It is to my mind one of the most exquisitely cruel aspects of early childhood autism that it only becomes apparent to parents very slowly that there is anything wrong with their child.
This quote, by Anne Lovell, appears in the Australian Autism Handbook, and I think probably resonates with many autism parents. It certainly resonates with me.
I have to admit it took me longer than average to realise anything was amiss with Joe. I picked up he was a more challenging newborn than his older brothers and questioned his poor eye contact with the paediatrician at his six week check, but then relaxed as he appeared to develop normally. He started saying a few words and by nine months was an outgoing, charming baby. I have the photos to prove it.
I think this started going wrong around the time of his first birthday but it wasn’t until his second that we started proper investigations. In Joe’s case his development stalled; if there was regression it was subtle.
How much harder to be Anthony Macris and his partner, Kathy, confronted with regressive autism. At eighteen months of age their son, Alex, looked to all the world like a typical child, even an advanced child. And then autism wiped it all away in the space of a few months.
The title of the book comes from Alex’s language regression—he started reversing his words and ‘horse’ somehow became ‘saw’. Eventually he lost all his language. I tossed and turned the night I read these early chapters: the distress the poor sweet toddler experienced as his brain wiring scrambled and world he thought he knew became scary and unfamiliar.
However, I ploughed on and I’m glad I did.
Like all autism parents, Macris and Kathy had to go through that strange process, grieving for a child who was ‘lost’, yet somehow still there.
Grief is about loss, and we suffered a cruel paradox. Alex was with us, physically healthy, thriving. His brain, too, was growing, but it was developing in the wrong way, disordering his senses, fragmenting his speech, obliterating his reason.
But, also like other parents, they eventually dragged themselves up off the carpet and got on with helping their son, through an intensive applied behavioural analysis (ABA) program.
It was strange to read this book. Although I have not met Macris, our sons are of a similar age and both were enrolled in ABA programs. Some of the doctors and therapists the Macris family consults, although not mentioned by name, I know. We live in a similar part of Sydney and the landmarks Macris visits with Alex are familiar: Broadway Shopping Centre, the Sydney Aquarium, Ashfield pool. We have walked the same path in more ways than one.
Macris is novelist and university lecturer in creative writing and this memoir comes with the bonus of being beautifully written. I adore this description of our home city:
Sydney was sulking under gloomy skies. When it was sun-drenched the city was spectacular, but overcast it looked anaemic, desperate for its next dose of sunlight.
A couple of observations: Macris studied philosophy in his youth. I can’t help feeling that being schooled in the discipline of wisdom and reason would help a great deal when finding yourself the parent of a disabled child. It may have been what stopped Macris pursuing ‘extreme’ treatments, which must seem all the more seductive when confronted with a child with severe autism:
When a condition has no known cause, no reliable treatment, yet has such devastating long-term consequences, it isn’t long before you come up against the limits of human reason. I found some of the therapies on offer frighteningly extreme, and was reminded that few things are more disturbing or dangerous than misguided hope.
Secondly: it is a political book. Macris has much to say about our society. We live in an affluent country but our governments make no attempt to adequately fund the services that individuals with autism and other disabilities desperately need. His family comes across many caring professionals in the public system, but none is able to promise them what Alex needs, only what the government is prepared to offer—in a nutshell, not much. The government, it seems, is the intervention provider of last choice.
Eventually Macris and Kathy realise that they will have to fund Alex’s intervention from their own not-particularly-deep pockets. But we have to ask: What happens to the people who have no money to spare?
Ultimately, however, it is a book about love. The love of a mother and father for their son. At the end of the book Alex is aged nine years. He remains significantly affected by autism but is a happy child. His parents clearly adore him. There are many sadder stories.
If you’re over reading books about recovery and cures and are ready to read about love and acceptance I can heartily recommend When Horse Became Saw.
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Your review of this book has certainly sold it to me! And made me a little teary over the difficulties parents of children with autism face in this ‘lucky country’. Wake up pollies! I read a wonderful quote the other day which makes me think of parents like Macris and Kathy who would need to find a great deal of strength on this journey. ‘Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow’.’ – Mary Anne Radmacher.
Many thanks for making us aware of this book and other new info, Benison & Seana. Another one to add to the list of books one would like to read when time allows. (Exam question for ASD parent – You have a precious spare half hour. Should you read a book about ASD or do Floortime with your ASD child?) The idea of hearing from someone with wisdom as to how they’ve coped with ASD is very alluring! Monique.