Author’s disclaimer: This is the first of a two-part post about autism and autism treatment as it relates to my film Love and Communication. I’ve written this mainly for parents/family of people with autism and autism professionals. If you are not one of these people, please don't take this the wrong way. I appreciate you being here, and you are welcome to keep reading. I even put a glossary of terms for you at the bottom. Just know that I won’t be bending over backwards to clarify things for you, and that the tone may not be consistently inspirational and uplifting in the way that much autism content in popular culture seems to be.
Why I’m Writing This
If you're reading this, you might know I’ve just released a trailer for my forthcoming film Love and Communication, which is about a couple's experience shortly after their son is diagnosed with autism. In the trailer, one of the characters has some harsh words for ABA. Taken out of context, it could seem like the film is anti-ABA. So the initial purpose of writing this is to clarify that neither the film, nor me, are anti-ABA. My son Jimmy has been getting ABA services for 14 years. I feel that well-designed ABA programs are the gold standard for autism treatment. And I have nothing but respect for ABA professionals, people who have taken their miraculous desire to help people with special needs, and combined it with intensive training to do so in as effectively as possible. I am pro-ABA.
I could end there, but of course once you get going on a topic like this, there’s a whole lot more to say. So this post (which has become two posts) gets into detail about ABA and other therapies to treat autism, both as I've experienced them in real life and how I've portrayed them in my film.
Damaged Goods
I sometimes think about parents of people with autism as being fundamentally damaged. It's like a sick joke, but it comes back from time to time. And I think it comes from the wondering of why. Why us, why me, why Jimmy.
We all know the science says autism is genetic. Thanks, science, that's helpful. When you think about it, that means that there is this thing, this autism predilection within my DNA. So this was inside me all along, and is inside me a little all the time.
And then there's the just-as-dark way of looking at this that having a child with autism damages you somehow. The process of fighting for services, worrying about treatments and concern for the future fucks you up somehow. Makes you feel unfairly treated in a cosmic way, makes you feel separated from (and jealous of) people who aren't going through this, makes you see the world more darkly.
I don't feel this all the time, it comes on and off based on my mood. And I think maybe it's a counterpoint to this idea, which I feel like you see in popular culture, that parents of kids with special needs are somehow predisposed to handle their situation. People like to feel inspired by people with special needs and their families. You see more autism stories on TV and movies and online, which is great. But you usually don't see the severe cases, and you don't see parents totally incapable of handling the shit they're going through. That shit's a bummer.
So when people (who I love and appreciate) say things like: “You guys are amazing, I don’t know how you do it!”, the ingrate in me wants to say: “no, we’re not amazing and we do it because we don't have any choice.”
In real life I know these inspirational autism parents are out there (we know some of them) and I know my "damaged" theory is a kind of self-pity. But when I started telling an autism story, first a play, now a movie, the one that came out of me was decidedly not inspirational. It's a story of parents who make some really bad decisions.
It's not my story, and it's certainly not my wife's story. It's just something that came out of my (possibly slightly damaged) brain.
Our Story in 3 Paragraphs
Now that that's out of the way, here's a very quick version of our story, from my POV. Jimmy was two and a half when he was diagnosed, although my wife had begun ringing alarm bells before he was two. Our pediatrician at the time was of the philosophy that if a child can make any eye contact than he/she doesn’t have autism. So it took a while to get the diagnosis. When it finally came, it was more of a relief. We needed the diagnosis to get the services. We just had what we already knew on a piece of paper signed by a doctor.
We read everything and talked to as man people as we could talk to, as you do. And all that lead us to the conclusion that Jimmy's best chance was to get an overwhelming amount of hours of ABA services. 30-40 hours a week. Right now. It felt like every week that went by when he wasn’t getting that level of services was hurting his chances for a better future.
When he was three the school district we were in (Jersey City) recommended their own “autism program.” Which consisted of 1 teacher and two aides for 8 kids of varying levels of ability. We pulled him out after two weeks. If you've seen the trailer for the movie, at about 48 seconds you'll see the parents approaching a school, next to an iron link fence. That's the actual school Jimmy went to there for two weeks. We sued Jersey City to change Jimmy's IEP while paying out of pocket for him to be in a private school. Burned through a lot of money. Gave up and moved (from a house we bought 5 months earlier) and found a district that agreed to send him to a very good ABA-based program where he still goes 14 years later (!).
ABA and Autism Parents: It's Complicated
My wife and I were pretty much on the same page that we wanted to find an ABA program from the outset. If you want a rigorous, science-based approach to treating your child, it’s the only game in town. I would still tell that to any parents who get a diagnosis.
That said, ABA can sometimes be hard to love.
The obsession with data, while necessary, can sometimes sometimes seem to be overboard. (Do we really need the decimal when we learn Jimmy’s is drooling 18.3 percent more this week than last week?). And at least at the beginning, the visuals of instructors working with your child with a data sheet on a clipboard can make ABA programs feel impersonal. You can think to yourself sometimes, “why are we treating my kid like a science experiment?”
So we looked at other options. Never in place of, but in addition to ABA. We ended up trying a therapy called RDI. We were assigned a very nice consultant named Tina, who would advise us on how we should be interacting with Jimmy. We would send her videos and she would analyze them. It felt like a different kind of science experiment (but one that cost a lot of money). It wasn't a scam, but it didn't feel right for us, and eventually we broke it off with Tina and RDI.
These don't feel like small decisions. We were desperate to find something that might work. And if people you trust say you should try something, and it doesn't seem harmful or dangerous, you want to try it. But you can start to lose confidence in your own judgment. Maybe we're not giving this enough time. Maybe we're giving this too much time. Who fucking knows.
Thankfully, my wife and I were more or less on the same page about most of this stuff. But in my story, the parents start to go hard in two different directions and it drives a wedge between them. In my next, (and I promise shorter) post, I’ll get more into how film reflects my experience, and how our perspective has changed as Jimmy (and us) have gotten older.
FEEDBACK: Thus far I haven’t tried to get comments on my blog, but if anyone feels comfortable sharing their perspective about their experiences finding the right therapy for their child, or ABA (or other) professionals in the field, would love to hear.
GLOSSARY
ABA Applied Behavioral Analysis: The primary science-based treatment for autism. Based on the principles of behaviorism as developed by Skinner. Tries to reinforce (AKA reward) positive actions to shape behaviors. There's a formal set of training to be an ABA instructor, the top of which being a BCBA (it's hard). Our son Jimmy has been part of school-based and home-based ABA programs since he was 3.
RDI/Floortime/SonRise: These are alternative therapies to ABA. They are distinct (and their adherents might not like me lumping them together) but my understanding is they mostly focus on building a stronger relationship with your child.
IEP: Individualized Education Program: This is a legal document that a school district develops to define a plan to educate your child with special needs.