Autism means different things to different people. As a quote from In a Different Key: The Story of Autism says, “If you meet one person with autism, you’ve met one person with autism.”

Trying to define a history of autism then, is like trying to define a history of humanity itself. What In a Different Key: The Story of Autism does manage to do is, through a series of gripping stories, discoveries, and memorable portraits of remarkable individuals, show how our understanding of autism has changed since it emerged, and how parents have been crucial to almost every positive development in policy, practice and research.

The story is primarily told through the experiences of parents and the work of researchers and medical professionals. The book chronicles, painfully at times, the groping around for understanding that has characterised much of our documented research on autism. For many years the scientific consensus was that autism was caused by “refrigerator mothers” whose perceived lack of parental love and attention drove their children to turn away from the world. This damaging idea persisted for years until a researcher and parent of a child with autism, Bernard Rimland, “set out to get his hands on every published report, every study, every case history in existence that even hinted at autism” and published a major study that definitively took down the mother-blaming argument.

The book’s ambition means it is not a short read – inevitable, given the changing nature of how people understood autism. As the book highlights, “The concept’s inherent elusiveness, the vagueness in how it had been described….has meant that anyone could say anything about autism, and eventually probably would.”

If there is a ‘hero’ in this book, it is parents. If there is a ‘villain’, then it is autism itself, which causes the book to falter a little in its closing chapters. Having focused throughout on the ‘fight’ against autism, the book has some trouble shifting tone once the notion of the “autistic spectrum” emerges in the 1980s with the work of Lorna Wing (“nature never draws a line without smudging it”) and the public emergence of more ‘high-functioning’ spokespeople who consider their autism as part of their identity, and wish to change the agenda themselves, rather than have themselves spoken for by others or to seek a ‘cure’. As Temple Grandin, professor, author and autism activist puts it, “If I could snap my fingers and be non-autistic, I would not. Autism is part of what I am.”

Adults with autism do not become the focus through which the story is told until later in the book, and this also highlights how society’s focus has always been on children with autism, rather than adults. The book uses key statistics about increased rates of diagnosis and employment for people with autism to highlight a need for a shift in our understanding of support for adults with autism.

This in-depth history pulls off an impressive task in paying tribute to those who fought for the rights of those with autism and contextualising how our society’s understanding of autism has evolved, and is an excellent read. Moreover, it highlights the power of parents to achieve change – something that is still happening today.

Jim Paterson works in the Communications team at Family Fund.

Find out more about In a Different Key: The Story of Autism.

Read Autism's First Child about Donald Triplett, the first person ever diagnosed with autism, by the same authors.