Every morning, I sit down with my coffee and read the news. On this particular day, I spotted a Guardian article about a mother who had written a book about her experience of raising an autistic son. After the twin shitstorms of To Siri With Love and Autism Uncensored, I was feeling pretty defensive about the possibility of another “Autism Warrior Parent” book.
But then I read the article. The author had spoken to autistic adults, realising that we’re an untapped resource of information. This sounded pretty interesting. I took to Twitter to ask if anyone knew anything more about the book. Yes, tweeted the author. Would you like a copy to review? So she very kindly got the publisher to send me a copy and I got cracking.
In the very first paragraph of the introduction, bam, there it is; the author says that the problem of a non-autistic parent raising an autistic child is the difference in communication. Already it’s not described as a deficit. Holy shit, it’s so nice to read stuff like this. She describes how she ditched the first draft partway through after realising that she was approaching this the wrong way, and that interviewing only non-autistic people about autism was a mistake. There are stories and quotes throughout the book, and an entire chapter (“What is it like being autistic?”) in which autistic adults are handed the mic.
The first few chapters are full of information on the basics of autism and the diagnostic process. One sentence jumped out at me, and I think this is SUPER IMPORTANT:
“I can understand why the medical community focuses on not giving false hope at a time when the future is unknowable, but sometimes I think clinicians could worry a bit more about giving false despair.”
This is one of the reasons I always recommend parents of newly diagnosed children talk to autistic adults. The doom and gloom you can get from the medical community is enough to turn even the most level-headed parents to desperation and depression. I’m so glad the author has pointed this out.
There is a whole chapter dedicated to sensory differences! I love this. I feel like it’s often a neglected subject when it comes to non-autistic “experts” talking about autism; too much focus is put on differences in socialising. Explanations on what sensory processing differences are like for autistic people are interspersed with advice and suggestions on how to support an autistic people dealing with sensory overload. Obviously all autistic people are different, but the general points of not talking too much to someone having a meltdown or not preventing an autistic person from stimming are fantastic general advice.
I have to admit, despite all the positive stuff so far I did do a sharp intake of breath when I turned the page to find the next chapter was titled “Interventions”. I was kind of dreading it. This is because of the foreword by Ambitious About Autism, a charity who uses ABA and PBS, both of which are not recommended by the Autistic community. Deep breath, and dig in to the chapter. Within the first few paragraphs, it is emphasised that the aim is to help autistic children, not make them behave as if they are not autistic. So far, so good! The author states there is no perfect intervention and that it’s more important to work with someone you trust. She warns against panicking and choosing therapies based on a fear of what the future might be like for your autistic child.
The next few pages contain info on different types of therapy including music therapy, yoga, Lego therapy, social skills classes and executive functioning classes; but there is no mention at all of PBS or ABA. This seems a bit strange to me, since these are often promoted by autism charities, mainly in the US but increasingly in the UK. The general advice on choosing an intervention that is respectful and doesn’t cause harm to the autistic person would seem to exclude ABA but it would have been good to hear the author’s take on a controversial topic that often divides the autism community and the Autistic community. I’m not sure why it isn’t mentioned.
Some of the other therapies sound a bit intense to me, starting at a very young age. I’m not convinced that they all fit the criteria at the beginning of the chapter. I guess the problem is that so many of these interventions are new so we don’t know how effective or even safe they are in the long term. This is why it’s so important to listen to autistic people on this subject.
Because this is a book for parents, a large part of it is dedicated to the education system. My children are home educated and have never been in the school system. Not even pre-school. I’m aware that the school system is letting down autistic children because of the number of parents who end up withdrawing their child from school and then coming along to local home ed groups. I’ve heard a lot of stories but I had no idea of the full scale of the problem until I read the chapters on school.
I will say it now in print, I totally get why autism parents need support groups. It’s not because having an autistic child is awful, it’s because they are fucking exhausted from having to constantly fight for even the bare minimum of support that their child is legally entitled to. I’m also really, really relieved that we never bothered with school (some more info on home education would have been nice but I realise that’s not what the book is about). There is some advice on choosing a good school but to be honest, it just sounds as though it’s advice on trying to make the best of a bad situation.
There are also some fantastic chapters on often neglected topics like mental health in autism (SO important!), autism in women and BAME groups, NT siblings and holidays.
Some authors of other autism parenting books boast about their honesty when they are challenged on their cruel content. Jessie Hewitson is honest without saying “having an autistic child is bloody awful”. There’s no unnecessary personal details about toilet habits etc, her son is spoken about with love and respect throughout. But there’s also no pretending that everything is brilliant; the world is tough for autistic people and parents have so much work to do to try and support their autistic children while dealing with opposition from society. And yet, the author manages to talk about her emotions without making it all about her, which is not something you see a lot in autism parenting books. She obviously cares deeply for her son and wants the best for him, but goes about this without acting like the best thing for him is the most convenient thing for her. Sure, there are compromises to be made just like in any family; but everyone is compromising, not just the autistic child.
The language used is positive, with identity first language preferred by most autistic people, talk of differences and not deficits, and generally not treating autism as if it’s this horrible, family-ruining monster. What is often described as “problem behaviour” in other books is reframed here (more accurately) as the result of an autistic person communicating there is a problem. This approach is going to be far more helpful than just trying to treat these “problem behaviours” without looking for the reason behind it.
The advice she gives comes across like they’re helpful ideas rather than prescriptive instructions. This is general advice on supporting autistic people, not an instruction manual, and the author never speaks like she knows better than everyone else on what to do. In fact, she is often self deprecating, calling herself “an averagely flawed parent”; I disagree. I think what she’s done here will not only improve life for her own son but for many other autistic children. You’re doing a grand job, Jessie.
If you’re going to buy an autism parenting book, please make it this one.