Sunday, April 25, 2010

Autism Blog - NIH to study recovered autistics

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 "A clinical trial has been started to study and compare autistics (children to young adults) who have “remitted” autism. These are people who would be called “recovered” by the autism parent community."

Autism Blog - NIH to study recovered autistics 

I think there's a lot of controversy over "curing" autism and what that cure really means.  One criticism especially in how it impacts allocating research money is that focusing on curing  and not providing for the needs of the individual here and now.  In fact, there can be a rejection of the whole idea of cure:  "Recovery from autism is neither possible, nor desirable."

A lot of this is the medical vs socio-ecological view held by many disability activists.   The medical model holds that the person is sick and needs to be cured; the socio-ecological model holds that the "Ability is a dynamic relationship between an individual and their environment" and that a "cure" is not always welcome or desirable.  I think the medical model puts the onus on the autistic patient and the socio-ecological model puts the emphasis on the dialog between the individual and the people around them. 

For me, I am somewhere in-between these two models.  As you can see from this blog, I have been doing a lot to medically fix whatever is wrong with me.  At some point in the next year, I will have finished all that anyone can offer me, and then what?  I will be in a socio-ecological mode of negotiating between the environment and myself... at least, until the next big discovery happens. 

You know, we are functioning in an era that is demanding a lot of social skills.  Moving from making things (industrial aged economy) to information economy has involved changing not only the how of how we do things but also how we interact with other people.  More emphasis is on growing your network both personally and professionally.  So what do we do with a bunch of people that just don't relate well to the average person?   Corporation's Human Resource Departments  are set up around the whole idea of team building;  not fitting in is grounds for termination.  They make no bones about it.

On the other hand, maybe, as a society,  we have lost something in terms of toleration of quirky people and the value that they bring.   There are a lot of very creative people who are very quirky.   Whistle blowers often do not fit the norm.  The Gifted and Talented population also are the outliers.  We are living in an era of dynamic change which I am not sure that team building, and its idea of conformance to a norm, is an ideal mechanism to handle such changes.  The advocates of neurodiversity ask that atypical neurodevelopment be it ADHD, autism, or psychological disorder be regarded as a normal human difference to be recognized and respected just as race are gender are.  

A lot of people in autism feel like they have been dragged through the mill of a lot of treatments that never worked or whose cost outweighed the benefit.  A lot of them feel as children that they had no control over what their treatment was and that a lot of foolish treatments was done to their bodies without their real consent.  As far as they are concerned, they have done their part to fit in and that society needs to accept them for what they are. 

A lot of what is being asked of people in terms of conforming to society's expectations lie at core definitions of self and identity.  When are these quirks just harmless self-expression?

Many of the organizations claiming to represent autistic people have little or no autistic people on their boards or in leadership positions.  Yet, autistic people have not been held to be legally incompetent.  So why are there so many surrogates?  I think it is because the nature of autism makes it hard for people to negotiate the differences amongst themselves to create effective institutions composed of people like themselves and to effectively bargain and negotiate with the neurotypical community. 

So when is it right to respect the individual and his limitations and when does a group of people lose the cohesive ability to function together?  I don't know.  A lot of things that shouldn't be related to our ability to do things are related to our ability to bond together:  wearing the same clothes, using similar slang, having similar habits around time management.   Neurodiversity challenges our ideas about group norms and Group Norms also challenge our ideas about neurodiversity's practicality.

For more on autism controversies, click here.

Please note,  I am very hesitant to weigh in publicly about the debates around autism.  There are a lot of strongly held opinions within the community.   At some point, though, you just can't avoid the controversy. So please take my statements now as a personal truth and not as a general statement for all.  I think the study mentioned above could help us understand what is possible for a "cure" and what is just something we will all have to live with.


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