"Professional Support" and the Book Trade

I had a strange realisation today.  My latest bruising encounter with the education system (more later) led me to mull over all sorts of things today, sifting through experiences and discoveries to try to find a way to communicate more effectively with "them", to be taken seriously.

I went back to "the beginning"; just over 5 years ago when, 7 months pregnant, my 2-year-old was diagnosed with autism by a pediatrician in an office at the Children's Hospital.  We left with a recommendation to see a speech therapist and little else.

I went home that night and got on the computer, looking for information.  Where did I look?  Amazon.com.   Today is the first time that I have wondered why on earth I did that?  Because I had no idea what organisations existed; Amazon grouped books together, sometimes offered reviews ... it seems utterly pitiful now, despite the fact that it worked.  I only read one book before S was born, and it was a fantastic book that happened by some enormous coincidence to be located at my local library, all the more extraordinary since I don't know a single other person who has even heard of it: The Science and Fiction of Autism by Laura Schreibman.  I'm sure this is not the first time I have mentioned that book in this blog. But it is the first time that I have felt outraged that the diagnosing specialist could not have even put a pamphlet in my hand with a summary of what the disorder was known to consist of, or even better, a support group's contact details.

As it happens, it was several more years before I picked up anything that referred to Asperger's Syndrome, because no-one explained its relevance and I was barely functional enough with two difficult infants on my hands to process any information.  So instead, when I was able to read anything, I tormented myself with information which was in many ways of only tangential relevance to my son.  Certainly, with some guidance, I might more quickly have understood that he would keep developing, changing, and that there was much that we could do to help.  Instead there was fear, fear, fear, and grief, which there would have been anyway.  But the fear might have diminished if it hadn't taken 2 years to find a pediatrician who regarded it as part of her role to support the parents.

I feel a surge of activism coming on.  More next time on my experience today.