After "Early" and "Intensive": The Next Step

We are making changes in this household.

My son’s time with formal ABA therapy will come to an end soon. At this point, I have no intention to continue it on a professional level. He is scheduled to “graduate” from his school in August.

No decision has been made lightly, despite my moments of rebellion where I insist it’s time to “wing it” already. Oh, just pull the dang band aid off, I think. Throw him in a regular education program already. Sink or swim! Now now now!

I go swinging from both extremes (as usual). Reading blogs by parents who obviously have different perspectives, where they are working on things I haven’t even bothered to worry about. At one point I pull out the ABA Bible, Behavioral Intervention for Young Children with Autism, and I flip through all the programs my son hasn’t mastered.

But I’ve made up my mind about some things. I found him a good preschool. Good on many levels. Some of those levels have less to do with what I think my son needs and more about what would be awesomely convenient for our family. And you know what? I think we’re ready for that type of balance.

I talked to the Director at his school. It really didn’t surprise me that she was supportive—I was surprised she insisted we “fine tune” things with my son, but it doesn’t make me nervous. I feel we are absolutely on the same page.

So where are we at? We have cut his hours back at his formal ABA school, and I’ve already enrolled him at a regular education preschool. He will do two days a week at each school for the rest of the summer. I figure it’s a good idea to see how well he takes to a regular education environment with his typical peers before he leaves his other school behind. NOT that I have any doubt that his ABA school would work with us past his graduation if the situation warranted it, but I LOVE that we can simultaneously  get some practice with his typical peers and address any issues that pop up in real life through therapy.

I’ve done a lot of soul searching about what the end of formal ABA therapy means for our family. It is very easy to say “Okay, we’ll make reasonable progress, and then continue with ABA techniques at home.” It’s another thing to get a real grasp on what “reasonable enough progress” means in terms of ending professional, INTENSIVE services that are obviously helpful. But if he is school ready, I want to push him to do well independently. 

My son has spent two years building enough skills to successfully learn and behave in a school environment. He has pretty effective social and communication skills, but most of his peers are starting to reach a level of complexity he hasn't arrived at yet. I do not think we are done with all professional treatment right now, but we are moving on from the Early Intensive Intervention stage.

The Recovery Controversy

It should be established that more than anything, “recovery” in regards to autism is a pretty loaded term.

Already, “recovery” can refer to many different things. It can mean “cure.” It can mean “the process of healing.” It can mean continuing towards a place of healing. Certainly, on its own, it refers to “journeys” as much as “outcomes” if you get my drift.

But, enter Autism— an obviously real neurological condition with some genetic and other biological markers, but, for the most part, is completely diagnosed based on behaviors. And as the spectrum has widened considerably over the last few generations, it has become clear that a young person exhibiting autistic behaviors may stop exhibiting enough behaviors to be considered autistic as time goes on.

And then what?

Well. Opinions differ.

There are those who absolutely think recovery from autism is a big, fat myth. I have heard from (or just read in blogs and other opinion pieces) veterans who say in ALLLL their time involved in the autism community, they have never, ever, ever met a person “recovered” from autism. Maybe they’ve read about a few—even though the common opinion seems to be “misdiganosis” or “obviously still a little autistic.”

 But it’s strange to take such a hard lined position considering how variable the term “recovery” is. In a discussion recently, a mother commented “Recovery is not my goal. I mean, what IS recovery, anyway?” What, indeed. Without defining it, recovery could easily refer to any autistic person who is no longer disabled by their condition. Do those who deny recovery also think all autistic people face lifelong disabilities?

That’s where another philosophical split emerges. Pushed further, those who doubt recovery often believe it’s simply an inappropriate term—that some children make huge progress and grow up to be adults who can function without requiring a lot of support, but let’s not call them “recovered” mm kay? Maybe they even lost their diagnosis- but they are still autistic, and their brains are wired differently. Personally—I think semantics isn’t really on their side, here, but, hey.

But there are also those who just don’t buy it. They assume any story of recovery is actually a story of either misdiagnosis or somebody lying- either to themselves, or the world. Take Jenny McCarthy’s son for example. This is a woman who swears up and down (although she’s not always consistent) that her son, Evan, has recovered from autism. By all accounts, the onset of his autism was atypical. But unless you are a neurologist who has a copy of his brain scans, you aren’t really in a position to say “He had Landau-Kleffner Syndrome.” Landau-Kleffner Syndrome would fit better with “recovery” since most who acquire the syndrome gain ALL of their language back and catch up socially. Funny, because there are also those who have decided based on the limited video we have of Evan “after recovery” that he still appears to be “a little spectrum-y.” I have no idea if Evan McCarthy has autism, had autism, or is currently disabled by autism. I have no dog in this fight. But reactions to his mother’s claim of recovery definitely are not based on logic, reason, or science. Raun Kaufman is another popular example—a man whose parents developed the Son Rise method, he is clearly a successful man who does not seem to be disabled, but it is not uncommon for naysayers to either suggest he was misdiagnosed as a child or point out that his rigid personality means that he is “at least an aspie.”

There are also those who object to the term mostly for its social implications. I cannot say I really blame autists who find the term offensive. When I first started to learn about autism after my son’s diagnosis, I really thought people were splitting hairs. Science is just on our side—we know that a significant minority (sometimes reported as high as 20%) of children diagnosed lose their diagnosis. But it isn’t like those who are claiming recovery are just making factual arguments, here.

A pretty popular book amongst Autism Parents is Let Me Hear Your Voice by Catherine Maurice. It is the story of a mother who had two children on the spectrum, who recovered from their symptoms through ABA. It’s hard to judge how accurate the story is—as far as I can tell, she used a pseudonym herself and has kept the identity of her children private. Still, it has some wonderful information about ABA. As far as I’m concerned, it’s a must read—but, do it early on. Eventually, her being absolutely terrified that her children would be even a LITTLE different is going to rub you the wrong way. Functioning well and being happy is just not good enough for her—her son better be a popular jock and her daughter better be prom queen.

That’s kind of offensive. Like she couldn’t accept that her kids might be “one of those kids.” Special needs. Not even that—they better not be total dweebs. With discussions of recovery often comes implications that autistic people are second class citizens, burdens on their caregivers, and just plain broken and wrong. That is absolute shit, okay?

Even on a more subtle level, many autists find their neurological differences to be the primary component to their identity. Disability or no, non-autistic parents and professionals shouldn’t be so dismissive about these differences. That’s fair enough. Maybe I’m just heavily influenced by my own so called privilege, but I’m a person-first kinda gal by nature. It has nothing to do with my evolving feelings about disability, and I won’t deny I’ve spent my life as an able-bodied white person in the United States, free from poverty. But, I am me before I belong to ANY collective category. Won’t apologize for it—won’t call you a “person with autism” if you absolutely hate it. I’m still not prepared to object to any appropriate use of the word “recovery.”

I think this is a really important subject to talk about, because people tend to form opinions about autism and treatment in general when they do not fully understand what the recovery argument is really about. Autism is a neurological condition mostly diagnosed based on behaviors. A significant minority of children diagnosed lose their diagnosis at some point. There is no consensus as to WHY children lose their diagnosis, and there are many, many theories. Most children will not lose their diagnosis, and will continue to deal with disabling aspects of autism into adulthood, but even so, may live a fairly typical life and overcome or adapt to their limitations with the right support.

Recovery is a loaded term—but oversimplifying the debate just leads to misinformation and misunderstandings.