Carol Johnson and Julia Crowder - Autism: From Tragedy to Triumph
(1 Epinions review)
Autism: From Tragedy to Triumph
Dec 14, 2003
Review by Bonnie Sayers
Rated a Very Helpful Review
Pros:Interesting first hand account of Ivar Loovas and his techniques for reaching autistic kids
Cons:Not enough detail, neglected to mention how harmful smoking is around kids
The Bottom Line: To get a sense of how autism was perceived in the 1970s as a parent and how they were influenced by Doctors and therapists who claimed to be knowledgeable.
Many times while browsing around my local pubic library I noticed the book, Autism: From Tragedy to Triumph, but the cover photo of the child led me to believe this was written long ago. I assumed this story would not really pertain to my current family situation as the single parent to two autistic kids, especially at this point in time. With other books I am usually drawn to the image of the child or bored with the same blue puzzle cover on books specifically geared to adults, this one had a negative effect on me for a long time.
Recommend this product?
During one visit I could not find anything of interest so I picked up Autism: From Tragedy to Triumph to pursue it further. I tend to shy away from books that hype their kids were cured of autism, since I do not follow that belief and do not wish to waste my time following such stories. The cover photo is in black and white of a small child in a 1950s style outfit posing for a photograph.
This is co-written by Carol Johnson a writer and Julia Crowder, the parent to the children in the story. I could not figure out how the writer fit into this book, as she was never mentioned. The foreword is by Ivar Lovaas, Ph.D., who has been affiliated with UCLA and the Autism Project for many years. Twenty chapters in all that are easy to follow along, plus a small glossary of terms used with the afterword written by the child that had autism for a psychology class during his second year of college.
I chose the book after noting on the first page of the foreword how Julie was living alone in Los Angeles in 1975 when she first contacted the clinic to get help for her son Drew. I arrived in Los Angeles ten years later and continue to raise my children here alone, so I felt there might be something to gain locally from reading her story, Autism: From Tragedy to Triumph. I do have some experience with disabilities back during the time period covering in the book since my sister is considered handicapped, still resides with my parents in her late thirties. In the early 1970s my sister was found to have a brain tumor, which led to a few years back and forth visiting her in the Hospital in New York. After a few operations she was left blind, entered special education and special schools.
During the time my sister was in the Hospital we learned about anorexia due to the other patients on the same floor that stayed for long periods of time as well. I never recall hearing the term autism during those years.
Part One within Autism: From Tragedy to Triumph covers the long road to diagnosis with Part II covering treatment and includes excerpts from the parent therapy log. There are also a few black and white photos in some of the chapters. The photos did not really have any affect on me and could have been left out. Also quite bothersome to this reader was the habit of smoking cigarettes that Julie had, plus the fact that never was this discussed on how detrimental it could be to her children.
I would advise future readers of Autism: From Tragedy to Triumph to read the foreword after the book was been finished. I found it confusing reading about the test scores and mention of whether Drew was actually autistic or not better digested after learning the family dynamics beforehand. It is hard to comprehend on one page the dedication to several people who volunteered in the fight for Drews life and then learning he has been cured and no longer viewed as being on the spectrum. I find that hard to believe as a parent and really did not focus on that aspect.
Neither of my children have now or ever received behavioral therapy, which is known as discrete trial training (DTT) or applied behavior analysis, (ABA), so I wanted to broaden my knowledge on this therapy. I learned from the book and have known prior to perusing that this form of therapy is best when the child has first become diagnosed in the early years, even before Early Intervention (EI). It is called intense because it is done every day for about three hours. Unfortunately Autism: From Tragedy to Triumphdid not delve too far into the therapy, but centered more on the feelings of the mother through out the process of raising her kids and dealing with the stigma associated at the time known as Refrigerator Mothers. She left her husband who was not very involved with the kids and did not believe Drew was different from other kids. She did move to another State and the book glossed over much of their lives.
The only parts I could relate to within the pages of Autism: From Tragedy to Triumph was doing most of the work herself by seeing professionals and caring for the daily lives of her children and the hassle of driving on freeways with a child that might open a door or get out of their seat. I did feel for Julie when they first started working at the autism clinic at UCLA with her viewing from the two-way mirror and cringing when her son would cry and they would continue at the same pace.
Dr. Lovaas comes across as a caring and understanding professional and one of the first Julie came in contact when learning about autism. I did not agree with the requirements they maintained for being in the program. Julie was not allowed to mention that Drew had a disability when she enrolled him in school. I am not sure I would have done the same thing, but she maintained that secrecy and Drew supposedly turned out to be a normal child. The book really does a good job of sharing the struggles on a daily basis in the early years while raising three small kids and the sacrifices the siblings had to endure. In order to enroll Drew in the autism program Julie was informed her other son who was younger would have to be in a daycare program so she could concentrate fully on Drew. When her daughter ended in the hospital due to an accident in the bathroom she had the therapy continue in the home for Drew while she stayed at the bedside. The husband never did much to assist and was not mentioned very often.
I would have liked to read more about the progress Drew made with the therapy. It just seemed to focus much on the autism in the beginning sharing the habits of the child that clearly indicated he was autistic and then after an unspecified amount of therapy he no longer had the diagnosis. Apparently I missed something in the book to have it happen so quickly. I was not happy when I read how to keep Drew focused on therapy Julie would not be able to feed him in the morning and the appointment was set closer to the afternoon. The therapy seemed very rigid and not flexible with more focus on that than the child, but they triumphed in the end so what do I know.
It was an interesting read to see how families coped in the 1970s and 80s before autism was a term I was familiar with. It is helpful to understand what other parents before us had to endure and paved the way to destigmatize the Refrigerator Mother theory.
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