Fantasy and Neglect of Profound Autism
Pseudoscience Fills the Void Left by Academia
I discovered Betsy Hicks Russ (@Betsyonthego) maybe two years ago on Instagram. I love seeing her posts because she's well spoken, experienced, and always has a positive attitude. She feels like a mom to a nonverbal autistic adult that I can really look up to. No matter how difficult things feel now and how much worry I have about the future, she shows that life may look different but it can still be pretty great. Largely I still feel that way about her when I watch the videos of her adult son Joey, clad in his multiple sweatshirts and life preserver with one of his arms characteristically stuck inside, at a furniture store trying out chairs for his new apartment. Joey is nonverbal with the kind of autism that one needs only see for a moment to know it. Betsy and Joey enjoy long bike rides and share their journeys together. Betsy offers helpful advice and sells an orange vest that reads “autistic be kind” which I have for my nonverbal autistic daughter. It makes public outings more comfortable when people are cognizant of our situation and can see that we’re all trying our best.
So it was a bit disheartening to see that Joey had started training with a “facilitator” in order to learn to communicate via a letterboard held by someone else (the facilitator). I was disheartened because I quickly realized this was Facilitated Communication going by a new name - Spell 2 Communicate. Because I had read a book or two on the history of autism (In A Different Key by Caren Zucker and John Donvan in particular) I knew about the 1990’s Facilitated Communication scandals that included the double blinded study of facilitator Janyce Boynton and Betsy Wheaton which showed the practice to be bunk after the parents were accused of sexually abusing Ms. Wheaton through Ms. Boynton. Then there was the professor who sexually abused a nonverbal man, obtaining “consent” through Facilitated Communication. And the time a woman killed her son thinking that’s what he wanted through Facilitated Communication.
But, it gets worse. Now we are meant to believe, not unlike medieval times when “fools” were believed to have direct contact with God, that nonverbal autistic people can read minds. “The Telepathy Tapes” (ranked 3rd most popular podcast in the US) is making the claim that nonverbal autistic people can read minds and savants who have incredible talents are doing it all through telepathy. And Betsy has chosen to drink that kool aid. She tells us that we need to raise ourselves to Joey’s frequency and realize that he is of a higher evolution. That we just don’t understand because we are of this world and he is of another, higher and better one. A world we can only hope to get to one day.
So although I do not blame Betsy for having her fantasies, it seems important to point out that that is exactly what they are. As others have written about many times, incredible harm can come from believing the unbelievable without the evidence. Every single parent wants to hear their child tell them that they love them, we long for it daily. If you put a letterboard in your nonverbal childs hand and seemingly by magic, “hear” those precious words that you’ve been longing to hear for years on end, maybe that should cause one to take pause. It should also give us pause that when an autistic savant shows an incredible aptitude in math or music, The Telepathy Tapes would have us believe that they don’t actually possess that talent. Rather they’re reading the mind of someone else who happens to be in the room, thereby taking away one talent and replacing it with one that’s shown to be false.
In the words of Hitchens, What can be asserted without evidence can also be dismissed without evidence. To this date, after the 1992 double blind study which rendered Ms. Boynton (the facilitator to Betsy Wheaton) an ardent opponent of Facilitated Communication, not another double blind study on Facilitated Communication has been done. Why? because facilitators refuse to participate in studies. That should tell you something.
If not Betsy, who do I blame for this? I see it as a giant failure of academia to take an interest in studying and developing help for nonverbal and profoundly autistic people. “Even though nonverbal or minimally verbal people who have autism spectrum disorder make up between 25 and 30 percent of the total autistic population, almost no studies have been done focusing on this group and their particular needs.” per the Children’s Hospital of Philadelphia. In the latest edition of the Journal of Autism and Developmental Disorders, not one abstract mentions Levels 1, 2 or 3. None of the abstracts have the terms “nonverbal” or “minimally verbal”. Because I don’t have access to the journal I can’t say for certain this is representative of the verbiage inside the journal. What I feel I can say is, if researchers aren’t using Levels or referencing the verbal abilities of autistic individuals in their studies, then they likely aren't finding solutions to problems for people with the most debilitating forms of autism.
Given the widening of criteria in 2013, the ballooning rates of autism in the US, the belief that autism is an identity, and the lack of research in profound autism, my hunch is that autism researchers are more than happy to study the most accessible people with the label autism ascribed to them. The chosen subjects will be more likely to be verbal, independent, and intellectually within age range. In other words, they would have almost nothing in common with children like mine. These researchers can publish their research under the guise of fulfilling the desperate need for autism research while simultaneously telling us nothing about and offering no help for profound and nonverbal autism.
In the absence of serious scientific inquiry and a recognition that nonverbal and profound autism are not identities but critical disorders, people will look for magic and indulge in their fantasies. I don’t blame Betsy, I blame academia.
@Betsyonthego
Betsy Hicks Russ
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"The Telepathy Tapes" is Taking America by Storm. But it Has its Roots in Old Autism Controversies.
Zaid Jilani
-A must read to understand “The Telepathy Tapes”
-If you’d rather listen to a podcast about The Telepathy Tapes, I suggest:
Facilitated Communication—what harm it can do: Confessions of a former facilitator Janyce Boynton
As a practicing SLP I think there’s a boatload of decent evidence for real independent AAC devices being independently used with low verbal non verbal children. I mean it’s kind of the gold standard. Obviously there’s exceptions but the conflation of facilitated communication with independent aac is the bane of my existence. Children need to be able to request or comment with multiple communication partners or else something is wrong. Also even highly verbal individuals with autism struggle with verbalizing love, so the fact that’s these kids first words is highly suspect…