Shash’s BookShelf Mondays: A Child’s Journey Out Of Autism
April 8, 2009
I was approached by a very nice person I know and asked to review a book they had, and I happily agreed. As an avid reader, I’m always up for reading anything that people want to send me, or even what my local library or Amazon may have.
(Amazon.com? I love you. Let’s go make out.)
However, when I received the book, I have to say I was not happy. The title alone made me cringe. I read the back cover. Then I read the forward. Then I set it down and walked away. I quickly surmised that I was going to have to try to read this with an open mind and report back what I thought. Then I read the book.
I knew it was not going to be easy.
The title of this book is called A Child’s Journey out of Autism and it is written by Leeann Whiffen. This book is the story of her son, Clay, who after many visits to doctors and specialists was diagnosed to be on the Autistic Spectrum. The book chronicles their journey through treatments and therapies to help him break out of the shell that his parents feel that vaccines given to him at a very young age created.
It is a well written book, and I definitely relate to and sympathize with Leeann and the rest of Clay’s family. Leeann gives you a front row seat to what it is like to be part of a family struggling to understand what is going on and the feelings of hopelessness parents can have when no one understands what to say, what to do or how to help. It can be difficult living with and parenting a child on the Autistic Spectrum; and yet, there is joy and so much to learn from them, it is the equivalent of receiving a rare and priceless gift. But a lot of the time it definitely doesn’t feel that way. Leeann explains that beautifully.
However, that being said, there is some things about this book that I do not like*, the first being the part where Leeann feels that she has “cured” her child of Autism.
Yes, I did use air quotes. Yep, I sure did.
I know this because I live this. My teenaged son is High-Functioning Autistic. So I definitely have some experience in this arena. You could say I walk the walk and talk the talk. I’m “living the life”, as it were. I’m in the trenches.
Leeann does discuss in great detail the methods used to help her son Clay break out of his shell. Many of those intervention methods include; ABA, Floor Time, Gluten Free/Casein Free Diet, etc. She explains beautifully her pain, her struggles, and what couples go through when they begin that long journey into the Autistic world. Her struggles with her doctors to even see that there was something wrong, and the bureaucratic red tape one has to go through with insurance and schools; as well as her tenacity to put a personalized program together for her son make this a must read.
And yet, as much as I want to, I can not recommend this book to you.
The reason I cannot recommend this book is because she has used the word cure in regards to Autism, and I disagree with her so strongly about this. I can not help it. I feel that saying someone has been cured of Autism is incredibly irresponsible, and I can not and will not be a party to that. I’m sorry.
No matter how much I can relate to her struggles. No matter how much I agree with many of her techniques; no matter how much I want to applaud her for never giving up, I can not, in good faith, recommend this book. Unless you have a very open mind. Unless you are not looking to cure your child of Autism. Unless you are realistic and understand that this is a lifelong issue.
Therapies for children on the Autistic Spectrum are not “one size fits all” and books and titles like this continue to perpetuate that myth. I’m thrilled that Leeann found the right “formula” that has worked well for her son, but there’s a very strong chance that formula will not work for many children who are also on the Spectrum. To essentially say “Do what I did and it will cure your child of Autism” is the equivalent of selling snake oil at a country fair. You do your audience a huge disservice. I’m very interested in having hope; just not false hope.
Had she just taken out the word cure and not made it a Child’s Journey out of Autism; but instead made it a Family’s Journey THROUGH Autism, this review might would be very different.
I hope that book is written someday. I just may have to be the one to write it.
* The second thing has to do with Autism and Vaccines, another area that I feel is not “One Size Fits All” in the Autism community. However, Leeann feels that her son was affected by vaccines given to her son, and I will agree that we do need to green our vaccines. However, that is all I will agree to. The rest is up for discussion at another time.
April 15th, 2009 at 12:06 am
Great site, Good info
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April 20th, 2009 at 11:02 pm
I hope THAT book is written too.
I loved Leeann’s book – not so much for the ‘cure’ but for the big picture – I could relate to like 99% of it, and that was kind of scary and cool to me, as if I was reading a book about my family in so many ways.
My son is making huge improvements. Some may say recovery. Definitely not “cured”. He’ll always be Alex and always have autism spectrum disorder (HFA). The word “cure” is such a hot button. Bonnie and I were talking about this and we both agreed that we wonder how kids who have been undiagnosed will fair down the road, especially when they are so young. Will their autism truly be a thing of the past or with them forever? I don’t know. So much is unknown. I do know that my son is a huge blessing and gift and I continue to be amazed by him. I don’t want to “change” him, I want him to be healthy and happy.
Actually, right now what I want most of all is for him to SLEEP! 11am and wicked T-storms.. forgeddaboudit!!!
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Shash Reply:
April 21st, 2009 at 12:20 am
That is what worries me so much about throwing the word “cure” around. I would prefer “Massive Early Intervention“. I can see “Back from the Brink” or “Recovering” but using cure and recovery is very dangerous.
The amount of false hope attached to those words scares even me. My son is mainstreamed in school, but will always require supports of some sort.
And you know what? That’s okay. Even CEO’s of companies have “support”. They are called Personal Assistants.
The reality is these children will always struggle to conform to society’s standards and will in most cases not be appreciated for their wonderful gifts.
That’s why, to me, throwing those words around is dangerous because when you are a new parent AND you face this daunting mountain, a cure sounds like the missing component. What happens when your child doesn’t respond? What happens if the end result isn’t what the book said it would be? Why can’t it be a journey THROUGH Autism instead of trying desperately for a “cure”?
I REALLY wanted to like her book. I related to so much. But I had to take the title into consideration and I couldn’t reconcile the fantastic message with the potential empty promise.
All she had to do was change a few words.
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July 15th, 2009 at 1:09 pm
I agree with you that autism is *not curable* and if kids suddenly seem to out of the autism spectrum, perhaps they were misdiagnosed to begin with.
I have a 20 year old son with Asperger’s Syndrome and it is still a daily challenge and downright hellish at times. He is in college, albeit the slow but sure path, can drive (first one his therapist knew of) which helps us a great deal. However…..
- Every disagreement is argued into the ground due to literal interpretation.
- He will not answer the phone unless he knows exactly who it is.
- He will not call anyone on the phone unless he knows them personally (i.e. will not call college when there are problems or talk to professors)
- I still buy his clothes because shopping makes him nervous and the clothes have to feel soft (tactile sensation issue).
- Cannot send him on errands where someone might ask a question he cannot immediately answer.
- Still only eats a small variety of foods.
- Has not yet ever had a job, although he has volunteered.
- Sabotages job applications where he’s afraid of having to work with the public (duh!)
That being said, we know that if he had the means to be self-sufficient, he could take care of himself so far as food prep, laundry, banking (so long as he doesn’t have to call anyone), grocery shopping are concerned. Someone else would probably have to handle the bill paying. I’m hoping some nice young woman, who thinks he’s cute and eccentric, will take him off of our hands.
Or else he’s living with us for the rest of MY life, at least.
And I’m going to Blogher 2009!
.-= Pop and Ice´s last blog ..Anniversary Flowers =-.
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Shash Reply:
July 15th, 2009 at 1:23 pm
Please be on the look out for me at BlogHer. I am so excited to meet you!
I’m worried about my sons future too. He is very similar, even down to the phone issues. I’m hopeful, but anticipating him living at home for quite awhile.
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