Monday, 23 June 2014

Going it Alone

Just recently R was diagnosed with Asperger's syndrome (or “Autistic Spectrum Disorder level one” to use the latest ridiculous official name for it). Now whilst I wasn't surprised at the diagnosis, having suspected it for as long as I can remember, I was surprised at the reaction (or lack it) from other people.

Beginning with family. There are times when I feel very much like a single parent going it alone. No one seemed to want to discuss the psychologists report, whether they even agree with it, or what it means and how we can help R. No one was interested in finding out about Asperger's. Web links and book recommendations were ignored. Heads were stuck in the sand. It wasn't talked about.

Moving on to our paediatrician. To accurately describe our paediatrician I would need to use many unprintable expletives so I will just say instead that we didn't get on. I took the several pages of the psychologists report along to the paediatrician for some feedback and referral for OT. We were in the room for less than 15 seconds, this being the first (and last!) time we had met this particular doctor, before he’d decided that R had given him too much eye contact, couldn't possibly have Asperger's. He then proceeded to infer that we had lied to the psychologist on the parent questionnaire and that the psychologists report was wrong. At this point I still had the report in my lap, the doctor had not yet even opened it. In 15 seconds he had decided to ignore the psychologist’s report, which was compiled after 3 one hour sessions with the child and a battery of tests, in favour of his own diagnosis based on R entering the room. After wasting our time and money for about 20 minutes, talking to us like we were idiots I finally got my OT referral after 3 times of insisting on it.

By this time I was beginning to doubt my own sanity, wondering if I had actually made up the answers to the psychologists questionnaires. Considering whether it really was all in my mind. Had I given my child a label that was totally inaccurate?

All I can say is thank goodness for Dr Tony Attwood. Our lovely psychologist directed me to a full day workshop/lecture in a nearby town on Asperger’s for parents and professionals. These workshops are arranged by SueLarkey who was also one of the speakers along with Dr Michelle Garnett and Dr Tony Attwood. If you can get to one of these workshops then make sure you don’t miss them, they are inspirational. All the speakers were amazing but especially Dr Attwood who had the audience of around 700 in fits of laughter along with tears of sadness. The speakers described people with Asperger's and how the condition affects their lives. It was like a documentary on R. At last here was confirmation better than any piece of paper that the diagnosis is correct. I didn't feel so crazy and alone any more.

Dr Attwood and the other speakers discussed ways that we can help children with Asperger’s syndrome. It was recommended that schools spend a minimum of 1 lesson a week on social skills. I'm hoping to add some time every week for social skills into our home education routine along with fine and gross motor skills, feelings and emotions and sensory play. Of course all these “subjects” are not in the NSW curriculum that I'm supposed to be following and time may need to be sacrificed from other subject areas to make this happen. I'm hoping my AP will be sympathetic and put the needs of the child before the needs of the Board of Studies as we are almost due for “inspection”.

I picked up several books and other resources at the talk. I'm nearly through the stack on my coffee table. More are on the way. I don’t know if anyone else will look at these things or attend a future talk by Dr Attwood but I sure hope so.

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