Minus a working federal autism committee, advocates pushed for COVID-era change

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Over the last year, advocates and researchers have provided support and guidance for people in the autistic community, from recommending that people with disabilities receive high priority for the COVID-19 vaccine because of underlying health conditions, to researching the devastating impact of the pandemic on those on the spectrum. But a committee whose role is to gather input from the public on the needs of the autism community has been noticeably absent during this time.

The Interagency Autism Coordinating Committee provides advice and recommendations to the U.S. secretary of Health and Human Services about how federal agencies can best serve the needs of those with autism. The IACC, which typically meets at least three times a year, has not had a full meeting since July 2019.

“I think that it is only in the last month that anybody sort of lifted their head up and said, Hey, wait a second, what happened to this group? And why isn’t it meeting?” said David Mandell, a psychiatric epidemiologist and mental health services researcher who is a former member of the IACC. “This is an advisory body with no decision-making authority and no meaningful budget to make change.”

According to Susan Daniels, director of the National Institute of Mental Health’s Office of Autism Research Coordination, the reason for the hiatus is because the new members are currently in the process of being appointed by Health and Human Services Secretary Xavier Beccera, who was confirmed by the Senate Thursday.

Originally, Daniels said, it was anticipated that the new committee would be appointed in late 2020. But there were some delays in the process because of the pandemic and the change of presidential administrations.

“The process is now in its final stages, and we expect the new committee to be announced and resume meeting in the summer of 2021,” she said.

Mandell said the committee did a lot of groundbreaking work in the past and could have played an important role in bringing certain issues to the forefront this time around.

Some of the work Mandell was referring to dates back to 2010, after a mother addressed the IACC stating that autism is “as common as Somali tea” in the Somali community in Minneapolis, affecting multiple children in a single family. Quickly afterward, the IACC investigated the prevalence of autism spectrum disorder in the Somali community. The panel also created a subcommittee to analyze elopement — autism-related wandering common for children with ASD — after a presentation by the National Autism Association.

“The urgency in vaccinating caregivers of autistic people or autistic people themselves, who may have a lot of challenges and wearing a mask, for example, all of those would be issues that the IACC could bring to the attention of the relevant federal bodies in a way that I don’t think they have currently,” Mandell said.

The vaccine rollout, in particular, had been frustrating for many autistic people and their caregivers. Philadelphia City Councilmember Derek Green said it has been a difficult process to get his 20-year-old son Julian vaccinated. Green argued that on the vaccine eligibility list, autism and intellectual disability were under neither the city’s Phase 1A nor Phase 1B.

On Friday, the city changed Phase 1B eligibility to include people with intellectual disabilities.

But that wasn’t the only concern Green had. After touring a FEMA vaccination site, he noticed some things that could be challenging for people on the spectrum, such as the possibility of waiting in line for 30 minutes to an hour in a large, crowded, noisy space. After raising awareness about those issues, Green said, the site has taken more of a progressive approach to make it easier for those on the spectrum to get vaccinated quickly.

Green chairs the council’s Committee on People with Special Needs and Disabilities and said the committee is working on making the Americans with Disabilities Act more inclusive to people with autism.

“I think having this committee in operation will be helpful to make sure that the ADA, which does incorporate people that have nonphysical differences, does a greater push to make sure that when we’re talking about being ADA-compliant, we’re doing it for people with all types of disabilities,” he said.

Wendy Ross, director at Jefferson’s Center for Autism & Neurodiversity, worked alongside Green to advise Philadelphia officials to include people with intellectual disabilities and ASD in the vaccine eligibility. According to a recent study at Jefferson, 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.

But underlying physical health conditions aren’t the only issue, according to Ross — other mental health issues are prevalent as well, now that we are a year into the pandemic and the resulting social isolation.

“If you have a disability and especially autism or intellectual disability, you already have less access to the community,” Ross said. “There’s a higher likelihood of a comorbidity like anxiety or depression, which we know is already being exacerbated by people being stuck at home, people not being able to understand their change in routine.”

State Rep. Jessica Benham, an Allegheny County Democrat who is the first openly LGBT woman and autistic person elected to the General Assembly, said COVID has just exacerbated the problems that already existed for those with disabilities. She argued that Pennsylvania’s crisis standard of care was discriminatory against people with disabilities and would have prevented certain people from being able to receive the care that they might otherwise have been entitled to in a situation of medical rationing.

“I also think how some of my colleagues dismissed the death of people from COVID-19 as maybe less than important because of preexisting conditions,” Benham said. “And as someone who has a disability and has a preexisting condition, I found that incredibly offensive, all of our lives are valuable and important and to dismiss anyone death simply because they had a disability is unacceptable.”

Even though the IACC did not meet over the past year, Benham said progress is definitely still being made on behalf of people with disabilities.

“I think there’s lots of advocacy work that exists outside of that, I mean, certainly on the state level, which is where I’m at, that is the case,” Benham said. “And now we’re seeing a new prioritization of services for folks with developmental and intellectual disabilities and our national legislature, and I don’t want to discount that.”

Mandell envisions the IACC coming back stronger than before.

“My hope is that at this time when we’re examining the role of the IACC, what it could accomplish, and how it can best serve autistic people and the people who care for them, that we will rethink so we won’t just try and go back to business as usual,” Mandell said. “We will rethink the sort of authority and autonomy that the IACC has and think about how it could be the most effective organization that it could possibly be.”