Sunday, April 04, 2010

The Autism Book: My Review

The Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and PreventionThe Autism Book: What Every Parent Needs to Know About Early Detection, Treatment, Recovery, and Prevention is a book written by a pediatrician who treats autism through what are known as "bio-medical" treatments.  It is well-written, clear and easy to understand and has an extensive reference list. He covers symptoms, diagnosis, and treatment.  He also talks about the theory that the autism rate is linked to vaccines.   If you have an autistic child and are looking for a book supportive of methods not used by mainstream medicine, I think  you'll be happy with this book.

As I've noted here before, I'm the mom of an autistic teen.  My son is one of the first kids in the autism epidemic.  Starting with kids about his age (18 next month), the number of autism cases has increased tremendously over what was seen before.  According to this book, autism  now affects 1 in 58 boys.  I work in an office that at any time has about 100 employees.  At one time there were three of us, that I knew of, that had autistic boys.  In my life outside of school or other places where I would meet autistic kids because my son is autistic, I've met, or know of four boys who are on the autism spectrum.  In short, I really do believe autism is becoming more common and that it is a real affliction.

As a parent, I've done my best to find things that will help my son.  One "disadvantage" we've had is that he was diagnosed relatively late--he was in third grade.  We've known there was a problem since he was about two, but we've been through a couple of different diagnoses.  As we were at the beginning of the wave, the treatment that is considered the gold standard today, ABA (Applied Behavior Analysis--a structured behavior modification program) wasn't well-known and providers were few.  While we got speech therapy through early childhood programs and through the school system, our insurance didn't cover it.  We paid out-of-pocket for some, but the reality is that some of our decisions have been based on finances, and I'm not sure that's a bad thing.

Once we received the autism diagnosis, I started researching and it didn't take long for me to learn about the physicians who touted the gluten-free casein-free diet, vitamin supplements, and chelation.  A speech therapist told us she heard about Auditory Integration Therapy at a workshop, and suggested we look into it.  The only problem I saw was that all this stuff was either difficult (the diet) and/or expensive (all) and that despite the fact that none of it was new, no one could show me any research showing that it worked.  Yes, there were anecdotes; yes, parents claimed this or that made all the difference; but any studies I read were not real encouraging.  One of my co-workers used chelation and supplements (and said the doctor tested her son and said he didn't need the diet).  She was pleased with the results--but she has continued to have as many, if not more problems with her son as I have with mine.  She had her son at an expensive private school where many of the parents had tried many of these therapies, and yet the kids were there, and definitely autistic.  In short, I've seen little reason to risk large amounts of money on these treatment--and believe me, if you could guarantee me (or even show me studies showing a good chance of) a cure, of making my son "normal" then I'd be more than happy (ok, maybe not more than happy, but I'd do it) to write a five-figured check

Dr. Sears, the author of this book, readily admits that these treatments have not been through the extensive testing that conventional medicine requires.  He also admits they have no way, other than trial and error, to determine what treatments work on what kids.  His philosophy is along the lines of "can't hurt, might help", but at one point I sent off for a month's worth of supplements I read about on a couple of websites, supplements my doctor said might help, and I was out over $50.00--and I never got the big dollar stuff (and I saw no change in my son as a result of taking what I could get down him, and one of the supplements is the only medicine I ever gave him that I ended up wearing).  I priced AIT, and figured that would cost us several thousand.  I looked into chelation, but by that time my son was twelve, and the doctor who used it had written a paper showing that kids twelve and over rarely benefit--but my co-worker who used it said it cost them several thousand dollars.  In short, there are a lot of people selling a lot of stuff to desperate parents, and yet not much beyond anecdotal evidence that it worked.

I'm not discounting anecdotal evidence but I know my son's development has often been in spurts.  For example, he was late to talk.  As an infant he was in daycare at a lady's house.  She kept the kids until they turned two, but then she asked you to move them elsewhere--she thought a more school-like setting was better at that point.  The way things worked out, my son was one of the oldest kids there for about six months.  When the time to move him grew closer I started searching for a high-quality place that provided a lot of structured interaction between the kids and adults.  I didn't want him just playing all day.  When he was about 22 months old I found one.  Since I wondered if part of his problem was being around all those babies all day, I went ahead and moved him then.  Shortly after I moved him, his language took off.  I patted myself on the back for finding and solving the problem.  Unfortunately, after a spurt, he leveled off and continued to fall behind.  There are several other spurts I can remember, and I suspect if any of them had happened right after I started something new, I'd give that new intervention credit for the spurt.

So, what about the book?  Dr. Sears writes well  about why he does what he does, and why he thinks it works.  I just wish there was more evidence that it did. I also wish he had more advice for the parents of teens.  Still, parents today have a lot more information at their fingertips than what I did years ago, pediatricians are quicker to diagnose and treat today (when the pediatrician diagnosed my son, he said that there was nothing they could do but treat the symptoms as they became problematic, and it seemed we were doing that) and in many states, including ours, insurance is paying for more than it did when he was young, which hopefully will lead to increased availability of services (there have been things we've wanted to do, particularly social skills therapy, for which we have been unable to find providers).  If you are a parent just starting on this road, I think reading a book like this should be part of educating yourself; however, I'd also suggest searching the medical literature on Medline to see what mainstream medicine has to say about some of these treatments.

Addendum:  For the record, as I was writing this review, I decided to check Medline for a few of the treatments listed, as I haven't done so for a while.   I found an article that said "Promising treatments include melatonin, antioxidants, acetylcholinesterase inhibitors, naltrexone, and music therapy." It classified most of the treatments discussed in this book as "C: Supported by at least 1 nonrandomized controlled trial or 2 case series."

Also, vaccines are often named as the culprit for the autism epidemic by the "biomedical" group.  I found this article I thought was interesting.    As I interpret that paper, there have been numerous studies done which fail to show any correlation between the MMR vaccine and autism and numerous studies which fail to show an correlation between thimeriosol (a mercury-containing preservative used in vaccines until around 2000) and autism.  Those were the two "original" autism/vaccine theories.  However, as noted above, multiple studies have failed to find the postulated correlation.  Now, the popular theory is that too many vaccines too close together overwhelm some kids' immune systems and cause autism.  Regarding that theory, the article simply says, as I understand it, that they say its not so, but they have no studies to prove it.  I'll admit that this theory has caught my eye--the cohort of kids to which my son belongs was the first to get the Hep.B (or is it C) vaccine in the hospital.  The Hib vaccine was only a couple of years old.  Prior to that, "baby shots" had meant DPT and polio for a generation.  I consented to vaccines for my youngest, but she was always behind schedule and I was always concerned.



Giveaway:
The nice folks at Hachette, who provided me with a complimentary review copy of this book, are allowing me to give away three copies.  Here is how to enter.
1.  Leave a comment giving your email address.  In that comment, also tell us a little about yourself and where you live.  This doesn't have to be real personal or exact--a middle-aged women from a large east coast city  or young mom from small town in the South would be sufficient.  Tell us if you have an autistic child.  Finally, tell us how many autistic kids are part of your normal life circle--relatives, friends, co-worker's kids etc.  
2.  For another entry, leave a comment on any other book I've reviewed relating to autism, and another here telling me on which one you commented. One entry per book you find and comment on.
3.  Follow me, or tell me you already do and I'll give you another entry.


Usual Hachette Rules:  US and Canada only, no PO Boxes.  Contest ends 4/23/10

6 comments:

  1. I had a student who I felt very strongly could have been verbal if his music abilities could have been tapped into. I tried to contact a couple of music therapists but didn't get a response from either of them. This child had a very realistic, loving family, but never became fully verbal. There are a lot of misconceptions about autism out there; hopefully we're all able to get the word out!

    ReplyDelete
  2. I continue to read as much as I can on the topic. I deal with five autistic (diagnosed) and four (undiagnosed) children (all boys) on my team of 114 students. They range in skill, but all have presented much more in my class than the IEP says they are capable of.
    It is a daily struggle. I just thank God that He has blessed our team wit so many students who take the "non bully" policy to heart. Middle school could be a very painful place for this group of boys!
    Bowen4flag@aol.com
    Teacher in her50's - military mom.
    I don't know what other books on autism you have written on- but I have read all of your posts on the topic because it is close to my heart and I need to hear it from a mom's perspective.

    ReplyDelete
  3. There is more and more research that links many learning and developmental difficulties to poor communication and synchronisation between the two brain halves. An effective way of improving the processing functions in the brain is to listen to specially altered sound or music through headphones as pioneered by Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training - AIT).

    Now there is a new Sound Therapy Programme which has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning and it is entirely free to download and use at home. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

    Check out the Free Sound Therapy Home Programme from Sensory Activation Solutions. There is no catch, it's absolutely free and most importantly often effective. Find it at: http://www.uk.sascentre.com/uk_free.html.

    ReplyDelete
  4. I am Renee - middle aged wife and mom in northern AL.

    I do not have an autistic child.... I don't know any in my day-to-day life...but there are moms in theater who have autistic sons.

    reneesuz82(at)msn(d0t)com

    ReplyDelete
  5. I'm a follower.


    reneesuz82(at)msn(dot)com

    ReplyDelete
  6. Anonymous7:41 AM

    I am a middle aged stay at home mom in the midwest. I have one son on the autism spectrum.
    debp
    twoofakind12@yahoo.com

    ReplyDelete


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