My Comment for The Phantom Menace IACC Meeting

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: 

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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

The Telepathy Tapes, Part Deux

I wrote about The Telepathy Tapes podcast and the BS of its "autistic non-speaking mind readers" at Thinking Person's Guide to Autism earlier this week, because I hadn't seen anyone yet divide out how the telepathy part is absurd, but that we need to keep the faith with autistic non-speakers' communication—even when they get involved with questionable causes like this series. 

I kept that take brief and professional because TPGA is a professional site. This page, however, is personal, and is a space where I can process at you about a dick move made by some of the podcast's critics. But before we go there I also want to draw out two good points made by TPGA commenters on our Facebook Page on that first article of mine:

Autistic academic TC Waisman noted that the way The Telepathy Tapes characterizes non-speaking autistics as angelic messengers of love and peace,

"Smacks of the "magical negro" character. Note: I am both Autistic & Black. The magical negro character (in books, movies, tv shows etc) is a mystical character whose only task is to assist the protagonist on their hero's journey. Sound familiar?"

In the same thread, autistic writer Emily Paige Ballou commented on the explanation for non-autistics thinking the autistic non-speakers are reading their minds:

"One possibility I think hasn't been explored enough is that the autistic people in the Telepathy Tapes are reporting something real, just not quite what they think... I have a suspicion that something like a very intense synesthesia may be at play. That if someone is sensitive enough to non-verbal communication, body language, and emotional signals, it may well feel like they're "hearing" what someone else is thinking or feeling. There's just nothing supernatural about it. (And, obviously, it doesn't obviate the need for real AAC.)"

But what I want to focus on here is the people who dismissed the podcast not by focusing on its supernatural gibberish, but because they question the autistic subjects' supported communication or AAC (augmentative and alternative communication), and whether they are "really communicating." This is the aforementioned dick move.

The problem is that non-non-speakers too often go overboard in trying to "protect" non-speakers who use supported communication methods like Spelling, Letterboarding, or Facilitated Communication (FC), as when The American Speech-Language-Hearing Association (ASHA), took the position that supported communication methods are not legitimate. The Autistic Self Advocacy Network responded with a statement that, 

"Attempting to wholesale deny the authenticity of a form of communication, regardless of the evidence available with respect to a specific individual, and then assert that unrelated interventions are 'alternatives,' is unjust and logically inconsistent."

The core argument against supported communications is the "message passing test," in which some older studies claim it was the non-speaker's facilitator who was doing the communicating, and not the non-speaker themselves. But recent research argues that, 

"Although message passing studies confirm that influence is possible, they do not show that all text produced by all nonspeaking autistic people who are learning to type with assistance is the result of influence. In fact, evidence using other methods directly challenges this conclusion." 

Those who continue to categorically deny supported communication's legitimacy are doing so from a position of defiance, rather than of evidence. Contemporary research indicates that,

"Alongside lived experience testimonies, robust and peer-reviewed research exists to challenge a categorical anti-FC position, although, strikingly, the presence of such research has rarely been acknowledged by those who adhere to an anti-FC stance."

The same article continues that,

"FC research should be reconsidered and reconducted using current best practice autism research approaches, including coproduction and a presumption of autistic communication competence, to assess its validity as a potential AAC method for autistic individuals."

I want to give a special side eye to the supposedly pro-communication advocates who refuse to give up their “protection” stance regarding non-speakers while actually working against their interests—like the uncharitable person who bought the website Facilitated Communication dot org (not linking, do not recommend) and turned it into an anti-FC nexus, and who is part of an anti-neurodiversity parent faction that unceasingly claims all supported AAC methods are fake, and which is therefore ironically complicit in turning parents and caregivers away from methods that might help their non-speaking loved ones live better lives.

I'm not completely content with the state of supported communication. Many advocates of Spelling or a similar technique called Rapid Prompting Method (RPM) go overboard with their advocacy, declaring their chosen method The Only Way—despite the fact that there are different kinds of AAC, addressing different reasons for communication disabilities, and that not everyone who needs AAC needs such intensive support. In fact, if supported AAC is an inappropriate method for a non-speaker, then making them use it may actually prevent them from communicating effectively. 

There's also the issue that some practitioners of supported AAC methods are ... very ABA-like in how they drill their communicators. Needing a lot of practice and support to be able to do something and being compelled to do something are two different modes, and those who support non-speakers' supported AAC need to be very careful about not squashing those AAC users' autonomy.

So I will allow, as the researchers I've cited have allowed, that influence is possible during supported communication. Of course it is. But too many people are using that possibility to deny supported AAC users without exception. And that is hurting not only the people who need AAC and aren't getting it, but the many AAC users who have worked and still work so hard to be able to communicate with the rest of us fellow humans in ways that we can understand, and who rarely experience reciprocity, or respectful patience. Non-speaking AAC users have enough barriers to contend with, without self-styled do-gooders getting in their way.

I leave you with messages from autistic non-speakers, about their own wishes and desires. This short film, Listen from Communication First, has been available for five years. I recommend you share it as a worthier option, if and when people ask for your opinion on The Telepathy Tapes.