Thursday, June 18, 2009

Book Review of a Flawed and Mean Spirited Autism Book

Book reviews are not where I would expect to find a good understanding of autism spectrum disorders or the quirky neurodiversity anti-cure ideology which demonizes parents seeking to help their children but there are always exceptions. A review by Professor Guy Dove of Wendy Lawson's Book Concepts of Normality The Autistic and Typical Spectrum is one such exception. Mr Dove is a Ph.D., Assistant Professor, Departments of Philosophy and Psychological and Brain Sciences, University of Louisville and his review of Lawson's book is balanced, objective and informative. It sees some merit in the principle author's view of autism as natural variation but also summarizes vary succinctly some of the flaws. Somewhat surprisingly Professor Dover points out the nastiness of two contributing neurodiversity writers in the book including ... no surprise here ... the "joy of autism" neurodiversity blogger Estee Klar (Wolfond).

While Dove finds some merit in what Lawson has to say about viewing autism as part of the natural variation of humanity he suggests that she takes the position too far, relying on unsupported generalizations, ignoring the very real medical challenges of autism and ignoring the various subtypes of autism. His sharpest criticism though is with the lack of empathy shown towards parents seeking biomedical and behavioral treatments for their autistic children. While Lawson demonstrates this lack of empathy the two guest writers Dinah Murray and Estee Klar (Wolfond) are stated to be more pronounced in their hostility and Professor Dove provides some direct quotes to illustrate their nastiness towards parents seeking to cure their autistic children:

"The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, "Some Others [members of the typical population] weep and moan and deplore their autistic child's existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is." This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, "And to make them what? -- better at maths, quicker on the sports field, or well-mannered?" This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to "act normal" when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair."

Mean spirited? Misleading and unfair? Standard fare from autism's anti-treatment, anti-cure ideologues.

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navywifeandmom said...

Yep. Exactly.

My daughter would have been miserable if I had left her as she was. Period. I am sick unto death of being judged for doing biomed.

I am smiling, though, as my daughter is SNORING LOUDLY behind me, and remember that we were not always so lucky in the sleep department until the "quack medicine".

And with that, the wackosphere and anti-cure people can take their mean-spirited criticism and put it where the sun don't shine.

farmwifetwo said...

Gotta love that quack medicine here too... Geez... getting rid of dairy.. how mean could I be.. should have left him with the stomach aches, the diahhrea, the nightmares and terrors.... :)

I've read it... I wasn't impressed.


Penny said...

Failing to treat pain and illness -- that's what the ND's want us to do, right? Isn't that medical neglect?

Recognize certain behaviors as symptoms of pain and illness, treat the pain and illness, and the child is better able to function. Thousands of us have seen that happen. "Biomedical" parents are still fighting for the medical profession to RECOGNIZE a lot of the behaviors as symptoms of PAIN so that children of "non-biomedical" parents begin to benefit, too.

What part of medical neglect do the ND's think is okay?

shakingsystem said...

Having a group of the ideologue bunch visit with a family for a week-end and giving them some respite would surely prove a point.

Exposing them to the difficult autism realities facing many parents today,would in fact be a true hands on experience.

Maybe what they really need is a dose of autism reality:

sleepless nights,

cleaning diahhrea (floor and bed)

constipation pain,

aggressiveness(being punched or hit on)

unlimited tantrum meltdowns

self injurious behaviour(head banging on the floor or wall. May require hospitalisation and extensive time spent in hospital emergency waiting areas).

I believe there is a hard lesson to be learned. Maybe this is the "SHAKE DOWN" they've been iching for all along.

John Best said...

I googled Lawson to learn that she has Asperger's not autism. What a surprise!

navywifeanmom said...

Well, that's a lot of comorbidity from one disorder. I think everyone I know with an autistic child has SOME type of physical problems relating to digestion/the immune system/seizures that they also grapple with.

Roger, it is interesting that you bring up melatonin. We did melatonin for about two weeks and then she developed a resistance to it, and then it had a paradoxical affect on her (she slept for like a half an hour and then stayed up ALL night).

The biggest thing we did for her that improved her sleep were antifungal treatments. She had horrible yeast infections from the time she was a baby in her mouth and in her diaper; they would always come and go. Her little bottom was just red and she would dig and dig in it but her regular doctor refused to give her antifungals because they do not believe in candidiasis; it wasn't until I took her to a DAN! and got a prescription for an oral antifungal that her bottom cleared up. she was sleeping through the night within days of beginning the oral antifungal; not only that, she was sleeping DEEPLY. Snoring. For the first time since she was a small infant. I don't think she EVER got REM sleep from about the age of one year on and I think that contributed to a lot of her problems. She would wake up tired and spend the first hour of every day tantrumming because she did not get sufficient sleep; not any more, though. Now she gets up fresh and rested and smiling every day. No more circles under the eyes, either; those disappeared with antifungal treatment.

MB-12 has helped her immensely with impulse control and hyperactivity, and I think it might be helping her retain things. She spontaneously toilet-trained about six weeks after starting it.

COQ10 seems to help her with her muscle tone issues. She used to tire easily when out in public and cry incessantly and want you to carry her after only walking a few yards or sit in a stroller. Field trips at school were a nightmare for her. Now we can easily take long walks in the family and her baby brother and toddler sister sit in the jogger and she helps push. I also got a glowing report from her last field trip that she was full of big smiles the whole time.

I ran out of COQ10 once and she did not get any for three days. She reverted back to wanting you to carry her; being too tired to play on playground equipment, etc. So it seems to help her with cellular function.

I have never had her tested for a mito disorder but I may someday if it can help me better understand what is going on with her. I have had several people tell me that she likely does have one because the low muscle tone indicates it.

The bad thing is the minute she goes off antifungals her yeast infection comes back within days. It is really creepy; you can actually see her eyes get all puffy underneath again, she gets more irritable, her bottom gets a red ring around it, etc., etc. It is like her immune system cannot control the yeast in her body at all. She can also barely eat any fruit or her yeast with flare up, and probiotics are also a must.

The only supplement I get from an autism-geared online vitamin store is her B-6 which I get from Kirkman labs as it is in the form of a chewable wafer that tastes good. The antifungals and MB-12 I get compounded at the pharmacy. Her COQ10 is also in the form of a chewable and I get that one at our local vitamin store.

shakingsystem said...

Yes, Roger Kulp.........I fully agree with your statements.

As we know it, autism is a complex MULTI SYSTEMS DISORDER affecting Neurological,Immunilogical,and Gastrointestinal systems.

If a child with autism is unable to digest milk properly because of the insufficiency/lack of certain enzymes, the protein will create caseomorphins that will cause an intoxificated feeling affecting his THOUGHT PROCESS(Neurological system).

This food intolerance will affect all 3 systems including the Neurological- brain-thought process. Immunological-inflamation of the bronchial tubes,triggering asthma attacks. And lastly ,Gastrointestinal-inability to digest may cause pain and discomfort.

It becomes quite evident that the THOUGHT PROCESS in autism does not stand on its own. All the systems react and interact together. This is basic science. There is no argument for any matter of opinion. The scientific data proves otherwise. This is basic bio-chemistry of the human body.

Certain sub-types of children cannot tolerate certain foods,toxins etc. The result being a negative effect on all 3 systems.

This issue becomes more than a figment of our imagination as some neurodiverse may want us to think.

Penny said...

We really need to what autism IS and what it is NOT: