Tuesday, December 4, 2012

Bye-bye Asperger's

Last Saturday, changes to remove Asperger’s Syndrome from the fifth revision of the American Psychiatric Association’s Diagnostic and Statistical Manual, or DSM-V were approved by the association’s board of trustees. This is the first major rewrite of the DSM in almost 20 years. Instead of having Asperger’s as a separate distinction, there will simply be Autism Spectrum Disorders.  I will miss having Asperger’s as its own diagnosis.  Having children on both ends of the spectrum, it was a convenient way for me to distinguish between their conditions.

And I have to say, I don’t find the boys all that similar. Eric, who has Asperger’s, suffered from violent outbursts and meltdowns when he was younger, and seemed to have even more severe sensory processing issues.  For example, he could not watch television without putting his thumbs in his ears and splaying his fingers over his eyes; the simultaneous audio-visual was simply too much for him. He really disliked going to the movies—it was just too loud for him and he would often bring something to distract himself from the onslaught of loud noises and bright on-screen visuals. Transition from one activity to another, especially going out, often brought on a fit, or he would simply hide from us—something he was scarily good at. And I can count on one hand how many times Eric has had a fever—the kid is the picture of health.

Ryan, on the other hand, rarely has a tantrum and loves to go out.  He’ll run and grab his shoes and over to the car if I say we’re going somewhere.  Unlike Eric who can orate like a professor on any number of subjects, he is basically non-verbal.  A lot of coaxing will pull out requests for Coke, his most favorite thing in the world, or pretzels, his second…and he can approximate or say dozens of words.  He generally chooses not to, preferring to point or pull at our hands because it’s so difficult to speak.  

And while he is a happy child, Ryan is not healthy.  Although he rarely gets a cold and has never had a single ear infection, he exhibits many of the medical conditions that frequently exist with autism. He usually has dark circles around his eyes. He has severe food allergies—his most recent tests show he has some degree of allergy to anything he’s ever eaten—including spices and garlic.  Meats are the only exception.  He has mastocytosis, an auto-immune disorder that leaves him with rashes that result in depigmentation in his skin. He is covered with bright red eczema from his food allergies. He has gut issues and a likely mitochondrial disorder. He shakes uncontrollably at times, and I fear he is at risk for epilepsy, which has a high co-morbidity rate with autism.

 My idea of a DSM...

I wish there was a specific detailed DSM-like manual just for autism, to include Asperger’s.  Autism presents differently in everyone, but there are many overlaps with the debilitating medical symptoms.  Doctors need to know this. Pediatricians are simply not trained in autism, and have allowed children to suffer for too long saying autistic behaviors and odd postures are just “how they are”.  It is shameful, given the number of children affected.

This post went in an entirely different direction than my original intent.  I thought I would be writing about what the loss of the special identifier “Asperger’s” would mean to self-advocates who see it as a source of pride, and how our children might lose access to services if this designation is taken away.  Instead, once again, I was reminded of my youngest son’s struggles with the debilitating medical condition that is autism…and of my seemingly futile attempts to relieve his physical suffering.  In comparison, Asperger’s as experienced by my eldest son with its gifts and social quirks just does not seem like the same thing at all. 


  1. When the experts cannot find a solution, they typically respond as you noticed. Sad.

  2. There are too few medical experts when it comes to autism. Talking to parents is usually way more enlightening.