by Sandra Thom-Jones
Reviewed by Eileen Quinn Knight, Ph.D.
As a book to learn about autism this one does an inspirational job of informing people about people battling the illness. Many people who read books on autism are seeking to understand the meaning of the diagnosis that they or a loved one has just been given or is considering being assessed for. Part1 tells you a little bit about the author, including how she came to be diagnosed, and why she chose to write a book about her experiences of growing up with autism. While the author subscribes to the social rather than the medical model of autism the next two parts of the book follow the two broad diagnostic categories I DSM-5 ‘restricted repetitive behavior’ and ‘deficits in social communication and interaction’. The author has done this not to medicalize autism but rather to give an understanding of what those very formal scientific phrases mean in the lived experience of an autistic person.
Part 4 focuses on the experiences of different ‘life stages’; these chapters may have greater relevance to readers who are living in or approaching those stages, dating, parenthood, loss and other life experiences or want to support someone who is doing so. Part 5 contains the bits that did not seem to fit in the other sections, a bit like the ‘hand on the doorknob’ questions when you go to the doctor. One thing you will notice about this book is that there are blank spaces and blank pages, this is not a printing error. The author imagines that many readers will be people like me who are growing in to their autistic selves. When the author first started reading books about autistic adults, she often found parts in her life or helped her to make sense of her feelings and experiences. It took a lot of effort to overcome years of conditioning and bring herself notes to herself and having to write in tiny print to fit her thoughts into the margins. The blank pages are for the reader to write notes, draw pictures and jot down ideas to discuss with the family.
As the reader reads, keep in mind that these are her interpretations of the world and her place in it. As American autistic researcher StephenShore famously said, ‘If you’ve met one person with autism, you’ve met one person with autism. Some of her experiences will resonate with other autistic people; other experiences will not. We each have different strengths and challenges. Even within the family, these are differences in experiences and perceptions. They are also similarities of experience, things that differentiate unautistic people. The author is also aware that she does not know what it is like to be a neurotypical person, so her understanding of the non-autistic world is inherently biased.
In Growing in to Autism, Thom-Jones tells the story of gradually realizing that she was autistic, and that she experienced the world in ways that were markedly different from neurotypical people. This was a profound awakening, throughout her life she had been masking her true self and the effort had come at great physical, mental and emotional cost. Applying her skills as an experienced and expert researcher, Thom-Jones delved into the literature on autism in adults, learning much more than she already knew as a parent of two autistic boys. The book is both personal and funny, endearing and enlightening memoir, and part rigorous explication of the nature of autism, Growing in to Autism is a book for all people, memorably conveying the need for better understanding and ways of making space for a group of individuals in our society who have so much to offer.