Asperger’s: The Defining Moments

By Jessica Allen.

“He has signs of autism but he’s not autistic.”

This is the phrase that haunted my mother and brother until he was six. After years of doctors and specialist appointments, my brother was finally diagnosed with Asperger’s in 1997. You can imagine how relieved my mother felt to finally have answers – that was until she learned that Asperger’s wasn’t a recognised disability. Our mother was at a loss. She had no idea how to handle my brother’s behaviours and began to suffer her own depression.

Tony Attwood, the world’s leading expert on asperger’s syndrome told the ABC, “Asperger’s is an autism spectrum disorder, which is characterised by significant difficulty in social interaction as well as restricted and repetitive patterns of behaviour and interests. Many label these as ‘obsessions’. These obsessions are usually short lived – generally lasting about three or so months but can go on for a lot longer,” he said.

From a young age my brother began collecting things. It began with a fascination of chimneys, which then translated into straight lines. He began to collect anything which had a straight line, staring at things like sticks, vertical blinds and rulers for hours. As he got older it changed to chess sets, decks of cards, soccer jerseys and now at age 22, guitars. Experts on say this is one of the many common characteristics in asperger’s children and one of the signs they say to look out for when identifying symptoms. However, in a recent conference, child psychiatrist Dr. Peter Evans says this is incorrect.

“If you start taking signs such as the child is naughty or they are collecting leaves and sticks then you may as well diagnose all children with autism. Children are curious people and their collecting sticks and leaves is a way of learning. It’s the subtle signs you look for. The confusion at certain gestures or their ignorance to cues or emotions from other people.”

Despite Dr. Evans’ view, behaviour was one of the main issues our mother had when enrolling my brother in primary school. The teachers refused to believe that Jonathon’s behaviour was because of a disability but that he was naughty because of bad parenting. This continued, even after the school counselor informed the teachers that he was diagnosed with asperger’s by child psychologist, Peter Evans.

“Every year, I had to go to teachers and ask them if they knew what asperger’s was and 90% said no. I would give them sheets on asperger’s. I ended up having to pull Jono out of his first school and enroll him in another. Fortunately they were more tolerant at the new school,” our mother said.

This was a common issue surrounding Asperger’s as it was not widely recognised and many had trouble accepting that it was an issue. This severely limited the support base for sufferers. In present day, with asperger’s being more accepted there is still a limited amount of support services available and this comes from a lack of understanding about the disability.

“What people need to understand is that asperger’s isn’t like down syndrome. I go out and pick 10 random children who have down syndrome right now and they would all have similar symptoms. However, if I went out and brought back 10 kids with asperger’s, you would find that none of them have the same symptoms and this is why it’s hard to find support for them. Nobody knows how,” Dr. Evans said.

If you Google search ‘asperger’s support’ several links to support groups in Sydney and Victoria come up but yet there’s nothing in the Illawarra. Similarly, while many people stereotype disabled persons as being able to do ‘everything they put their mind to’ or ‘not being able to do anything at all and need assistance with everything’ can we really expect those in between to find this support online?

Tony Attwood, who also gave a presentation on autism spectrum disorder earlier this year, said that while the competencies of asperger’s differs, it’s important to remember that many don’t have the thought to search for support.

“While the symptoms of Asperger’s change greatly from person to person, the majority doesn’t have the same thoughts that we consider to be ‘common sense’. While it makes sense to you and me just to jump onto Google and look it up, they don’t think like that and they’re most likely going to believe that there is no support because they themselves don’t know how to seek it,” he said at the conference.

“One thing that amazes me is his photographic memory. He knew the names of every dinosaur before he went to school and so he would come across as really smart but he had no common sense at all. When you try to talk to him about these things, he gets this look on his face and you just know he’s glazed over. Jono’s tuned out,” our mother said.

Asperger’s may be a disability that is still stigmatised but this view is slowly changing. Schools and parents are learning to adapt as more children, mainly boys, are diagnosed with the disability. However, Dr. Evans believes the local government needs to take more steps to put that support in place. He says, hopefully, the introduction of the National Disability Insurance Scheme will help with that.

“The introduction of the NDIS will hopefully provide a better outlook for Asperger’s patients when they seek support. What the disabled persons need to realise is that they need to seek support in any form possible,” he said.

However, this won’t be without difficulties. Our mother admitted that, “The breaking point came the other night when Jono rang me crying. He had realised his life was going nowhere and he didn’t know what to do about it. He just cried and said ‘what should I do mum?’ but I didn’t have an answer. The worst part was when you could hear in his voice that he no longer had any hope and he said, ‘I desperately need help. I can’t do this anymore. I just don’t know what to do’.”