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| Leo riding the Disneyland Monorail |
I rarely participate in committees or agency meetings unless I can do so remotely, so I've always appreciated how the IACC, or Interagency Autism Coordinating Committee—which advises and directs autism research funding for the U.S. Department of Health and Human Services—lets people submit comments by email. These comments then become part of the public record, and sometimes the person who submits even gets an invitation to record a video version (ahem). I have submitted many comments over the years.
While the IACC has never been perfect, under the previous administration it was inching closer to meaningful and diverse autistic representation, with seven openly autistic members, including AAC users and people with intellectual disabilities and several autistic parents.
The current IACC, however, is not the IACC of yore. Thanks to beyond-parody MAHA ghoul and HHS Secretary RFK the Lesser, it is larded with resurrected anti-vaxxers and autism pseudoscience grifters. And while its inclusion of three non-speaking autistic members sets a precedent, all of them are unfortunately affiliated with anti-vaxxers or bogus cures.
Still, I thought it was worth submitting a comment for the meeting set for March 19. To be on the record and all. I even submitted it a couple of days before the March 5th deadline, which is a minor miracle for this tired old horse.
And then they canceled the meeting. After the comment deadline. Because this administration runs to the soundtrack of the Benny Hill theme song. Because flakey flakes are gonna flake.
Since we don't know when or if the official IACC meeting will happen, and since I have very little faith in the alternative I-ACC led by slippery anti-neurodiversity grievance parent Alison Singer, I'm setting my IACC comment on the record here. My list of concerns for where autism research should be directed is not comprehensive, because to be considered for an oral comment it has to be brief.
But if the government truly wants to invest in ways to help autistic people and their families—and not in the cures and quackery flogged by IACC members, or the hateful "profound autism" parent agenda of the I-ACC, then this is where to start:
My name is Shannon Rosa. I am the parent of an autistic adult who requires full-time care, and my husband and I also have two other neurodivergent adult children. I am also the senior editor of Thinking Person’s Guide to Autism, an autism information nexus, where we have been tracking autism research closely since 2010.
The best way the IACC can help my adult son, his peers, and our community’s families is to endorse research in sufficient and appropriate services, which are crucial in determining autistic quality of life. Our autistic loved ones and families are here now. We need more supports now.
I have a long list
of areas that the IACC can focus on, but the top priorities
include:
Respite. Our autistic loved ones and families need more respite,
and better paid
respite workers. Not only so that parents and caregivers can work
and take care
of themselves, but also so that autistic children and adults get
needed breaks,
too. This includes in-home supports, and also after-school
options.
Communication and AAC (Augmentative and Alternative
Communication). We need more
investment in communication options for autistic people who can’t
rely on
speech to communicate. Right now communication supports and AAC
access are
spotty, and often limited to families who can afford equipment and
instruction—leaving
far too many autistic people who could benefit from AAC without a
voice. We
also need investment in more AAC options, to account for the
varying reasons
why autistic people struggle to communicate.
Sensory Environments. Autistic people have intensive and varied
sensory
experiences. We know that environments like classrooms and medical
offices that
are overwhelming—noisy, bright, smelly—can make it difficult or
impossible for
autistic people to function. Their resulting distress can then get
misinterpreted as “autistic behaviors.” Changing environments to
be sensory-friendly
can be straightforward to address—especially if we look to
participatory research
on autistic sensory priorities—but as of now we do not have a game
plan for widespread
implementation of sensory-friendly spaces.
Health care. Oftentimes autistic people struggle to access
appropriate or useful health
care. Not only because of sensory-unfriendly environments, but
because too many
medical professionals are not trained in how to support autistic
patients. We
need research that leads to more medical staff understanding on
how autistic
people can have atypical presentations (hyper- or
hypo-sensitivity, paradoxical
medication reactions, situational mutism, echolalia, etc.), and
how to respond
and adjust appropriately so that autistic patients’ health can be
safeguarded.
I hope we can all agree that the
autistic people in our lives deserve a good present and a bright
future, and
that we should do everything we can to help them thrive. I thank
you for listening
to my concerns.
Sincerely,
Shannon Rosa
