often love you. And love and trust are two very different animals.
All prior research done without supervision by autistics is even being talked about as tainted, and perhaps getting "cancelled," like when the crooked cop is caught, and all his prior arrests convicted on evidence he provided have to be freed. And the world need not be scared of this from an employment-pool standpoint because nowadays there are spectrum therapists, and spectrum researchers, consultants, and coaches. Having the diagnosis is not a small contribution to our résumé. It's a game-changer for how effective we will be.
(One sidebar about coaches of any kind, though? I'm a skeptic. I've always believed that any schlub can get a degree, and with so many uninformed and bogus certification programs out there, my cynicism easily extends to coaches. Peer Mentors get evaluated by whether they've "walked the walk" in their lives. But coaches can have employment and relationship histories that are absolute trainwrecks, and yet can pitch themselves as authoritative successes because of their certification.)
I also hate to pull out the most shamelessly blatant example, but since it holds up under scrutiny… Can you imagine a white "expert" on African-American studies getting away with saying they know more about the experiences of people of African descent than the people of African descent? Especially under the auspices of "Well, black people are too traumatized to speak truthfully of their own experience."
Furthermore, look at almost any autism conference, and look at the post-conference, audience feedback forms. Guaranteed: audiences report learning more from the speaker or panelists on the spectrum than the neurotypical keynote. And usually, the speaking fees are four figures for the keynote and two figures for the panelist. Where's the disconnect?
TWO CONCLUSIONS
The aforementioned disconnect may be that we're looking only through the lens of our humanity, our trauma, and our decreasing educational standards. We're not looking enough at the money. The controversy over ABA may have so much more to do with ABA's reluctance to admit its historical horrors because were they to figuratively apologize to the world, they'd then arguably have to admit that other strategies deserve a share of the funding – dollars that ABA still has such a large monopoly over.
Maintaining eye contact was once brutally driven into people during ABA sessions, then it was merely encouraged. Now, many ABA clinicians consider maintaining eye contact to be of no concern. Why? Because the rest of the world changed and didn't need eye contact to feel "respected."
Stims were once brutally driven out of people during ABA sessions, then discouraged. Now, many ABA practitioners allow them. Why did this change? Because the rest of the world changed: It learned that stims are more often an expression of pleasure, and because the rest of the world stopped assuming that flapping hands revealed a potential mass murderer. All behavioral strategies change with the times
Would Lovaas even recognize ABA today?
Making the rest of the world more inclusive will always be the better choice over forcing assimilation. If any assimilation is to occur, it must be within the context of learning a new language rather than "Your way of doing things is wrong. Our way is right."
Early on in my career, I learned to respond to embittered folks who told me I "couldn't have autism" by responding, "Just because I learned fluent French doesn't make me French."
I had noticeable eye contact issues all my life—until I was conducting my undergraduate thesis that concerned the Holocaust. As a non-Jewish, 21-year-old having the gall to interview survivors who were old enough to be my grandparents, I felt incredibly inadequate, and undeserving of their willingness to unearth such horrible memories for my benefit. So in my guilt and commitment, I had to "ride the wave" of their narratives with them. That meant eye contact. I still remember how incredibly painful it was to my head. It affected my vision. I felt physically damaged for hours after each interview was done.
But it was my choice to put myself through that.
Now imagine a much younger child, being put through that without their consent… often for 40 hours a week; over years of their lives. Many will tell you that's the price that has to be paid for someone to stop banging their head against cement. But how many of us spectrumfolk really demand that tough a choice? And can we really say that the person isn't traumatized for life? Even if the individual was more than significantly-challenged, was it worth it?
Be it the "cure" debate, or the vaccine controversy, our humanist side of autism has really never lost a battle, and we won't lose this one. The only question is "when?" And I think an eye towards changing the funding structure is what will hasten the journey rather than personal attacks through Facebook. Then, maybe LinkedIn recruiters will go hot and heavy after SCERTS practitioners and Peer Mentors just as much you see them going after BCBA candidates.
Our prevalence as spectrumfolk is now at 1 in 44. The market – the need for individuals, families, schools and businesses to get effective, humane educational assistance – keeps getting larger, and will continue to until all this stuff is just thought of as natural extensions of the human experience.•
ABOUT THE AUTHOR:
Michael John Carley is the Founder of GRASP, a school consultant, and the author of Asperger's From the Inside-Out (Penguin/Perigee 2008), Unemployed on the Autism Spectrum (Jessica Kingsley Publishers 2016), the upcoming Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum… and Beyond!, and the column, "Autism Without Fear," which has seen exposure in Exceptional Parent Magazine, but also Sinkhole, and that for four years ran with the Huffington Post. Currently he is leading the "Connections" program at New York University for their worldwide autistic students, and he also has a private Peer Mentoring practice. For more information on Michael John, or to subscribe to his free newsletter, you can go to michaeljohncarley.com.
References
- autisticscienceperson.com/why-aba-therapy-is-harmful-to-autistic-people/#where-to-start-for- support
- neuroclastic.com/invisible-abuse-aba-and-the-things-only-autistic-people-can-see
- nbcnews.com/health/health-care/decades-long-fight-over-electric-shock-treatment-led- fda-ban-n1265546
- thenation.com/article/society/private-equity-autism-aba
- youtube.com/watch?v=7pN6ydLE4EQ
- emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html
- pubmed.ncbi.nlm.nih.gov/30083306