Wednesday, February 11, 2009

There is something wrong with neurodiversity

Over at the autism.change.org site, which seems to be quickly becoming home base for a group of neurodiversity bloggers, we have yet another guest author invited to post. This time we are treated to the writing of Estee Klar who is perhaps best known for her Joy of Autism blog.

Call me silly but the title of the her blog strikes me as an oxymoron. You want to talk about the joy of children, sure. The joy that your child brings to you, that works too. But the joy of autism? Really? Your child has autism and that fact brings you joy? Anyway...

The post is supposedly about how autism is viewed in Canada. It starts out by talking about the initial diagnosis process - any parent whose child has autism has been there. But then we get to this passage:

Whatever the entry point into the foray of autism, what lies ahead is largely dictated here in Canada of what the government dictates is the proper autism “intervention.” Based on the notion that autism is a disease or something “wrong,” the government of Canada continues to endorse an intervention promoted by a series of parents in Canada.

That statement just floors me. If you have a condition that is defined in something called the "Diagnostic and Statistical Manual of Mental Disorders" then here's a hint:

There is something wrong.

She continues

This government-stamped intervention is Applied Behavioural Analysis or ABI (Applied Behavioural Intervention). Based on a history of viewing cognitive disability as an illness, a human deficiency, and of treating Canadians with cognitive disabilities as less than human in our own history, the Canadian Government has continued to base its autism policy not in the social model, but in this deficiency or medical model

Here's another hint, by definition autism is a medical condition. If you define it to be something other than what the word means we are no longer talking about the same thing.

Notice if you will the subtle association between ABA and treating people as "less than human". As I have written about before this is a common ND theme.

And there is still more

As long as we continue to view autistic people as requiring an intervention to make them “better,” our system can never claim that it accepts diverse citizens

People with autism, especially young children, certainly do require intervention to help then learn the skills that are required to survive in the world. But I guess little things like being able to dress yourself, learning not to injure yourself, understanding that you can't run out in the street directly in front of a car, or really silly things like learning how to talk aren't really making someone "better". If we all just accept our "diverse citizens" and possible sing a verse or two of kumbaya everything will be perfectly fine.

Acceptance will not help your child be able to survive in the world on their own. If that were all it took then there would have never been a need to institutionalize people with autism. That was the common response to autism only a short few decades - do we really want to drop the interventions that have given people with autism a chance of being able to function on their own in society?

Oh wait, that wasn't very accepting of me. Of course there are many high profile people out there with autism who are doing fine in living in society and many of them have not had the interventions that are being talked about. However, I think they are the exception rather than the rule and that the silent majority could have benefited from the extra support and help.

The thing I just don't get it is why people like Ms Klar go around spouting this nonsense. She obviously loves her child and wants the best for him. And I am assuming that she is doing what she thinks is best for him. But what possible reason can there be for trying to reclassify what is a medical condition as just a "difference" or for trying to say that there is nothing "wrong" in autism.

I just don't get it.

Edited to add : Apparently I am not the only one who doesn't like the post.

6 comments:

  1. MJ,

    1. Preface to my comments - The viewpoint I express about Autism and Neurodiversity I believe is based on the general viewpoint of the ultraorthodox Jewish community of Israel and throughout the world (consisting of several hundred thousand people). I believe that many tens of thousands of people in the ultraorthodox Jewish community are aware through his published communications of the existence of my son Ben, who is completely nonverbal at age 37 and diagnosed with autism as a young child. The viewpoint I express about Autism and Neurodiversity is not in full agreement with Michelle Dawson or Harold Doherty (both from Canada).

    2. In this blog entry, you end with:

    "The thing I just don't get it is why people like Ms Klar go around spouting this nonsense. She obviously loves her child and wants the best for him. And I am assuming that she is doing what she thinks is best for him. But what possible reason can there be for trying to reclassify what is a medical condition as just a "difference" or for trying to say that there is nothing "wrong" in autism.

    I just don't get it.

    Edited to add : Apparently I am not the only one who doesn't like the post [which is the blog entry from Harold Doherty of Canada]."

    3. Also, I have been trying to figure out why and maybe the answer can be found in the February 1, 2009 message #1852 that I posted to the "autismfc" yahoo!group that I "own" which is entitled:

    "Schizophrenia instead of Autism Spectrum Disorders?"

    This message is accessible to everyone in the public archives:

    http://health.groups.yahoo.com/group/autismfc/message/1852

    4. The information in section 3 above was posted on February 9, 2009 as my last comment to your blog entry of February 2, 2009 "problem with neurodiversity." Did you have a chance to read my autismfc message #1852 yet? Do you or others have any comments about what I wrote 2 weeks ago before I comment further on your blog entry?

    Art

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  2. I did finally get a chance to read your yahoo message. I have come across other sources that propose a relation between schizophrenia and autism - most of these seem to be thinking that schizophrenia and autism and two different sides of the same coin. You seem to be saying something similar.

    To be honest I don't have much of an opinion about the possible relationship, I don't know enough about schizophrenia to have any basis for an informed opinion.

    ReplyDelete
  3. MJ,

    5. Thank you for reading and commenting on the "autismfc" message #1852. I realize the subject of "Schizophrenia instead of Autism Spectrum Disorders?" is complicated and your reply is what I expected. Now I will try to clarify my concerns, which I believe requires more background information. I expect my comments will be long but you and others have raised the issue of "There is something wrong with neurodiversity" and "The problem with neurodiversity" which I think is important to try to answer. I am concerned that I cannot find others writing along the same lines as I am doing, but I think I might know why.

    6. In your reply, you wrote that you came across sources I have also read before "that propose a relation between schizophrenia and autism - most of these seem to be thinking that schizophrenia and autism and two different sides of the same coin." While you reasonably have the impression that I seem to be saying something similar, I actually mean something very different. To continue your analogy, I would state that when diagnosis occurs as adults (which is usual for most Neurodiversity Movement self-advocates) that Schizophrenia and Autism Spectrum Disorders are two separate identical-looking coins such as U.S. quarters, but one is an old silver quarter and the other is a new nickel-clad copper quarter, so while the outside looks the same, inside is completely different.

    7. In medical terms, I am talking about a "differential diagnosis" of Schizophrenia instead of Autism Spectrum Disorders. To use the simple example I found at one internet website, the identical symptom of "differential diagnosis of rhinitis (a runny nose) includes allergic rhinitis (hayfever), the abuse of nasal decongestants and, of course, the common cold." Although the symptom is absolutely identical, since the underlying causes are completely different, the appropriate treatments may be completely different too. In our own common experience, "rhinitis (a runny nose)" may be the one outward symptom of a milk protein (casein) allergy or intolerance. While our nonverbal children cannot tell us what is going on inside, we both know that this one simple outward symptom is part of a complex set of symptoms that can make a person with autism quite miserable and a diet free of casein can have tremendous benefits. On the other hand, if this symptom had other causes, removing dairy products from the diet would not help.

    8. Getting back to the subject of "Schizophrenia instead of Autism Spectrum Disorders?" I would like to bring up some additional background information which I hope will make you and others realize why this question may be relevant to your issue that "There is something wrong with neurodiversity" and "The problem with neurodiversity." In message #1852 I quoted from an NIH website "Autism Fact Sheet" under "What are some common signs of autism?" it states:

    ... [Last two sentences] "While people with schizophrenia may show some autistic-like behavior, their symptoms usually do not appear until the late teens or early adulthood. Most people with schizophrenia also have hallucinations and delusions, which are not found in autism.""

    9. Concerning the issue of the Neurodiversity Movement, I found it quite interesting and I hope you understand why when I tell you that recent research I did on Schizophrenia informed me that one type of delusion is "persecutory" delusion. The claims of the self-advocates in the Neurodiversity Movement of being defamed by their opponents might actually be a "persecutory" delusion. As noted in section 8 immediately above, delusions are not found in autism. I realize that these self-advocates would deny that they are delusional but I have serious questions, which are the main reasons that I have questions about Neurodiversity.

    10. There is another "differential diagnosis" that I would like to discuss with you - "Severe mental retardation instead of autism disorder" - but my comments are already quite long, so I will stop at this point. If you can, please let me know if these comments make any sense to you.

    Art

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  4. MJ,

    11. Additional background information - in my search about "Differential Diagnosis" I found the website of Professor William J. Anderson, PhD of the Indiana University School of Medicine who has a webpage entitled "Diseases of the Nervous System" which links to a series of review papers required of first year medical students at Indiana University School of Medicine as part of the Medical Neurobiology course. One paper is on "Schizophrenia" by Pat McDonald and states in part:

    "Schizophrenia is a neurological disorder that affects the cognitive functions of an individual....Schizophrenia occurs equally in males and females; however, the age of onset of the disease is different between the sexes. The primary age of onset in males occurs roughly between the ages of 15 and 25, whereas that in females occurs between the ages of 25 and 35."

    Another paper is "Autism: The Difficulties in Differential Diagnosis" by Darren Brucken and states in part:

    "Forward - This essay discusses an important view concerning the differential diagnosis of infantile autism. As you will see, the symptomology common to autistic infants mimics that of severely retarded children in the early months of life....The early diagnosis of autistic disorders in infants is crucial for the success of treatment programs that have proven somewhat effective in recent years. There is no cure for autism, and no wonder drugs that are corrective of autistic behavior."

    12. When I sent the comments with sections 5 to 10 about 6 hours ago, I did not have time then to type up the information in section 11 above. In section 11, I first mention another "differential diagnosis" that I would like to discuss with you - "Severe mental retardation instead of autism disorder" but I do not yet discuss the matter in depth nor have I discussed certain points I meant to discuss about Schizophrenia. I hope to get some further reply from you before I proceed further.

    Art

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  5. I think I understand what you are saying but I don't really have the understanding about what is involved with schizophrenia to be able to comment intelligently.

    From what you are saying and doing some quick research it seems like it could be possible that there are adults who are have schizophrenia but have instead been given a label of autism. But I would have to do a lot more research and reading before I would be willing to venture an opinion.

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  6. MJ,

    Let's both keep researching this subject of "Schizophrenia instead of Autism Spectrum Disorders?" and when either you or I are ready, to venture a public opinion.

    Thank you for expressing your concerns about the Neurodiversity Movement and I look forward to checking on your blog to see what you have to say. If I notice that you wish to discuss the communication skills of your now 4 year-old twin girls, I will offer further comments at that time. Meanwhile I wish you success in helping your young children.

    Art

    ReplyDelete