The Best Books for Parents of Autistic Children

Thank you for choosing these five books, aimed at the parent with an autistic child. I believe you have drawn both information and solace from these books.

I’ve always been an avid reader, and it so it made sense to take that focus and find out more about this world of autism when my daughter was diagnosed. In that first stage, I was reading a lot of medically-focused books around managing autism—what my child should and should not eat, and all the different theories—and it became a little overwhelming.

So I decided to step out of that world, and move towards a more empathetic approach. I sought out books by people who, like me, were trying to manage autism in their family, or who themselves had autism.

Empathy, I think, is the consistent theme of the five books I’ve chosen. They are books that try to understand autism rather than solve it. I talk in my own book too about trying to move myself from a focus on ‘sorting’ it to accepting it and seeing it for what it is.

Right, you mentioned your memoir Bigger Than the Moon which describes your own experiences parenting a child with autism. What were you seeking to achieve with the book?

So I said I was an avid reader. I’ve also always been an avid writer. One thing I did all the way through this journey was journal. It was just a natural process to help me navigate the world I found myself in. And as I was relaying my story to people, to work colleagues, to friends, people said: You should really write a book about this. Because I was getting myself involved in lots of things—advocacy for Chloe, battling for school places and the like. That’s where the idea for the book came about.

I started intentionally writing around the time my daughter reached school age. I thought: There’s something here. I would like to help parents like me, and to share my experiences.

The first book you’ve chosen to recommend is The Reason I Jump by Naoki Higashida. It was an international bestseller on publication, and is quite a fascinating case—it was apparently written by a nonverbal autistic boy with help from his mother.

Yes, Naoki Higashida is an autistic teenage boy. The title alludes to stimming, which can be a feature of autism—you might see rocking, noises, flapping of hands. From the outside, to someone who doesn’t understand, it could look pretty atypical and even quite disconcerting.

I think stimming was one of the very earliest indicators I noticed in Chloe, my daughter, who was a baby when I strated thinking about her developmental delay. As I became more enmeshed in the world of autism, I did more research about stimming and understood that it was a sensory need to feel centred, and it was a good thing—right for the individual.

Naoki talks about it from the perspective of a person who is autistic. It’s a beautiful book, and even more powerful that it is done through words that aren’t necessary expressed. It was my first experience of challenging my own stereotypes, something I’ve had to do a lot. I think parents have to go through that process to be able to help their child.

Reading this book was a pivotal moment for me.

Temple Grandin, the autistic US academic, wrote an interesting report for Cerebrum about Naoki’s mode of communication, declaring “Everybody who is working with nonverbal individuals with autism should read it.” In fact, Grandin herself is the author of the second book you’ve chosen to recommend: The Autistic Brain.

Temple Grandin is a professor of animal science. She talks about the correlation between her work and her experience as an autistic individual, and how that has been helpful in educating people about autism. She’s a big advocate of viewing autism not as a disorder but as a kind of capability, something that can have a use in the world. She role models that in how she developed her ability to work with animals.

Yes, absolutely. I see from online reviews that a lot of parents found that her insights helped them understand how the world might look from their child’s perspective.

She looks at it as a scientific process: it takes empathy and understanding to connect when you can’t verbalise. You can still have a relationship, you can still make that connection.

That is very similar to how I decided to approach my journey with Chloe, which was on an intuitive and understanding level, rather than a ‘let me fix it’ level.

Your third recommendation is a novel by, as far as I know, a neurotypical writer. However, The Curious Incident of the Dog in the Night-Time by Mark Haddon pops up all the time in discussions of autism. Professor Simon Baron-Cohen, director of Cambridge University’s Autism Research Centre, told us he’d done “a very good job.”

Yes, I don’t want to ruin the book for your readers. The story, in this one, is very important.

One thing I wanted to pull out in my own book is the impact on siblings. The siblings of children with special needs are really special people, who have to go through a process and a journey themselves. As a parent you are constantly trying to navigate the tension between your neurotypical child and your child with a need—because a child with a need often takes up all the space in the room, right? There are times when they have to.

So one of the things I was focused on early on was making sure that my son was supported. He was seven when Chloe was diagnosed, and I really wanted him to understand, just like I was trying to understand. He is a big theatre and drama person, so when he was younger I looked for literature that he could access. The Curious Incident had been adapted as a play at the time, so I took him to see it. That’s how we first got into it. He loved it.

This book is actually brilliant for any age. The story pitches the theme of autism implicitly. It’s set in a plot, a story, and the autism is not the main point. For me, that was a great way of presenting it. The story is sad, it’s funny, it has twists and turns. So I recommend it to everyone.

Yes, so, as a parent of an autistic child, this was a tool. You could use an accessible story to help other family members get on the same page.

Absolutely. It did a great job of raising awareness. And also, it helped me see that it could be an opportunity. I started the journey thinking: Oh god, this is terrible, it’s not what I planned. Then I moved to: What’s the opportunity here? What can I learn? How can I be a better person as a result?

Finding these books was a big part of that process, and being able to share these books with other people makes me feel like I’ve not only helped myself but maybe somebody else out there as well.

Your fourth book recommendation is very different. It’s a work of science writing which won the Baillie Gifford Prize a few years ago: Neurotribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently by Steve Silberman.

This book came into my life once I had gone through the process of acceptance and had become an advocate of autism. I was trying to understand the world in its positive sense, right? In the sense of looking at it as an additive, not something that takes things away from people. So this book was recommended to me.

I worked for an American company for about 11 years, and America has quite a different approach to autism than here in the UK. It’s much more autism-aware. This is a few years back, but although the UK is getting better, the provision in the US is much more established with lots of early intervention. There’s a much higher rate of early diagnosis.

Twelve years ago, when I started going through the diagnosis process with my daughter, there wasn’t really any diagnosis at all at pre-school age. So my American colleague recommended me this book, and I love it.

“It makes a lot of sense that people coming at the world from a slightly different angle might be able to bring new insight”

It’s empowering, reassuring, and it really focuses on what the title says on looking at it not as a disorder but as something different. Sometimes when you start going down this track, people want to resist. They’re like: Are you saying you don’t want it to be a disability? It absolutely is a disability, in the practical sense. These individuals definitely need support. But it’s not necessarily something that has gone wrong, it’s just gone different.

Steve Silberman interrogates that with evidence, and with examples of the opportunity that individuals who think this way have provided to the world, the knowledge that they have given to the world, the benefits… It was an affirming book that helped me manage myself and my thinking.

Of course, it makes a lot of sense that people coming at the world from a slightly different angle might be able to bring new insight, and so that means they can offer a great deal of potential in all walks of life.

Your final book recommendation is My Brother is Different by Louise Gorrod, illustrated by Beccy Carver. It was published in the UK by the National Austistic Society.

It’s a really simple book, and it has a lot of emotion attached to it for me.

I knew there was something not right with Chloe from birth. This was an intuitive thing, I didn’t know what it was. My son was always naturally good with my daughter, and he still is—they are very close—but when he got to school I knew he would be challenged by his peers. His sister was going to be different and I wanted him to be comfortable with that really early.

I had a really great paediatrician who said: There’s this very simple book by Louise Gorrod, written for children of your son’s age who have siblings with special needs. So it is aimed at the six- or seven-year-old to help them understand how to talk about their sibling.

And, you know, he loved it. He would take the book into school to show to his friends and his teacher. After that, they did a session with his class using the book. He’s still in touch with quite a few friends from that primary school, one of whom is his best friend, and they love Chloe just as much as we do. They’re so good with her, you know, and she was always comfortable with them.

So this book is for all those parents out there who are still going through those early stages. Don’t forget the sibling! They are on their own journey as well.

This feels like another theme of all your books: accepting how others might be different, and appreciating it, too.

Absolutely. And being kind to yourself, too, right? Be kind to yourself if you are the person going through this journey. If you are a person supporting that individual, be kind to them. Managers at work, colleagues, friends—you all play a part. They definitely played a part in my journey.

I’m quite determined, and I have a natural disposition to carve away at everything I do. But I haven’t done it alone. Although sometimes I did feel desperately alone—which is one of the reasons I wrote my own book. So that people understand: it’s okay to feel alone, but no, you are not.

I’ve been very, very fortunate to work with brilliant people who gave me the space to navigate this journey. I now work at a very senior level, and I have a very understanding CEO. But sometimes you can’t see that, when you are going through the process. So I encourage people to seek others out and to be vulnerable. You can’t do it alone.