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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