Diagnostic Changes for Autism Spectrum Disorders
Currently Asperger Syndrome (AS) is one of a group of conditions that are grouped into the category Autism Spectrum Disorders (ASD).
The American Psychiatric Association plans to merge “Asperger’s Disorder” into “Autism Spectrum Disorder”  in version 5 of their Diagnostic and Statistical Manual (DSM). Apparently a primary reason for the change is the difficulty in assessing people into the various categories (AS, Autism, and PDD-NOS) and some variation in diagnosis between regions.
Professor Simon Baron-Cohen (a leading researcher on Autism and Asperger Syndrome) wrote an insightful article about this for the New York Times . He suggests that while genetic research about the causes of Autism Spectrum Disorders (ASDs) is in progress there should be no change. If it turns out that AS and Autism have the same genetic cause then that would be good evidence to combine them into a single diagnostic category. If however they turn out to have different genetic causes then they would need different categories and he suggests that changes should be delayed until this issue is resolved. Simon also raises the issue of the status of people who have already been diagnosed, this is one of the social issues relating to a change in diagnostic criteria.
Social Issues related to Diagnosis
Unlike some disorders listed in the DSM, many (possibly most) people with AS really care about such things. I think that a common reaction to being diagnosed with Aspergers is to make the study of ASDs a “Special Interest“, which therefore makes it impossible to ignore what the psychologists are doing in this regard.
The biggest problem with changing the diagnostic criteria in this regard is that AS has a good reputation. Some people even think that it’s generally a good thing and seem to imagine that every child who is diagnosed with it will end up working for Google! This means that parents will be less likely to reject a diagnosis and therefore will be more likely to try and create a good environment for their child and seek appropriate therapies (such as social skills training and occupational therapy). I expect that a child who is diagnosed as Autistic but who doesn’t obviously conform to the worst stereotypes will likely have their parents reject the diagnosis which will lead to a bad result for everyone concerned.
The contrary view in this issue is that people who are on the spectrum but who insist that they aren’t Autistic are prejudiced and they should embrace the Autism Spectrum label as a measure of solidarity , while that’s a reasonable point it’s not going to happen in the short term.
Also there is the issue of adult diagnosis of AS, there are lots of adults who could benefit from being diagnosed and obstacles to such diagnosis (such as associating it with a label that is not well accepted such as Autism) are not going to do any good for anyone.
Is Asperger Syndrome really that similar to Autism?
Roy Richard Grinker (Professor of Anthropology) wrote a positive article for the New York Times about the diagnostic changes . He seems to think that because in some cases it is difficult to distinguish the difference between Autism and AS they should be in a single diagnostic criteria. Based on that logic you could say that no-one should be diagnosed with an ASD because there is never a clear dividing line between the Neuro-Typical and those who are on the spectrum! Some people are clearly on the spectrum, some clearly aren’t, and some are near the border.
Roy cites his daughter and Temple Grandin as examples of Autistic people who have greater ability to relate to animals than someone who is Neuro-Typical (NT). I don’t have any particular skills in terms of relating to animals. Animals have smaller brains than humans and have thoughts that are less complex and more related to short-term issues, this makes them easier to predict in some situations. I do have significantly better skills in figuring out how to operate machines than most NTs, and this doesn’t appear to be uncommon among Aspies. I’ve read some of the material that Temple Grandin has written and watched the video of her TED talk, and I get a strong impression that she isn’t like me. Even the Aspies who are the least successful in terms of their career (IE quite unlike Temple Grandin) often seem to be like me, I can understand the way they think and recognise that the problems they face are similar to mine but merely more severe.
It seems to me that there are significant personality differences between people who have an affinity for animals and those who have an affinity for machines, maths, and engineering.
I wouldn’t be surprised if it was discovered that Autism and AS had different genetic causes, and this might mean that someone could have both sets of genes. It is obvious that the dividing line between Autism and AS is not that clear. It also seems that part of the diagnosis as implemented by psychologists may be based on the ability to act like an NT and succeed by objective criteria – IE earn a good salary in the case of adults. One thing that Roy does get right is that he notes that among people diagnosed with AS and Autism there are both “high” and “low” functioning individuals.
One thing that Roy gets wrong is the implication that Autistic people can become Aspies. An adult who is assessed without background information on their childhood may get a different diagnosis. If someone was reassessed as an adult with the full facts about their childhood available then (barring DSM changes) the same diagnosis should be returned.
It appears that this DSM change is going through regardless of the opinion of the people who are affected. While there is a logical basis for giving more weight to researchers than to the research subjects (who are bound to be more biased) it seems that there are some things you can’t properly understand unless you live them. When a good portion of the research subjects feel compelled to share their experiences with anyone who will listen it is disappointing that so few of the researchers appear to be listening.