Thursday, May 02, 2019

Autism, by Jessie Hewitson

I learned about this book in December when the author was a guest on the (brilliant) 1800 Seconds on Autism podcast, and was particularly struck by the subheading: "How to raise a happy autistic child."

It's full of useful advice, explaining the myriad ways autism can manifest and the torturous process of fighting for support. Hewitson has talked to a lot of experts, lots of similarly struggling parents and - most importantly - lots of autistic people themselves. As well as the practical tips and details of where to turn to for help, the book underlines that this can be very difficult but not impossible. You are not alone.

If there's one message here it's to be proactive and to fight on. Hewitson says she hopes the chapter on support in education will "empower parents to know some of their rights and help people with less money and privilege to navigate this complex system."
"Some local authorities are good, but many of you who have already embarked on the quest to get your council to stump up will know it is those who fight hardest and play the LA at their own game who get most support. The poorer kids, or the kids who don't have the capacity for the fight, are gettinng less support or, increasingly none. Meanwhile, the children of the middle-classes are getting provision because their parents can understand and can play or afford to play the system." (pp. 208-9)
It's not just knowing how to play the system, it's also having the means. Many of the therapies suggested here cost money and also take time. You need time to battle the system and go to all the appointments. You need time to chase the things promised that haven't been done. Then, after all that battling, you're offered a course - or more than one - at short notice, an hour a week for however many weeks that effectively writes off half a day when you're already struggling to stay on top of things. Being freelance has helped me be flexible but all that time eaten up has its effect, from the constant missing of deadlines to never earning enough.

So I read Hewitson's accounts of various private therapy sessions with envy. But we battle ever on.

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