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Dancing with Autism

af Kristi Lyn Stewart

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Dancing with Autism: Choosing Joy Over Fear
By Kristi Lyn Stewart
Published by Acacia Publishing
ISBN 9781935089193
This book was supplied to me by the publisher on condition that I publish an honest review.

When I read the title, my gut reaction was, in the vernacular, "There ain't no way." I am autistic. My father, his mother, my mother's grand-uncle, my mother's sister's son, and my son all are autistic. There are degrees of autism; I have been able to live a fairly full life, including getting a Ph.D. and publishing numerous books, whereas my uncle Henry had to be institutionalized--the only one in the family who has been that bad off. But all of us have been afflicted with the autistic curse of poor interpersonal relationships and with various other problems that grew up around the autism, including major depression, obsessive-compulsive disorder, and other things such as, in at least one case, schizophrenia. My husband's grandson has Smith-Maginnis Syndrome, which is a totally different problem, but it has many of the same loads of baggage as autism. I saw no reason at all to view autism with joy.

But I was sufficiently curious to ask to review the book.

I cannot honestly say that Stewart convinced me that I should be glad there is so much autism in the family, but that wasn't her goal. Her goal was to educate people about autism at least to the extent that they would not despair if a diagnosis of autism was made. There are some good points about autism.

A person with autism is often more able to concentrate for long periods of time on something most people would find boring. I am convinced that I was a better fingerprint examiner than I would have been if I had not had autism. Many autistic people have been gifted musicians, inventors, and other professions that require intense ability to concentrate.
With the exception of the very most seriously afflicted victims, most people with autism do improve slowly. The type of autism that used to be called Asperger's tends to partly go away in late childhood and return in late middle age, so the most productive part of most people's life is free from most of the complications, except that interpersonal relationships are always iffy.
It is legitimate to be pleased when your child makes a step forward, just as anybody else is, even if your child's step forward is much later than other children's. If your son is potty-trained at the age of ten, let your friends know about it, and let them see that you are delighted and excited about it. Then they know to rejoice with you.

If you are aware that your child is likely to have problems with interpersonal relationships, you can work to train him or her to know what to say and do in various situations. It may be training, as you would train a dog, rather than teaching, but what difference does that make if it works?

You may be very embarrassed when your child acts in a way suitable for a child ten years younger, but try not to feel that people are judging you and thinking that you are a bad parent. The days when "bad parenting" was considered the cause of autism are long gone, and if you meet someone who still thinks that, feel free to educate him or her, preferably without antagonism and if possible, with a smile. Make it clear that you do love your child, difficult though the child may be at times, and don't be intimidated.
When your child rocks back and forth, bites his arm, bangs his head, and flaps his hands and sometimes his feet, it's hard not to be embarrassed. I started flapping out of sheer stress at the head table at my stepson's wedding breakfast, but bless their hearts, no one in the family acted embarrassed, and I managed to sit on my hands when I realized what I was doing. When someone in my stepson's mother's family said something I couldn't hear, my stepson's mother's answer was short and to the point, and her point was that it was something I couldn't help, and was to be ignored. She is a rare individual.

But the author of this book would like to see more people able to deal with autism that way. There is no known cure. Some things have helped some people, but there is nothing that helps every person. There are no pills to take; behavioral therapy is often prohibitively expensive and not covered by medical insurance. More education could solve some of these problems. There probably never will be a pill that will stop autistic thoughts and behavior, but insurance companies should treat autism as they would any other genetic disorder, because the evidence is strong that that is exactly what it is. Parents should be able to get help for their children under normal insurance plans, before such problems as depression grow up around the autism, as very often happens when the child realizes that he or she is "different."

The child is never going to be completely normal. It just won't happen, not if the diagnosis of autism is correct. But he is likely to get better. Most children with the Asperger's branch of autism are able to marry, have families, and have careers; I did. Lower-functioning children are usually able to live in group homes and support themselves with Social Security and minor jobs that they can do.

There will be ups and downs; some days the child may appear better, and other days the child may appear worse. It is likely that neither is going to be the case permanently. Autistic children have ups and downs just as other children do, and autistic adult shave ups and downs just as other adults do. But the overall movement, if there is one, is likely to be in the upward direction.
If you question this, remind yourself of one thing: this review was written by a 69-year-old woman with autism and a Ph.D.

Anne Wingate
Author of Scene of the Crime and other works of fiction and nonfiction ( )
  Anne.Wingate | Sep 24, 2012 |
“Dancing with Autism: Choosing Joy Over Fear” by Kristi Lyn Stewart is a story about how her son, Alex, was diagnosed with autism and how she and her family chose to live their lives with an autistic child.

I think that this book should be a must-read for any parent whose child is diagnosed with autism. When parents get the initial diagnosis, it can be overwhelming. There is guilt, anger, denial, and other strong emotions that come into play. Dealing with a child who has autism can be very isolating for the family Ms. Stewart acknowledges these emotions but then shows how to overcome the negative emotions and focus on the positive. She validates how many parents feel when they receive the diagnosis.

Ms. Stewart talks about the different therapies that are out there that will “cure” autism. She has tried many herself, such as ABA therapy, milk-free/gluten free diets, occupational/speech therapy and many others. She even spent one whole month “brushing” her son with a soft sponge. There is no cure for autism and what therapy works to help one child may not work on the next child.

Some of the chapters in her book are:

If You Can Either Laugh or Cry
Educate Others with a Smile
Living with the Embarrassment
We’re All in This Together

And my favorite:
Grumpy Doesn’t Have to Be Permanent.

Ms. Stewart does an excellent job of letting the reader know that they are not alone in their journey with their autistic child. She demonstrates how to find the joys and triumphs with your child and not to focus on only the negatives. She also feels like she is giving you a hug and telling you that it is all going to be okay. That’s the best part.

**This book was received for free through Goodreads First Reads. That in no way influenced my review.** ( )
  HeatherMS | Mar 10, 2012 |
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