
Response	Best thing to ever happen. I felt safe for once. Not having to socialize. Most people couldn’t Work. So I felt human I felt normal. Many of my autistic friends totally felt the same. I wish we could go back in that time. Just without all the deaths.
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Name	Rebecca
Demographic	Autistic individual; Family member of an autistic individual
Response	Positive in some ways I believe. It gave some of us undiagnosed individuals time to assess and realize our entire lives were essentially a lie and us struggling and thinking we were some stupid freaks that is different from everyone else, THERE WAS A REASON we felt that. But, negative in that public services that previously were there were deemed a threat due to Covid 19 and is no longer here
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Name	Rebecca
Demographic	Autistic individual; Service provider, health provider, or educator
Response	COVID has made my health issues much worse. And doctors are not taking COVID seriously anymore. The public health concern over COVID is basically nonexistent. Those of us with chronic health conditions are extremely isolated because we feel we are the only ones taking precautionary measures anymore.
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Name	Rebecca Bowen, American Speech-Language-Hearing Association
Demographic	Other
Response
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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	Compounded social isolation.
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Name	Rebecca Faith Crews, Autistic adult
Demographic	Autistic individual
Response	Severe depression, ptsd, and new cooccurring chronic health issues
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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	Covid restrictions has resulted in more anxiety over going out in public, fear of getting sick, less social interactions compounding the existing social issues, failure to be able to separate from caregiver for long periods after public restrictions were put in place which also results in mental health stresses for caregivers.
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Name	Regina Conti
Demographic	Family member of an autistic individual; Researcher
Response	COVID-19 was more dangerous for autistic people. My son was sick with COVID-19 for several months on multiple occasions.
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Name	Rex Frasier
Demographic	Autistic individual
Response	Increase in avoidance in social settings, being a "homebody" or "shut-in" is more common, myself included. A lot of autistic people also have co-morbid immunocompromised health conditions that limit their ability to go into public spaces as safely as they used to since the country was so divided on the entire Safety Protocols for the pandemic.
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Name	Rhonda Moore
Demographic	Autistic individual; Family member of an autistic individual; Researcher
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Name	Rick Grossman
Demographic	Autistic individual
Response
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Name	Robert Briskie, U.S. Citizen
Demographic	Autistic individual
Response	Covid-19, unexpected cured my severe asthma. Opting for the Covid-19 vaccine felt safe until after Pfizer booster triggered chronic fatigue, pain, migraines&more. Diagnosed w/Factor V Leiden, Myocarditis, vasculitis onset&VITT, health workers offered no aid beyond diagnosis if at all. Despite healthy&exercising regularly, the booster's aftermath left me bedridden for 6mths. Conventional medicine provided no solution, turned to homeopath. Nattokinase:enzyme that dissolves blood clots, brought relief. Asked primary phys. to review any scientific studies done on enzyme to deem it safe. After proper review, got green light to use. All symptoms went away in month. I continued to see the homeopath Dr &we continued to see improvement. Still take Nattokinase b/c of the benefit that I continue to exp.. Still if decide to take break from it, will feel heart palps come back gradually, so I assume the booster caused irreversible dmg. Sci. study on mRNA vacc. hint at potential clot issue, echoing findings in ASDpeople regarding weak blood vessel function. I criticize govt's failure to warn those w/mental illness about potential harm&lack sharing importance of research/preventative care. The personal journey shows the need for informed decision-making in vacc. &comprehensive support for those w/ASD. I believe that the DNA based cov. booster causes the issue of VITT as well as the mRNA based. That is what my doctors told me, suppression of info. is causing lack of research.
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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	The lost a year of social/emotional learning and development.
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Name	Robin Baumeister
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	Given high stress and common co-occurring immune dysfunction, COVID-19 has impacted many autistic people. In my own personal experience, I am still recovering from an infection, and the illness was incredibly stressful; the sensory overload from illness can take a mental and physical toll. It is likely that many have experienced trauma from the situation. On the flip side, the move to more online/remote services has been very beneficial in improving access to care.
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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	Not able to attend school due to chance of exposure to virus.
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Name	Robin Rhoades
Demographic	Family member of an autistic individual
Response	Severe delay of development. More behaviors and aggression
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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
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Name	Rosemary
Demographic	Family member of an autistic individual
Response	It has made our family more isolated. School is no longer an option. It was described as ‘unsafe’ and that it n combination with previous school experiences has now made it a place my child cannot go. There was no transition, no gentle start, no explanation Ad to how this ‘unsafe’ place is now safe. There is an explosion in non attendance due to unmet needs. Also, we had lost the ‘habit’ of going out and meeting friends. Habit forming is so challenging with ADHD and object permanence issues means we have forgotten our friends and families, lost the habit of going out and meeting up.
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Name	Rosemary Brierley
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Changes in routine are challenging. Trauma from the pandemic not being addressed or supported
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Name	Rosemary M. Morgan
Demographic	Autistic individual
Response
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Name	Rowan Gibson
Demographic	Autistic individual
Response
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Name	Rowan Leshy
Demographic	Autistic individual
Response	I’m afraid to find out. I did have ling covid at least once.
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Name	Ruby Bard
Demographic	Autistic individual
Response	My immune system has only gotten worse since the pandemic. I normally would get sick once or twice a year (maybe an additional cold here or there). After getting COVID before we knew what it was, my body started falling apart. The MCAS and Ulcerative Colitis I probably had very minor before put me in the hospital. Ive been to the ER for one issue or another at least twice if not three times a year since the pandemic. My asthma has also been a wreck and Ill often get bad chest colds that need Prednisone to go away (Instead of one a year Its been three this year). I now get the Pneumonia Shot along with the Covid and Flue boosters every year because if I get pneumonia im in the hospital. Covid took all my problems and made them twice as troublesome.
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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
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Name	RuthAnn Winschel
Demographic	Autistic individual
Response	Covid did make things difficult in some ways. At the beginning of Covid it was extremely hard for me to wear masks especially disposable ones. The sensory feeling of the masks would cause extreme meltdowns for me. I was able to tolerate the fabric masks better but of course eventually learned that the fabric masks are not effective. With my mental health Covid made it a little challenging because I have been living with my parents who are emotionally abusive and Covid made it so I had to spend more time at home. Especially in the beginning when there was strict rules about times to be out in public and not being allowed to be out between 9pm-6am unless people were working. I never really had too much anxiety about covid and had accepted the possibility of dying from Covid. All the changes and uncertainty was a little difficult.
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Name	Ryan Bradley
Demographic	Autistic individual
Response	Depression Suicide Loneliness
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Name	Ryan Erdozain
Demographic	Autistic individual
Response
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Name	S
Demographic	Autistic individual; Family member of an autistic individual
Response	Yes, many autistic individuals are prone to developing pots after covid.
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Name	S.
Demographic	Autistic individual
Response	It has had horrible impact, especially mentally.Many autistic people are already isolated, the COVID 19 pandemic made it worse.
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Name	Sabrina Par
Demographic	Family member of an autistic individual
Response	Covid has drastically affected my son's depression and anxiety level in a negative way.
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Name	Sacha
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It is very hard to access support, respite care, social interactions, and therapies without risking your long term health because covid has been downplayed and not taken seriously for years.
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Name	Sam Stern, either individual person or democrat-center
Demographic	Autistic individual
Response	- By increasing the discussion of mental health it has made discussion of accessible locations and services a bit more normalize. - by giving folks a taste of what it feels like to suddenly have to enter crowded spaces after being in less busy places covid has helped give a common experience to describing the problem I face with busy places. - oddly folks now have a strange time table in their heads for adapting to changes that I can not meet which makes for negative impacts.
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Name	Samantha
Demographic	Autistic individual
Response
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Name	Samantha
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Samantha
Demographic	Family member of an autistic individual
Response	absolutely, more providers have gone to practicing on zoom which is not always a good thing. So many children missed school time and need services, so the waitlist are long and families are waiting up to two years. More therapists and teachers are leaving, which means students are not getting quality education or the services they need. Not enough staff trained to provide mental health for students with autism, they may be hiring...but no one applying
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Name	Samuel Pehrson
Demographic	Autistic individual
Response	Worsened depression and insomnia.
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Name	Sandra
Demographic	Family member of an autistic individual
Response
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Name	Sandra Doyon
Demographic	Autistic individual; Family member of an autistic individual
Response	I liked the isolation aspect but did not like wearing a mask so much.
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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	A lot of times because we’re more sensitive to everything, food is a huge thing and connected to our ability to handle illness like Covid. Refined sugars, highly processed foods, foods with chemicals, meat and dairy usually overwhelm our bodies as is. If our bodies are already taxed by not eating properly for us we are more likely to be sicker longer and more intensely. Same thing if we’ve been taxed also with the stress of having to wear a mask all the time. It runs our bodies down so we’re more susceptible to illness. I think what’s really important for helping us be able to go through times of illness, is learning how to cope with stress, eating a clean diet, and compassion and understanding from those who are dealing with the autistic person.
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Name	Sara
Demographic	Autistic individual; Service provider, health provider, or educator
Response	It seems anxiety may be higher now. Remote work and social suited me very well, and I am having a hard time re-building my tolerance for going out.
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Name	Sara
Demographic	Autistic individual
Response
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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	It makes it harder to access care. It diminishes endurance for tasks required to maintain independence. I actually found I was more socially successful when everyone wore masks. Now that no one is wearing them, I'm back to struggling and it's not something I enjoy.
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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	I don’t think there is a way to measure this. The IEP was not followed during the COVID lockdowns, so I’m sure there has been a lasting effect on my son’s learning disability.
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Name	Sarah Lau
Demographic	Family member of an autistic individual
Response
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Name	Sarah Marlowe
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The years of lockdowns - though we supported them from a public health point of view - were devastating to the mental health of my two autistic teens, and delayed both their diagnoses
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Name	Sarah McCarthy
Demographic	Autistic individual
Response	Hearing issues
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Name	Sarah Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	Loss or damage of sensory function which has led to further difficulties with sensory processing, extreme fatigue, more stress due to worsening services/ increasingly convoluted processes/ under-funded institutions that don't provide stable environments for work or learning
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Name	Sarah Mouser
Demographic	Family member of an autistic individual
Response	Lack of therapy accessibility
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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	Covid has increased the volume of patients with co-occurring conditions like POTS to the extent that many existing patients aren’t able to get appointments with their specialists.
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Name	Savannah Higgins
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response
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Name	Scott Jones
Demographic	Autistic individual
Response	many of these comorbidities also cause these individuals to be more susceptible to more severe cases of covid 19. there is also the issues of social isolation causing issues of socializing that way and then having to go back to office and recharge their schedules and patterns they just got accustomed to.
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Name	Sean Heupel
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Other
Response	I asked this of the autistic community on TikTok, and overwhelmingly the answer was: the ability to be myself more often. Those working COVID-remote jobs usually stated greater productivity and job satisfaction. Many reported symptoms of stress being greatly reduced and enjoying remote conversations, versus in-person dialogue. The consensus overwhelmingly points toward a higher quality of life when working remotely. This information was gathered by inquiring of my own followers on social media and mass exploration of platforms, such as YouTube and TikTok.
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Name	Shannon
Demographic	Family member of an autistic individual
Response	My children have developed anxiety, depression, socially withdrawn, lost interest in things they use to enjoy.
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Name	Shannon Crandall
Demographic	Autistic individual; Family member of an autistic individual
Response	I feel covid-19 caused even more isolation for neurodivergent individuals. It exacerbated anxiety and depression.
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Name	Shari Washburn, COPAA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator; Representative of advocacy organization
Response
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Name	Sharon Anderson
Demographic	Family member of an autistic individual
Response
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Name	Sharon Saavedra , Parent
Demographic	Family member of an autistic individual; Other
Response	Isolation Skill regression
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Name	Shauna Ikahihifo
Demographic	Autistic individual; Family member of an autistic individual
Response	An autistic young woman was one of the first COVID casualties in my small town. She had developmental delays that made her reliant on her caregivers and community to protect her and we fell short of that commitment. This was a devastating loss for our community, but also greatly impacted the emotional and mental wellness of her friends and classmates as well. My younger brother, who is also autistic, was unable to make the transition to online schooling and has had to repeat two years of school to make up for time lost during the pandemic. We are hopeful he will be able to graduate this year, but not being able to graduate with his peers really impacted his confidence and sense of self.
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Name	Shauna, Mother of ASD Adults
Demographic	Autistic individual; Family member of an autistic individual
Response	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	COVID-19 limited routines and access to programs that were getting these patients outside of their houses. These programs are significant chances for social engagement and support for care givers. Some children with autism had regression secondary to discontinuation of therapy in a pandemic.
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Name	Sheila Bell
Demographic	Family member of an autistic individual
Response	Covid exposed how our daughter was masking in school and now she cannot do it, leading to lack of education. We have recently learned that she has PDA.
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Name	Sheila Judge Leonard
Demographic	Family member of an autistic individual
Response
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Name	Shelby crane
Demographic	Autistic individual; Family member of an autistic individual
Response	The pandemic gave some of us the chance to take care of our mental health the way we need for others it made it worse because of how rude customers where, and how demanding and abusive employees where and still are and how they took advantage of our determination to not prove their ideas about our disability right.
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Name	Shelby Shifflet
Demographic	Autistic individual
Response	I have not experienced a COVID-19 infection.
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Name	Shellie Rubin, speech language pathologist
Demographic	Service provider, health provider, or educator
Response
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Name	Shelly Glennon
Demographic	Family member of an autistic individual
Response	Unknown to be honest.
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Name	Shelly Moss, Atypical
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	My family has yet to fully recover physically since having covid and have been denied medical treatment due to provider gaslighting and inability to believe that we still have issues. Both of my grandkids have been persistently sick for years now and not much help from the medical providers.
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Name	Shelly Witte
Demographic	Family member of an autistic individual
Response	I don't think covid has a lasting impact on autistic people specifically. The vaccine caused massive nosebleeds in my son though.
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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	Complete stop to services, if you were lucky enough to get any services. That says it all.
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Name	Sheri Mills, Prader-Willi Association USA
Demographic	Family member of an autistic individual
Response	Covid-19 completely upended routines and structure for our kids. Our kids who also have complex medical needs, do not feel safe, because everything (and I mean everything) takes more planning just to go somewhere. Fear leads to anxiety, anxiety leads to certain behaviors, those may lead to aggression and self-harm.
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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
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Name	Simcha Weinstein, NYADD & FTNYS
Demographic	Family member of an autistic individual; Other
Response
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Name	Sleep Research Society
Demographic	Other
Response
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Name	Sloane Walters
Demographic	Autistic individual
Response	COVID-19 has impacted therapy availability and autistic people are left having to “figure it out” until they can be seen by their therapists or doctors. This is incredibly damaging to the continuity of care we need.
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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
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Name	Stacey Senn
Demographic	Family member of an autistic individual
Response	Delayed diagnosis
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Name	Stanley Jaskiewicz, Parent of adult child with autism
Demographic	Family member of an autistic individual
Response	Our adult son's aunt's husband died from COVID-19. As a result, I take great precautions. (I have a medical condition.) I think my son sees this level of concern, and has anxieties about being in certain public situations.
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Name	Stephanie
Demographic	Autistic individual
Response
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Name	Stephanie Dulawa, UCSD
Demographic	Family member of an autistic individual; Researcher
Response	devastating for school and education
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Name	Stephanie Ranno
Demographic	Family member of an autistic individual
Response	The ability to work from home was very helpful but also led to back sliding for our kiddos in academics.
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Name	Stephen Silva
Demographic	Autistic individual; Family member of an autistic individual
Response	It has lead to more anxiety and stress. With COVID, kids were at home so they couldn't get the social interaction they need to succeed.
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Name	Steve
Demographic	Autistic individual
Response	Lockdown was a joy. My NT partner didn't find it so easy... Actual infection and illness? The same as for NTs, I think?
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Name	Steven Lunseth
Demographic	Autistic individual
Response	Personally COVID-19 lead to developing Fibromyalgia. Fibromyalgia has cause difficulties with getting proper medical care. It has caused my depression to get worse leading to greater suicidal ideation because of the fear it causes and the loneliness during a flareup. It is made worse by social isolation that comes with Autism.
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Name	Stevie Aubuchon-Mendoza
Demographic	Autistic individual; Family member of an autistic individual
Response	It has made me more agoraphobic. Not clinically, but it is a lot harder for me to go out and do the things I was able to push myself through before.
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Name	Summer Bammes
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Susan
Demographic	Autistic individual
Response	It ruined my physical health which impacts my mental health.
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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	It has increased isolation and reduced opportunities for nearly 2 or more years for individuals with autism to participate in society. This loss of opportunity has significantly impacted any progress made prior to covid in terms of education access, job access, etc.
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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	Not sure - but isolation is always a problem.
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Name	Susannah Fields, Parent
Demographic	Family member of an autistic individual
Response	Thankfully our family has been spared for the most part.
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Name	Suzanne
Demographic	Family member of an autistic individual
Response
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Name	Sym Rankin RN, APRN, CRNA
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Treat the damage sone by those who got the vaccine. Catch up the children who went without services during COVID. Get the insurance companies to pay for the therapies that work, not just medications to treat the symptoms.
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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	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
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Name	Taylor Sweeting, Autism/ Marfan Syndrome Self-Advocate
Demographic	Autistic individual; Other
Response	For me personally COVID-19 has had lasting affects in co-occurrence with my Marfan Syndrome, diabetes, and high blood pressure. Lasting lung complications, long COVID symptoms, and respiratory system irritation. On the mental health side of it, COVID left me with a strong sense of isolation as well as lasting anxiety and depression as a result of not only having the infection but due to the reaction from others from me having the infection.
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Name	Tempest
Demographic	Autistic individual
Response	COVID-19 is the cause of my POTS syndrome and as I said in the first question, it can exacerbate my sensory issues. Subsequently, the lockdown had an extreme effect on my ability to mask and cope with my autism symptoms.
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Name	Tetyana Davis
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response
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Name	TG
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Thomas
Demographic	Autistic individual
Response
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Name	Tiana
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Minimisation of experiences due to "shared experiences" during covid.
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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	Who knows. Probably a lot of us triggered with OCD. Personally, knowing the data I’m concerned.
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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
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Name	Tracey MacDonald, Profound Autism Alliance
Demographic	Family member of an autistic individual
Response
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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	In many cases, COVID has worsened the epilepsy and aggressive behaviors in those in our community. My daughter developed long COVID and her seizures went from 2-3 a week to 30-40 a week with multiple episodes of status epilepticus each week. This has been her new seizure baseline since getting COVID 2 years ago.
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Name	Tracy Johnston
Demographic	Family member of an autistic individual
Response
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Name	Trayle
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response
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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
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Name	Valerie Beckwith
Demographic	Autistic individual
Response	The lockdowns made socially isolated people even more isolated. Many of us who were in school during the pandemic feel “stuck” and are developmentally behind where we should be because we missed necessary coming-of-age landmarks
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Name	Valerie W, Self and child
Demographic	Family member of an autistic individual
Response	My child has had worsening depression. The attitude of faculty and staff at Education fatalities has become less tolerable more quick to snap back and place blame on my child for being in hospital and missing school. The overall attitude of all people involved with my childs health and well being have drastically gone down hill since the pandemic. The world is on fire, the functionality of our government is laughable at best and nobody seem to give a crap about another human because they are all miserable facing their own issues, climate change, us funding a genocide against our will. I get it. But its in our governments hands to fix it because we are all powerless but it seems more concerned with showing naked pics of our President's son on the congressional floor than doing anything for the American people and everybody everywhere is tired of it. Tired of not being able to afford basic needs, tired of our voices falling on deaf ears. Tired of fighting "mom's for liberty" and the like for our children to have some semblance of a future yet here we are and its only getting worse.
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Name	Vanessa Farrand
Demographic	Autistic individual; Family member of an autistic individual; Other
Response
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Name	Vanessa Smith
Demographic	Family member of an autistic individual
Response
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Name	Vee Crowe
Demographic	Autistic individual
Response
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Name	Vicki Markowskin, Mother
Demographic	Family member of an autistic individual
Response	I feel Covid-19 destroyed my children’s lives and mine . My son was a happy child , playing soccer , scoring well on speeches for 4–H , taking l swimming lessons , having a routine helped him . Then he was isolated .All the media , fear , his anxiety increased , his therapist could not see him for months so he lost treatment for his OCD which became debilitating. He is not the same child he was before . My daughter still wears a mask ,is afraid to eat out in public - she also had no access to therapy . When Covid struck she was attending an inclusive college program and learning independent skills .
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Name	Vicky Scollay , Parent
Demographic	Family member of an autistic individual
Response	My son stopped going to school and didn’t leave the house for nearly a year- catastrophic
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Name	Victoria Miller, TCCMO
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	The multi-year gap in interactive opportunities in community has been a setback, dependent on age at time of social disruption.
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Name	Vienna
Demographic	Family member of an autistic individual
Response	Learning in isolation was hard. Not having access to medical providers and therapies
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Name	Viki Quirk
Demographic	Family member of an autistic individual
Response	Increased anxiety in social situations
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Name	Viktoriia
Demographic	Autistic individual
Response	I am considered to be a healthy person, but I hit me a bit. I had a fatigue, which lasted for a few weeks if not months. It took time regain my sense of smell. I gain a lot of weight, mb because of covid, mb because I had to take antidepressants, because I got a depression appr. at the same time
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Name	Virginia Fox
Demographic	Autistic individual
Response	I worked daily for years to learn and practice my social and communication skills, and during Covid and the lockdown I had a major regression in skills and my ability to cope with and function in social situations. I had a hard time getting back to my level of socialization pre-pandemic and a lot of autistics shared the same struggle. I lost a lot of time. I was in high school at the time and spent the last 2 years trying to get back to where I was socially instead of continuing to maintain and improve my social skills throughout high school. I’m still coming back from what I lost.
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Name	Vista autism services
Demographic	Service provider, health provider, or educator
Response	Social interaction in younger students
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Name	Vittoria Cristoferi, Medico Neuropsichiatra infantile
Demographic	Service provider, health provider, or educator
Response
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Name	Walter Newsom, Newsom Psychological
Demographic	Autistic individual; Service provider, health provider, or educator
Response	It has vastly increased the severity and prevalence of agoraphobia. On the the hand, it helped Autistic people and their employers understand that Autistic people can be more productive working from home without all of the inappropriate social, emotional and sensory demands of the workplace. Autistic people who can't work from home are able to better understand the accommodations they need to be successful in the workplace.
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Name	Whitney Lee, Neurodiverse UT
Demographic	Autistic individual; Other
Response	I have a long covid and am now on supplemental oxygen 24/7. I have post exertial malise. I live a alone and I am only 30 years old. I got long covid in 2021. While I don't need daily assistance, I do need weekly assistance for cleaning and even some meal prep. I don't have access to transportation (short of friends). Public transit isn't reliable and to exhausting for people with PEM especially without a wheelchair.
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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	Many autistic people are talking now about how the period of lock-down and social distancing was helpful for them. Now that we are back to "normal," autists report feeling very discouraged and high levels of stress over the push to be in public, the lack of space, the social pushback over choosing to wear a mask, and the movement away from tele-health, tele-mental health, and remote work. Personally, I am burning out, and my clients say the same thing. The collective trauma of COVID has not been dealt with, so that is being compounded by a return to a very neurodivergent-aversive world and way of being.
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Name	Whitney Voltz
Demographic	Autistic individual; Service provider, health provider, or educator
Response
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Name	Wilhelmina murray
Demographic	Family member of an autistic individual
Response	My aggressive son, 25 yo, lives in a residence. Still no day hab Being in house all day leads to irritability, increased aggression, calls for increased psych meds
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Name	William Bryan
Demographic	Autistic individual; Family member of an autistic individual
Response	A dramatic and potentially lifelong one. I have become less certain of my own health after recovering from it a little over 1 year ago. I haven’t ever really felt like I’m physically back at 100% since getting it. If anything it’s more like 85% is my new 100%.
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Name	William Spell
Demographic	Autistic individual
Response	Having been locked up in the house for most of the week due to quarantine has denied me opportunity to develop my social skills.
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Name	William Stillman
Demographic	Autistic individual; Researcher; Other
Response	Isolation and social deprivation along with COVID compromising individuals' already fragile physiology has had a lasting impact.
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Name	Wyatt Miller
Demographic	Autistic individual; Family member of an autistic individual
Response	COVID was so long ago that it's hard to say, but I do distinctly remember feeling like a different person after recovery. There may be something to that.
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Name	Wylder, Autistic
Demographic	Autistic individual
Response
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Name	Yasmine
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Yesenia Aviles, Caregiver
Demographic	Family member of an autistic individual
Response
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Name	Zachary Kopel
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We are not sure that the direct effects of COVID-19 on the health conditions of the autistic have been substantively different from those of the general population, and so defer our answer to question 7.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	I doubt anyone can reliably answer that question. One might suppose that covid exacerbates depression, anxiety and other mental health concerns amongst people with ASD of all ages. This is an area that requires research investments.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	He struggles to attend school full time. His school stamina was negatively impacted by the long break. He is more likely to need a mental health day now than prior to covid. The 5 day school week is too overwhelming. The state has recently started to crack down on truancy and attendance. This is very unhelpful. My child frequently stays home from school because his nervous system is unable to function safely. I cannot send him to school if I think he'll become explosive at school. I cannot get a doctors note for each absence. Even with a 1:1 paraprofessional, it's still unsafe. (Also the pay for paras is so low, it's hard to hire quality staff when Target pays more.) We're currently unable to find quality therapy close to home. When we originally switched to remote therapy he refused to participate. He lost a couple years of quality therapy time. There's only a few therapist in CT who are educated in PDA. Remote therapy & Psychpact(?) have increased option, but most of them don't take insurance. Access to quality treatment should not be dependent on having excess funds.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I don't know what the overlap between long COVID conditions and autistic people is, but I would bet it's above that of the neurotypical population. We know COVID-19 drove "women" out of the workforce and had a dramatic negative effect on women's financial lives and economic outlook. That's probably exacerbated for autistic women, non-binary, and other identities correlated with negative SDOH, especially that of poverty and domestic violence. Then there's the increased anxiety - both from needing to go places that no longer require masking or other precautions and from having to be explicit and "difficult" about requiring COVID-safer options to participate. Stressors then exacerbate all medical conditions.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	COVID impacted those with serious mental illness greatly yet there was very little discussion about this. In our state those with certain developmental disabilities and their parents were given early access to vaccines. The individuals with serious mental illness and autism were excluded.
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Name	Anonymous
Demographic	Autistic individual
Response	In addition to the challenges of isolation as an autistic individual during the Covid-19 pandemic, my physical comorbidities further restrict my ability to leave the house. The ongoing health risks associated with the pandemic, coupled with my specific health conditions, make it necessary for me to prioritize my safety and minimize exposure to the virus. As a result, I have limited opportunities to engage in outdoor activities or access essential services outside of my home. This further exacerbates the feelings of isolation and impacts my overall well-being as an autistic individual.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	None Indicated
Response	• Disruptions in structure, routine, and social dynamics. Currently building new routines and getting back to former routines • Social isolation from the community • Worrying about exposures and infections thus err on the side of caution • Behavioral challenges such as mask-wearing • Access to essential services and therapies constrictions, potentially resulting in delayed diagnosis, interventions, as well as increased (and prolonged) symptom intensity
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	I will respond with a positive impact, from our perspective. Covid-19 protocols made it acceptable to have virtual doctors' appointments and for insurance companies to cover them. For my son, going to a doctor's office can be extremely stressful and bring on anxiety and challenging behaviors. The ability to have a virtual appointment from home (for issues not requiring a physical exam) has been hugely helpful for him, as well as his parents, since he often needs both of us to accompany him to an office visit.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Anxiety Fatigue Weak immune system
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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; 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	It has triggered more mental health conditions, like anxiety, depression, and obsessive compulsive disorder, that are not likely to go away after they have been triggered. All of these cause challenging behaviors, loss of functional skills, less employment, and more.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Disrupted identification and access to educational resources. Schools delayed appropriate placements during pandemic for higher functioning children in TK, K, 1st and 2nd grates which meant a delayed participation in learning and use of resources
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Many people with autism are also immune impaired and are at increasingly higher risk for covid and less likely to have access to safe caregiving or alternative settings where n-95 masking is tolerated.
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Name	Anonymous
Demographic	Researcher
Response
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Name	Anonymous
Demographic	Researcher
Response	adaptations to new social and life/work routines
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Online school did not meet our needs for communication education. Being away from school also increased our son’s anxiety.
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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	Family member of an autistic individual
Response	extreme anxiety to go out in public incapable of receiving vaccinations = loss of job, immunity
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Isolation wrecked her mental health. Coped fine at the time as no pressures to attend school/college, etc., But getting back to 'normal' life has just not happened
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In our household, the demands of zoom during the remote schooling period have made that medium frightening and have decreased my child's willingness/ ability to interact with others virtually.
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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
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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	It seems like long-COVID disease has many similarities to issues that autistic people already face as being likely to have connective tissue disorders. For example, one might experience disautonomia from either. For me personally, my obsessive compulsive disorder and health anxiety have become worse since there is a greater threat to my health from the virus. Prompt and competent attention to symptoms from both/either COVID-19 and/or autonomic disorders in the emergency care and primary care setting could be a game changer
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Isolation creating major social anxiety
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Substantial exacerbation of health conditions persists more than three years after initial infection. Irritable bowel syndrome, fatigue, anxiety, and cognitive function are all worse in my case. Invisible disabilities such as these are difficult to document, impeding requests for reasonable accommodations. Before getting sick, my partner and i drove about 30 minutes and 50 minutes, respectively, to work at the office most days during the week, and worked a full-time schedule. Since getting sick, we’ve struggled to maintain a full-time work schedule, even entirely working from home, to the extent of one of us taking unpaid leave.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Representative of advocacy organization
Response	Having long COVID has made my autism so much more disabling. Since March 2020 I’ve experienced a chronic post-viral illness, largely characterized by excessive fatigue and weakness. Before COVID I thought I needed just a bit more rest than the average person, but now that difference is dramatic. By depleting my energy, long COVID made my autism symptoms much more noticeable and disruptive in my life. I sought workplace accommodations for increased work from home and flexibility to use leave - and pursued an autism diagnosis for this reason. I didn’t realize how much energy I was putting into managing my autism until my energy levels so drastically fell. I’m aware of thinking that long COVID disproportionately affects autistics, perhaps due to an autoimmune effect - I believe there could be merit to that.
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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; Service provider, health provider, or educator
Response	Generalized anxiety increases and less general trust of people and the world around them
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Name	Anonymous
Demographic	Autistic individual
Response	After COVID happened they started allowing virtual visits to be covered which helped my anxiety a lot and substantially reduced the amount of time I had to travel. Making healthcare more attainable. I also now have a personal live-in aid whose made a huge impact.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Covid lockdown was good for my daughter as she felt safe and enjoyed homeschooling
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Diagnoses are delayed and treatment postponed due to lack of access and resources. Dental problems were not timely addressed due to lack of operating rooms for hospital dental visits. Job sampling in community was not possible.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	None
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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
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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
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Name	Anonymous
Demographic	Autistic individual
Response	Long COVID symptoms and COVID cases are just another weight to add to our load. Dealing with physical and mental health at the same time makes life even harder. Especially when access to care for many has all but disappeared, since the government just started pretending COVID went away.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
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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
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Name	Anonymous
Demographic	Autistic individual
Response	COVID was a disabling event. We were more affected than the average person between having lower immune systems and people not following masking rules. COVID increased mental health issues by furthering isolation and creating more barriers to treatment and services. I know personally, COVID left me with sleep apnea and a potentially lifelong reliance on CPAP and my anxiety around health has increased exponentially.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
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Name	Anonymous
Demographic	Family member of an autistic individual
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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; Service provider, health provider, or educator
Response	Increased anxiety and sleep disturbance
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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
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Delay in diagnosis for some children. Limited access to therapies during height of pandemic. This has an ongoing affect for children who were late in getting supports.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Covid has increased the mental health challenges of my 2 autistic sons. Although we have been fortunate to not have gotten Covid, the shut-downs and restrictions have negatively impacted quality of life of autistic people and their families. One autistic son was completely unable to access virtual school and therefore regressed, and the other autistic son was further isolated as the few out-of-home experiences were cut down even further. If we are to get Covid, isolation periods for either autistic people or their caregivers will have similar effects.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Social
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	isolation, inflammation, sensory overload, compounding somatic conditions, exacerbated burn out
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	He still has anxiety related to high alert we were all on for two years.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Covid-19 has had a lasting impact in the delays that my child, in particular, faced in school and in learning. This has contributed to increased depression, anxiety, and social isolation.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Persistent feeling of being left behind, severe depression, anxiety
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Increase in isolation, anxiety, and depression. The pandemic began a pattern of isolation and reduced social interaction with peers. Illness itself has increased fatigue and lower immunity (so more susceptible to illness). Possibly has led to higher incidents of burnout.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Made social skills Development more Of an issue
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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	Reinforced overisolation, more communication complications.
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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	Not much ..only reinforcing personal hygiene and social distancing in group activities.
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Name	Anonymous
Demographic	Autistic individual
Response	Not for me
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Huge setback in finding services Huge difficulties for families in taking on the load from lack of services for autism and mental health
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Lockdown alleviated anxiety for my autistic children as they didn't have to go out. Going back to school was difficult. One of my children has OCD so having a population being scared of germs is the reality for my child so it was like people were experiencing what it is like for her. My husband who is classed as vulnerable anyway due to health conditions worked in a covid ward and had inadequate PPE. The impact on his mental health was huge. He worked as a senior nurse but has left his role now. He has since been diagnosed with epilepsy. Obviously, this impacted on my family, especially knowing neighbours were having parties even when their 3 children's bubbles should have been isolating. The whole situation re rule breaking impacted heavily on my family.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Wait in services, diagnosis and support
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	My kids have anxiety and trauma from it. It’s hard to leave the house. We are high risk so we like virtual things a lot. My kids started homeschooling because of it and may always, since masking is not required any more and we are immunocompromised and high risk every time we go out we are in danger and no one cares
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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	Increase in experiences of chronic post infection illness such as ME/CFS, dysautonomia etc. exacerbation of mental health conditions due to uncertainty, isolation etc.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	No sure.
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Name	Anonymous
Demographic	Autistic individual
Response	I wish we could go back to the start of the pandemic *only because* there was higher tolerance for zoom or virtual appointments. The lasting effect for me is I realized how much more accessible appointments can be when I don’t have to go into an overstimulating doctors office for a regular visit. We need to get back to how things can be more accessible and that’s sometimes better than getting back to normal. Not sure if I answered your question exactly right, sorry.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Delay in diagnosis and treatment. A lack of access to behavioral and developmental pediatricians.
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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	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
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Just made everything worse
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Name	Anonymous
Demographic	Autistic individual
Response	I can only speak for myself. I greatly enjoyed two years of working from home, being with my family, and being alone. I never missed work colleagues or friends for a moment. I made use of virtual solutions. The only real challenge was making sure I got myself to the clinic to get the vaccine regularly.
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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; Family member of an autistic individual
Response	The world's demand to return to working in an office is the most ableist BS i've seen so far. They've proven that we don't need to work out of an office, that often we work better, have better outputs and healthier happier lives by working from home, and yet many businesses, including government businesses worldwide have ignored this and gone back to pre-COVID madness - why? because they like to torture people.
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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 personally have not gotten infected (yet) with covid-19. I know for a fact getting infected will cause life changing effects to my well being and quality of life. I live in anxiety every time I have to step out of my house, or when the people I live with go out into the world.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son 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
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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	Did not make any difference as I had very little social contact before COVID.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	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	It caused isolation where some now don’t want to go out because they were stuck home for so long. It cut off services. It cut off lifelines.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My child could not go back to school after the pandemic as already discussed. It was too big a change after being home after all that time. They were more depressed and more anxious and more fearful of change after being home for all that time.
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Name	Anonymous
Demographic	Family member of an autistic individual; Researcher
Response	Need more research to understand the longer term effects of the gap in social interactions because of long term school closures.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Longterm fatigue after having Covid has contributed to depression.
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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).
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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
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Name	Anonymous
Demographic	Autistic individual
Response	I don't know much about that but I do know that when I had covid my autism and co-occuring conditions made it a lot harder for me to get back to my regular behavior and start being active again
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	No illness, however a 3 year lockdown was catastrophic and excaberated their behaviors. Dismal failure.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Loss of the few existing services for autistic adults. No services at all for autistic adults. No coverage for services for autistic adults. And lack of masking in clinics - CLINICS - and other such services can be a deterrent for autistics to seek care and services they need. Especially for autistics who also have co-occurring immune system issues. Not to mention that the current research on longterm effects of COVID is that COVID causes a dysregulation of the immune system. Repeat infections are going to wipe people out. We should have masking continuity in ALL clinics no matter the season. We should be masking on public transportation and in crowds.
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	No more so than that experienced by the neurotypical community
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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
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Name	Anonymous
Demographic	Autistic individual
Response	The experience of Covid-19 was an emotional rollercoaster for me. I frequently cried while watching the news, witnessing the loss of lives and shattered hopes. However, there was a positive transformation. Prior to the pandemic, I was reserved, but afterward, it surprisingly facilitated a level of socialization I never thought was possible. I became relatable to others, and it's astonishing how my personality swiftly shifted from extreme social awkwardness to being a social butterfly. I haven't quite figured out how my personality changed on its own without any intentional effort on my part.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	During the period where I wasn't working outside my home, I lost a lot of my social masking skills, and they haven't come back. I stopped wearing clothing that was a sensory distraction, because I didn't feel like I had to look a certain way to get along with people. I stopped forcing myself to make eye contact. I didn't even realize that I was doing it. Autistic people are systems thinkers, and we are concerned at what many of us see as a breakdown of public health structure. We are concerned about long covid, which many of us suffer from. We see our fellow disabled people, who are stuck with limited options for social gathering or for daily requirements like shopping and going into a work location. We see our government backing away from educating the public and rallying us all to work together for the uplift of us all.
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Deep isolation and trauma from society not taking protective measures and precautions
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Virtual schooling delayed academics for students with autism, especially related to social skills due to the social isolation. Provide more social skills programs to counteract these effects.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	First off, COVID-19 damages the immune system among so many other things and it should be prevented for all people and the lack of prevention from the CDC and federal agencies is horrendous. We already know Autistic people are more likely to have bad outcomes than the majority of people. Refusing to prevent infection in the first place is causing significant harm and is increasing the likelihood of them developing co-occurring conditions that may not have been triggered yet. Many Autistic people struggle with sensory issues, so they might not be able to wear respirators and by public health not doing things to clean the air like respirators, upgrading indoor air systems, requiring all buildings to display their air quality so people can decide if the air is safe or not. We do it with water quality, food quality, etc. so we should include clean air. This leads to isolation for many Autistic people leading to worse mental health. Both Trump and Biden administrations have failed in their ability to implement public health measures that actually prevent this deadly and disabling disease.
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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	Cognitive fog. Fatigue. Lingering illness symptoms. Have high concern of impact for any auto-immune, hormone disrupted patients, / uniquely neurodeveloped individuals.
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Name	Anonymous
Demographic	Autistic individual
Response	Has caused sharp increase in anxiety and depression as autistic people were able to experience more accepting and sensory friendly environments when away from the public but then they had to return to trying so hard to be "normal"
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Name	Anonymous
Demographic	Autistic individual
Response	The lasting impacts of COVID-19 along with the associated isolation, although the lessened pressure to have to socialise in a typically social environment or setting, still made it so that, although autistic people may have experienced more of the ability to be themselves, the need for connection and interaction is still crucial and in such isolated instances can almost make it more difficult to ensure that those specific needs are consistently addressed, and in ways made navigating more overwhelming and in a lot of ways traumatic, because the ability to have structure and consistency in ways that are important to autistic people, social settings and support included, wasn’t available in the same way or at all due to COVID-19, but that it is necessary to have both, now the advancements in both technology and meeting autistic accomodations in addition to social, real-life interactions and connection.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have Long COVID which triggered POTS, chronic fatigue syndrome, and endometriosis. Learning that these conditions are common for autistic women was shocking. I’ve observed the patterns of my symptoms, researched possible conditions, and brought my findings to my physicians. They’re often unaware that these conditions co-occur in women, especially women with Long COVID and autism. They want to treat each condition as its own separate thing, but they overlap in symptoms and treatments.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Some things have become easier; for example, more teletherapy and telehealth options make it easier for neurodivergent patients who struggle with getting out of the house to keep appointments and receive services. However, since COVID, previously existing shortages have been exacerbated in so many ways. Our state (and many others) have massive shortages of mental health professional, neurodiversity aware clinicians and medical providers, preschool slots for kids with special needs, etc.
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Name	Anonymous
Demographic	Autistic individual
Response	While the isolation of quarantine in the early days of the pandemic was necessary, I felt like I could not communicate as effectively when it ended.
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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	There were no lasting effects in my son's case, thank goodness, but the virtual school in Spring and Fall 2020 were completely useless for him. He was unable to engage at all with his teachers via Zoom, even when I sat right next to him prompting him to attend and respond to his teacher. After weeks of this, I gave up. It was a lost year where he just sat at home, watching YouTube on his phone until in-person school restarted. It was a very impoverished experience for him.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It has made it even more difficult as far as the communication and social aspect. I was terrible before and now I'm terrible and out of practice.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator; Researcher
Response
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Name	Anonymous
Demographic	Other
Response	They haven’t been able to get access to information about the coronavirus that they can use.
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Name	Anonymous
Demographic	Autistic individual
Response	Well for me, I just simply kept getting chills time after time even after my Covid wore off.
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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
Response	Furthered the gap of social and intellectual developmental and access to educational services
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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	lack of resources accessible to all
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	A lot they were home bound
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More anxiety and isolation
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	This is where research needs to be done. We have an almost 13 year old daughter who is incredibly bright but also significantly delayed and we are just guessing how/if Covid-19 impacted her emotionally and medically.
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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	The impact of COVID-19 on individuals with autism spectrum disorder (ASD) is complex, involving heightened vulnerability to certain medical conditions, leading to severe outcomes if infected. Healthcare disparities and lack of insurance support compound challenges in accessing timely medical services. The pandemic introduces stressors like anxiety and depression, exacerbated by uncertainties and disruptions. Changes in routine and social isolation pose significant challenges, impacting mental well-being. Educational disruptions, including school closures and shifts in learning formats, create stress, while support services face disruptions. Personally, as someone with autoimmune issues, I feel unsafe in an unmasked and unvaccinated population, unable to risk adding COVID to my challenges. Addressing these issues requires strategies to reduce healthcare disparities, provide mental health support, and ensure educational continuity for individuals with ASD. Public health measures should prioritize vaccination for this vulnerable population, and awareness campaigns can foster understanding and support. A comprehensive, nuanced approach is crucial to meet the unique needs of individuals with ASD during these challenging times.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Autistic people often have physical health concerns and anxiety about their health, they may have isolated more than others during the pandemic, and may continue to isolate, having a difficult time adjusting post-pandemic. This may have affected their self-esteem and anxiety levels. Autistic people may use face masks to try and mask their emotions, facial expressions, etc. without knowing that they are doing this. They may feel safer with a face mask in in-person social situations, and it may help them in some ways, harm them in others.
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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 anxiety.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	A feeling of lack of safety, instability, predictability.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	parents as paid providers for underage kids has created a HUGE long term negative impact on the members, there is no more inclusion or autonomy, parents are greedy and just want a free paycheck, it should have never carried on this long, it is damaging the members
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	COVID -19 caused a huge disruption in services that we have yet to recover from. The pandemic caused regression and huge loss of skills in our son.
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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	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	lack of providers virtual supports rather then in person 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	After having covid 19 I developed an autoimmune disease.
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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	High support needs autistics thrive in routine and can become dysregulated when those routine structures are taken away. Regression also tends to occur along with it. Some autistic people thrive in quiet environments without the loud noises and other sensory overload that comes with school/work. Autism is a spectrum so needs will vary on a case by case scenario.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Scarcer services (negative), more remote services (positive)
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Name	Anonymous
Demographic	Family member of an autistic individual; Other
Response	Where is the study? Shouldn't you know? This is your reminder that THIS is the kind of research that those severely/profoundly affected by ASD need to be in. Long COVID, increased encephalitis, heart issues - where is the federal government on this?
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Due to many closures and changes, this made the autistic population a sudden change in their normal routines. This also makes it difficult for the care takers of these kids
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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 isolation has impacted social interactions
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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	My son became nonverbal because of COVID.His school was closed completely. We were lucky we were able to move and all Delaware schools were open. But all his friends never received school in VA during the entire time of COVID. I know FCPS was sued by DOJ. Compensatory services do not make up for lost education of a special education classroom and OT, PT, speech services.
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher
Response	I do not think adequate research has explored this.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The biggest impact of covid-19 was the social isolation and increase of electronics in schools which has reduced communication, social awareness, social skills, and overall emotional health.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	I find a lot less engaged parents since COVID. Parents are on their phones. Parents plug their kids in. Play!!! Engage!!! Have parent night craft or game activities posted every week on a website for family engagement. Set up an obstacle course in your living room with pillows and cushions and sheets. Crawl, roll, hug. Get sensory input and be rewarded with hugs and happy faces and praise not reward charts, and edibles.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	We lived in Washington state when Covid-19 lockdowns occurred. Washington was one of the last states to make schools go back in person. We ended up sending my son to a private school that was in person because he couldn't do online learning. He went to kindergarten and first grade to this school. Although I believe it was the right choice given our options, he did fall behind in reading because they were not equipped to support kids that needed unique learning support around reading. My son is now in 3rd grade (we moved to Massachusetts for better education and support) and he is still significantly delayed in this area,but making progress. I believe Covd-19 has had a profound impact on social interactions for autistics with co-occuring conditions, but also for neurotypical people, especially in children. I see gaps in age-appropriate behavior and how to connect with others.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Long Covid, isolation, increased GI and brain heart stroke seizures , learning decrease and adl and social skills decreased sleep disturbances anxiety depression abuse increases
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Name	Anonymous
Demographic	Autistic individual
Response	Increased anxiety and sensory processing issues
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I haven’t experienced lasting effects from the virus itself. The social impact of the pandemic has been much more significant.
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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	during covid, there was a drastic reduction in opportunuties to interact socially. In some ways that provides comfort for those on the spectrum, but overall having limited opportunities to interact increased the symptoms dramatically. There was no way to mitigate symptoms and the autism got a lot worse. Also for a person who has difficulty reading social norms, covid19 represented a complete upset of social norms. It was already hard enough to gauge social norms before covid, and during covid when all previous norms of social interaction are thrown out the window and there are sudden changes in new social norms about masking and coughing in public and distancing, this was very disruptive. Because it is autism, it has taken a very long time to readjust and regulate again, making co-occurring mental health conditions a lot worse.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator; Researcher; Representative of advocacy organization
Response	During the pandemic many young children, especially those from underserved families, were not enrolled in EI or dropped out of EI due to lack of access to virtual platforms. This snowballed into not having a handoff into preschool special educational supports. A whole cohort was isolated, did not receive appropriate early intervention and remains without services. We will be paying for this for years. The pandemic stressed everyone's mental health - parents, children, providers and recovery has been slow.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	skills regression, loss of services, reduced providers that will work in home with those in need.
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Name	Anonymous
Demographic	Other
Response	Some people are unable to be vaccinated and are living with immunodeficiency disease (are immunocompromised). So, the pandemic precautions of masking in public and essentially avoiding the public are still in place - - for 3+ years now. The social isolation is challenging.
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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	I got covid 2 years ago and I still have trouble with my lungs when the air is too cold. This causes me to cough a lot even when I'm not sick. It hurts my throat and is another sensory issue I have to add to the vast list of sensory problems I already had. Makes my depression worse because I'll never fully heal from it.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It's changed our lives, and since it's been since December of 2020 already I'm assuming it's permanent unless our healthcare system gets better. We are all exhausted by basic living. I can't get home health care for myself. My husband makes too much for us to get benefits, but not enough for us to have what we need so he has to work OT and still be giving 100% at home as well. It's affecting his health, so it's all of us. Our family dynamic isn't as healthy as it was because everyone is in pain all the time and grumpy. There's not as much enjoyment or adventure like there was. It feels a little hopeless, but we are still finding studies and therapies that are helping a little at a time. We are just mostly having to do it all on our own.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Infection: none that we can see.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	As mentioned previously, there are major supply chain issues eith medications like Adderall and referrals for BH/MH services are a year out in many paces which can lead to health disparities or death for some patients. Many ASD folks are burnt out and self harm has increased dramatically since COVID.
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Name	Anonymous
Demographic	Autistic individual
Response	It just makes everything harder, more uncomfortable. Someone who already had chronic pain may now have additional long term symptoms. And when doctors don't know which symptoms come from where, they often don't seem to know what to do about any of it. Autism can be isolating, and spending long amounts of time in isolation due to COVID just exacerbates the negative impacts on mental health, like loneliness, depression, and then anxiety about going out into public due to the risk of repeating a painful COVID infection.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	For me I developed more exhaustion/braking fog, since I have more inflammation in my brain and body to start with. Providing people with health information on nutrition would be helpful.
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Name	Anonymous
Demographic	Autistic individual
Response	It has really been hell for the contamination phobia OCD. Also, realizing that the majority of people don’t care about helping protect vulnerable people in their community (by masking, staying home when sick, etc.) has made me realize what a selfish, cruel society we live in and they probably won’t look out for neurodivergent folks either. I would say that has affected stress and depression.
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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	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	COVID caused more son to have extreme OCD symptoms so it is definitely something that needs more research.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have a cough that comes and goes. I had asthma as a child so that doesn't help either. My recovery time from sickness such as a cold has also increased.
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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	Introversion
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Connections with others, once lost, can be so hard to re-establish. Isolation is already a significant issue for many individuals with autism, and the pandemic only made this worse.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has never had COVID-19, but the isolation required to keep that true has sent him on a tailspin. He craves social interaction and the first 18 months of the pandemic were a disaster for him. He lost both jobs and sat at home, forgetting all of his manners and social skills. Still hasn't recovered.
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Name	Anonymous
Demographic	Autistic individual
Response	As far as I know, I was never diagnosed with COVID, but I could have caught it at some point and it went undetected. And it’s possible my new sleep disorder is connected, but I can’t say for sure.
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Many people with ASD have comorbidities that make them more prone to Covid. We know long covid is having major and lasting impacts on the people who are struggling with it. With sensory issues from ASD alone being sick at all is even more overwhelming as you are constantly taking in all data from things around you(sounds, smells, feelings like textures, and more) and it gets to be overwhelming. Being sick is like having all of that intensified and being in a jail of your own body where the discomfort cannot be escaped. I find ASD people tend to be more empathetic and are more likely to get the vaccine, wear a mask, and social distance or stay home when they can afford to miss work. Often though neurotypical society is not willing to avoid going to outings, or out to bars, or go to other social gatherings and dismiss the pandemic as something that only effects those who are already at risk as though the people at risk are less deserving of being able to leave their homes or to be safe. I find this to be very frustrating and selfish.
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Name	Anonymous
Demographic	Autistic individual
Response	I think it made some of us more stressed than we were before due to how much changed.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Delayed schooling. Did not pick things up at same speed as neurotypical children did
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Name	Anonymous
Demographic	Autistic individual
Response	Covid has had a lasting impact on everyone's health, including autistic individuals. More than welcome realize, frankly. Little research has been done on "long covid," and anecdotally many of my friends are still struggling with their health as a result. Covid also had (and continues to have) a significant impact on the mental health and socialization of every person on this planet. And those with comorbid conditions will always suffer the most.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Lack of access to services and placements Workforce crisis Trauma
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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
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The need for masks negatively impacted how well providers could support individuals with communication issues. Virtual schooling did not work for severely impacted autistic individuals even though it was sometimes beneficial for those with only social issues such as bullying and large class size.
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Name	Anonymous
Demographic	Autistic individual
Response	Worsening of physical and mental health, less access to needed care, less energy, etc.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Covid 19 and the lockdoen/isolation was a big tipping point that allowed many masked adult autistics to go into autistic burnout. The autistic burnout and mental health crisis of that caused many autistic adults to seek therapy and help of diagnosis to understand and support their autism.
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Name	Anonymous
Demographic	Autistic individual
Response	COVID 19 has caused a widespread belief that autistic people will not be protected and will instead be left to die with other disabled people because non autistic people are unwilling to help make things more accessible to autistic people. And they're also unwilling to advocate for autistic people, especially those with conditions that lower the effectiveness of their immune system.
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Name	Anonymous
Demographic	Autistic individual
Response	COVID has made my depression worse. It has made it more difficult for autistic people to have close friends and be social than it already is. For a lot of us it has also made our anxiety way worse. I know that that’s true for me.
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Name	Anonymous
Demographic	Autistic individual
Response	I have been made fun of/harassed in public for wearing a mask and taking basic precautions to avoid getting sick. I caught Covid from work before the vaccines were available, and it permanently scarred my lungs, worsening my asthma. It has increased my anxiety from going places in public.
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Name	Anonymous
Demographic	Autistic individual
Response	Long-COVID susceptible, along with amplified sensory issues regarding its symptoms. Agoraphobia for a culture that's increasingly less covid conscious. Increased difficulty gaining or retaining employment due to COVID and corresponding symptoms. Lack of equitable access to testing and prevention due to out of pocket costs.
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Name	Anonymous
Demographic	Autistic individual
Response	It has caused a major mental health crisis and also chronic health issues that left people in the community feeling helpless from not getting the help they need.
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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; Other
Response	It lead to isolation
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	COVID isolation made it more difficult for some to get back out with people again
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The impact that COVID19 had on my son was not being able to go out in public and trying to participate in social events have not been able to. so, he prefers to stay home, which before COVID 19 he was very outgoing. So, now I have to worry when out in the community for him to retrack all that was taught to him so we can get to that point again.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	Skill regression due to lack of programming
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	More isolation
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Death
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Long Covid effects such as brain fog and fatigue on top of issues from autism and adhd make it even harder to provide essential self care for individuals.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Has made it more difficult to get services
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Name	Anonymous
Demographic	Autistic individual
Response	Advanced underlying conditions, new medical conditions, strain and stress caused many suicides, starvation, food and money insecurity, illness insecurity from repeated dosings of diseases. Physically and mentally exhausted and sick
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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; Service provider, health provider, or educator
Response	While I did mask and continue to do so when COVID cases are high, it really irritates my dermatographia and eczema and causes me to break out in hives on my face regularly. It also caused me to overheat which caused MCAS flare-ups at times.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	COVID-19 further worsened my poor memory
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I got Covid in October 2020. Until about May of 2023 I couldn't taste anything. Now meat is almost impossible for me to eat. It either tastes spoiled or just wrong. Sensory issues are no joke and I feel like so many stigmas apply not only to sensory issues but mental health as well. I have an Associate's Degree in Social Work, I am a SUD Peer Mentor and I am a recovering addict as well with a clean date of May 2019. Losing my smell and taste has been the most challenging burden Ive faced in my life. I already had "repulsives" when it came to diet and I had worked through most issues with acceptable solutions. Now that I have regained some senses, none of them are correct. Everything is either dulled or so intense I throw up. I am a baker and I love to cook as well but my joy has died now. I have a cough that wont go away and I get so much sicker a lot more often now as well.
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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; Family member of an autistic individual
Response	The pandemic [profanity redacted] was the start of so many people waking up tot ehir own mental health and looking for help with diagnosis. The current wait for an evaluation is over 18 months. That is a nightmare when you need help today. especially for kids who need extra help at school or the kids who's families do not support them and they just get lost in the public school system. The red states need the most help with education, its embarrasing.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My eldest was terribly anxious during the pandemic--he wouldn't go out of the house unless absolutely necessary. When he returned to college and lived on campus, he couldn't handle that most people were not following the COVID protocols, which increased his anxiety and caused him to withdraw from school and come home. He was already over 6 years into trying to get his degree and this anxiety-provoking experience cost him his 4 year degree.
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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	COVID 19 seemed to have triggered dramatically my teen son's depression. He might have been predisposed. However COVID meant that he spent a long time at home, being educated online. He was away from his middle school classmates and friends. The depression was so bad that he was taken to the mental health ER for an evaluation. He still suffers with the depression and is on medication now.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	My son cannot wear a mask and is frightened of people when they have masks on he can't see your face he doesn't know who you are or if you are safe. Personally, i hate going out in public way more than i used to. There is an element of paranoia as people have abandoned wearing PPE when sick, jobs are penalizing employees for needing to take sick time, and people are refusing to stay home when they are sick and refusing to social distance. I hate when people get too close. I have a lot more anxiety about going out now and if i have to bring my son quadruple that anxiety because i now need to be prepared in case he disregulates while we are out. It isn't fun when he does.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	The Covid-19 pandemic led to increasing shortages in mental health providers, doctors, nurses, therapists, and teachers. This in turn has led to delayed support and services for conditions such as depression, anxiety, and led to increases in suicidal ideation. Research has shown that Long Covid led to increases in neurological conditions such as memory loss and "brain fog." ASD individuals with co-occurring conditions such as ADHD, bi polar disorder, Obsessive Compulsive Disorder, etc. who have had Covid are at increased risk of these conditions worsening.
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I figured out I was autistic the summer before the spring 2020 lockdown. Being in isolation pretty much confirmed my suspicions. Working and autistic masking was causing physical harm to me. I got diagnosed asd/adhd 2022 and stopped working. I had been going to work sick most of the time.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Son graduated with a high school diploma and lacked the opportunity for job training and placement. Due to attentional issues virtual learning was not a good fit for him. DORS has not been a good resource to him since they seemed overwhelmed by the number of their clientele seeking services.
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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	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
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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 lack of services, isolation, loneliness, and then the illness Ireland disrupted our daughter’s way of life that sent her down a violent spiral. It also fractured an already fragile system of caregiving support. She ended up becoming violent in the community, our home, and was ultimately placed in adult foster care - this took 15 months while we as a family remained in crisis and experienced PTSD.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	The same as it's had on non-autistic (allistics) people - respiratory issues, cardiac issues, brain fog. That's not to consider the effect forcing return to office has had on many autistic people who were suddenly able to work fulfilling roles in corporate due to flexible remote policies, and are now struggling as companies rescind those policies.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	New illnesses prompted by compromised immune system have been difficult to manage, and they disrupt my self-care processes which have already been difficult to manage.
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Name	Anonymous
Demographic	Autistic individual
Response	Too many demands from Covid! As a person on the autism spectrum with a PDA profile the pandemic has been terrible. I have socially isolated for almost four years now. And I am constantly terrified. So many friends have had strokes, dementia, divorce, and exacerbation of their mental health issues, and long covid. etc. Several people I now 'died'!
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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; Other
Response	Many people realizing that they were autistic over lockdown because there was less social pressure to act "normal" and it allowed people to discover who they are, and realize that they might be autistic. lockdown also created isolation and removed structure from many peoples lives so they began struggling more in social settings and became for fatigued when returning to society
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	In addition to higher COVID morbidity and mortality in individuals with autism than in the general population, regression in learning due to online format has been significant.
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Name	Anonymous
Demographic	Autistic individual
Response	Chronic fatigue from COVID-19 can exacerbate negative aspects of autism and make common coping and executive function management skills more difficult to access.
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Name	Anonymous
Demographic	Autistic individual
Response	COVID-19 had caused a great change in presentation of symptoms of autism in me. During the time quarantine, without initially realizing it, I was given the opportunity to unmask in a way I had never been able to before. I began masking autistic symptoms as early as kindergarten in an effort to shield myself from bullying from peers and disapproval from various adult figures, but during quarantine, as I was a freshman in high school when it began, allowed me an extended break from regular interaction with peers that I had never before experienced. The only people I was interacting with daily was my parents and grandmother who lived with me during the time. This provided a great deal of improvement to my mental health as I was no longer expected to hide many of my symptoms, however when quarantine ended, I was thrown back into public education and as I had become accustomed to not masking my symptoms, I was regularly harassed and discriminated against by peers and staff for my symptoms, as I found it difficult to attempt to quickly hide them again. It is also worth noting that my depression did increase during the quarantine as many experienced with a lack of ability to leave the home and interact with friends and loved ones, and my physical health overall was negatively impacted as I began to exercise less.
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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	Negative
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Overall fragility to health. Non-verbal autistic individuals cannot embrace the full effect of a person's suffering, which is mentally exhausting to the caretakers.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	They've gotten worse, and I can't mask anymore. When we went on lockdown, I had a nervous breakdown. I suffered, and mental health service I sought, made it worse. I didn't know if I would make it through alive. Socializing for ASD people is so difficult, then add onto it what our government did to us by forcing the lockdowns, and the vax mandates. The mask mandates as someone with sensory issues, no one knows or cares what that did to us. I'm even more mistrustful of our government and those in power. I'm even mistrustful of filling this questionnaire out. Then when we were told "everything's fine now, go back to work" & I could no longer mask or know how to interact with a covid/post-covid world, with 0 support. Let's just say, I'm still dealing with a lot of trauma from what the covid policies have done to me. I had covid twice, covid was just another sickness to me, and no issues from the virus. It was the social controls and hate from people that effected me the most.
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Name	Anonymous
Demographic	Autistic individual; 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	Autistic individual
Response	I don't think COVID was helpful for anyone, but I wouldn't say personally it made any of my co-occurring physical conditions any worse. It certainly didn't help mental health, mainly due to seeing the lack of compassion broadly and the many avoidable deaths that happened because of that.
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Name	Anonymous
Demographic	Autistic individual
Response	I believe Covid-19 social isolation and distancing was mostly looked on favorably by the autistic community. This is how we prefer to live. It is uncomfortable for strangers to enter my personal space. I want to be home and work from home. I prefer grocery delivery to the sensory onslaught that is grocery shopping. I believe Covid-19 affected autistic people much less than others in daily life. Cleanliness and OCD is common in autism, so we like the extra precautions taken. Masks are irritating sensory wise, but it does help my social anxiety to hide my face.
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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	COVID made it very clear that there were no real accommodations for my kid. It was difficult to get vaccines because I couldn't get her to wear a mask when places would only help her if she could keep one on. I had no access to sedation for her to get shots. I ended up having to get helpers from the fire department and EMT folks to bring her the vaccine after pulling a lot of strings. The situation has been dire for her. I've had to fight for any kind of medical help. Her anxiety has been through the roof due to the world acting differently.
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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; Representative of advocacy organization
Response	Long Covid is certainly an issue for autistic individuals. Not being able to find direct service providers is a larger issue! Brain fog, fatigue, disruption of services across the board, lack of providers and staffing
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Name	Anonymous
Demographic	Autistic individual
Response	For me personally, having had COVID-19 twice, definitely strange physical issues - hands/wrists/feet, exhaustion and/or fatigue, head and back aches. Metal health-wise...100% good with quarantine and isolation periods. Actually improved the level of social anxiety and participation. Embraced remote work and avoidance of others.
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Name	Anonymous
Demographic	Autistic individual
Response	-disproportionate negative health outcomes
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Covid further removed those who are unable to communicate and advocate for themselves from the public eye, it removed life sustaining services for the highest needs population and their families, further isolating them and increasing caregiver burnout.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	There are Autistic people, especially those living in group homes/medicaid funded housing, who have not and are not receiving proper treatment for COVID or long-COVID (I personally know someone with long COVID who has been suffering for months due to there not being suitable resources for him). Medical and mental health providers as a whole are wildly unprepared to work with Autistic people (though that seems to be improving) and I believe misinformation regarding healthcare (medical, mental, and behavioral) is one of the biggest contributing factors.
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Name	Anonymous
Demographic	Autistic individual
Response	A lot of organizations are streaming/meeting online now. I had stopped attending church because of the social anxiety. Now I can watch from home
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Long covid
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Name	Anonymous
Demographic	Autistic individual
Response	i can't go to the doctor because hospitals aren't masking anymore and i can't go anywhere in general because nobody is masking anymore i don't like being kept inside it makes me have meltdowns i'm really miserable my condition is progressing to the point that last year i went to the er for heart attack symptoms and my cheek has gotten hollower i haven't had an ecg or echo since early last year i am coughing up bloody mucus and i can't even be with my friends
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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	My child regressed socially, educationally and still has not regained skills lost.
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Name	Anonymous
Demographic	Autistic individual
Response	I am unvaxinated and have no intention of doing so. I had covid in December of 2020 and i still don't have full taste back yet. My smell seemed to have returned fully a few months ago. I experience colds and flus strongly in a physical sense. Covid made every part of my body sting and ache. Sound and light sensitivity were really bad. It essentially made my normal sensitivities extreme.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	a lot of us are dealing with co-occurring conditions that already cause chronic pain, fatigue, and illness at baseline. Dealing with infectious disease, especially to the degree that Covid has caused, makes life pretty bleak from a physical standpoint, but also an economic standpoint.
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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	On the one hand, WFH and my anxiety about being in public etc have been eased with COVID. I joked that the pandemic was exactly what I needed as a wannabe hermit. It was fine for three years. Then I settled into it and I REALLY stopped leaving my house ever. I stopped interacting. On the one hand, I still enjoy that - but I have a hard time regulating myself and knowing my limits, and subsequently find myself a victim of burnout because I cannot tell myself when to stop. When I burn out, it isn’t just being tired. It is complete and utter despair, a sense that nothing is ever going to change, and if this is all there is, why bother? To be clear, I don’t have suicidal ideations. I literally just don’t understand the WHY. If I’m working for money and health insurance, the money is for a house that I have or a car I never use, and the health insurance doesn’t actually SOLVE my myriad health issues…why do it? It’s been hard to get out of this mentality, especially with the inability to create an artificial work life balance. And going back to an in person job full time would be prohibitive and trigger meltdowns - what options are left? What do we do?
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Name	Anonymous
Demographic	Autistic individual
Response	Not having access to services during the pandemic caused a lot of regression for autistic people who had to miss therapies for so long.
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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	Long covid may impact or increase already occurring conditions such as POTS and MCAS which are common among the autistic community.
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Name	Anonymous
Demographic	Autistic individual
Response	-Common viruses cause more severe symptoms -Chronic stress
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Less access to resources as there wasn't availability during Covid and now there is a backlog.
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Name	Anonymous
Demographic	Autistic individual
Response	Aside from paranoia about catching it, I myself have never had any long lasting symptoms after I got covid. I have heard of people doing their sense of taste and smell though, which would have been devastating because most of my sensory coping skills rely on smell and taste (gum chewing, candles, ect) and would have changed my ice significantly.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Both my loved one and myself still suffer high anxiety. While I am not Autistic I now suffer from frequent bouts of over stimulation in public. I cannot begin to imagine how they feel with their preexisting issues.
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Name	Anonymous
Demographic	Autistic individual
Response	It had no personal affect on me as I don’t socialize with people and keep to myself.
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Name	Anonymous
Demographic	Autistic individual
Response	COVID-19 has had a devastating impact on people with disabilities, and has itself disabled many. People with disabilities are vulnerable to COVID and special consideration for the disabled is necessary.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Covid-19 has made anxiety and depression worse.
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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
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	1. Learned social skills suffered because of social isolation. This makes allowing autistic people to work from home even more important, and increases a need to consider whether this isolation may be even more disabling for many, in cases of work. 2. Long Covid seems to disproportionately affect autistic people, and this should be looked into.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator; Researcher
Response	Many with autism already deal with chronic illness. Long and short COVID increased those numbers.
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Name	Anonymous
Demographic	Autistic individual
Response	The pandemic made life slow down, and when things started again I couldnt keep up. I still cannot keep up a high demand life.
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Name	Anonymous
Demographic	Autistic individual
Response	Made my mental and physical illnesses way worse. I was unable to leave bed for several months because my POTS got so bad I would collapse just getting out of bed, and as a result my depression and OCD went into remission flor what felt like the first time since I started therapy.
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Name	Anonymous
Demographic	Autistic individual
Response	Anxiety
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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	during COVID and for a long time after recovering, my quality of sleep was much worse which significantly impacted how productive I was able to be at work, and made my mood more volatile + irritable. my GI symptoms worsened and it was common for me to be in the restroom once every hour or two. neither of these issues have fully resolved, and they currently affect my ability to work, participate in my hobbies, and maintain family/personal relationships.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	n
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Service provider, health provider, or educator
Response	Staying at home has caused regression for individuals with social anxiety from being at home for years at a time. Educational regression from being required to access education at home. Inaccessibility for people with Autism to access online education during the pandemic without assistance from a caregiver. Sensory processing needs for student to be unable to wear a mask, therefor increasing possibility of infection from Covid-19 when out in the public. May be confined to home.
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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	Autistic individual
Response	So many of us already struggled with social interactions and loneliness, and now we're further isolated because the government failed our country so badly on covid management and wants to pretend it doesn't exist anymore so nobody wears masks, nobody tests, etc.... I shouldn't have to risk my life in order to have a social life when it's already so much harder for me than for other people.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I have personally not experienced any lasting consequences due to covet, but I've heard a lot of other autistic people have experienced dramatic setbacks socially and emotionally because of their experience with covid
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Name	Anonymous
Demographic	Autistic individual
Response	COVID-19 exacerbated co-ocurring physical and mental health conditions.
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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	"Long COVID", a common form of long term post-viral illness, is just the tip of the iceberg of this mass disabling event. I was diagnosed with ME/CFS, and its onset was years before the pandemic even started. Millions of people, and I assume a plurality, if not a majority with neurodivergence, are affected and have virtually no infrastructure of treatment options in place to support. ME/CFS for the sake of this example, had its quality of life indexed against dozens of health conditions, and its outcomes were marked as worse than every other condition that was listed, including cancers, diabetes, brain stroke, and schizophrenia. It affects everything from energy levels and memory to autonomic functions, seizures in some, and many other symptoms. This is just one label/subsection of this phenomenon, and virtually identical to what "Long COVID" describes.
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Name	Anonymous
Demographic	Autistic individual
Response	Increased barriers to ASD testing, Dx, therapy, physical care, and coordination of mental/physical care/services. Remote testing for ASD unavailable, remote testing for adults IMPOSSIBLE. Constantly needing to teach providers about autoimmune Hashimoto, Ehler-Danlos, IBS, ADHD, SPD, anxiety, depression, insomnia overlap—and now officially menopausal at 55. However, the isolation of the pandemic provided a chance for my nervous system to rest.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Possibly making migraines and nerve issues worse. Not sure. Definitely worried for all disabled people in this day and age, as insurance providers and medical institutions are extremely biased against disabled people in general, and especially if they think you’re [redacted].
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Name	Anonymous
Demographic	Autistic individual
Response	Long COVID comes in many forms that can add another layer of complications on top of already snarled medical conditions, and can involve intense sustained traumas that are nonthenless going publicly unaddressed culturally and as a whole
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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	I haven’t had COVID-19 myself yet. My Autistic teen had COVID-19 in December 2022, but she and I are unaware of any lasting impacts she’s had from it.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	The lasting impact of COVID-19 on co-occurring physical and mental health conditions in autistic individuals is complex. Pandemic-related disruptions, such as changes in routine and limited access to services, may have exacerbated challenges. Increased stress and anxiety due to uncertainties could have impacted mental health. For those with sensory sensitivities, mask-wearing and hygiene measures might have posed additional challenges. Interrupted therapies and healthcare access could have affected management of co-occurring physical conditions. Research is ongoing, but understanding and addressing these pandemic-related impacts on the well-being of autistic individuals with co-occurring conditions is crucial for targeted support and intervention.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Not knowing that my child was behind because we were practicing safe social distancing, my child could’ve gotten help sooner, but I didn’t know. It’s isolating and it’s defeating
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	More social isolation probably.
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Name	Anonymous
Demographic	Autistic individual
Response	developmental delays in adulthood, frequent stress induced sickness.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	Brain fog. Neurological side effects and long term difficulties with rumination about getting sick.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	Well the initial isolation was wonderful for me. I was finally able to be authentic. But I don't know if I will ever bel able to get that drive back.
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Name	Anonymous
Demographic	Family member of an autistic individual; Service provider, health provider, or educator
Response	It has certainly led to regression and lack of services, huge gaps in services, and delays in services. Without the right and adequate support autistic individuals lost value able time and undoubtedly there was a huge impact for many.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	As a services coordinator for autistic children and teens, I have seen a lot of clinics that treat co-occuring physical and/or mental health conditions close down, often due to a lack of funding. Thus, waiting lists for other clinics have drastically increased.
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Name	Anonymous
Demographic	Autistic individual
Response	Co-occuring EDS body pain worsening
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Name	Anonymous
Demographic	Autistic individual
Response	The level of social anxiety since Covid personally has gone up due to the lack of interactions. I am also now feeling anxious about people that I know interacting with me.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Covid has been good and bad for people with autism. It's awful for our immune systems which are not up to par. But for most of us the isolation was a relief from the constant bombarded crowded rooms and crowded buildings. We control sound and emotional stimulus at home much better than in an office setting.
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Name	Anonymous
Demographic	Autistic individual
Response	Covid-19 both helped and harmed autistic people. It helped because those of us who suffer anxiety from social interaction didn't have to interact with people and wearing masks and the emphasis on health has helped those who suffer from a weakened immune system. However it also hurt because it made depression worse for many people and because getting Covid had long-term impacts on our health.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I have not been physically healthy for longer than a week since the COVID-19 pandemic began due to having multiple co-occuring physical and mental illnesses with autism. I've attempted to go to the doctor multiple times and each time have been sent home being told I'm 100% healthy. Then to go home and take a COVID test and test positive. Simply because these medical professionals don't listen to the symptoms I'm experiencing because I speak different than them.
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Name	Anonymous
Demographic	Autistic individual
Response	It was devastating for my mental health. I was hospitalized for 4 months and lost my supports I had in place like my day program and my staff.
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Name	Anonymous
Demographic	Autistic individual
Response	*chronic fatigue *disautonomia
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	COVID-19 drastically set us back in a variety of ways. All of the ways we could force social interaction and schooling became almost impossible once everything became accessible online. He isolated himself and even now, 3 years later, is not back to where he was before the pandemic.
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Name	Anonymous
Demographic	Autistic individual
Response	Covid disproportionately affects disabled people as they often have auto immune disorders. We need to call for masking again. To do otherwise is an attack on the disabled.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Other
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	It was just another thing that triggered my autoimmune disease. I had to quit my job after getting COVID-19 because I just couldn't perform at the level I used to. I was a teaching artist for a year designing and installing murals for schools across Chicago. It was meaningful work to me. My body was my tool. It broke glass and painted walls with sparkling tile. My creativity and direction flowed like fire. No one knows that my blood is everywhere. The underpass in Englewood. The Metra stop in Belmont Cragin. The cultural center in Austin. It was less than 2 years ago but when I think about everything my hands used to be able to do, I feel so inadequate. I was made to be small and miserable. I wasn't born like that. I've been depressed for a decade and supposedly my life is just starting and "it only gets worse from here." I might not be able to open juice bottles without help but my hands and eyes are still everything to me. So what if we need a little help? That doesn't mean we're nothing. It takes about 3 minutes within meeting someone for them to know something is wrong with me. I'm too tired to hide it anymore even if that's what helps me fit in the most. I can't pretend to be like everyone else. They don't know how drained we are.
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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
Response	Covid was very isolating, and a disruption to everyday life. I think the social changes for autistic individuals should be looked into.
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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	End medical apartheid!
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Personally covid led to many improvements. Previously overwhelming tasks like grocery shopping are now easily done online. Exhausting days in the office remembering to look up and smile are now working from home days. Video calls are awesome cuz I can see my face and modulate my expression in real time. And the emergence of tele-health has helped me diagnose a thyroid issue impacting my physical and mental health. Life is better than ever.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	It makes heath issues worse. We have known this for a long time and disabled individuals warned of the increase in disabled individuals that would occur from a virus that damages the nervous system and our government support systems are not equipped to handle it. Add on to it the fact that many autistic individuals find wearing masks to be difficult or even painful, it puts us at a greater risk of catching this virus and thus more at risk of developing COVID-related health issues. Treating this pandemic as if it is over and done with was the worst decision we could have made in these circumstances and it has made it very clear to us that the health and well-being of the citizens is not more important than the money we could possibly bring in as a workforce. Good luck paying for the social security of all the newly disabled folks that could have been prevented. Congrats. You got what you wanted.
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Name	Anonymous
Demographic	Autistic individual; Researcher
Response	There are many lasting impacts, as I fear infection constantly. I have had COVID confirmed one time, and I was healed, however it can be difficult for me to know if I have suffered long term symptoms. Mental health has greatly decreased, as I am trying to re-enter the workforce and in-person spaces.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I am constantly sick. I am healthy for 2-3 days and then am sick again. Chronic fatigue creates barriers to access my social support/ activities.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Like most things, autistic people are experiencing the same difficulties as non-autistic people, but with more intensity and more frequency.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	My chronic health issues worsened significantly from Covid-19. My children both had Covid as well: One developed significant schizoid traits in that timeframe after their first time having Covid; The other developed Tourettes after having Covid. From what I have seen in the wider community, many of us have had worsening mental health outcomes due to significant disruptions in our lives as well as the virus itself causing a significant worsening of neurological symptoms, autonomic dysfunctions, GI issues, and autoimmune disorders.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Agoraphobia
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Isolation during the pandemic was unbearably destructive. Public health responses should understand isolation is just as deadly as a virus, and be mindful of that in future interventions. (I am both autistic and a public health practitioner)
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Yes. Like mentioned before autistic people are more likely to get LC and ME/CFS and dysautonomia. COVID has killed 6million people this year but it has taken the livelihoods of so many more. There are no treatments for LC and ME/CFS. People are dying because of it. Because physicians are not educated in and some don’t even believe in these conditions patients are told they are just anxious or lazy. They go undiagnosed and miss access to treatment. It is imperative to do research on these conditions as it directly impacts many autistics.
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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
Response	I did not have COVID. My partner had COVID twice and suspects he is autistic based on his dx comorbidities and his traits. He experiences lethargy, lower sex drive, and his heart races all the time. It's higher than a normal resting point consistently.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	It compounds all autistic criteria and experiences. It makes everything so very much harder. Long Covid symptoms also seem to be aligned with autistic experiences, which is an interesting pattern. We're going to need support for adults who feel they have 'become autistic' after having Covid / Long Covid.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	COVID-19 further isolated autistic people who were already somewhat isolated. Some people have had serious physical side effects from it, and going to the doctor is a riskier thing than it was before, especially now that even doctors aren't masking all the time anymore.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I struggled with getting back into the real world and depression hit hard. I could not go shopping by myself for the longest.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Anxiety is worse. Long Covid has increased sensory issues and made eating and existing more difficult
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Name	Anonymous
Demographic	Autistic individual; Other
Response	Healthcare providers often fail to identify COVID related conditions or side effects because they assume everything is just related to the autism itself. People with autism are not receiving appropriate healthcare due to health providers lack of knowledge about autism and their inability to make a differential diagnosis in autistic people.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	mental trauma. the world is [profanity redacted] and people are selfish. we are worried bout women covering their nipples under their shirts but people couldn’t cover their mouths to save lives. I never want to work in an office again. Corporate greed abuses us every [profanity redacted] day. and collectively our politicians stood up and said you know what, let’s be divisive instead of doing our [profanity redacted] jobs. instead of taking a firm stand on covid they went after women’s autonomy. EAT THE RICH, [profanity redacted] THE GOVERNMENT! pattern recognition has every autistic I know learning permaculture, preserving, bush-craft, foraging, self-defense and seeking to build isolated communities . yall deserve what is to come.
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Name	Anonymous
Demographic	Autistic individual; Service provider, health provider, or educator
Response	My mental health and willingness to be social has declined drastically.
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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	Well considering that Covid is a vascular disease and that studies have shown it causes significant grey matter loss in 100% of the people that contract it, I would guess it’s not going too well for anyone. Honestly the autistic people I know were relived when everyone went into isolation. We all are first to be boosted and all wear masks still. I would guess it’s harder on children that need school support services, and their parents. I would also guess that autism is a bigger spectrum than suspected, meaning that so many people maybe only have sensory issues, and no social problems. But they wouldn’t be diagnosed with autism. Yet people with only severe sensory issues really struggle, especially children, and there is no help or insurance coverage available.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	My son has remained COVID free so I cannot answer this.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	Some thrived in the isolation of the pandemic due to not having to attend appointments, meetings, etc in person and eliminating the sensory overwhelm of being in waiting rooms and medical facilities. Others were negatively impacted by the limitations of accessing online care and in-person care. Telehealth should be an option for everyone, and the interaction with medical services should be accessible in a way that suits the patient.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	I feel confused because I spent years concerned about the spread of covid-19, and now every business and the government act as though it's not worthy of concern, and thus others around me handwave it more. I have become hyper aware and fearful of getting sick in case I spread it to people, but no one else cares.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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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 can’t “mask” my autism anymore— social rules changed and then changed again and now I am exhausted. I must be solely vigilant against infection because no one else is taking precautions and I am vulnerable. That I cannot always clearly function or think compounds the stress of hypervigilance out of necessity. I will likely never recover; the community recommends total rest as the “treatment” for autistic burnout, but that is out of reach for many; we must work to survive, or die. There is now an additional, onerous obstacle. Tests are expensive & out of reach, proper respirators are expensive; even getting vaccinated was not straightforward and I had to pay out-of-pocket; $190 I did not have to spare. I am exhausted and I cannot fight the insurance denials; the paperwork, the mental energy, the time, the effort… it’s inhumane
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Service provider, health provider, or educator
Response	I haven’t known any feeling of peace, safety, or inner joy since the pandemic started and I spend most of my time outwardly and openly suffering from the ptsd and burnout that it caused. I haven’t had a full time job or healthcare since last year. I had to move in with my abusive parents. I lost everything. My life is no longer liveable. I’m just here bc someone has to take care of my dog.
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Name	Anonymous
Demographic	Autistic individual
Response	I haven't had any direct experience with COVID-19.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	Made them worse. Killed a bunch of us. Long covid is probably worse for us somehow.
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Name	Anonymous
Demographic	Autistic individual
Response
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Worsening depression in autistic people during the lockdowns due to isolation. Increased anxiety especially for autistic students
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Name	Anonymous
Demographic	Autistic individual
Response	Many people post COVID infection have reported long covid symptoms such as changes in taste and smells. Changes in taste and smells often leads to changes in food intake as many people with autism deal with disordered eating as a result of ARFID. Even after the initial infection many people report feeling physically weak and much more easily exhausted.
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Name	Anonymous
Demographic	Autistic individual; Researcher; Other
Response	My bones hurt all the time now.
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Name	Anonymous
Demographic	Family member of an autistic individual
Response	Covid excasterbated mental health conditions such as depression and anxiety. Covid had a positive impact on expanding telehealth and teletherapy. Some autistic students also reported lower level of bullying during remote learning
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	During 2020 I lost my ability to mask after being away from people for so long. That significantly increased my anxiety levels until earlier this year. My physical health has also declined significantly since catching covid in October of 2020 pre-vaccine. My sleep and hEDS joint issues particularly have become much worse. I have also developed POTS since having covid.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response
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Name	Anonymous
Demographic	Autistic individual
Response	I lost the little social skills I had before covid. I am severely isolated and lack any social interactions other than medical appointments (which are traumatizing). Nobody is covid safe anymore so I can't even try to do anything fun or make friends. Covid will likely kill me if I get it. Nobody cares and I'm told I'm paranoid and dramatic. I am traumatized by almost every social interaction I have.
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Name	Anonymous
Demographic	Autistic individual
Response	Not aware of any personally though I'm sure there have been and will continue to be.
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual
Response	the glimpse into a world where we were provided with UBI without being required to work in overstimulating environments was really lovely as a neurodivergent person. But being forced back into public, removing all logical protections and seeing how individualistic people behaved absolutely made anxiety, OCD and depression worse especially amongst the neurodivergent population.
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Name	Anonymous
Demographic	Autistic individual
Response	it's turned me into a recluse.
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Name	Anonymous
Demographic	Autistic individual
Response	Thankfully, I have not contracted COVID. Being a hermit and working remotely counts for something!
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Name	Anonymous
Demographic	Autistic individual; Family member of an autistic individual; Researcher
Response	PTSD, lack of timely healthcare appointments, housing insecurity, impediments from finishing school online and missing out on SLP / special education courses
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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
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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	After I got covid, my brain fog and confusion got worse.
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