Proposed Revisions to the Diagnostic Criteria for Autism Spectrum Disorder

As you may have heard, the American Psychiatric Association has proposed sweeping changes to the diagnostic criteria for autism spectrum disorders (ASD). As a result of these changes, it is estimated that 45-80% of those previously diagnosed with an ASD will no longer qualify for that diagnosis. I understand that there may be a new substitute diagnosis referred to as "social communication disorder", which may be applied to those who no longer qualify as having an ASD.

There are so many Big Issues that I don't feel qualified to weigh in on here. Will this lead to a more or less just allocation of resources? What about the issue of identity? After all, "asperger's" is more than just a label; there are huge swaths of people who identify as "asperger's." You can switch up a diagnostic manual, but you can't just take away a sense of identity from people. Will those with asperger's coalesce around the new label ("social communication disorder")? How will these changes affect my son? These are fascinating questions. I don't have answers.

I'm writing in reaction to a post I read by another blogger, and I'm just writing to put my anecdotal experience out there. Writes another blogger whom I admire and respect (emphasis added by me):

I do understand that the surge in ASD diagnoses has placed a huge burden on the healthcare system and school budgets. If it's true that a large fraction of ASD kids are improperly diagnosed today, it would stand to reason that the services currently being delivered are not needed. If so, where is the outcry over waste? There isn't any, because it's universally accepted among recipients that the services ARE needed.

With all due respect, I wouldn't say that this is universally accepted. May I direct you to Exhibits A, B and C. Not every child benefits from intensive ABA. The agency we used at one point told us Bradley doesn't need the services they were providing. They set up goals for him, recorded his progress in a binder and it soon became obvious he wasn't enough developmentally impaired to benefit from the program. He maxed out very quickly, meaning he met all the goals they established. In hindsight, this was a colossal waste of resources when you consider the cost of ABA and the children in other communities who are much needier and who don't have access.

You may counter that my family is in the minority because I am in Massachusetts where services are abundant. True, but autism advocates lobby national companies to add an autism benefit. If a national autism benefit were added, families like mine represent potential claims experience - a substantial liability with respect to which the benefit of coverage is uncertain. The new definition of autism represents a way to manage that liability and tie it more closely to a population that is more likely to benefit from the services. Managing that liability may, in turn, result in increased coverage. For this reason, my at-first-blush reaction is that the revised definition will be beneficial.

Reevaluation

Every three years, the public school system is required to assess Brad, so long as he has an IEP. He was first assessed at three years old when he transitioned from Early Intervention into the public school system. So here we are, three years later and so it is that time again. Bradley is now age 6 and has been placed in regular Kindergarten class with an aide.

According to the school, he is in the average range (47%) for IQ (or Full Scale IQ, whatever that is), the 9th percentile for processing speed, third grade level for reading, seventh grade level for spelling and second grade level for math. The assessment also noted problems with coordination and social pragmatics.

That's kind of it in a nutshell. He's a very uneven kiddo; that's what the metrics show and that's really how he presents. Uneven. I felt a tremendous amount of validation reading his evaluation because I've always suspected his slow processing speed was something that separated him from both his typical and atypical peers. And it is. He's not unintelligent. On the contrary. It just takes him longer to process things.

He qualifies for speech (pull out), occupational therapy (in class), adaptive physical education (pull out), social group and placement in a class with an aide.

This post isn't laced with the emotion of earlier posts, but there's a good reason for that. I'm no longer on that emotional rollercoaster. I have challenges ahead to be sure. But I've learned to take things as they come now.

Four Years

It's hard to believe, but I started this blog nearly four years ago. To put it into perspective, back then Brad was nonverbal, blogging about diagnostic labels was unusual and the biggest social network was Myspace.

Things have changed...for the better.

And to usher in the new era, I've updated the design of my blog. Hope you like.

Back To School Video

Interview subject has the sillies.


And here is Jeremy's first day of school interview, with Brad and more sillies, lazing around the house in the morning.

What happens in Fight Club...

***Spoiler Alert: mild Fight Club spoilers below***

I have Fight Club on the mind. The movie. But for a non-obvious reason. I feel like Edward Norton in the beginning of the movie, when his character goes to support group meetings, for various medical conditions he doesn't have, including testicular cancer and gynecomastia. There's a great scene in the movie featuring a sweaty Meatloaf with man boobs seeking emotional support. That's the way I feel sometimes. Not like Meatloaf, but like Edward Norton bearing witness.

Over the last few years, I too have sampled parent support groups. Anyone else in the blogosphere do this? Even when you were in the I'm-not-sure-whats-up stage? I'm just sitting there thinking, am I Edward Norton in Fight Club, or am I like these other parents, just in denial? The answer is likely somewhere in between.

For starters, I've met with a few mothers of children who are severely autistic. These mothers are of such high character, I don't feel worthy of being mentioned with them in the same sentence. The challenges, from darting to self-injurious behaviors to almost no verbal communication. I feel like my life is richer just by having met these wonderful parents - heroes really - but I could not relate to their challenges.

Next, I went to a small informal talk for parents led by a social worker. It was broadly focused on dyspraxia, nonverbal learning disability (NVLD), aspergers, dyspraxia and central auditory processing disorder. The problem with this one is that it was just bullshit. Tremendously disappointing. It started with a youtube clip, which she couldn't get to work with her overhead. But rather than moving on, she held us captive for 15 minutes while she tried to get youtube to work. She couldn't wing it. Not confidence inspiring. I got up in the middle of the meeting and left, after she told her captive audience that children with asperger's "are atonal and don't process emotions." Check please!

Most recently, I went to an asperger's parents support group. Best fit yet. I really connected to the parents and their anecdotes and view points resonated with me. At one point, the person running the meeting quoted a story written by a child with asperger's (who is now an adult and an accomplished journalist):

Well, we went to Boston, Massachusetts through the town of Warrenville, Connecticut on Route 44A. It was very pretty and there was a church that reminded me of pictures of Russia from our book that is published by Time-Life. We arrived in Boston at 9:17. At 11 we went on a big tour of Boston on Gray Line 43, made by the Superior Bus Company like School Bus Six, which goes down Hunting Lodge Road where Maria lives and then on to Separatist Road and then to South Eagleville before it comes to our school. We saw lots of good things like the Boston Massacre site. The tour ended at 1:05. Before I knew it we were going home. We went through Warrenville again but it was too dark to see much. A few days later it was Easter. We got a cuckoo clock.

Wow. This is exactly how Brad talks. It's all about the time and idiosyncratic details.

But then...

She asks the entire group "who here has a child with anxiety issues." She nods knowingly when everyone raises their hand. "Yes," she says, "children with asperger's have anxiety." Well everyone's hand was raised but mine. Brad has no anxiety. None. And bam! I feel like Edward Norton. You don't really belong here.

So you see, the more things change, the more they stay the same.