I read and reviewed A boy made of blocks last September – you can read my thoughts here. To summarise from then:
although some parts of the ending are kind of predictable, I totally admit that I was swept up in the emotions, and may have shed a tear or two (or even a few more) at what felt like the big climax at the end. (Turns out it goes on a bit after that, but loose ends irritate, so I’ll forgive the tidy up.)
All in all, I’m glad I read this one. Hope my perspective is useful
So I was wondering what I could add to a review this time around, and in discussing the book further on twitter, I found out.
In my first post, I queried some of the language in use in the book. For example the passage around diagnosis:
Last year, the paediatrician told us, after interminable months of tests and interviews , that he is on the upper end of the autism spectrum. The higher-functioning end. The easy end. The shallow end. He has trouble with language, he fears social situations, he hates noise, he obsesses over certain things, and gets physical when situations confuse or frighten him. But the underlying message seemed to be: you’ve got it easy compared to other parents.
This is problematic for those of us with autism spectrum diagnosis. We’re moving away from functioning labels – recognising that someone who is high functioning at some times and in some situations may be low functioning at others. It doesn’t help to think of autism this way – it isn’t a linear progression. There are some excellent articles around on this sort of topic – for example here and if you google functioning labels autism, you’ll find a whole stack more.
Going back to the linear progression idea, I also picked up on references to the autism scale. This is not a phrasing that I’ve come across (and I have more experience with autism than just my own diagnosis – I’ve worked in care homes with autistic adults, and have other family experience too) so I went on a hunt. There does appear to be a three step scale mentioned with the DSM V which is the American diagnostic manual, which may or may not be referred to in diagnosis here. There’s a breakdown of diagnostic criteria and so on on the National Autistic Society website – it doesn’t mention the autism scale. I think this would be better understood as the autism spectrum, which encompasses a set of different diagnosis. Again though, they aren’t linear, and someone can have aspects of more than one diagnosis.
Basically, autism is complicated, and dealing with it as a parent is kind of a minefield. The best advice I can give is to read widely, find support groups that include autistic adults and listen to us.
I don’t regret in the slightest reading this book – I very much enjoyed it. It *is* possible to enjoy a book while recognising problematic aspects, and hopefully I’ve given some further explanation on parts of this which is useful. Do let me know what you think in the comments.
Check out the other blogs on the tour: