Last year I wrote about the proposed changes to the Diagnostic and Statistical Manual which would exclude the diagnoses of both Asperger’s Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) from the 2013 revision. In the proposed revision Autism Spectrum Disorder would be the umbrella diagnosis replacing both Asperger’s and PDD-NOS. You can bet that this change in diagnostic criteria has caused quite a stir in the autism community. As a mother of a child with autism and not Asperger’s, I have mixed feelings about the proposed diagnostic revision. In this post I will tell you why I am not so keen on having Asperger’s disappear from the diagnostic menu.
You may read the newly proposed criteria for autism spectrum disorder on the American Psychiatric Association website.
One of the key difficulties with diagnosing autism spectrum disorders is that there is no medical methodology (yet) to prove someone has autism. There is no blood test to diagnose autism for example. Autism is simply a label created by clinicians and diagnosticians to describe a common set of observed behaviors in some individuals. Yet even with this clinical definition, there are great inaccuracies and disagreements in how people are diagnosed. For example when my son Max was diagnosed with autism over a decade ago, one of the clinical “tests” was to give my son a doll and hairbrush to see what he would do with these objects. When he didn’t automatically brush the doll’s hair he was deemed to lack imagination, one of the clinical signs of autism. When I explained that my son routinely played with stuffed animals and figurines this did not matter. It also did not matter when I told them that we had no baby dolls in our home and that my son used a comb and not a brush for his own hair. Either he displayed certain behaviors or he didn’t during the test time. It is easy to see how mistakes in interpreting observed behaviors can be made.
The other problem with diagnosing autism is that for some parents, the “A” word is to be avoided at all costs. Before my son was officially diagnosed I had joined a bunch of on-line support groups with different names. There was a huge group for parents of “late talkers” and then a smaller group for parents of children with hyperlexia (an early fascination with letters, numbers, and a precocious ability to read words), and then an even smaller group for parents with children who had a pervasive developmental disorder (PDD). Finally some of us ended up in an autism support group when our child was officially diagnosed. But for some parents, the diagnosis of autism was purposefully delayed or was called something more palatable. It was not unheard of for some parents to go “label shopping” by choosing a clinician who they knew would use terminology other than autism to describe their child’s behavior. Some parents would discuss this openly within the support group forums. PDD, hyperlexia, or Non-Verbal Learning Disability were deemed as “good” diagnoses carrying less stigma than autism.
Then there is Asperger’s Syndrome. I remember when I was just starting out with on-line parent support groups and I met a future friend. Her son was a few years older than my Max and with the same basic diagnosis of autism. But when we began to compare tales of development there were some very striking differences. While we were still struggling with toilet training at the age of five my friend’s son had toilet trained early. While Max spoke maybe five words by the age of four, her son was learning words in two languages. And while her son had problems with things like deciphering body language or sarcasm, my son needed to be painstakingly taught how to zip his coat. I thought to myself, “If this is autism then it is a totally different type of autism than what we are living with.”
In forums this wide variance in behaviors and symptoms among children sharing the same diagnosis was revealed in parent comments. One mother wondered, “Will my son ever find love?” to which another mother responded, “Love? I am wondering if my son will stop trying to eat the paint off the walls.” It became clear that many of us were dealing with very different issues with our children. Some parents would later report that their child was not autistic but had Asperger’s Syndrome instead. While still others said that this diagnosis was simply a fancy name for high functioning autism.
If you ask parents, clinicians, and even people on the autism spectrum themselves about what the difference is between Asperger’s and autism, you are going to get a lot of disagreement. One fundamental difference between autism and Asperger’s is in communication skills. Typically the child with autism has great difficulties learning expressive speech and some never learn to speak at all (through verbal means). The child with Asperger’s Syndrome, by contrast, may have more non-verbal communication problems such as interpreting facial expressions or body language. Social skills or rather, the desire to be social, may also be very different for the individual with Asperger’s Syndrome vs. someone with autism. While the child with Asperger’s may wish to make friends but lack the social skills to do so, children like my son, diagnosed with autism, may lack the desire to begin with to seek out contact with peers. There are other differences between these two disorders, too numerous to list.
One could make the argument that since autism is a spectrum disorder that Asperger’s Syndrome is simply on one end of that spectrum. But there are implications for this broad definition which may prove to be a disaster for children at either end of the spectrum.
One of the positive aspects of differentiating between autism and Asperger’s Syndrome is that for some, the Asperger label is part of their identity. Some individuals with Asperger’s belong to an “Aspie” culture where their differences are celebrated instead of pathologized. I don’t think that the change to the DSM would change this culture but it may take away some credibility or recognition of their unique differences and challenges.
The other problem with failing to differentiate between the two diagnoses is more practical. A label may be stigmatizing but it provides certain necessary services. I don’t want my son to be competing against someone with Asperger’s for services. I believe that every child or individual should receive the services they need. A child who cannot talk, is not toilet trained, and has difficulty with daily living skills is in a different boat than the child who cannot understand sarcasm and has difficulty making friends but is in a mainstream classroom. This is not to minimize the needs of the child having Asperger’s as some children with this disorder have great impairments but they may be very different from a child with classic autism.
It is for these reasons and more that I feel the possible elimination of Asperger's Syndrome as a separate diagnosis will do a disservice to all children who may fall under this broad umbrella of autism.
Only time can tell what will actually happen in 2013 when changes to the Diagnostic and Statistical Manual will be official. As much as we think we know about autism, it still remains a very elusive and tricky disorder to define. Is Asperger’s Syndrome different from autism? I think so. But one parent’s opinion will not change what will be. The “experts” will have the final say next year.
Now it is your turn. What are your thoughts on these proposed changes including the possible elimination of Asperger’s Syndrome from the newly revised DSM? Do you think there is a difference between Asperger’s and autism? What do you think the implications will be if these proposed changes take effect? Let us know your views. Your opinion is important to us!
You can read more about my experience teaching, parenting, and loving a child with autism on our blog: The Autism Express
Published On: February 23, 2012