Tall Tales of Autism Treatment

Screen Shot 2015-12-10 at 12.21.05 PMIf you’ve been on Facebook more than a year, then you are familiar with the “Memories” feature it has, where you are shown your posts from the same date in previous years. Recently, Facebook showed me an article I posted in 2009 about progress in autism treatments and therapies, and at the time I commented on how helpful it was to read. Cheeks had been diagnosed just a few weeks prior to me posting that article, and I remember how reassuring it was to me about what his future could hold. Read the original article here.

When I reread the article now, I don’t find it encouraging. I find it harmfully misleading. I can see why it gave me so much hope, but that hope was misguided.

The article discusses one family’s story with their diagnosis and treatment using applied behavior analysis, or ABA. ABA is the primary treatment method of choice for most autism cases, because it has the most objective science supporting it’s success. We have done ABA for years with Cheeks. It’s a slow process, but I agree that in the hands of someone skilled, it can bring positive change to some of the most difficult aspects of autism.

The problem that I have with this article is that it describes recovery from an autism diagnosis after just about a year or so of ABA therapy. It’s the kind of story every autism parent wants to hear, but only the seasoned ones know is entirely unrealistic. And it saddens me to think that people are reading things like this and framing their hopes and expectations around it. I know I did, six years ago. (Don’t even get me started on the use of the word “recovery” in the article. Cheeks isn’t sick or injured.)

I don’t know enough about this case to say with certainty, but it’s possible that this child was incorrectly diagnosed based on the speed with which his symptoms were mitigated. And I don’t want to minimize the effort this family made, I’m sure it was significant. But fundamental differences in a person’s neurology can’t usually be so quickly changed. Telling this story without adding that it’s such an exception to the norm does a disservice to the millions of families who struggle daily with helping their kids to achieve an independent adult life of their choosing.

In fact, only a small minority of people diagnosed with autism ever reach the point where they no longer meet the diagnostic criteria, possibly around 7%. And within that group, it’s considered likely that at least some were misdiagnosed.

Everyone loves a heartwarming story and I’m happy that this family achieved a good outcome for their child. But it’s not helpful to tell this story as if it’s what the future might hold for someone new to the diagnosis. In a future post I will tell the story of how and when we knew Cheeks was autistic, and what getting that diagnosis for Cheeks felt like to our family. I completely understand why I loved this article back then. Now, I wish I had been told more realistic stories about what parenting a child with autism would entail. I wouldn’t have liked them nearly as much at the time, but they would have given me valuable insight into facing what was ahead.

Screen Shot 2015-12-10 at 12.28.12 PMRaising an autistic child is not like playing the lottery. I buy lottery tickets knowing that my chances of winning are slim, but I’m willing to spend a small amount of money in exchange for the fantasy I get to live while I wonder what it might be like to win. I don’t want to make decisions about my son’s future using fantasy as my criteria.

What inspires me now is reading about other families who have worked for years, like we have and continue to do, to find their sweet spot between acceptance, adaptation, and achievement. Those are my heroes and they have the outcome I aspire to for Cheeks. I know many of these people and I see myself and Cheeks in them. Our story has been their story, with some changes to the specific details. I know for sure that we can have what they have. What could possibly be more hopeful, or more reassuring, than that?

 

Julia, the Autistic Muppet

Last week, Sesame Street announced that it is introducing a new Muppet-style character with autism. I love this for many reasons, one of which is because they are making her a girl (named Julia). That’s a deviation from what would be expected, since autism is five times more common in boys than in girls. Creating this character as a girl challenges what people think they know about autism, and about who they think may be autistic among people they meet.

Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/
Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/

I think many people, upon hearing the news, were under the impression that Julia would be seen on the popular PBS show we know and love. In fact, there are no current plans to put her on TV. She’s only featured in one digital story book, called “We’re Amazing, 1, 2, 3!” If you were under the impression that Elmo was getting a new autistic friend in any recurring way, that’s still unclear. Although I wish we could anticipate more visibility for Julia, she’s still part of a great library of online resources designed to celebrate amazing qualities in all children.

The most intriguing reaction to the news of Julia’s character that I found was an article in the New York Times, which suggests that unbeknownst to us, The Muppets already had an autistic character. If you know The Muppets at all, you definitely know this one. He can’t figure out what his audience will find funny, he often misunderstands metaphors, and even has a verbal tic (wokka wokka wokka). You guessed it… Fozzie Bear. Read the article, and more about the writer’s theory, here.

When I read this column, it made so much sense to me. I’ve known lots of autistic kids that interact with others in a similar way as Fozzie. But the best part of all is that no one ever thought to label Fozzie as autistic. As part of The Muppets, he’s just another lovable character among many, all of whom have their own oddities. Fozzie may fit the diagnostic criteria of autism, but he’s not an autism character, or any kind of stereotype. He’s comedic without being a caricature.

Autism acceptance is not simply passive tolerance. It’s not just about finding ways for kids with autism to learn, play and function alongside their peers. And it’s not just about teaching typically developing kids to understand their peers that have differences. At it’s best, and the goal, is to make it about allowing people with neurological diversity to be just people, and not be defined by what society deems to be a disability.

I celebrate this new character of Julia. But at the same time, I just crave more Fozzie.