Since the Batsman’s autism diagnosis, I have read lots about autism.
I have read articles and websites, books and blogs. In the early days, I read every single thing I could get my hands on. I think that is a natural response to the “not knowing” that comes with a diagnosis like autism. These days I still read a lot but I am more selective. I think I choose more wisely and I realise that no matter how much time I devote to it, it just isn’t possible to read everything. I now have a personal rule where I alternate my reading. One autism book, one “other” book like a mystery, a biography or a novel, one autism book and so on. Yes Suz, it’s ok to cut yourself a little bit of slack. It’s ok for us all to do that.
Of all I have read, one of the most valuable genres has been that of the parent account of their journey with their child, with their family, with autism along for the ride. From the pens and minds of mums and dads have come incredible insight, despair, tears and nods of agreement, pride in the autism parenting community and perhaps most important of all that solid knowledge that no matter how tough it all gets, that I am not alone. They are individual journeys but there is shared understanding.
These are some of the parent accounts I have read:
When Horse Became Saw by Anthony Macris
Making Peace with Autism by Susan Senator
The Other Country by Michael Whelan
A Friend Like Henry by Nuala Gardner
I also have “Living with Max” by Chloe Maxwell sitting by my bed waiting for me to read too.
I have loved some of the parent accounts more than others. Some I have identified with much more powerfully. But all together, they have given me something so very special and powerful. Not alone. I am part of something. A bit like this website I guess. We are all in this together.
What parent accounts of living with autism have you read? I would love us to create a bit of a list as a resource for sharing.
Do you think you will ever write your own book?
{ 6 comments… read them below or add one }
I know this is supposed to be about parental accounts (and you can see my recommendations below) but seeing you respond Benison I just had to tell you what a huge impact your book The Australian Autism Handbook had on me. After diagnosis I was in such a mess and just couldn’t wade through the masses of crap on the internet, your book was exactly what I needed. Thank you so much writing it, it helped me so much. It is the first book I recommend to families that have received a diagnosis. Just about to order Send in the idiots sounds great
All great suggestions. I have reviewed Chloe’s book at our (AAH) blog this week. I did focus less on Max’s program than other books in the genre but I liked that aspect, actually.
I recently read the Finch Memoir Prize Winner 2012 ‘Life in a Pea Soup’, which is about a couple whose daughter has severe autism. After reading this and ‘When Horse Became Saw’, I’ve come to the conclusion that I have most to learn from parents who have severely affected kids, even though my son is not. If you can reach acceptance in these circumstances you are a real hero in my eyes.
My all time favourite book is ‘Send in the Idiots’ by Kamren Nazeer. Nazeer is a young man -essentially recovered ASD – who traces some of his old classmates from an ABA school in New York in the 1980s. It’s funny, insightful, moving – the whole package. Cannot recommend it highly enough. Annoyingly I lent it to a mother at Joe’s school who has since left! She also has my copy of ‘Unstrange Minds’. Sob!
My psychologist told me to stop reading books about autism!
Ever since then I have read a lot of chick lit: difficult for me at first because I am used to reading some heavy books (I am an English teacher after all!). Now that our ABA program has finished I’m getting back into it. I want to read “Living with Max” too.
Before I was “banned” from reading autism books I read Catherine Maurice’s book which made me simultaneously sob with joy and sob with pain. She was an incredible mother and I thought that if she can do it on her own then I can certainly do ABA with therapists helping. I also read Daniel Tammet’s “Born on a Blue Day.” This is written by an autistic though. It gave me great hope because here was a fully grown man with a career and partner and functioning very well in society. Which is amazing since he had no intervention and was quite autistic, his descriptions of his early days is so interesting. So it made me very hopeful for my own daughter and what she could accomplish WITH intervention. I would NEVER read Jenny McCarthy’s book Tan. eek. That woman frightens me a bit, she has some views I cannot tolerate.
I think fictional autistic characters are really interesting. Extremely Loud and Incredibly Close is an amazing book and you can’t help but love this little aspie boy. Brilliant.
I would like to write a book, but just by looking at what other parents’ have written, it seems the market has it pretty much covered. Maybe fiction?? Or a collection of short stories? I’d love a bunch of Australian parents to each write their own version and put it in a collection…that would be cool. I’d contribute to that!!
Great post, I too love reading other parents’s stories so I’ll search out the books suggested so far. I read “Let Me Hear Your Voice” and found that hard going because both her children achieved rapid and amazing progress which isn’t our experience.
I will be interested to hear what you think of Chloe Maxwell’s book. I admire her for putting something back in terms of her charity and for raising awareness. However, I found the book focused way too much on her life and that of her husband who apparantly is some rugby hero. Not enough on Max and his therapy for my liking.
Not sure what to make of Jenny McCarthy. I admire her determination but not sure I share her way of thinking.
Clearly not a girl from NSW/Queensland Naomi! Matt Rogers (Chloe’s partner) was very big in these two states!
As for Jenny McCarthy – not a fan. Enough said.
I also read ‘Let Me Hear Your Voice’. It gave me hope at a time there seemed to be none, so I’m grateful for that, but it does set the bar way too high with respect to outcomes. I’m a science writer, so I looked closely at all the ABA research before I started Joe’s program and thus went in with realistic expectations. However, I have since met mothers who assumed that ABA=recovery after reading ‘Let Me Hear Your Voice’ and were bitterly disappointed when that didn’t transpire.
Hi
I too read everything following diagnosis. I now have really slowed down and let go a little bit of the idea that I have to know everything. I think your list is a great start and I have read most of them. Michael Whelan’s book was the first parent account I read and it really spoke to me. Not sure it would have the same impact 3 years & a home ABA program later – but at the time I cried my way through it with relief that someone else had experienced what we were going through (this was before I had met any other Autism parents).
A few I would also recommend are:
- George & Sam : two boys, one family and autism by Charlotte Moore. Amazing book about a family that had two kids on the spectrum, both very different. It was really interesting as some of the interventions that she tried worked for one of her boys and not the others. Charlotte is a journalist and writer and you can tell – it was very well written.
Unstrange Minds: a father remaps the world of autism by Roy RIchard Grinker. The author is an anthropoligist so it takes a social science perspective at looking at autism but he also interweaves stories about his own daughter who is on the spectrum. I thought this was brilliant.
Looking forward to reading others recommendations.
Tan x
Oh and I hated Jenny McCarthys book – can’t remember what it was called.