Ever since my now-teenage son, Charlie was diagnosed with autism shortly after his second birthday in 1999, I have been thinking about writing a book about my husband Jim Fisher‘s and my life raising our boy. I started blogging about our “autism reality show” in June of 2005 with the hope that my accounts of our daily life with Charlie would be the foundation for such a book.
Nearly seven years later, I’ve blogged almost every day about our adventures with Charlie but I’m no longer sure about writing a book, or at least right now. Writing on a blog now called We Go With Him — originally it was titled My Son Has Autism and then Autismland — has led me to think that, for now, a daily online journal of our life with a teenage son on the moderate to severe end of the autism spectrum best represents his story. We’ve no idea what might happen in the long run or even every day: Life raising a son like Charlie is all about being ready for the unexpected, be it catastrophes or triumphs. What I’ve learned from seven years of blogging as the mother of an autistic son is, I just don’t yet know how to select from all of our experiences and put them between two covers.
April is Autism Awareness and Autism Acceptance Month. The former notion of “autism awareness” has existed for some time; the latter call for “autism acceptance,” for not seeking to cure or eliminate autism but to accept individuals with an autism spectrum diagnosis in their different ways of being and thinking — in their neurodiversity — is a different and important way of thinking about how to foster understanding about autistic persons and autism.
To start the month, here are four books about autism that I have read in the past year. The books I’m writing about are by parents of autistic children like myself. I have been fortunate to have met or been in contact with all of the authors, thanks in no small part to the internet which has been crucial in helping Jim and me to connect with a community of others with similar experiences to our own.
Photo of Seeing Ezra by the author
The very title of writer Kerry Cohen‘s Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal (Seal Press) encapsulates what I’d write about in a book about my own son.
Cohen’s book details a chain of events familiar to many parents whose children have received an ASD diagnosis: The realization that “something is different” about a young child; the excruciating process of having a child evaluated and diagnosed; the confusion about what to do. But her message is not one of how to change her autistic child to become “normal” but of how to accept him as he is. Cohen details her frustrations with therapies that don’t take into account her son Ezra’s unique ways of being and self-expressing and about various parties (“experts,” other parents) insisting that she must do this or that therapy or treatment.
Entwined in her narrative about learning to accept Ezra is Cohen’s account of an affair she pursues and of what happens to her marriage: Seeing Ezra is also a book about learning to see that there are many different ways for families to be “normal” — just to be — too.
Photo from One of Us
Many passages from Mark Osteen‘s One of Us: A Family’s Life With Autism (University of Missouri Press) were more than familiar to me. Osteen describes some hair-raising car rides with a child in deep distress; the long struggle to teach his son, Cameron, basic skills; the mix of sorrow, anger and despair parents feel on hearing school district administrators tell you that your child cannot be educated in their public schools because of “his behaviors.”
In one passage, Osteen, an English and film studies professor, and his wife Leslie give Cam a paper shredder for one birthday: It is hardly a “typical” gift, but one that shows their understanding of their son’s preferences and their wish — any parents’ wish — to make a beloved child happy. Osteen’s account of his and Leslie’s decision to place a teenage Cam in a residential school is all the more searing.
Like Cohen’s book, One of Us is not about “overcoming” autism, but about the journey to understand a child who is very different while trying to figure out how best to help him, and while trying to keep your own life, marriage and work together.
Photo of Autism by the author
Autism (The Routledge Series Integrating Science and Culture) (Routledge) draws on medical, historical and cultural research and perspectives to understand how autism is currently represented and understood. While much more academic in its approach than the other books noted here, Autism is also based in personal experience. Literature and film professor Stuart Murray writes first in the preface about his 11-year-old youngest son making an “unusual” request, asking to be carried (as his son indicates by leaning his body) to the trampoline in the garden.
Murray’s book offers a succinct tour through the basic facts that are known about autism — about the brain, neurology, types of treatment, the gender question; the history of autism both before modern medicine and in the 20th century along with the rise of child psychiatry and psychoanalysis; and the more recent development of neurodiversity and of autistic individuals advocating for themselves. He also reviews the various controversies about the causes of autism (from blaming parents to vaccines) and about “curing” autism as well as descriptions about being autistic (by Temple Grandin, for instance) as like “being an alien” and philosophical inquiries that consider how “a condition that seems unconnected to the core experience of humanity” is “in fact, when we look closer… an example of exactly that” (p. 103).
“Getting beyond the facts through which [autism] is too often reduced” can help us not only to truly understand autism, but to best accommodate autistic persons.
Photo from The Thinking Person’s Guide to Autism
4) The Thinking Person’s Guide to Autism (2011) edited by Shannon Des Roches Rosa, Jennifer Byde Meyers, Liz Ditz, Emily Willingham and Carol Greenburg
The Thinking Person’s Guide to Autism (TPGA) is a hands-on kind of book that brings together contributions from autistic individuals, parents of autistic children and professionals; it is edited by parents Shannon Des Roches Rosa, Jennifer Byde Meyers, Liz Ditz, Emily Willingham and Carol Greenburg. The essays offer practical and honest advice about the vast web of concerns a parent of a child anywhere on the autism spectrum and of any age has, from “first steps” after your child is diagnosed; to feeding issues, medication, travelling, meltdowns and planning for the future; to various therapies — speech, Applied Behavior Analysis, DIR/Floortime, occupational therapy — to autism service dogs; to spotting “autism cults” and being on the lookout for pseudoscience; to writing goals for your child’s Individualized Education Plan. (I’ve contributed essays on “Special Ed 101″ and choosing a school for autistic children.)
TPGA also includes essays by individuals who are themselves on the spectrum. The editors maintain a website where they regularly post new contributions about the full range of issues about autism.
As a just-published CDC study has revealed, autism is now more common than ever, with at least 1 in 88 children in the US now receiving an autism spectrum disorder diagnosis. That’s far more children than when Charlie was diagnosed in 1999 and, back then, we would have more than appreciated reading the personal experiences, historical overviews and practical suggestions offered in these four books.
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Photo of some of the author's books about autism.