As far as books go, I’m one of those people that tends to read in blocks. I pick a book up and generally, I don’t put it down until it’s done. This often means that I leave my reading until I’ve got time to sit up until 2am, and not have to get up to work the next day. Batch reading multiple books every holidays and soaking up every second of escape they offer.
So when ‘Neurotribes: The legacy of Autism and the future of neurodiversity’, the mouthful of a title from Steve Silberman arrived I knew I had to wait until my holidays to get into it. A huge tome, it’s weight – both in the physical and the reviews preceding it – made me want to give it the attention it seemingly deserved.
And I’m so glad I did. Unlike my standard fiction reads, this one is written by an acclaimed journalist and treads the line between biography, medical journal and historical epic. Traversing centuries it follows the journey of Autism from the quirky and odd ways of early scientists, to those left to rot in institutions, right through to the ‘epidemic of Autism’ in Silicone Valley.
Tracking the diagnosis of Autism from the early research, the book explores the ins and outs of the political and personal agendas that influenced way Autism is thought of today.
Perhaps naively, I never really thought about this side of Autism; yet, of course, like anything – if there’s money to be made, or egos to be stroked, I suppose it only makes sense that there would be agendas to be pushed.
Seeing our family in the pages of a book was at times, both comforting and confronting. The children, and some of the parents, who share their story could be people within our own community. Struggling to do what is best for our kids; sometimes screwing up along the way, learning from our mistakes and eventually moving towards a new, better normal.
We’ve never been a family who’s searched for a cure, trying instead to understand Poss’ world as best we can and find ways to help her be the best Poss she can be. Although I’m the first to admit there have been moments when I have grieved for the life I thought we would have, the child I thought we’d have.
However, as Silberman shared words from an epic speech by Jim Sinclair titled ‘Don’t Mourn For Us‘, I found myself nodding along. There might have been tears. And not a little bit of self reflection.
It does take time for parents to adjust, it does. That’s natural. But if we stay in that state, we miss so much. So much of these amazing children that we’ve got right now, and the people they’ll grow up to be. And I wouldn’t want to miss a second of it.
I won’t lie, at times it was an exhausting and terrifying read; there were plenty of moments I just had to put the book down and walk away. However, it always drew me back.
And while there’s no heart stopping twist, no out of this world finish, no romantic, happy ever after, there is a hope. A hope and an urging that neurodiversity takes a step forward, and the Autism community: the Autistics, the parents, the families and the medical professionals, all there to support it.
That’s an ending worth holding out for.