Sunday, June 17, 2007

Autism & The Neurodiversity Message - We Know What is Best for Your Autistic Children - Do Not Try to Treat or Cure Your Children

There are a number of disputes which plague the world of autism. Although none is as curious as the anti-autism cure movement known as "neurodiversity". Composed largely of persons with high functioning autism and Asperger's it is bolstered also by some parents of autistic children who subscribe to the view that by trying to cure their child's autism they are trying to destroy their child's essential identity. These parents, and some professionals, also repeat the Neurodiversity mantra that parents seeking to cure their children of autism or even to treat its more egregious symptoms actually hate their children. These parents and professionals then have no qualms about spreading their hostile message and accusing other parents who have not succumbed to the Neurodiversity message of hating their own children.

The current US court proceedings highlight the beliefs of some parents that their child's autism was caused by thimerosal, a mercury containing organic compound used as a preservative in some vaccines. Even the dates at which thimerosal ceased being used widely in vaccine preservatives, if at all. But nothing can compare to the circular, and at times bizarre, logic of the Neurodiversity advocates and their attacks on parents seeking to help their own children.

The fundamental premise of Neurodiversity is itself a sound premise, one with which I completely concur and one with which I am sure all parents of autistic children are in agreement - acceptance. Acceptance of autistic persons as human beings deserving of dignity, respect and inclusion in all aspects of society. After that fundamental premise however the Neurodiversity movement falls off the rails.

Not content with acceptance of autistic PERSONS, not content with acceptance of the fact that persons are autistic, the Neurodiversity movement tells us, parents included, that we must stop trying to treat and cure our autistic children; we must embrace our children's autism as a wonderful natural variation of human existence, one that, in some ways at least is even superior to other such variations. Indeed we must find and accept the joy of autism.

To reach this stage of Neurodiverse enlightenment parents are told, amongst other things, that they do not know what is best for their own children, they can not know what is best, unless of course, they too are autistic. Far better that they listen to complete strangers who have never met their children, never cleaned up after their children, never fed their children, never laughed with or tickled their children, never sang with their children, never fixed windows broken with their children's hands, never helped their children to eat as they literally starved themselves to near death states, never helped their children calm down while banging their heads against walls or biting their hands or wrists. Better to listen to strangers who will not be there for their children when they need residential and institutional care as adults. Stop presuming that mom and dad knows best. The experiences and observations of parents who live with, care for and interact with their autistic children on a 24/7 basis from birth onward should be given no weight. Parents know naught. Only the internet strangers who are, or claim to be, autistic can truly speak for all autistic persons including the children whose parents seek to help, treat and cure them. Only by embracing the wisdom of these strangers can parents reach Neurodiverse enlightenment.

When parents point out that these Neurodiverse sages do not share the same severity of autism as their children and can not possibly understand their children's challenges the Neurodiverse are offended. They are offended that parents would presume to divide autistic persons by the degree of severity of their autism. This is where the Neurodiversity logic breaks down totally and they reach and grab for any theory or explanation to maintain their self promoted presumption of autism expertise. Although the Neurodiverse embrace the label of autistic, or autism, as a descriptive term they reject its origins as a medical diagnosis, one of a spectrum of disorders of varying degrees of severity and different characteristics.

Autism is a term used loosely to describe a number of disorders now classified on Axis I of the DSM-IV, the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV), and known as the Pervasive Developmental Disorders. Autism Disorder is a PDD. In the 4th edition a number of diagnoses were added to the PDD's - Rett's Disorder, Childhood Disintegrative Disorder and Asperger's Disorder. Asperger's Disorder is the diagnosis which will likely be made for persons who have traditionally been labeled as having "High Functioning Autism." It is the appropriate diagnosis for individuals who have evidence of many Autistic-like symptoms but for whom there are no language impairments. - Meredyth Goldberg Edelson, Ph.D. Department of Psychology,
Willamette University. As Dr. Edelson also points out in Autism-Related Disorders in DSM-IV there are many variants in autism disorders. The reasons for tightening the criteria for Autism and for adding Rett's Disorder, Childhood Disintegrative Disorder, and Asperger's Disorder to DSM-IV is to recognize that Autism is a disorder with many possible symptom variants. Because of this, individuals diagnosed with Autism in the past have been heterogeneous. . Notwithstanding that the Neurodiversity movement of some high functioning autistic persons, some sympathetic parents and professionals embraces the diagnostic label of autism they reject the other elements of diagnosis, the heterogeneity that gives rise to different diagnoses based on severity and nature of the autism or pervasive developmental disorders.

While rejecting the views of parents, who can not believe that these internet essay writers and interveners in court cases and political proceedings have much in common with their children, and while rejecting the professional classification which gives rise to the diagnosis of Autism which they embrace, the ND polemicists also ignore the writings of their own academic icons, particularly Montreal psychiatric researcher Dr. Laurent Mottron. Dr. Mottron has himself acted as an advocate for the Neurodiversity movement, filing an affidavit in support of Michelle Dawson who intervened in the famous Auton proceedings before the Supreme Court of Canada and appearing himself as an expert witness before the recent Canadian Senate proceedings examining funding of autism treatment in Canada. Dr. Mottron, like his colleague Michelle Dawson, opposes Applied Behavior Analysis as a treatment for autism.

The good Dr. Mottron, notwithstanding his entrenched opposition to ABA as a treatment for autism, does not appear to have any serious expertise as a clinician and appears to have a very narrow range as an autism researcher, focussing his several studies and reports per year almost entirely on subjects which his reports themselves invariably describe as HFA (High Function Autistics), Asperger's, and even Autistic Savants. Thus while the Neurodiversity movement has appointed Dr. Mottron as one of its heroes it seems to have overlooked the fact that he himself uses a descriptive system which recognizes different levels of severity, different symptoms, of the various and heterogenous PDD or Autism Spectrum Disorders. Dr. Mottron's high functioning autism studies also contribute to the efforts of such as Morton Ann Gernsbacher and their mutual colleague Michelle Dawson. It does not appear that any of this illustrious trio will soon be rushing out to study, or heaven forbid actually work with, the lower functioning autistic persons residing in institutional care and unable to communicate in any meaningful way with other people.

At the end of the day the fundamental contradiction of the Neurodiversity movement is that it is a movement of people who organize based on a spectrum of neurological disorders, a spectrum divided by deficits of differing types and severity who then argue that their disorder are not disorders at all just different orders. And then some argue that they are the only truly authentic voices for these disorders (which are not disorders) even though their deficits are different than those of the children whose parents are trying to help them through treatment or cure.

And while they are quick to complain about the insensitivity of language used to describe the serious challenges faced by more severely autistic persons they are equally quick to use pejoratives such as "curebies" to describe concerned and caring parents. The neurodiversity crowd even stooped to accusing the parents in the touching video "Autism Every Day" of having faked or staged the video. I was not in the "Autism Every Day" video. But my son who I love dearly presents, along with great joy, incredibly challenging deficits which threaten his own safety and that of his brother, mother and even me, as when driving I am grabbed from behind by a suddenly distraught autistic son.

The Neurodiversity movement is at best silly and at worst insulting, abusive and dangerously misleading. I, for one, will never drink the Neurodiversity Kool-Aid. I will leave that to those who believe that, in order to find joy in their autistic child, they must find joy in his or her autism, a mistake I will never make.

3 comments:

nhokkanen said...

It never ceases to amaze me how people can choose to create convenient fictions even in the glaring presence of fact.

Parents observe their children's symptoms, physicians examine and prescribe treatment, and if successful parents report it on the Internet to help others. Then strangely some strangers with questionable motives make up stories about these families and their doctors, turgid prose strained through their narrow filter of experience.

I don't know how anyone could read the Day 1 testimony of the Federal Autism Omnibus Proceedings and still believe these children don't need medical treatment. Read page 40, line 18. Michelle Cedillo was pounding on her chest, trying to say, "I hurt. Help me." Her doctor's scope found the esophageal lesion and he healed it.

I cannot imagine anyone wanting to live with chronic diarrhea, gastrointestinal lesions, seizures, heavy metals toxicity, etc. ad nauseam. Some ND's call these "comorbid conditions." Whatever dodgy semantics they employ, they are still attempting to interfere between doctor and patient, between parent and child.

If all the NDs wanted was insurance that children labeled "autistic" received love and fair treatment, parents like me wouldn't have any problem with that. But when they attempt to stifle treatment options with falsehoods and inflammatory rhetoric, they lose my sympathy and support.

Maya M said...

You are describing the general rule (those pro-neurodiversity are anti-ABA and vice versa). However, there are many exceptions. E.g. Michael Fitzpatrick, who doesn't subscribe to neurodiversty, is critical of ABA or, rather, of the extraordinary claims often associated with ABA (http://www.spiked-online.com/index.php?/site/article/1283/). Also, you will find in Web forums a legion of cure-wanting parents who are true believers in biomedical methods and for that reason dismiss ABA together with occupational and speech therapy. An example of the opposite kind is neurodiversity blogger Kristina Chew who is pro-ABA (one of her posts on the subject is at http://www.autismvox.com/on-trial-vaccines-and-aba/). So is Rhonda Wood, who (as you know) has moved nearer to neurodiversity but remains pro-ABA and actively campaigns to make ABA available to all autistic children. Both these mothers say ABA has helped their children much.

Anonymous said...

Very, very well said. It's unfathomable to me that this movement has so many followers when its logic is so profoundly flawed:

I have aspergers and I'm happy with who I am therefore you should not attempt to cure your severely autistic child despite the fact that he/she cannot survive without your care, much less type lengthy blogs on the internet.