OAARSN Book Review

Thelma Wheatley, My Sad is All Gone: A Family's Triumph over Violent Autism. Lucky Press. Fall 2004, 284p. $18 US. ISBN 0-9760576-0-3.  www.luckypress.com/wheatley  Available also from Parentbooks, Toronto; phone 416-537-8334.

Reviewed by Heidi Klaming of Guelph

Thelma Wheatley’s book is a personal narrative about parenting her autistic son Julian, whose violent rage outbursts accompanied by self-mutilation escalate in his teenage years, so that raising him and finding age-appropriate placements for him become next to impossible. What is so very disturbing about Thelma’s story is that AUTISM/IMPOSSIBLE is intrinsically interwoven into Julian’s diagnosis—AUTISTIC/RETARDED.

For parents who have never even heard of autism, the sudden impact of the totally unexpected confirmation of the severity of their son’s condition brings with it a foreboding that from this moment on becomes part of the family experience. By sharing the intimate details of her family’s life, Thelma transmits to the reader what this feels like and why she believes that it is an integral part of issues surrounding autism at the time of her son’s diagnosis. Her personal researches into autism inform much of the book and support her findings.

Several factors help us to appreciate and understand the parents’ dilemma. Julian was four and a half years old in 1976 when his condition was confirmed. Early intervention that would have benefitted him was not available at that time. The sense of wasted time adds to the distress. Also, the minimal contact that Thelma and her husband—both teachers—have had with the “retarded” in no way matches the abilities they witness in their son.

What begins to be apparent is that the experts—medical health professionals and educational advisors from whom the family expected direction—present the same conflicting and confusing mix of information that was already part of the parenting experience. Once Julian’s condition had been identified, it seems that the entire support system is irrelevant as, according to the famous diagnostician, Julian would never amount to anything anyway! The firm recommendation to send him to a treatment centre accompanies the diagnosis and is documented in reports that only the experts are privileged to see. Any concerns or problems related to the extreme challenges of parenting Julian are subtly and conveniently silenced or dismissed by referrals to a placement equipped to handle him. Over and over again, parents receive the message that they are defying authority in choosing to raise their son and overestimating their parenting abilities.

What is remarkable about the parental perspective, as opposed to that of the experts, is that it embraces Julian’s condition as helplessness rather than a case of hopelessness. The parents’ dedication, determination and strength in supporting their son’s unique needs, despite the roadblocks they meet at every turn, is fuelled by their love for this child, whose bright intelligence radiates through the mask of very unusual and bizarre behaviours.

Fortunately, another diagnosis by Dr Joseph Huggins can help Julian in his teenage years when his rage outbursts are at their most extreme. The thorough assessment includes observation and explanation of the biochemical and neurological causes that are manifested as rage. A drug regimen specifically designed to stabilize Julian’s biochemistry is implemented. His parents have to monitor his behaviour carefully to ensure the dosages are appropriate. For the first time since Julian’s initial diagnosis, parental involvement is acknowledged, valued, encouraged and supported. The ultimate sigh of relief comes with Dr Huggins’ reassurance that Julian is neither retarded not psychotic.

By voicing all the issues and challenges surrounding her son’s Autism/PDD, Thelma has successfully disentangled the impossible out of autism to place it in the very demanding context of the family’s parenting experience. We are shaken by what we read.

Publisher's description: A powerful compassionate book, offering searing insight into the education of autistic children and into the world of psychiatry.  It is endorsed by
Temple Grandin, autistic icon and author of Thinking In Pictures, who writes: "My Sad is All Gone is essential reading for anybody who needs to learn about pharmacological treatments for severe rage in teenagers and adults with autism."

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