Autism Spectrum Australia

Don’t judge a book by its label

  • Posted: 20/02/2014
  • Author: Thomas Kuzma
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Labels are important. It may sound silly but if we didn’t have labels/ names for everything we would be brushing teeth with bleach and putting flour in our coffee. Take for example certain disabilities. If we didn’t know about bi-polar or PTSD there would be a lot more lost people and not necessarily getting treated for the correct diagnosis. When I heard last year that the DSM-5 meant that Asperger’s Syndrome would no longer be considered a disability and would be filed in under the autism spectrum, there was more than a little hurt going on inside.

People say that autism and Asperger’s are very similar; I think it’s more like 2 spoons in a drawer. From a distance, they look identical. When we go in for a closer look, we can see the grooves, scratch marks and left over food stains, we notice they are quite different. I can also tell that I suck at washing up.

So what are the differences between these two conditions? Aspergians will more than likely want to know more about the social world than people with autism. The problem is ‘it’s easier said than done’. I used to be, and in a way, I still am foreign to the social world. Another difference between these conditions is the late development of language. People on the spectrum have language symptom delays from an early age. I know (as an Aspie) I had massive problems understanding what people were saying to me unless it was said in a plain and simple way.

A Professional Opinion

To help answer these questions and to gain a better understanding of what the changes within DSM-5 will mean for the autism community, I sat down with Vicki Gibbs, clinical psychologist to hear her views on this matter. What follows is a brief summary of a rather enlightening conversation I had with Vicki on DSM-5, diagnosis and soft furnishings…

Aspergers has always been considered to be a form of autism and has always been under the autistic umbrella. So anyone diagnosed under the old system with autism still has that autism. After 15 years of research we found that the differences between people with autism was not just a case of putting them in the Aspergers box or the PDD box. The severity of their autism, language and intellectual difficulties had to also be considered along with their autism. The new system acknowledges that people share a common set of social problems that can vary from slight to severe. As diagnosticians we need to make sure that any social difficulties people are experiencing have been apparent throughout their whole life because some people can present with similar conditions but these may be only apparent recently and can be attributed to personality disorders or even depression.

I can understand that the Aspie community has developed their own identity. On a spectrum so wide, those who have fallen into a particular group or have been given a specific diagnosis have felt more similar to each other. Then there are those who would say they don’t fit into that category. When you look at a person’s individual experience you can tell why they may want to hold onto that label. It’s not like they can give up on that experience either. With the scientific community we always base our decisions on research and science, and they have told us putting people into three separate boxes no longer makes sense. So we can’t continue to do it for professional reasons. However that does not preclude people from using or attaching a label to themselves or a group as a way of establishing their own identity.

My Two Cents

Firstly, it came to me as a shock, to see a diagnosis that changed my life was now not classified. I didn’t want to hear it. It hurt. Eventually, I realised that it wasn’t all black and white. I’m not leaving my Aspie Odyssey. I’m just moving forward on this journey of Asperger’s. The quest is on a new stage and I have to settle in. Before I was defiant, but after researching, I realised that nothing really changed. Rather than Asperger’s being a separate diagnosis, it shared the same fate on the autism spectrum. Together we were like a giant tree, an Autistic tree if you will, and I’m not leaving till I’ve enjoyed some of its fruit.

What does this mean for the Asperger’s Community? Was all the work that Hans, not the Disney character, but Hans Asperger, did in vain? Obviously no!

It’s not the name that’s the problem. The scientific community needs an easier way to sort the autism spectrum. We can still call each other Aspies or people with Asperger’s Syndrome and for me and many of my friends that’s just what we will continue to do.

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Don’t judge a book by its label