If the title didn’t give it away, this is what I term a ‘parent biography’ about an autistic child where the parent writes about how they ‘cured’ their child.
Besides ABA, if there’s one other word that is almost guaranteed to cause controversy and strife within the autism and autistic communities, it’s ‘cure’. There are a worrying number of books out there that claim that they can cure autism, or are written by parents who claim their children are cured of their autism. Since there is no concrete evidence for the existence of any sort of cure – it logically follows that these claims must be false.
Will there ever be a cure? Probably not, if anything there would be prevention via prenatal testing or genetic engineering. Do people want a cure? Well, that depends on who you ask. Autism Speaks (again very controversial and for good reasons) certainly seem to think it’s the way forward, and they reach an awful lot of people the whole world over. A lot of parents are desperate to cure their children, but other parents see autism as simply a part of who their child is and not something that needs curing.
More importantly, do autistic people want a cure? That’s even more difficult to break down. From my reading, I would say that a lot of autistic people who currently have the means to communicate have made it quite clear that they do not want a cure. But there is also a not insignificant minority of autistic people who have the means to communicate who do want a cure. What about people who haven’t been given the facilities to communicate or whose communication is not generally understood? Do they want a cure or not? If a cure were to become available, is it morally and ethically right to give people who have not been supported to express their opinion a cure without being certain, that is what they want? At this point, it occurs to me that I should be writing a review not breaking down the controversy surrounding cures or not, so I’ll return to that.
Regardless of the fact that there is no evidence for a cure for autistic children, the front cover of this book pretty much confirms that that is what this book is going to be about. It is a biography of the life of Clay Whiffen, written by his mother, Leeann. I’m going to get my overall feeling of the book out of the way – from the foreword I, knew I wouldn’t enjoy it.
“Almost overnight, something was stealing the future of at least 1 in 150 of our children. Why weren’t people noticing. The media talks all the time about epidemics like West Nile Virus, SARS, Hantavirus, and others, in spite of only a handful of individuals being diagnosed in the whole country. If Al Qaeda were stealing these children, we would stop at nothing to get them back.”
There’s just so much wrong with that statement, but just the comparison of autism with being kidnapped by a terrorist organisation pretty much set the scene for a book that was not going to be about a parent in anyway accepting any part of autism.
It is like every stereotype about autism has been hit throughout this book, starting with his behaviour “mysteriously” deteriorating everytime he has one of his immunizations. This then progresses into her finding the infamous (and disproven) study by Andrew Wakefield, and beginning to distrust immunizations.
When autism is mentioned, Whiffen reacts badly each time. The way she talks about the autistic child of another person is especially unpleasant:
“The more I think about our conversation, the more defensive and angry I become. It’s not autism! It can’t be! Images of her son loudly repeating unintelligible phrases and flapping his hands out in the street, oblivious to traffic, chug through my thoughts. It can’t be! Besides, she seems grossly happy to think she has found some other child with autism, almost in an effort to help ease her own pain.”
In the mentioned interaction, there is no evidence of anything other than one mother offering an insight to another. Whiffen has no way of knowing that this mother is suffering pain over the existence of her son and his autism, and the whole extract is just unpleasant to read. Throughout the book th,ere are frequent examples of Whiffen’s judgements of people.
Then she discovers ABA and becomes determined to source the funding to carry out an ABA course. Before she gets the ABA course up and running, she works with another group ‘Kids on the Move’ which doesn’t like taking Clay to because she is upset that they make her force Clay through an obstacle course against his will and make her hold him in a chair to sit. (NB: I agree with her dislike here, read on…)
This response to this abusive and power-asserting practice is good – in the same situation, I would have just said “Not happening” and refused to do it because forcing a child to do something like that doesn’t benefit anyone. However, given her completely reasonable reaction to this you would expect a similar reaction when the first session of ABA with Clay goes like this:
“Come here”, Sarah calls to him, in a dry monotone voice. Clay continues screaming. She gets up from her chair, picks him up, and carries him to the other chair. His body is writhing frantically in her arms. His legs and arms are thrashing. She places him in the chair, holding him as firmly as possible without hurting him. She sits down facing him, not once taking her hands off him. Tears drown my eyes as I watch him continue to struggle. Everyone else is completely silent, watching bug-eyed with wonder and sadness.Clay’s screams of anguish sear my soul.
Sarah is unruffled. She’s slow and deliberate in her motions. He’s all over her, pulling her hair and slapping her face. She remains gentle, yet firm and consistent. Clay tries everything from playing limp as a noodle, to throwing his head and body backward repeatedly, hoping to wear her down.”
This continues for over two hours, and this is a program that Whiffen looks at and chooses to follow – despite absolutely slaughtering the ‘Kids on the Move’ program for doing a similar thing. This level of cognitive dissonance comes up time and again through similarly themed ‘parent biographies’.
To add to all of this, there’s the inclusion of Biomedical Treatment where the family become convinced that the vaccinations were what caused Clay’s autism, something else which continues to be point of controversy in some parts of the wider autism community despite being unsupported by evidence or research (over and over and over).
The book becomes even less pleasant to read as Whiffen begins to belittle parents who aren’t doing “as much as she is” to cure their children. As if their acceptance of autism is the worst thing they could possibly do as a parent. I won’t talk all the way through the rest of the book but it’s fairly obvious from the tone of the book (and even from the front cover) how it’s going to end. Of course, Clay loses his autism diagnosis.
I find reading books written by parents a bit of a so-called “mixed bag” in terms of whether I like them or not, and ones like this I find more unlikeable even than ABA books. I read them because I think it’s important to understand what the parents of the child I work with might be thinking and feeling – even though it rarely helps me to change their minds and become more accepting. The entire tone and content of this book just left me hoping that none of the parents I know feel the same way, but I imagine some of them do.