The Autism Experience Interview

The Autism Experience Interview

The Autism Experience is a guide to bringing up children with Autism Spectrum Disorder written by parents who have themselves navigated the medical maze, braved the behavioural problems and survived the emotional rollercoaster associated with caring for someone with autism.

Each chapter is based on a question frequently asked by the parents of ASD children and consists of a clearly written, informative introduction followed by the relevant real-life experiences of parents from around the world.

These allow the reader to learn from the experiences of those who have travelled this road before them - how they have come to terms with the diagnosis; how it has changed their everyday lives, for better and for worse; their strategies for coping with autism.

Rich with useful information and personal experience, recounted with wit and raw honesty, The Autism Experience is both an invaluable practical guide and a source of comfort for parents learning to live with autism.

Valerie Foley is a busy mother (her son Billy has ASD). She also devotes much of her time to helping the parents of other autistic children and is particularly involved with the Someone To Turn To project, which provides emotional and practical support for such parents by putting them in touch with volunteers who have had similar experiences.

The Autism Experience
Exisle Publishing
Author: Valerie Foley
ISBN: 9780980812930
Price: $34.95

Interview with Valerie Foley

Question: Why did you decide to put together The Autism Experience?

Valerie Foley: I am a member of a couple of internet boards comprised of other autism parents from all over the world. The longer we talked, and shared experiences, and helped each other out, the more I thought, 'Man, this is great information.' It is the sort of stuff that no-one tells you, a bit like lots of parenting issues. So, around two and a half years ago, I proposed to the other women on these boards that we try compiling some of our experiences into some kind of resource. Originally, we were thinking we'd keep it as a resource for ourselves, but we all agreed that approaching publishers was a good idea too.

Jane Curry Publishing, who had published The Australian Autism Handbook (a truly brilliant factual resource for Australian autism families), thought the idea of The Autism Experience would serve as a great companion to the AAH, and so... The game began!


Question: How important was it to speak with other parents of children with autism?

Valerie Foley: Autism is a disorder that changes the shape of your family. It requires you to speak differently, to behave differently and to change your social habits - in order to maximise your child's potential for growth and learning. It means, for the parents, that you are often isolated. Early Intervention can help to provide the 'mother's group' style of social interaction with other parents, but even so, there are fewer opportunities for adult interaction generally. Internet boards, when they work well, make it possible to have those supportive relationships. It means you can ask the hard questions, you can seek support, you can ask to be challenged, you can air your grievances, celebrate your successes. These are all important things - crucially important to feeling like you are moving forward. In the world of disability parenting, it's often very very important to feel like you are moving forward.


Question: Why was it important to provide raw honesty with the autism personal experiences?

Valerie Foley: There's a lot of mystery in autism. There's a lot we don't know. Even though each child is different (the saying goes: if you've met one child with autism, you've met one child with autism), the best chance we all have of learning, and facing things head on is to be honest with each other. The doctors will say one thing, the therapists will say another. The teachers will have a lot to say, and your mother-in-law will almost definitely add her two cents. Often, the most reliable touchstone is the honesty of the other parents on the journey. It's the lived experience that resonates the most.


Question: Can you talk about your experience with Autism?

Valerie Foley: My son Billy is seven. His principal impairment is sensory, so loud noises are particularly debilitating to him. His language is delayed, but pretty functional. He learns a lot using his photographic memory - he takes things in as a whole, moves it around and regurgitates it in his own way. It makes for some very interesting detective work sometimes, trying to work out where some phrase or other has come from. He was attending a wonderful mainstream school, but as the school refused to make accommodations for his learning needs we had to withdraw him. He now does Distance Education while we get on top of a range of medical issues (he had Transverse Myelitis when he was three, which has left him with immune and neurological challenges, working alongside the autism related ones). So, for us, autism is a medical journey as well as a behavioural one. From what I hear from other parents, it's the same for a lot of us.


Interview by Brooke Hunter