THE HISTORY

THE HISTORY After my son's and my diagnoses one week apart in late 2000, I went hunting for information like any other parent. I knew nothing. However much of my son's and my new label made sense ("Asperger's" then; and after re-evaluation in 2014, "autism"); this was uncharted territory for me. I was a "starving playwright" by night and a minor-league diplomat by day, and so, even the phrase "developmental disability" felt exotically vague. He was 4. I was 36.

On my search to sponge up the world's knowledge, I saw gaps in the wisdom of "experts," ignorance that attempted to invalidate all those things that had so benefitted me in my decades as an undiagnosed spectrumite. I wondered why people couldn't see the benefits of theatre – not just for the opportunity of creative expression in so many forms, but also for ironing out theory of mind issues (playing a character), or increasing an awareness of what your body was up to in a given moment.

I wondered why people couldn’t believe how sports had helped me. I relayed how the larger benefits were in making me comfortable with competition, ironing out motor skills issues, as well as providing me with a safe environment to work through all those natural, uglier, human feelings… Herein, people could at least see the benefits of my arguments. But they weren’t prepared to “deal with” the emotional fallout that comes with the process of learning how to be a graceful winner or loser. Caregivers were “too tired.”

In the autism world, we've gotten things wrong.

And in behavior strategies, there was only one that had a resounding endorsement: ABA. In quiet pockets around the country, you could find TEACCH – Treatment and Education of Autistic and related Communication in Children – an adaptive approach spearheaded by the wonderful Gary Mesibov. There was RDI (Relationship Development Intervention), Stanley Greenspan’s “Floortime,” the rather comedic “Son Rise” program. SCERTS (Social Communication, Emotional Regulation, and Transactional Support), the first approach that intentionally took ethics into account, was a few years away.

But only ABA was thought of in the general lexicon as standard, proven, and reliable. Even in my community, the people on the spectrum themselves, there was little knowledge. Despite a few brilliant exceptions (a club I did not belong to), spectrumites who hadn’t experienced ABA firsthand were predominantly ignorant of what it entailed.

But only ABA was thought of in the general lexicon as standard, proven, and reliable. Even in my community, the people on the spectrum themselves, there was little knowledge. Despite a few brilliant exceptions (a club I did not belong to), spectrumites who hadn’t experienced ABA firsthand were predominantly ignorant of what it entailed.

Part of the reason why we didn't see ABA's problematic side was that with the separation of "Aspergers" and "autism" you had one community not so exposed to the other. Another reason was that ABA was so mysteriously hard to define. After I made the decision to switch careers into this new world, it became almost impossible for me to get some of the technique's most prominent proponents to give me just a one-paragraph definition of the approach they swore by. And as I'd quickly become the head of the world's largest membership organization for adults on the spectrum (GRASP, the Global and Regional Asperger Syndrome Partnership) it was a personal knowledge gap that annoyed, but didn't overwhelm me.

A third reason was that aforementioned point that we didn't have

the massive number of adults on the spectrum telling us about their childhood experiences with ABA.1,2 Now we do.

And in what will hopefully not resonate as a confessional (as this "IT BECAME ALMOST IMPOSSIBLE FOR ME TO GET SOME OF THE ABA'S MOST PROMINENT PROPONENTS TO GIVE ME JUST A ONE-PARAGRAPH DEFINITION OF THE may anger younger, fellow spectrumfolk)… the final reason was that some of those ABA proponents were the best neurotypical allies people on the spectrum had back then. We were all immensely aided by organizations like Long Island's AHANY (now a part of AANE, the Autism Asperger Network of New England), who were heavily associated with ABA-centered organizations.

Peter Gerhardt, now the head of the EPIC School, was one of really only three people in the entire country saying "We have to start listening to people on the spectrum!" (the others being MAAP's Sue Moreno, and AHANY's Pat Schissel). Gerhardt, also one of GRASP's first Board members, wrote the Foreword for my first book, and is a genuinely gorgeous guy all over his insides. Deb Thivierge, head of the ABA-centered ELIJAH School, secured the restaurant for and hosted GRASP's first four annual benefits. She too, shouted "listen to people on the spectrum" from the figurative rooftops. I'm not praising them because I "owe" them. They were for real, our best advocates. And they certainly weren't hitting kids.

Were all ABA leaders our friends? Did nobody in the ABA hierarchy resent those "high-functioning" adults for getting some of the autism spotlight? Of course not. I'm citing the heroes within, not everyone.

“IT BECAME ALMOST IMPOSSIBLE FOR ME TO GET SOME OF THE ABA’S MOST PROMINENT PROPONENTS TO GIVE ME JUST A ONE-PARAGRAPH DEFINITION OF THE APPROACH THEY SWORE BY.”

But stuff was brewing. We all began examining everything deeper when both the vaccine controversy and Autism Speaks entered the field. Opportunists like Andrew Wakefield had existed prior to Jenny McCarthy, and parents had sick encouragers of anger and resentment like Lenny Shaefer, he of “the Schaefer report,” long before Autism Speaks’ ugly entrance. But until 2005, my first five years in the field were pretty peaceful. Outside of universal disdain for the Judge Rothenberg Center (where aides with only high school diplomas were allowed to apply electric shocks to unsuspecting residents whenever they wanted),3 everybody kind of got along.

Luckily, those mid-2000s also gave us luminaries like co-SCERTS author, Barry Prizant, author also of the iconic, must-read, Uniquely Human. Furthermore, a second organization run by, as well as for adults on the spectrum, ASAN (the Autistic Self-Advocacy Network) emerged two years after GRASP. Combined, these and other forces looked at ABA with an eye towards measuring success not by “appropriate behaviors,” but instead through the lens of the autistic person’s mental health.

My personal "ah-ha" moment came early on in my 10 years, moonlighting for the New York City Public Schools' Special Education District 75. I had various groups of spectrum teens who were pretty verbal, but whom would need some level of assistance to live independently throughout their lives. And in our sessions – in-class, or out in the world – we tried to examine pretty much anything in life like work, dating, etc, but with an eye towards how our spectrum lens might make us see each subject matter differently.

At one session, I said to them "You guys have been fabulous this semester, thank you. You've done everything I asked, so this week I was thinking… what would y'all like to do? Name it, and I'll try to make it happen."