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COVID-19 Pandemic Responses

What are important issues for the IACC to consider with regard to the impact of the COVID-19 pandemic on the autism community?

Topics from Responses to Supplemental Question 1

Accommodations: Accommodations for COVID-19 restrictions are needed for autistic people.

Respondent Response
Chris Colter Facemasks are a no brainer when it comes to Covid. Most of these kids cannot tolerate facemasks and have nervous breakdowns because of the stress. Most importantly, the IACC needs to have a direct impact on families. Something that families can hang their hat on at the end of the day. Families need to know ""what did the IACC do for me?"" or ""How did the IACC help me on this journey?"" You need to have a solid impact and sooner versus later. The IACC needs to show up at these autism conferences that families attend to get a taste of the real world battles we are fighting.
Anonymous The COVID 19 restrictions are too great and present too much hardship for people with autism, staff and families
Anonymous The focus on protection has overwhelmed people's individual rights, especially for those receiving long-term supports. This is making reintegration into the community (including employment) more difficult.
Christina Newendorp Getting vaccines for those with severe autism was difficult-hard to find a drive through Johnson and Johnson location because health care providers didn't understand the need for this. Covid has negatively impacted the economy, making it harder to find direct care providers. The wages being offered by agencies are not keeping pace with basic wages offered by retail and food service.
Jessica Van Schaick Recommendations for policies to exempt those with autism or sensory disorders from mask wearing if their disability is documented by a board certified medical professional and/or they can provide proof of negative covid results (for certain events, modes of transportation, etc).
Alexandra Hernandez ASD kids struggle with wearing a mask.
Maryse Hile, Parent of adult child with ASD who receives services For clarity and precedent, it's vital that the national expectation for service providers is that everyone be vaccinated - staff and clients - in order to attend dayhab programs. DSPs and therapists should be vaccinated. Housing support should be vaccinated, and residents should also be so unless there is a clear and pressing medical reason they should not be. Masking and distancing should be left to state and regional agencies to determine, given the varying case levels throughout the country. If sensory issues are an issue for certain clients in masking, then sensory integration therapy should be given immediately to help them adapt, and continued until they are fully able to do so. Should there be another pandemic, the resources expended in this effort will be returned with interest!
Carol Tatom, Autism Response Team Covid has been a huge issue for autism communities. Wearing a mask is nearly impossible for children that have sensory disorders. Hand washing is hard for children that are still learning to master self-care. Having to work from home can be difficult for families who have children with autism at home as well that cannot be left alone. Mental health has impacted every community during the pandemic, but I feel that the autism community has been impacted the most due to the additional challenges that come with autism. I would like the IACC to consider how mental health and family dynamics have been impacted by Covid-19 and would like to see additional services offered by the community.
Pamela Foster Many individuals on the spectrum have severe sensory problems which makes mask wearing difficult - somehow there needs to be education around this and some type of allowance for these individuals to fly, etc.
April Morome, Autistic person When I went to get Covid-19 testing that was required for my surgical procedure on my GI system, the personal at first were impatient with me until I explained I had to mentally get myself ready to deal with the physical pain that the testing causes me because my level of pain is higher as it often is in those who are autistic and that I am autistic. Then she became a little more patient. They should be trained to completely work with allbforms of disabilities, whenever possible, to collect samples to test for Covid-19.
Julie L Shaughnessy , Parent Masks mandates
Shelley Masks have worsened audio processing disorders and social distancing has exacerbated social anxiety and the like
Adrienne Tactile sensitivies to masks, etc.

Benefits: The COVID-19 pandemic has shown that remote options and other accommodations are feasible, and these options should continue to be available in the future.

Respondent Response
Yvonne Federowicz Some autistics prefer working remotely and thrive in such less intensive social situations. This could be evidence for the ""Social Model of Disability""...
Jossette Bailey, UNC Chapel Hill Like I said I'm a phd student and I teach my own classes as well. Online work, telehealth, etc, has all been amazing for me. I know this is a personal issue and some people like it more than others, but it's important to consider how remote options help people who have random ASD-related problems (it's too hot, I can't go out today. It's too loud/bright even with sunglasses and ear plugs. I can't get comfortable. My digestion sucks, etc)
Anonymous A lot more work than we thought can be done from home. Time in the office is sometimes more about controlling workers than actual output. That was an incredible accommodation for me, while I had it, and it was an astronomically difficult adjustment when I had to come back. I'm still a wreck. I wish more workplaces would prioritize making work from home sustainable into the future.
AutisticallyReal, Actually Autistic Advocate The most wonderful thing to come out of the COVID-19 pandemic is to see the accommodations implemented by most businesses that should have been given eons ago. The ability to do remote work, acceptance of self-care, normalization of anxiety and depression, acknowledgement of feelings of isolation. All of these are things Autistic people experience on a regular basis. I believe that the open discussions that have been happening regarding the above topics are the best things to come out of this pandemic. On the flip side, there of course has been a reduction in speech, OT, and other types of in person therapies that can be helpful to some Autistic children.
Anonymous There have been some benefits to the COVID-19 pandemic. Mask-wearing has reduced the stress of some Autistic people from straining themselves from reading facial expressions with the person's speech. Wearing a mask also removes the pressure to have appropriate facial expressions. Curbside ordering food and purchases has helped immensely remove the task from shopping on the feet, encountering other people, long lines. There is a specific dance to perform in order to not be harassed or encountered in a store that isn't always comfortable to an Autistic person. Such as talking to oneself, stimming, wearing headphones in the store. Early elderly shopping hours I'm sure has helped many elderly Autistic adults and elderly adults in general who need to protect their health as well as shop at their pace in peace. I think including elderly or disabled shopping and eating hours would be immensely beneficial to both groups. Mask mandates are obviously needed and helped countless people but likely especially the disabled, immunocompromised and Autistic. There should be more self-checkouts/mobile checkouts. Self-serving would be preferred but it's understood why it's dwindled.
Anonymous Honestly, I have been more comfortable in public when I'm able to wear a face mask and when people social distance themselves from me. I would like to feel this comfortable in public when there's not a pandemic going on also. How to accomplish that, I'm not sure. Ample hand sanitizers in stores are very important to me and need constant attention. Mask policies need to be enforced, literally no employees will actually confront customers without masks, and this needs to happen, I have never seen it.
Anna Me and many other disabled people have been extremely happy to be working or going to school from home. It protects us against discrimination and bullying, is aligned with many of our needs-- please make the online formats more of an option. We counsel each other to be okay, creating a more therapeutic society for ourselves. The community is strong, but the racism and ableism within it, just like the Deaf community, does need to be acknowledged. That's where education could help, along with abuse prevention by teaching children early on about bodily autonomomy and that they're able to say No.
Michelle Hecht, Private Practice Some persons with ASD have benefitted from the expansion of remote ""Telehealth"" services. It is important to continue these options as in-person options are re-introduced. Other persons with ASD, who cannot access remote services, have been completely left behind. We need to increase the expertise, and the pay for ""DSP"" workers. This role is critical.
Josh Compton Everyone is struggling. And remote learning planning needs to be happening now for the next health crisis, in addition to meeting current needs.
Ryan It has been positive in many ways!! While there has been pain and suffering due to COVID, accept and acknowledge that shelter-in-place, social distancing, online/virtual learning, online/virtual socializing, needing to stay home has done sooooooo many is good....and has helped us thrive and actually feel more included in society! A big issue is to not push for everything to go back to pre-pandemic times. A big issue is parents and others with authority over autistics pushing autistics and forcing them into social situations and other environments that were never good or welcoming or comfortable in the first place; and overriding their autonomy and just plain accepting that while it may not be helpful to parents/authority figures, this new ways of doing this is good for them A big issue is not slowing down the modifications made to living and working at home, but IMPROVING it...more access to mental health, socialization, healthcare, etc
Shannon Borg, autistic parent to autistic children We love that life has slowed down and we can finally take a breath. People want too much too fast and we do not have the ability to work at 150% all the time. The pace of society needs to slow down, we need more work from home options. We need the ability to not be involved in social situations that we don't want to be in. Have specific times we can shop or do errands where the music is not blaring and there aren't thousands of people around. Make accommodations that support our needs too.
Anonymous Being forced on a dirty, loud, crowded high school campus after a year of staying clean and far away from virus-carrying teenagers is an ABSOLUTELY wonderful experience! My eardrums simply love being destroyed by a bunch of kids that can't keep it down. It's a great time. Can you hear the sincere and genuine joy leaking from my voice?
Anonymous The option to participate in many areas of public life remotely has been an unexpected outcome of COVID-19 that has been very supportive of many autistics. How can we continue having universal alternative ways to attend events and to communicate once the pandemic is no longer a concern?
Anonymous Expand on the use of virtual meetings - including social opportunities - for our community.
carol staszewski Beneficial side effects revealed possibilities for accommodations in policies and forms for work and communication that were considered unrealistic in the past (zoom, flex hours, masks/physical distancing, to name a few). For many on the spectrum, 'returning to normal' feels more like going back to 'jail' after a period of freedom from the oppressive conditions of a world that isn't designed for us (to borrow from a book title).
Sandra Lee, Autistic adult Many of us thrived during the pandemic due to the ability to work or attend school from home. While it has increased our sense of isolation (for the sizeable percentage of us who do crave human interaction), it has also been a time of decreased stress on a mundane, day-to-day level for many of us.
Aishah The pandemic was a wonderful example and case study that remote work and accommodations work and help people on the spectrum. Forced socialization in the work place is silly and burns everyone out to some degree.
Peggy Hamby, Speech Language Pathologist The impact of online learning has been huge to students with significant autism. How do we find a way to deliver services other than virtually? How do we find enough personnel and money to do services in a safe place face to face?
Anonymous How will hybrid and remote work environments benefit ASD job seekers?
Anna R Myers Many autistic people were able to unmask during the pandemic for the first time in their life. And this is actually a very healthy thing. However, the process of getting back into the previous ""normal"" routine while unmasked has been difficult for both the autistic individual and for those around them who do not like the new ""weird"" person. This Ableism should be addressed more publicly and spoken about outside of exclusively autism circles so that people are aware this is something going on and will be less terrible to autistic individuals about it.
Lisa Jeanne Graf Many have gotten accommodations through COVID that were not available before. Keep those accommodations! Benefits have included more access online, job accessibility benefits, and more physical space in stores. Many school districts could not do ABA for children learning remotely which was great for those children even if their parents did not realize that.
Roseann Schaaf, Thomas Jefferson University how to convert evidence-based interventions to remote platforms and delivery.
Michelle Cheney The IACC might consider that many families with autistic children are routinely dismissed or misinterpreted in their perceptions of their children no matter what subject it pertains to, including the pandemic. As the parent of a 24-year-old autist, my son's autism is the organizing principle of my life. Many initial pandemic-related changes were fantastic for us. Video medicine. Delivered groceries and meals to the house. That the world slowed down to a pace that my son could absorb, and that the usual social expectations for the types and extent of social engagements were greatly diminished or nonexistent was a real blessing. For a while, we felt ""normal."" With the emphasis on returning to a highly social, in-person lifestyle, including for accessing services, the old pressures and their attendant anxieties have returned. Yes, the mask is still a sensory issue, but we found one my son can tolerate.
Anonymous One important aspect of the COVID-19 pandemic that the IACC should consider is that the “return to normal” is difficult for many autistic individuals, myself included. The 2020-2021 academic year was very successful for me because my school was all virtual, so I attended classes from my house, where it is much, much easier to fulfill my sensory needs, which means that my anxiety level was much lower so it was easier to do my assignments. The IACC needs to consider that some autistic people prefer virtual environments while others prefer in person environments.
Council of Autism Service Providers Access to telehealth became critical during the COVID-19 Pandemic. CASP developed and continues to update guidelines specific to the practice of Applied Behavior Analysis (ABA) via telehealth early in the pandemic. Additional research related to the provision of applied behavior analysis and other evidence-based services via telehealth is needed to ensure meaningful access to care. Council of Autism Service Providers (2020). Practice Parameters for Telehealth-Implementation of Applied Behavior Analysis: Continuity of Care during COVID-19 Pandemic. Wakefield, MA:
Anonymous The pandemic has shown that remote working and appointments work great if we want them to. Keep these available to make things more accessible.
Rappahannock Area Autism Council Making sure that Telehealth remains accessible is absolutely imperative for continued parent support, consultation, support, etc.

COVID-19: More research is needed to understand how the COVID-19 disease affects autistic people.

Respondent Response
Anonymous Autism impacts one’s sensory and since not much or enough is known of all the factors of ASD how do we know how vaccine or virus impacts the community?
Elissa Leonard People with the worst Covid outcomes seem also to have the worst nutritional status.
Dani Sellmer We need to start education the medical community and families on co-occurring disorders that are putting autistic adults and children at risk for severe complications from covid. Many parents are unaware that the number of autistic children and adults who have been hospitalized and died from covid is higher than the general population. Educators also need to understand this. Many families who do understand this have been through a lot to keep their family members with ASD safe. They are financially struggling and struggling to provide education and services that are being denied because the individual cannot be in person to school or therapy. Many of those in the autism community suffer from anxiety and access to mental health care is nearly non existent. I believe that this pandemic has severely hurt the autistic community and there is no one helping to solve this. There is no support for families to help their loved ones. Our autistic son has suffered greatly not being able to socialize and we will spend years if this is ever over starting all over with his socialization skills. For us, covid has taken a huge toll on us financially.
Elizabeth Bartmess Long covid.
konjoo lee ADHD/Autism is a condition in which brain function is disturbed by an electrical failure of the brain. Long COVID is when waste products from the process of fighting the virus and the body's immune system attach to various parts of the body, disrupting brain control or organ function. Long COVID seems to be cured by forcibly dislodging and removing the attached waste material.

Disparities: The autistic community, along with underserved communities, have experienced additional hardships during the pandemic, such as access to vaccines, healthcare, and other services.

Respondent Response
Kristen Herrett Lack of access to services in rural and remote areas.
T. A. Meridian McDonald, Vanderbilt University Medical Center Autistic people have a higher likelihood of co-occurring conditions and these co-occurring conditions may interact with COVID-19 and/or vaccinations. INCLUDE AUTISM AS A DESIGNATED GROUP FOR HEALTH AND HEALTHCARE DISPARITIES RESEARCH People with various presentations of autism with/without co-occurring conditions are more likely to experience poverty and decreased access to healthcare. Many autistic people live in poverty without access to affordable housing and transportation potentially increasing their risk for COVID-19- Fund affordable housing with accessible transportation for autistic people.
Anonymous Healthcare disparities
Anonymous We need to examine access to vaccinations and any disparities for marginalized groups eg non speaking, people of colour, those in supported accommodation. We need to examine whether Autistic people had access to Carers and support workers who are vaccinated.
Anonymous - We're more likely than other groups to be at the mercy of caregivers who limit access to masks and vaccines. - We're more likely to have benefitted from the ability to work from home and manage meetings flexibly, which will make compulsory ""returns to normalcy"" more difficult. - Our medical issues frequently present unusually/atypically, so we're less likely to be diagnosed. - Doctors tend to prioritize our caregivers' views over ours, so pain and other symptoms may be ignored due to the conviction that we're ""faking,"" a failure to recognize signs of autistic discomfort, or other assumptions/stereotypes, until later in disease progression. - Those of us with the power to do so frequently avoid medical providers due to past experiences with mistreatment, and many of us have been taught that our natural responses in most situations are wrong, so we're more likely to disregard COVID symptoms. - Our mental health issues tend to be ignored, as many professionals don't accept that we can feel pain or emote in ways different from neurotypcials. Furthermore, many of us avoid mental health services due to past experiences with people attempting to ""cure"" us, misinterpreting behavior, etc. As such, we're more likely to receive substandard care for mental health issues. Also, please note that the autistic community, consisting of autistic people, is not the same as the autism community, consisting of neurotypical parents, caregivers, and industries aimed at ""helping"" autistics.
Chiara Jaffe, Parent of a 14-year-old with Down Syndrome & Autism Most doctor's offices do not have direct access to the COVID vaccine so most vaccines are received at pharmacies, clinics, and community centers. Many individuals with autism have sensory and behavioral issues that preclude obtaining vaccinations at these locations. Drive by options and sensory friendly vaccine events are needed to facilitate the receipt of initial vaccinations and boosters for this population. In addition, personal care attendants should receive hazard pay and higher wages in general to ensure availability of these essential support workers. All underserved populations are at increased risk for COVID and may have more difficulty accessing services. Efforts need to be made to increase availability of vaccines and outreach efforts.
Jennifer Dapkins Discrepancy in vaccine access, prevention, and treatment.
Anonymous How to increase vaccine accessibility for people with ASD and increase vaccine rates in the general population.
Anonymous It has highlighted just how vulnerable people with disabilities are - and their families. We need to have a comprehensive plan for support.
Anonymous COVID Testing and vaccination sites should be provided for this very sensitive population. There were none available. thus limiting the opportunity for testing and vaccinating.
Anonymous Having resources to make sure those with ASD and their caregivers are aware of the vaccinations available. Help them understand the need for masks and when they should be used. Proper hygiene during and following contact with others or during community outings.
Eleanor Wildflower Discriminatory crisis standards of care result in the neglect and deaths of many autistic people. Because of institutionalization, autistic people are also disproportionately likely to contract COVID-19. The IACC must work to end medical discrimination and institutionalization.
Ren Koloni My predominating questions on this topic have been: ""Why do we seem to have it worse than allistic people?"" and ""How has quarantine been affecting us, especially those of us in abusive or toxic environments?""
Bek The pandemic continues to reveal widespread discrimination. Disparities must be eliminated in health care and every facet of society driven by systemic racism, ableism, and other oppression. Studies and news reports have highlighted some of the ways in which COVID has disproportionate adverse, sometimes fatal effects on people with disabilities, including autism. However, there are still major gaps in what we know and, thus, what we are doing to address COVID19 impacts on such individuals and their families. This is likely particularly true with regard to individuals with significant disabilities who: (1) live with their families, especially with parents over 60; (2) require AAC to express themselves; (3) are Black, Indigenous, People of Color or face other oppression; (4) live independently with some support; or (5) require HCBS but do not receive it either because they are on a waiting list or are not eligible based on an IQ label or a medical diagnosis rather than their demonstrated needs. The vast majority of autistic people and those with other significant disabilities live not in institutional congregate or group settings, but with their families or in other typical residences. We strongly urge a comprehensive and ongoing assessment be done on the pandemic’s impact on people with the most significant disabilities, their families, and communities.
Rachel Zanoni The pandemic continues to reveal widespread discrimination. Disparities must be eliminated in health care and every facet of society driven by systemic racism, ableism, and other oppression. Studies and news reports have highlighted some of the ways in which COVID has disproportionate adverse, sometimes fatal effects on people with disabilities, including autism. However, there are still major gaps in what we know and, thus, what we are doing to address COVID19 impacts on such individuals and their families. This is likely particularly true with regard to individuals with significant disabilities who: (1) live with their families, especially with parents over 60; (2) require AAC to express themselves; (3) are Black, Indigenous, People of Color or face other oppression; (4) live independently with some support; or (5) require HCBS but do not receive it either because they are on a waiting list or are not eligible based on an IQ label or a medical diagnosis rather than their demonstrated needs. The vast majority of autistic people and those with other significant disabilities live not in institutional congregate or group settings, but with their families or in other typical residences. We strongly urge a comprehensive and ongoing assessment be done on the pandemic’s impact on people with the most significant disabilities, their families, and communities.
Sandra McClennen The pandemic continues to reveal widespread discrimination. Disparities must be eliminated in health care and every facet of society driven by systemic racism, ableism, and other oppression. Studies and news reports have highlighted some of the ways in which COVID has disproportionate adverse, sometimes fatal effects on people with disabilities, including autism. However, there are still major gaps in what we know and, thus, what we are doing to address COVID19 impacts on such individuals and their families. This is likely particularly true with regard to individuals with significant disabilities who: (1) live with their families, especially with parents over 60; (2) require AAC to express themselves; (3) are Black, Indigenous, People of Color or face other oppression; (4) live independently with some support; or (5) require HCBS but do not receive it either because they are on a waiting list or are not eligible based on an IQ label or a medical diagnosis rather than their demonstrated needs. The vast majority of autistic people and those with other significant disabilities live not in institutional congregate or group settings, but with their families or in other typical residences. We strongly urge a comprehensive and ongoing assessment be done on the pandemic’s impact on people with the most significant disabilities, their families, and communities.
Harold M. Frost III, Ph.D., University of California (retiree) Under-reporting bias aggravated by especial vulnerability of those young children with ASD to isolation from society and thus from inclusion in surveys.
Nina The pandemic continues to reveal widespread discrimination. Disparities must be eliminated in health care and every facet of society driven by systemic racism, ableism, and other oppression. Studies and news reports have highlighted some of the ways in which COVID has disproportionate adverse, sometimes fatal effects on people with disabilities, including autism. However, there are still major gaps in what we know and, thus, what we are doing to address COVID19 impacts on such individuals and their families. This is likely particularly true with regard to individuals with significant disabilities who: (1) live with their families, especially with parents over 60; (2) require AAC to express themselves; (3) are Black, Indigenous, People of Color or face other oppression; (4) live independently with some support; or (5) require HCBS but do not receive it either because they are on a waiting list or are not eligible based on an IQ label or a medical diagnosis rather than their demonstrated needs. The vast majority of autistic people and those with other significant disabilities live not in institutional congregate or group settings, but with their families or in other typical residences. We strongly urge a comprehensive and ongoing assessment be done on the pandemic’s impact on people with the most significant disabilities, their families, and communities.
Erin Prangley, Consortium for Citizens with Disabilities' Developmental Disabilities, Autism and Family Supports Task Force People with IDD, including autism, were disproportionately impacted by the pandemic. A cross-sectional study of 64,858,460 patients across 547 health care organizations reveals that having an intellectual disability was the strongest independent risk factor for presenting with a Covid-19 diagnosis and the strongest independent risk factor other than age for Covid-19 mortality. Individuals with intellectual disabilities are at significantly elevated risk of contracting Covid-19 and that they will subsequently be admitted to ICUs and/or die in-hospital more often. Besides underlying conditions, individuals living or working in congregate settings are at much higher risk of contracting the virus and spreading the virus.
CommunicationFIRST The pandemic continues to reveal widespread discrimination. Disparities must be eliminated in health care and every facet of society driven by systemic racism, ableism, and other oppression. Studies and news reports have highlighted some of the ways in which COVID has disproportionate adverse, sometimes fatal effects on people with disabilities, including autism. However, there are still major gaps in what we know and, thus, what we are doing to address COVID19 impacts on such individuals and their families. This is likely particularly true with regard to individuals with significant disabilities who: 1) live with their families, especially with parents over 60; 2) require AAC to express themselves; 3) are Black, Indigenous, People of Color or face other oppression; 4) live independently with some support; or, 5) require HCBS but do not receive it either because they are on a waiting list or they are not eligible based on an IQ label or a medical diagnosis rather than their demonstrated needs. The vast majority of autistic people and those with other significant disabilities live not in institutional congregate or group settings, but with their families or other typical residences. We strongly urge a comprehensive and ongoing assessment be done on the pandemic’s impact on the cohort of people with significant disabilities, their families, and communities.

Mental Health: The COVID-19 pandemic increased feelings of isolation and loneliness and negatively impacted mental health in the autism community.

Respondent Response
Anonymous Remote learning and communication needs, the problem of isolation as it affects mental health. Autistic people need home and community based services to survive.
Guohua Li, Columbia University What is the impact of the COVID-19 pandemic on the risk of self-harm (self-injurious behavior and suicidality) in people with ASD?
Anonymous Isolation will continue for this population- perhaps the time is ripe to open the hearts & eyes of the rest of society that some stay in that Covid-19 for their whole lives & do not re-enter!!
Anonymous Covid has caused everyone to reduce their social contacts. For the more verbal among us, that can be made up in other ways, thru social media or phone calls, zoom calls etc. Each interaction with a stranger is perceived as a risk by many parents of kids with ASD, and yet the kids and adults with asd may not see it as risky at all. Lots of in home providers have quit or moved to work in other areas due to the covid risk. Kids with asd may have poor awareness of social distance or sensorydifficulties which prevent them from masking. Many kids have spent long periods of time out of school, taking away their parents' one reliable period of time, free from the responsibility of tending to their child's needs. I have also seen schools looking for people to fill para positions. Covid has put a lot of burden on parents and made it difficult for teachers to teach kids with ASD. Meanwhile adults and their parents or caregivers grow more isolated.
Erin, Parent The autism community and their families may need more emotional support.
Jane Kontoff Greater isolation among ASD adults during the pandemic/related depression.
Michele Lopez, The Guidance center-Early Head Start Children with Autism lack social engagement and interactions with the peers and the pandemic was not supportive of their needs for peer interactions!
Anonymous Socialization
Cyndi Stephenson We are lonely. Many of the kids rely on therapies and group activities that have been put off indefinitely. I don't know how to fix that right now. Outdoor activities would be nice. City sponsored activities for autistic people in a safe setting. NOT just developmentally delayed autistic people! It needs to be recognized how many of us are ASD-1 and though that means we require less support academically, we are still struggling as adults. Also when it comes to medical support doctors should be trained to properly help autistic patients. We often have phobias and struggle with being touched and many times doctors don't have the patience for us. They either infantalize us or tell us to grow up and quit acting like a baby. Many autistic people avoid doctors altogether and right now during this pandemic it's SO important to get medical help before your illness becomes serious.
Eileen Nicole Simon, I continue (thankfully) to recover from COVID-19, which I likely caught from get togethers with my autistic son. He almost died from COVID-19, and we were making funeral arrangements. My husband (his father) died May 2, 2020 from COVID-19. The ""community"" group home system in Massachusetts has not treated us kindly. When my son was at Westborough State Hospital I was never denied the right to visit him. State hospitals are now long gone and demolished in Massachusetts. The ""community system"" stinks. Family support groups at the state hospital were very helpful. We have NAMI, but autism is not well understood by most members of NAMI. We attend NAMI meeting to get together with former state hospital friends. COVID-19 has kept us even more isolated from gatherings with friends.
Kevin, Legal Reform for the Intellectually and Developmentally Disabled (LRIDD) COVID-19 has limited that necessary social assimilation with peers, even engagement with other families who attend with their Autistic peers. This enhanced social isolation has only exacerbated those social issues most Autistic people suffer from. They may have likely adapted or enhanced an unhealthy reliance with technology (facebook, instagram, snapchat) to attempt at this communication. Restarting even regular Autism support meetings will be vital towards that end goal of social assimilation. However, the two main pillars of daily regular social assimilation in a community and physical rehabilitation must be met. COVID-19 has created barriers towards that social assimilation as evidenced by, for example, college/university on-campus mask mandates/vaccination requirements yet physical rehabilitation should now be accessible at least to those who have the health care insurance to attain it.
Amy Morosini What everyone experienced during covid, isolation, loneliness, depression, etc., is what those with ASD experience all the time. They have no friends, there are very limited social programs for kids with ASD and the programs that are available are too expensive. Provide free transportation to schools, work and programs for those with ASD so they can participate in this world have a decent quality of life. Make it mandatory for police, teachers, amd other service oriented employees to learn about people with ASD.
Nicole Shelton, AdvocacySD It’s not just about autism. We are facing a mental health crisis of epic an unseen proportions probably since the dust bowl. Do you have kids with autism who have been forced to learn online for one and a half years or in some cases more. They don’t learn that way. They regress that way. You don’t have enough mental health providers and because the government has decided to just give away free cash through unemployment and recovery programs, nobody wants to work. Nobody wants to take the jobs that deal with the kids with mental health issues. Stop giving away free money and people will go back to work
William Ash I think isolation, in terms of negative mental health impacts, are not well understood in autism. In many regards, social situations are exhausting for me, but I do like people. I also like being by myself or with my partner. So I think in some ways I have a certain resilience. I am also a rule follower and so I was able to work well with public heath mandates. Naturally, why should a pandemic not have a negative effect? I think some in the autistic community that have sensory issues or have executive functioning deficits would be more impacted.
Anonymous Mental health concerns.
Heidi Parr, Case Manager, Seven Counties Services Social isolation, and how it has caused regression with some people with autism. Understanding that some people with autism cannot understand social isolation, personal spaces, cannot tolerate injections or struggle with medical intervention
Lucas Kunach, Fraser Please add as a focus: -- The significant increase in need for child and family mental health supports
Lisa Nieman, Parent Social connection is so important for the ASD community - so isolation has definitely been hard! Also, change in routine can be difficult, and we've had to deal with a lot of that. Fortunately, in our situation, my son doesn't have any medical conditions that I think would make him higher risk, and fortunately he's over 12 and is vaccinated.
Michael Waterman That many people with ASD will have a significantly higher amount of anxiety and meltdowns as a result of COVID.
McKenzie Hanson Isolation is bad for anyone but for autistic children and adults it is detrimental. Anxiety increases, depression increases, symptoms increase. We need community, group therapy, and in home aids for routines.
Teresa Olafson The social context of this communicable disease that instigates a great amount of fear and anxiety.
Alyssa Stone, Dynamic Lynks Autistic individuals mental health has been significantly affected during this time and critical developmental windows have been drastically diminished. It is important to provide comprehensive services in the short and long term to support the additional needs these individuals will face from spending nearly 2 years in isolated environments.
Alexis Oliver Williams Lack of socialization, isolation and decrease in services (i.e. transition, Special Olympics and field trips).
Anonymous Psychological impact without adequate training and understanding of ASD disorders and appropriate treatments, screening, monitoring and the like for not only providers but also caregivers and family.
Christina Why so many people noticed their clear autism symptoms during the COVID-19 pandemic. How lockdown and other regulations changing near constantly impacted the mental health of autistic people.
Anonymous Mental Health Needs of individuals on the spectrum and their families

Misinformation: More efforts are needed to combat misinformation surrounding vaccines and COVID-19 and help the autistic community understand the importance of COVID-19 mitigation efforts.

Respondent Response
Catherine Martell, autistic, health care provider protecting against misinformation.
Tonja Nolan, independent too much contradictory information and nothing that can be understood literally - increases panic, fear, etc. and a move to the fringes of over-worrying this issue or rejecting it out of hand.
Lori, Guardian and speech therapist The inconsistencies of seeing that COVID-19 is still an issue that puts them at risk, yet seeing so many people disregard any safety measures. It is hard to have someone wear a mask when they see so many not wearing them in public places.
Justin Pimentel Access to simple but important information regarding the effects and treatment of COVID-19 is the most important step.
Dax, Autistic Self-Advocacy Network, Volunteer Combat anti-vaccine rhetoric. We are tired of people telling one another, ""I won't vaccinate my child; I would rather want them dead than autistic."" It's absolutely soul-crushing to be told that it's better to be dead than to be you.
Jessica Hardy, Independent I support social distancing and getting vaccinated, and educating all people about the most effective means of staying safe in these times. I feel like misinformation about Autism/Vaccines is so harmful it should be considered a second Pandemic. I believe the right, informed people safely outreaching to the community through progressive and accurate ads, walk-a-thons, information booths, social media outreach, and toll free hotlines can make an effective change for the better. Going on NPR, engaging on Facebook, news interviews and effective means of communication like that. Truly nothing about us without us!
karen barrett, barrett consulting education for boosters and continued vaccination education

Loss of Progress: There has been a loss of skills and progress during the COVID-19 pandemic.

Respondent Response
Jennifer Degner, Early childhood special education teacher It has been hard on families. I can’t express the devastation of the regression of skills I have witnessed and parents have shared due to Covid-19’s impact.
Emily, Mother of an autistic 4 year old. The pandemic significantly back tracked my son and threw him out a wonderful program at pediatric therapy network. It was the saddest thing ever. Autistic kids thrive in person hands on therapies. None of this online stuff. Let the majority of non autistic kids do online. Our kids need these stimulating enviorments much more.
Brandi Timmons So many students regressed during the pandemic. You have a whole population of students who now need to make up for a year or more of education time and skills loss. Extra resources will need to be poured into those students to help them recover what they have lost.
Jill Goldstein That the impact on the autism population was an afterthought. My 23 year old son had no options. He does not have the ability to socialize on zoom. Without a place to go everyday, he became more withdrawn. He gained lots of weight. He has not recovered from this experience
Sherrie Kinard, Parent of 2 Spectrum Children Regression of social skills due to inability to interact with other people.
Anonymous How the lockdown has hurt all the social skills autistic people have gained.
Gina Stango Whew! This is an important one. My daughter experienced regressions after the start of the COVID lockdown and she has still not regained the level of progress that she had achieved pre-COVID. We need much, much more treatment availability in light of the regressions caused by COVID.

Routine: Routines are comforting for some autistic people, and the disruptions in routine associated with the COVID-19 pandemic, including re-entry afterwards, can have detrimental effects on mental health.

Respondent Response
Margie Bruff, University of Colorado at Boulder I was diagnosed only 4 months before the pandemic started so I'm not sure whether I toned down my masking because I finally understood what I was doing or because I was limited in social interaction to people who love me for all of me so I didn't feel as much pressure to mask; now going back into the world socially is a huge challenge and I barely know how to handle it myself so I have no clue what IACC should consider but maybe this perspective is helpful :/
Anonymous Provide services for people who need to get a new routine, and who has a disrupted routine. Having a disrupted routine can be devastating to mental health, and we need extra help.
Anonymous Many autistic people will likely have a hard time returning to work as it used to be. Although the initial change in routine was difficult for many of us, working from home has benefitted the vast majority of us who are working. Many of us have finally had the chance to recover from autistic burnout and find who we truly are without the constant pressure to conform by society. I strongly suggest working hard to ensure many of these accommodations to be able to work from home are kept in place.
Danielle Draut For those young people in college who were used to a schedule and friends it was very difficult. They develop routines and supports and there were isolated more than they typically needed. I think some people probably didn't mind because they are to themselves any way but those again with routines might be affected more.
Anonymous Reintegration into society is especially difficult, particularly for autistic children. Research the role of screen addiction and ASD with Pathological Demand Avoidance.
Jessica Easton Change is especially hard for the ASD community so as things normalize getting people back out to socialize is important. Letting companies know that many autistics make great workers and as people go back to work in person this community can help fill so many of the vacancies you see
Savannah W., Late in life, diagnosed autistic, woman, wife and mother. For many, the constant change to routine and loss of stability in numerous ways has been devastating to our mental health and well-being. Autistic children sense the changes as well, and parents (autistic and not) are struggling to juggle everything while attempting their own rebounds back into normalcy. The stress and anxiety is at an all-time high. The support, understanding and accommodation for us is at an all-time low.
Elizabeth Axford The stress associated with rapid changes in lifestyle during the pandemic has been present in nearly everyone’s lives, but the toll they took on autistic people, many of whom find it difficult to communicate emotional needs to someone who understands, is especially great. Connecting autistic people with reliable mental health services that understand people of their neurotype is more important now than it has ever been.
Kathleen Meyer Disruption of routines is even harder on autistic persons than typical people. We were grateful our routines were restored early in the pandemic to help stabilize our son. Hospitalization would be the worst nightmare I can imagine for our son, so appreciation of our center for masking and distancing is tremendous. We are also grateful that those of us caregivers and those with autism eventually got priority in the vaccine line. My son is unable to wear a mask. Travel is not possible. Our and we are vaccinated and we will get boosters. We are very careful as he would be unable to be considerate and not share his germs with everyone. Not possible. We have been lucky so far. It is tragic that such a public health issue is so politicized and misunderstood. It presents a nightmare for us.
Anonymous The effects of transitioning from COVID-19 back to COVID “Normal”, the impact of change of routines on the mental health of Autistic people, the drop out rate of Autistic students in tertiary settings during the pandemic, further supports to assist Autistic individuals post-lockdown.
Frankie Harvey-Shea It is common for people in the autism community to have difficulty with change in routine. Change has been the constant of the political/social COVID-19 debacle. We like rules and standards. The chaos of people who refuse to accept and follow the rules set out for the benefit of all is very disturbing to us. Consider how most people respond to the aggressive and sometimes violent opposition by members of their families and communities and multiply that distress by 100. The toxic social climate is so disturbing that many of us have withdrawn altogether and will have a difficult time reintegrating into our communities because of the negative atmosphere.
Anonymous Such a wide spectrum to consider! Most confusion will be to do with 'change'.
Jacqueline Ward Since many autistics have difficulty with social situations, Covid-19 restrictions have been less stressful. The problem is that as the world returns to some form of public life, social interactions, in person work and school, many individuals with autism have lost many gains in their social abilities and independence. The transition back out in the world may be very difficult for the autism community.

Services Disruption: The COVID-19 pandemic led to disruptions in access to needed services and supports for the autism community, such as the replacement of in-person schooling and healthcare with remote classrooms and telehealth visits.

Respondent Response
Lisa Wiederlight Famliies need support, since many agencies are not able to find staff. Maybe find more money to pay staff during the pandemic, but we all need support and respite. This is one of many issues.
Kathleen Virtual schooling was significantly more harmful to autistic children
Anonymous Please don’t waste money on this one. We need adult services for people with severe autism. They are being excluded from adult day programs, medical treatment and the community based on the lack of understanding and how to care for them. Autistic self advocates continue to put out a false narrative of what severe autism actually is. The future looks dire indeed. Severe autism suffered from inability to access online learning, day program exclusion, vaccine shot difficulty, no respite for families
Anonymous It is important to study how service access and delivery have changed and track increases and decreases. It is also an opportunity to diversify services and examine ""fit"" between individual and service delivery mechanism (i.e. remote services may be fit for some but not others).
Michelle Williams The breakdown of services that had been available before. My son lost his job and community services in March 2020 and still has not regained them. In WA state, the independent providers who come to our home are not required to be vaccinated, so our people are at risk of getting covid from their carers.
Stefanie Lombardo, Parent. Guardian. Caregiver. Advocate. Track, in real time, the reduction in programs, slots within programs, and community outings within programs as a result of COVID 19. Calculate the lost care/respite hours that resulted, as well as the reduced number of community interactions available to the disability community post COVID. Survey to determine the number of caregivers who are underemployed or unemployed as a result of the lack of programs now vs. 2019. Until you get a sense of the gravity, you won' be able to (in) appropriately address the problems on a reasonable scale.
Renee Mandell, mother Keep them engaged! It's a perfect storm for someone on the spectrum to stay at home. This is why I say start in the home. You can then move onto outside activities when they are ready.
Raliat M. Bello The disadvantages on the ASD community due to COVID-19. More special programs to introduce for the ASD community and their families.
Michele, Parent, school employee Internships have been cancelled or limited. In person life/job skill training remotely doesn’t work. Need to build up in person social connections again.
Stephanie Bridge, Parent It was a disaster. It upturned the rights of disabled children in schools everywhere and put IDEA on its head! The school system pretty much rewrote everyone's IEP's to suit their purposes without regard to the devastating effect it had on the skills lost for these children--especially the ones with autism. Then they wanted to put them on virtual, which for children who prefer one-on-one instruction, is another impossibility.
Melissa Drake, Mother of two sons with autism Our kids are not getting the education/life skills they need, parents can’t visit their children. I’m an etc yet all the employees go home to their families. Start investing in our kids and their future and realize most of these kids will have NOWHERE TO GO IF THEIR CAREGIVER DIES. These are maybe pc adults or minors, yet most have the brain capacity of that of a toddler. Would you leave or want your toddler alone on the streets if you die?!?! Start building for our kids who need the most now and will need the most in life when you give them crumbs.
Vanessa parrott Asd families are suffering alone with a dramatic decrease in accessible therapies and resources. Families NEED support and kind of support because currently everything full, everything’s waitlisted and we are suffering!
Anonymous How important it is for children with any and all learning disabilities to have in person learning/therapy. I understand safety is a concern but in my experience remote learning was not only not a good fit for my son, it was EXTREMELY CHALLENGING for him and I. All people with ASD need to be taught the dangers of Covid. (Not everyone has a parent/s to explain important medical, social, economic, etc. issues)
Anonymous The Covid pandemic has been hard on the autism community. Government needs to understand that the pandemic has driven many providers out of the field specially in home & community based services. We should be more flexible in who can be a provider due to the shortage of providers caused by the pandemic. We should understand that during the pandemic people with autism are under higher life stressors and May need more time to complete paperwork and do normal processes.
Michael In our experience, remote learning/education is often more difficult for people on the spectrum. Cues are lost, attention wanders, there is no touch or tactile aspect, and there is very little socialization that can occur with others. Conversely, when in person with others, someone on the spectrum may be much less aware of the potential mechanisms and danger of exposure to a virus.
Anonymous ABA therapy in person is performed easier than virtually. The pandemic has changed that dynamic for many.
A.K. The need for families of children with ASD was incredibly significant and largely unmet prior to the pandemic - specifically for families on Medicaid (in certain states where behavioral supports are not covered) or those without the financial means to pay for private therapy/services. Since the pandemic, the need has grown exponentially and families/children are struggling. Providers are asked to do more than ever and are burning out faster because of this. Providers are stuck in the middle between patients/families and hospital administrators who are only focused on revenue. Physician's are committed to always do right by their patients and insurance companies and hospital administrators will continue to take advantage of this fact. We cannot recruit new physicians into this field, and continue to work to meet the demands of the ASD community if the work is not appropriately compensated.
Angela W. Accountability is a must. We as parents have enough on our plates as is. This "" pandemic "" is SOOOOO in the way
Anonymous Families were left with no external support and those who were willing to hire staff through IHSS and other programs could not due to low wages and lack of staff willing. Closure of schools while difficult for everyone posed unique challenges where ASD children lost in person therapies (OT, speech, PT, behavior) which are also medical because they are tied to schools. Children who rely on 1:1 support were not able to engage via online learning or parents had to quit jobs to facilitate. Requests for make up services being heavily fought/denied by school districts.
Lisa policies that improve all aspects of the workplace for direct service providers to the disability community are important - pay, safety, working conditions, support and education.
Sonya Emerick My partner lost her job because we couldn’t safely utilize in-home staffing (funded by Medicaid) for our child during the first year of the pandemic. She had to stay home to supplement that lost staffing labor. We hoped her job could be protected (unpaid leave to return to work post-pandemic), but her large employer was not willing. Families who have had to make devastating choices—or who have had no good choices—trying to provide care for their disabled children during the pandemic still need remedy.
Maxim Tchoul, parent of an autistic man There has been a closure or significant scale down of day programs for autistic people. The current programs are understaffed and cannot bring back people with ASD that are staying at home due to their inability to attend the program.
Anonymous Education and how it has impacted IEP related services.
Marc H Joseph I would love to see more medical professional that are train to help autism children, especially regarding infection.
Jan Carpenter, parent of two handicapped children COVID shut down all day programing for the disabled. This put more burden and stress on their families and the child because they doesn't understand why they can't go to school or their program. This population needs routine more than any other population. Our daughter's day program is still closed 2 1/2 yrs later. Some have closed permanently.
Parent Ensure safety of day habilitation programs for adults in light of Covid-19.
Mollie Increased self-diagnosis during Covid, lack of affordable and accessible diagnostic services and wellness supports.
Elke Drayton My son is a 2020 Graduate. He was at the time when the country shut doen scheduled for job shadowing. Well it never happened so my 19 year old has no experience in the job world. The school graduated him and now DVR has to make up for that. This should have started in 11th grade not 12th grade. He was hired by Amazon but was terminated because he couldn't met production. Well for 3 month he gave the best he had for 10 hour days for 4 days and the last 3 weeks 50 hrs. That's a lot of working hours for a brand new Person in the working world. Did you all start out with 10 hour days? With job training he probably had a better chance to have succeeded in this Job.
margaret bennett The cost of living has increased as a result of COVID-19 and there are not enough funds to properly house, feed and cloth individuals in group homes. Due to the labor shortage, caregivers need to be paid a better wage.
Denise Wildrick, Autistic Adult and Parent It has been absolutely debilitating for the autism community but also provided unique situations for adaptation. Extra supports and help are needed. Starting with parents ALWAYS being allowed to be the paid care provider for their children. How dare you ask a parent to pay someone else to be with their child and they have to go to work, sometimes for less pay. It is insulting, rude and has nothing to do with what is best for the disabled child. SSI rates are a joke.
Katie Vahey Gaebler, Parent and ASD consultant Too many students are missing too much school, and tech for ""learning from home"" is inadequate. Waitlists for support services are so long, it's easy to give up hope for trying to access support.
Anonymous There needs to be academic support. A lot of these children with autism were left hanging out to dry by the virtual shift in schools because there was no access to actual special education as needed by this community.
Nancy Kearney, Parent adult autistic man in Massachusetts Every aspect of day programs, residential, most most important staffing through much better Pay to attract staff!!!!!
Anonymous Many children have gone without services and diagnosis due to Covid 19.
Meg P Autistic people should not be left behind regarding pandemic issues and concerns. Include our voices.
Tosha You should know that many of us have died in institutions because of systematic neglect and lack of funding from the government and the wider public consciousness.
Brittany Diane Daniels Online classes didn't work for a lot of autistic people and we need to find out how that is going to affect them for the rest of their school years and their lives as well. We also need to find out how the lost of needed services like OT, speech therapy going to affect autistic people who lost them for the rest of their lives.
Deepti Lacks of support at all levels...expensive edicatio ln medical therapies. No jobs
Anonymous Keep schools and day and work programs open and accessible. Redouble efforts to hire staffing.
Mary McTarsney A lot of children with ASD are not receiving the accommodations that their IEP's call for.
Anonymous reduction of access to high quality services since virtual services may not be as impactful especially for those with behavioral challenges impact on the family, including siblings.
Jennifer The importance of children who are not able to access proper education for virtual learning due to being high risk, as well as in person services. Public schools are failing children on the spectrum, and are simply dismissing children’s needs and IEP’s. Covid-19 has greatly impacted both children and teens on this front. We are in dire need of more programs available to help children on the spectrum.
Anonymous How the vaccine could potentially effect their neurology, the effects of those with ASD being quarantined and resources that need to still be made available to them
Jennifer Reppond, parent of ASD teenager / doctoral student Autism students do not learn well in isolation (or on a computers). They still need interaction with people to learn because they can't grasp anything without experiencing it.
Damaris Ramos, Ron Davis Autism Foundation, Inc. Covid-19 has impacted the autistic community as well as non autistics. Lack of at home or online services for the autistic community during the pandemic has increased the anxiety and depression levels for autistics and neurotypicals that support them. Providing a helpline or a list of partners that support the neurodiverse community for autistic individuals and their caregivers is crucial.
Becky Rosenberg, Partners in Policymaking (Maryland) Transition services for those whose educational and service plan has been interrupted these past two years Loss of friends and family Isolation Everyday safe living (immunizations, vaccinations, visits to healthcare professionals)
Anonymous Because of Covid 19, many adults with autism are not able to attend their day programs and have been sitting at home, or in group homes day in day out unable to access zoom learning or any other learning or mental stimulation. Their behaviors are increasing and their mental health is suffering. Moreover, the group homes are unable to keep staff due to low pay and higher wages elsewhere. It is a disaster in the making.
National Council on Severe Autism, National Council on Severe Autism COVID-19 has proven to be particularly devastating for people with autism. The IACC should: • Work with OSEP to create a clear definition of compensatory services that recognizes the unique educational loss that occurred for students with autism during the pandemic. This would include extending the age of eligibility for students who are aging out of IEP services. This also should provide additional time for children aging into IEP services from Early Intervention. • Work with the CDC to specifically prioritize all people with autism for priority vaccination as research has indicated that the mortality rate is 3 times higher for them. • Work to develop a model for increased funding for congregate settings, including residential facilities and day habilitation programs. This should include appropriate and specialized wage increases for direct service providers who serve those with severe autism.
Sonja Miller, Parent More families have had to lose income due to lack of caregivers. This industry needs to be able to offer more money
Amber Allen Delays in evaluations Delays in receiving services
Levi Miller The COVID-19 pandemic has definitely been a hard hit for many people in the ASD and Neurodiverse community. The big one schools switching to remote learning which is a huge let down for many students who need extra help with certain subjects. It also lead to many of us living in more fear and developing deeper distrust in our society, institutions and leaders. It also is tough for us who have sensory issues specifically with food sensitivities as some of us rely on the outside world for food and often don't cook at home. With restaurants and grocery stores having restrictions and limited items, in puts a great barrier for those who struggle with that issue. Another concern is some of those who are severely autistic are at higher risk of getting sick from the virus which probably caused concern for those having to care for them.
Elise Aguilar, American Network of Community Options and Resources Direct Support Professionals (DSPs) are the backbone of the Medicaid Home and Community Based Services program. However, the DSP workforce faces a long-running recruitment and retention crisis. Decades of stagnant reimbursement rates and an inability of providers to offer competitive wages has led to a significant shortage of DSPs nationwide. The COVID-19 pandemic has exacerbated this crisis. The lack of DSPs and high turnover rates have led to tangible negative effects for people with disabilities. A lack of consistency among caregivers leaves individuals they serve without familiar faces and severs bonds that have been created over time. Providers report higher rates of program closures and delayed introduction of services due to insufficient staffing. Without stable support in the community, individuals relying on those services are at higher risk of hospitalization and institutionalization. The DSP workforce crisis has worsened due to the COVID-19 pandemic, and there is no end in sight. The IACC must support greater investments in stabilizing, recruiting, and training DSPs, including supporting efforts for career advancement and professionalization of the DSP workforce. If the crisis is not addressed, individuals with autism will lose access to the options and resources necessary to remaining in their homes and in the community.
Anonymous Continuity of Services In Person for PreK & school age children & families needing greatest support.

Question Area Not a Priority: The effects of the COVID-19 pandemic should not be a priority focus in the update of the Strategic Plan.

Respondent Response
Frank Easton I don't think there is one, we're mostly loners so the isolation has had less of an impact on us than on neurotypicals.
Beth Mortl Treat covid and add persons the same as the regular population. Do not force vaccines or restrictions on our kids bc they have a disability.

Miscellaneous: Response addresses other topics not listed above.

Respondent Response
jean publiee many autistic kids are in fragile state from their entire bodies being [redacted] by the prior vaccine which had no real safety studies. to come along with another [redacted] vaccine and insist on [redacted] their bodies even more is [redacted]. doctors have been commiting [redacted] on the american public for money and it needs to stop and be stopped. safety studies every single part of the way and to call something experimental and force people to take it is [redacted] too. what is going on in the medical community is [redacted] like.
Sue Yacovissi, parent DSM is extremely important. If definitions of what is autism is lacking, how is there conversation to move forward?
Anonymous Zoom and other tech is cool, remote work great for disabled folks in some ways, but need discussion on ways remote work is harder, video chat harder etc. What works what doesn't.
Sally Smith The most important point here is that it has not affected all autistic people in the same way. Some have found lockdown to be a much more pleasant lifestyle and are finding the need to re-enter 'normal' life very distressing. For others they missed routine and relationships. For many it has made accessing services much more difficult and they will need extra support in the coming months and years. Most will need more services to make up for the time not receiving support.
Sharon Montgomery, U.S. citizen My parents have had significant setbacks, socially and healthwise, from the pandemic and now are in need of more help themselves as their strength has dwindled, their gym has closed, their social networks become small, and their routines disrupted.
Rebeka Edge, Behavior Matters More funding, options for consumers to direct where funding is used (beyond the state agencies) with private businesses
Peter Mazure, Parent; Chesterfield CSB How many people on the spectrum have lost their caregiver parents to COVID? Who is helping them now?
Hana Gabrielle, Wells Fargo Employment rate for autistic people
Edythe Koerber , Mother This is a different question for me as my son demanded to be vaccinated and wears a mask when in public. He is very much pro public health.
Autistic Self Advocate and current PhD student in Disability Studies I think it is important to take what we have learned from the pandemic and imply it to the upcoming post pandemic world. For example, did autistic students benefit from online learning and how can that be applied to the education system? Also understanding the impact on how the pandemic impacted the overall well being of autistic people. For example, there was language used early on about how parents ""won't have a break from their kids (with disablities)"" since school and other services were closed. autistic children would probably have missed going to school and/or clubs as well. In addition, they might have felt lowered self esteem from hearing that their parents ""won't be able to get a break from them."" On a similar note, it would be important to look into to see if rates of filicide increased during the pandemic
Anonymous Mandatory vaccinations of caregivers. Masking and social distancing of caregivers. No mouth hanging out or other half ass mask wearing.
Anonymous Although I don’t particularly believe it That would help them the most and to wash hands.
Anonymous Is anyone actually keep track of adverse reactions from the vaccines in the autism community? The CDC is notoriously indifferent. Who came up with the idea that is was ok to isolate individuals for months at a time? For an at risk population, this has been a disaster.
Natalie Crum, Rancher Toads The at home abuse a lot face
Anonymous Effects of institutionalization on COVID-19 risk for developmentally disabled people
Stacy L. Nonnemacher, Pennsylvania's Bureau of Supports for Autism & Special Populations As the pandemic continues, there is an increase in online activity for people with ASD. There is a need for the community to better understand what and how to target support so we do not compromise a person's independence but consider safe online engagement. Additionally, there is a need to find services and supports that do not rely solely on waiver programs to meet the needs of the individual.
Anonymous The pandemic has led to mass unemployment. How has this affected people with ASD?
Sarah Listen to the autistic community to hear what they need.
Philip Kahn-Pauli, RespectAbility Executive Summary of RespectAbility Recommendations to IACC Strategic Plan: - Support the Appointment of a Chief Accessibility Officer of the United States - Sustain a More Consistent and Extensive use of Schedule A Hiring Authority in the Federal Government - Promotion of Autism at Work and Neurodiversity at Work Programs - Audit pay, promotion, and hiring data based on disability status - Support Continued Favorable Guidance on Telework across all aspects of the Federal and Federal Contractor Workforce - Interview Alternates to Give Neurodiverse Workers a Fair Chance at Being Considered for Employment As an organization that advocates on behalf of job seekers with disabilities and their families, we believe that collecting the best ideas and innovative policies is critical to ensuring that Americans with and without disabilities have equal access to good jobs. Without such ideas communities and policymakers cannot direct appropriate resources to the places that need them most, particularly in the wake of the COVID-19 pandemic. If you have any questions or would like to discuss these matters further, our team stands ready to help, however we can. Thank you for considering our ideas. We look forward to a world where every aspect of our society and every company strongly values neurodiversity and has comprehensive autism programs. These comments were prepared thanks to the hard work and close attention of current Fellows Shereen Ali, Roy Payan, and Tammie Stevens.
Anonymous Autistic people often find it very important to follow rules and will have enormous difficulty seeing so many people ignoring and openly flouting the rules and advising others to do the same. Especially because those people are actively endangering others through doing do.
Adrienne Benjamin Clearly, there has been no part of our society that has gone through this unscathed. Of course, those with less resources and more vulnerability have been hurt the most.
Shyla Patera, North Central Independent LivingServices, Inc. as with anyone with a Disabilities people with autism have to have systems set allow can access them to live in the community . We need to focus on remote job opportunities and enough PPE for those that need assistance in limited congregate settings if one had or has Covid -19. there should be no discrimination in healthcare or QALYS used in determination of healthcare treatment options both during the COVID-19 pandemic and beyond.

Multiple Themes Addressed

Respondent Response
Anonymous Even greater stress to family system- what mental health supports can they NOT access and how can we mitigate these for all populations/cultures? Severe regression for many students due to change of education and routine- how do we close the gap when there already is such a large one and how does this affect gains for adulthood? Themes Addressed: Mental Health, Loss of Progress
Marie Cullom The Autism community is already isolated and the pandemic isolated them even more. It limited access to care and respite for families. Increased behaviors with the decreased access to support. Themes Addressed: Mental Health, Services Disruption
Dr Pamela Hodges, MGH Isolation and regression Depression Themes Addressed: Mental Health, Loss of Progress
Danielle Witt I feel like the impact of covid put some of these individuals with asd behind. My son had to stop his two therapies for about a year because he also has a chromosome duplication and weaker immune system. He got behind and has had trouble getting back into his therapies. I also feel like it showed the true gap with accessibility, a lot of things like virtual programs became available that weren’t before. Also many museums and businesses had limited capacity that actually benefited my son because of his sensory issues. I feel like more could be done in the way of accessibility after covid. Themes Addressed: Benefits, Loss of Progress, Services Disruption
Lisbeth Little Nationally IDEA based services need to be extended to give more than 1 year of additional supports. ASD kids regress and in our area there was a month of school. Then connection or access to internet, delivery of services through internet, re-evaluations that were put on hold, transition plan meetings that never happened- immediately they should extend services to 2-3 years. And parents should have due process available for districts that don't readily comply or provide equitable services. State funding for their programs should also be increased to deal with the demand where there was a pre existing shortage of staff and resources. I work for a parent information resource center and although we're short staffed we are facing a higher case count of parents desperately needing help with their child's education and special education plan- plans where there was little progress pre covid and now those lack of progress has been made the child/young adult in greater need and districts that have no staff or shortage of therapists. We need an immediate plan that addresses how the pandemic made everything worse or highlighted areas that were already in need. Themes Addressed: Regression, Services Disruption
Trisha Gallagher, Public Special School Principal I believe that our students returned much better than I expected. Some need to start with the basics again, but they were happy for the structure. We need a way to explain the back and forth of restrictions for them. Themes Addressed: Accommodations, Loss of Progress
Julie Francois My son has not received all his services since the pandemic began. We have regressed. We cannot get anyone to watch him (respite) during the pandemic and the strain on our marriage is to the point of breaking it. We are a broken family with no resources to turn to. More needs to be done and it needs to be equitable to all in all states. Themes Addressed: Regression, Services Disruption
Catherine Pinto, Parent Covid devastated my son with autism. His life was turned off like a light switch. Only having dedicated staff at his home made Covid bearable. We MUST pay a professional wage to direct support staff. They often determine the quality of life of the people they serve Themes Addressed: Regression, Services Disruption
Suzi Hiatt, parent & service provider Capriccio Elite, LLC During initial Covid-19 and continuing now, individuals with ASD residing in licensed facilities have been excluded from participation in public activities with approval from DBHDS (Virginia). Collectively, individuals in support were not allowed to leave the home, have visitors in or have homer visits. However, paid staff can come and go as they please. When vaccines became available, some facilities reported ""100% compliance of residents, 30% compliance of staffs."" this seems unusual at best. This has been quite harmful and many individuals have demonstrated regression in skills and abilities as a result. Themes Addressed: Regression, Services Disruption
Michele Mann, ECD Connections As much virtual interaction as possible. Whether it be educational, therapeutic and especially social. Many of the ASD population need a lot of appropriate social modeling. The lack of socialization opportunities are one of my biggest areas of concern regarding any ECE child with developmental challenges. Themes Addressed: Benefits, Mental Health
Matthew. Lawrence LeFluer, Vermont. Family. Network/. Special Olympics Vermont That. Available. Technology. And. Accessible Franklin curriculums. Information. Make. For. Adults and. Children. To. Understand. The. Information. Presented. For. Them. Aii. Of. Above. Information. To. Help. Citizens with autism with up-to-date current technology information so they can have accessible information at hand. Themes Addressed: Accommodations, Misinformation
Colleen Allen, Autism Alliance of Michigan Vaccines – education/awareness of the need to vaccinate, dispelling the historical misinformation regarding vaccines and autism Educational – learning loss and teacher/specialist workforce shortages, integration of services across systems, as mentioned previously Themes Addressed: Disparities, Services Disruption
Anthony J Thompson The adults who have been vaccinated get the adult day hab placement first as well as the flu vaccine. There is no accurate count on the population with ASD from when COVID started to the present time so many aged out and are stuck at home with only family to take care of them. Themes Addressed: Disparities, Services Disruption
Helen Leung research the mental health of Autistic people during and after the pandemic, keeping accommodations that were implemented during the pandemic (ie. working from home), changing access to support services, COVID vaccination rates Themes Addressed: Benefits, Mental Health
Christina Gleason Remote work and remote communication should be considered a reasonable accommodation for anything that does not intrinsically require in-person interactions, like physical examinations. When distance/travel is a barrier to participation, accommodations should also be made for in-person interactions, such as having one's personal physician conduct a physical exam on a video call with researchers, etc. Some of us are high-risk patients, and others have unique needs that are at odds with COVID restrictions and mandates. Themes Addressed: Accommodations, Benefits
Anonymous It's important to consider the impact of the increased stress, changes to routine, new expectations and difficulties, and drop in access to support and accommodation. Themes Addressed: Routine, Services Disruption
Catherine Cornell Many adults with severe autism reside in congregate care settings which have been adversely affected by outbreaks of COVID-19 and stopping of needed support programs in day settings. Themes Addressed: Disparities, Services Disruption
Anonymous How has remote work/school affected Autistic people? Many Autistic people found they did not have to mask/camouflage their Autistic traits as much during the pandemic because they were not in public places as often. What is the impact of this reduction in masking on Autistic mental health? How have Autistic people been treated by healthcare providers during Covid-19? Many Autistic people struggle with phone calls. How has the move to telehealth impacted Autistic access to healthcare? Themes Addressed: Mental Health, Services Disruption
Cheryl The stimulus checks need to go to the parent where the child actually lives with. They sent the stimulus checks to the parent that can claim the child per a judges decision. If a parent cannot work because daycare does not exist for their severely autistic child they no longer get to claim the child because they don’t get to file taxes anymore. The stimulus checks in this situation does not go to help the child all it does is make the non custodial parent a little bit richer. You would hope the non custodial parent would help their severely autistic child but in many cases they do not. Isolation is a issue because many autistic children have sensory issues and cannot wear a mask or they just don’t understand why they have to wear one. Providing in home education and therapy would be helpful. My child still isn’t in school because he can’t wear a mask and I am not going to endanger his life forcing him in a building with hundreds of kids and staff when he can’t protect himself. He has missed almost 2 years of school now. Remote learning doesn’t work for severely disabled children. It’s whatever the parent can provide. There is No help for the parent caring for a severely autistic child all by themselves and daycare does not exist for these kids. The Government will not help until the child is either 18 or 22 so a severely autistic child and the single parent has to suffer in poverty or the parent is forced to put their child in a institution. Themes Addressed: Accommodations, Mental Health, Services Disruption
Autistic Self Advocacy Network The next Strategic Plan should request and prioritize funding for research on the impacts of COVID-19 on different kinds of autistic people, including autistic people with co-occurring conditions, of different ages, and with high support needs. We also recommend research into the effects of Long Covid on autistic people. The IACC also needs to research the impact of the pandemic on home and community-based services for autistic people. Over-reliance on congregate settings and lack of access to home and community-based services due to COVID have been a largely unreported life-threatening risk to many autistic people. Members of our community have died due to a change or reduction in the services they received, or due to being placed in dangerous congregate settings. Our service system was in danger before the pandemic; COVID has only exposed and heightened these dangers. Research is also needed on best practices for a full inclusive education when autistic students must continue to receive an education via remote learning. Limited resources existed during the pandemic for autistic people who required paraprofessionals and in-person support services. For many of us who already experience difficulties with social interaction, staying inside for the better part of the last two years has created severe social anxiety. The IACC should identify best practices for supporting autistic people with community integration post-pandemic. Themes Addressed: COVID-19, Disparities, Routine, Services Disruption
Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin Remote service limitations and increased isolation may have resulted in losses in the autistic population. Attention should be given to supports that could help with regaining in areas of impact. Some remote services created during the pandemic proved to be beneficial–virtual assessments, appointments, therapy, etc. These should continue, post-pandemic. Rural and disadvantaged communities have access issues that prevent them from taking advantage of remote/virtual services. Ensuring access to devices and internet services is critical. Themes Addressed: Benefits, Disparities, Mental Health, Services Disruption
Allison Autistic people struggle with change. The pandemic has caused a major disruption of routines and is thus very stressful for many of us. Additionally, quarantines and lockdowns have made getting important services more difficult. Themes Addressed: Routine, Services Disruption
Corrie Whitmer I believe it is important to study not only how the autistic community has been impacted by the pandemic, but also what factors led to that impact. Moreover, I believe that it is valuable to investigate the role of sensory issues in mask refusal/avoidance in autistic people, and to investigate what can be done to mitigate sensory issues related to masking. Themes Addressed: Accommodations, Disparities
Lisa Morgan, Lisa Morgan Consulting LLC Getting back out into the world. Autistic people have found out how much better quality of life they have when they do not have the demands of society bearing down on them. Some autistic people were relaxed for the first time in years when the community had rules and they worked from home. Themes Addressed: Benefits, Routine
Breanna Kelly, Benchmark Human Services There is an opportunity to identify the impact COVID has had on the mental health of autistic individuals and their caregivers. It would also be interesting to assess the impact or lack their of of services and educational supports delivered during COVID. Themes Addressed: Benefits, Mental Health, Services Disruption
Anonymous - Finding out what systems, routines, and creative solutions people with autism have come up with to cope with and adapt to the COVID-19 pandemic - Assessing and removing any new barriers to services and support that the pandemic has created for autistic people Themes Addressed: Benefits, Services Disruption
Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ The pandemic most impacted children with special needs. Those on the autism spectrum experienced uncertainty, sensory issues with masks and vaccines, and regressed. Some children who didn’t have mental health issues pre-COVID do now. Further, the pandemic exacerbated pre-existing mental illness. The AAP has declared a children’s mental health emergency due to the pandemic (see, which was even worse for children with developmental disabilities like autism Children with I/DD (intellectual/developmental disabilities) are more at risk for COVID complications (see Children with ASD and other developmental disabilities are very likely to require compensatory education services to address the lack of provision of IEP and IFSP services. Themes Addressed: Accommodations, Disparities, Mental Health, Loss of Progress, Services Disruption
Alicia Munson, The Arc Minnesota Firm statements are required regarding harmful disinformation linking vaccines to Autism. Autism is genetic, and is not caused by vaccines. Some people in the Autistic community may not know accommodations are available when receiving the vaccine, like a separate room or the ability to get the vaccine in your car. This can lessen anxiety around overstimulation in a doctor’s office, pharmacy, or other vaccine clinic. Themes Addressed: Accommodations, Misinformation
Dr. Andy Shih, Autism Speaks Autism Speaks published a special report about the unmet needs and other challenges of our community during the pandemic. Developed using both administrative (e.g., FAIRHealth) and primary survey data, we recommend the IACC to focus on the following priorities: • Hunger and nutritional insufficiency • Risk for severe illness • Digital services • Access to digital services • Disaster and humanitarian crisis response AND preparedness Themes Addressed: Benefits, COVID-19, Services Disruption
Kim Musheno, Autism Society of America People with IDD are disproportionately impacted by the pandemic. The deaths of many residents within the same facility underscores an inherent weakness of congregate settings. For some, a care facility may be the only residential option, which represents serious problems in cases of staff shortages. The need for additional HCBS and coordinate between agencies is critical. In terms of education, models of instruction that can be effective for students with ASD are needed. Research on alternative instructional delivery models are desperately needed. We know that rapid and effective responses by law enforcement and other first responders can prevent and elopement from becoming a death. The creation of a national curriculum could bring about a groundswell in the availability and quality of training for law enforcement. Law enforcement training is also needed for safe interactions with people with ASD. Vaccine hesitancy has had a major impact on the autism community. Dealing with this complex problem warrants continued and additional funding. The spread of misinformation and disinformation via social media has exacerbated this problem. We are encouraged to see federal funding to address such issues, including awards to major grass-roots autism organizations that can serve as the trusted messengers, including the Autism Society. Themes Addressed: Disparities, Misinformation, Services Disruption
Tiffany Glass Our son has ASD and needs AAC. COVID-19 has dramatically escalated the systemic discrimination and exclusion that he encounters daily, including IDEA and ADA violations, and disproportionate barriers to access to technology. We support CommunicationFirst's position: ""The pandemic reveals widespread discrimination. Disparities must be eliminated in health care and every facet of society driven by systemic racism, ableism, and other oppression. Studies and news reports have highlighted some of the ways in which COVID has disproportionate adverse, sometimes fatal effects on people with disabilities. There are still major gaps in what we know and, thus, what we are doing to address COVID19 impacts on such individuals and their families. This is particularly true for individuals with disabilities who: (1) live with their families; (2) require AAC; (3) are Black, Indigenous, People of Color or face other oppression; (4) live independently with some support; or (5) require HCBS but do not receive it either because they are on a waiting list or are not eligible based on an IQ label or a medical diagnosis rather than their demonstrated needs. The majority of autistic people and those with other disabilities live not in institutional congregate or group settings, but with their families or in other typical residences. We urge a comprehensive assessment be done on the pandemic’s impact on people with the most significant disabilities, their families, and communities. "" Themes Addressed: Disparities, Services Disruption
Gene Bensinger, Parent and Guardian The operational, and in some cases ethical, systems in healthcare and service delivery failed to protect many in our community during the pandemic. For people diagnosed with ASD plus intellectual disability, recent large studies point to sharply elevated COVID-19 related deaths versus similarly aged non disabled peers. Lack of family access in some cases, and too much access by unvaccinated caregivers (in various settings) seem to be important area of focus. Themes Addressed: COVID-19, Services Disruption
Anonymous I would like to highlight some of the changes made in response to COVID-19 that have been helpful and should be kept going forward. 1) Telemedicine reduces barriers to accessing medical services for some of us. 2) Being able to work and learn from home is easier and safer for some of us. It is a workplace/school accomodation that is clearly possible, but is still likely to disappear when we are back to ""normal."" 3) Moving many services online created easier options for autistic people who may have severe difficulty with phone calls or in-person interaction. (Of course, this is only true for those of use who could afford internet access). I would also like to tell the non-autistic members of the IACC that the isolation of lockdown, the difficulty accessing basic services, and the fear and uncertainty that you may have experienced during the pandemic - these are a lot like the daily 'normal' for a disabled person. We live like that all the time, mostly due to poverty and lack of supports, but we don't have to. Themes Addressed: Benefits, Services Disruption
Michael J. Borr, Chair, Advocates for Autism of Massachusetts Pandemic-based disruptions of routines and predictability have been felt acutely by people with ASD and their families. Closures - particularly of dayhab and HCBS programs for adults - during the pandemic has dispersed a workforce that was already drastically underfunded and strained. Over 20 months later, many of these services have not resumed due to acute staffing shortages. Among those waiting the longest for services are those adults with ASD and challenging behaviors who require a higher ratio of staff to ensure safety. Funding and other measures are desperately needed to resolve the workforce crisis. Funding is still needed to cover costs of PPE and incentive pay for direct care workers to remain on shifts when infection occurs. Efforts to educate all students through continuing periods of quarantine and school closures, and to provide compensatory services to students with ASD who could not effectively be taught through distance learning need support. Research into efficacy of telehealth services and other flexibilities deployed during the pandemic to provide access to physical and mental health services is necessary. Expanding access to telehealth services, including behavioral, physical and mental healthcare, could help those with ASD obtain better care during this crisis and beyond. Crisis standards of care implemented during the pandemic should be reexamined to ensure that care is not unfairly denied to those with ASD in future healthcare capacity crises. Themes Addressed: Benefits, Routine, Services Disruption
Autism Science Foundation The IACC Strategic Plan should consider the effects of the COVID-19 pandemic on individuals with autism, including biological, educational, psychological, and psychiatric effects that may impact the immediate and longer-term functioning of people with ASD at all life stages. We urge the IACC Strategic Plan to focus on the effect of the pandemic on the ASD assessment process. In recognition of the severe disruptions to ASD assessments caused by the pandemic, ASF funded a study in 2021 that looked at the diagnostic assessment process considering pandemic related experiences. The study found that while the use of telehealth tools to conduct assessments had certain obvious benefits, the pandemic also exacerbated significant existing inequities in ASD assessment especially for geographically remote families, as well as those in socioeconomically disadvantaged and culturally diverse communities. To increase accessibility and create flexibility to respond to events like the pandemic, we need to develop novel assessment practices that include telehealth along with the proper use of existing assessment tools, and the training of community pediatricians and other clinicians. However, the study emphasized that the diagnosis of ASD will still require the expertise of well-trained clinicians to validate the diagnosis and to individualize needed services and treatment goals. Themes Addressed: Benefits, Services Disruption
American Academy of Pediatrics One of the largest impacts of COVID-19 on children in the autism community was the disruption to early diagnostic systems, as well as access to services, both in the medical system and in pre-school and school settings. Many children had to delay diagnosis as they were not able to get into a provider during the pandemic or were unable to access services through Early Intervention and pre-school and school systems. And for those children who were able to get a diagnosis, many were not able to receive services in an appropriate timeframe. The pandemic further highlighted the increased prevalence of co-occurring mental health conditions in persons with ASD. As more individuals with ASD experienced anxiety and depression, the demand for qualitied outpatient mental health clinicians was further outpaced by the supply. Evaluation of real-world training programs to support the professional development of outpatient mental health clinicians is needed to scale solutions for this growing problem. Individuals with ASD are currently experiencing discrimination when they are turned away from most mental health clinicians because of their autism diagnosis and their lack of self-efficacy in applying their clinical skills to a person with ASD. Similarly, parents/caregivers’ rates of depression and anxiety have increased due to the stresses of the pandemic. Meaningful approaches to reduce barriers to resources for parent/caregiver mental health is critical to maintaining functioning households, meaningful parent/caregiver employment and reducing emergency resources. However, the pandemic has also highlighted certain therapeutic services that worked well through telehealth. For example, Social Thinking groups, feeding therapy for restrictive eating, and support groups for parents of children with ASD are all examples of services that were effectively delivered through telehealth. To ensure that these services can be maintained moving forward, it is important that insurers continue to pay for these telehealth services or those providing such services may not be able to continue offering them. Themes Addressed: Benefits, Mental Health, Services Disruption
Daysi Jimenez Ha causado mucha separacion y cambio drastico. Muchos han perdido rutinas saludables y otros hay salido adelenta durante esta pandemia porque se sienten muy comodos detras de una computadora. Lo que estamos aprendiendo es que es bueno ofrecer opciones para ver que es lo que ellos prefieren. Translation: It has caused much separation and drastic change. Many have lost healthy routines and others have come out ahead during this pandemic because they feel very comfortable behind a computer. What we are learning is that it is good to offer options to see what they prefer. Themes Addressed: Benefits, Routine

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