Now let’s turn to Carly’s Voice by Arthur Fleischmann and his non-vocal apraxic ASD daughter (2012). This Toronto-based story, a Mitchell ‘confessional memoir’, has a twist: thanks to dedicated SLP Barb Nash-Fenton and many ABA and non-ABA workers in her hard life, Carly one day grabbed a VOCA and typed HELPTEETHHURT, stunning everyone. Carly eventually and only on her own terms typed on, applying years of SLP communication therapy (PECS, etc.) that led to her ‘breakthrough’ at age 10. She typed that first VOCA message on the alphabet letter ‘level’ her worker was about to delete as ‘useless’, for more pre-packaged pictures. Ouch. She had learned to read from books her father read her, night after night, and from exposure to the text under her picture symbols, and Dymo labels. She had been watching, and learning, in silence. She then wrote to communicate, in clearly functional contexts, like emails to Dad off on a business trip – but at first might not write anything for Dad in person. She was also very firm that this is HER inner voice, answering one emailed enquiry with:
“I don’t use facilitated communication…I spell on my own without any one holding my hand or whispering in my ear.”
At 20, her latest technology (IPad, Proloquo2go, etc.) is listed at the end. This is a Canadian classic, by Father who can write and Daughter who ‘tells it like it is’.
A day or three with Carly’s Voice will remind you why you are an SLP and what it costs families with a child with autism, in all senses of ‘costs’.
David Mitchell is wrong – we can all learn from the Fleischmanns and Carly’s lifelong struggle with severe ASD + Apraxia. Emily Rubin, speaking in Richmond recently about SCERTS, quoted Ros Blackburn from the UK, who summarized her life with autism so (put this on a wall in your school/centre/office, please):
“You would all react as I do, if you were pushed as far as I am.”
Carly too is NOT trying to do what her body often does, all by itself. The need for strong external control, by medication and programming, remains. This book is sobering in its timeline, complexity and final Q&A ‘conversation’ with Carly, who blogs, emails and writes, bypassing sadly intractable apraxia. What ‘My Left Foot’ did for Cerebral Palsy, this book does for non-vocal ASD. Watch out for Ellen De Generes; treasure Carly’s twin sister Taryn. This book is for families who feel their child is ‘worse’ than any other. And yes, it has a happy ending. I recommend this very useful ‘confessional memoir’ to SLPs, SLP students and parents.
Book 3, Love, Anthony is the 2012 third novel, often overlooked, by the author of Still Alice: Lisa Genova. Here the Harvard PhD neuroscientist turned novelist writes about two families brought together by a young boy with ASD. As always, LG merges research, fact and fiction to make an accessible story about unique lives. We think we know the impact of ASD on families. Hmm. This novel is extraordinary in its range of grief and loss and living/loving, its heart a silent or screaming boy who lines up white stones on Nantucket Beach. Both mystery and love story, it will haunt you. This is why Lisa Genova writes, to educate us and to engage our empathy, sympathy and love. ASD society buttons in Europe now all read, simply, in English, “I love somebody with autism.”
Saving the best for last, SLP Barry Prizant’s first general book, Uniquely Human: A Different Way of Seeing Autism, due out August 1st, already has rave reviews; ‘for parents, the first book to read about autism; for experts, the last one you need’ as one of 13 famous reviewers say on Simon and Schuster’s website. It summarizes, for parents and others, what we now know about ASD reactions to an overwhelming world (see Blackburn above). As noted in SCERTS, we must also change the world around the child, and ourselves. Prizant changed us all.
All books listed can be found/ordered in BC for $25 or less. Tell us yours.
Reviewer: Retired after 40 years in ASD, John collects user-friendly ASD books and programs to share at Zagreb University in Croatia. He first heard Prizant’s name in Prince George from a Prizant graduate, the late, great Boyana ‘Cookie’ Kukich, SLP, Croatia, Paris, Boston, Prince George and Toronto. Hvala Ti.