Tuesday, February 16, 2010

Neurodiversity : You DO NOT speak for my children

Let me first start off by saying that I know I have been talking about the following subject too much for the past week.  I promise that this will be my last post on the subject for a while.  I have several other topics that I want to write about but I seem to keep getting stuck on this one particular subject.  I hope with this one last post I will get this it out of my system...

As I said a few days ago, the neurodiversity movements seems to have reached a turning point.  Up until now they have claimed to speak for all people with autism and have presented a (mostly) unified front against those who dare question their views about autism.   If you are unfamiliar with their views, I suggest you look at some of the other things I have written on the subject as well as look as what other people have have written.  As always, do not take what I write at face value and go evaluate the information that is out there for yourself.

The fundamental idea of neurodiversity is not a bad one.  It basically says that everyone is different and rather than forcing people to comply with some idealized concept of normalcy we should learn to accept people for who they are.  A person with a condition like autism is not necessarily "damaged" or defective but rather different and, with the correct supports, they will be able to function in society as well as anyone else.  

But, like other ideological movements, the devil is in the details.  In the case of the ND movement, what started out as acceptance has turned into a rigid belief that autism is not a disorder and that it is society, not the medical condition of autism, that makes people with autism disabled.

This rigidity should not have survived past the first time one of the ND members met a child who suffers from autism.  They should have seen that it is not some sort of society norm that disrupts the ability of a young child to engage their parent and to communicate their basic needs but rather something that disrupts the biology of a rapidly growing and developing body.  This disruption continues from a young age and cascades into the condition that we call autism.  Some few people have learned to live with the condition and do well in spite of it, while others have not.

Unfortunately, this rigidity has not only survived, it has flourished.  It has turned into the idea that not only is autism not a disorder or disability but that it is a separate way of being that is, in some ways, superior to being "normal".  People with autism, usually the ones who call themselves "aspies", view their autism not as a problem but rather as a condition that gives them superior intelligence, an ability to focus, and frees them from having to worry about those "societal norms" that the rest of us have to worry about.  After all, it is job of the rest of society to accept them for their differences and it is immoral to suggest that they should have to adapt their behaviors to societal norms.

The problem is that this sort of thinking leads to feelings that one is somehow better than "normal" people or at the very least, apart from them.  These people view themselves as separate from the rest of us.  And if that is as far as it went, I would not have a problem with it.   If these people want to consider themselves different, it is no big deal to me.

The problem arises because these same people, the ones who claim that they have autism, turn around and say that they do not wish to be changed or "cured".  They view attempts to treat or cure autism as a repudiation of who they view themselves to be - it strikes at their very identity.

So they go out in force and protest against a cure, protest against "treatments" that "force" them to be something other than they are or "cures" that would rob them of their identity.  I do not have a problem with this.  If you do not wish to change who think you are, you certainly have the right.

But, it doesn't stop there.  These people claim to speak for all people who have autism in rejecting treatments and cures for their condition and there we hit the problem.

These people, ones who are mostly able to function in society and live on their own, are asserting, on behalf of everyone with autism, that no treatments or cures are needed.  They are saying that there should be no ABA or research into the biological underpinnings of autism as that is denying them the right to be who they are.  Genocide, some would say.

And yet, when they make these statements, they always seem to forget that there are those, like my children, who are more severely impacted by autism.  There are those who will not be able to have a life of their choosing, live independently, or even, in some cases, communicate at all with the world around them without extensive help.  This help takes the form of treatments like ABA and attempting to correct the underlying problems.  It also takes the form of researching the causes of autism so that, one day, it may be possible to cure the problems that autism causes so that it will no longer be necessary for people to struggle through life with hardships like these.

And then we come to the statement by people like Michael John Carley, and others like him, who take it one step further and suggest that they take offense at being lumped into the same category with "lower functioning" people with autism.  These people have no problems putting words in the mouths of my children, who are as of yet unable to speak fully for themselves, and yet turn around and dismiss them as unimportant and unworthy of consideration.

And that just really pisses me off.  

Just to be clear, this view is not held by every member of the ND movement and not every person who holds this view is a member of ND.  However, I think if you go back and look at the history of the movement, the ND movement is the source of this idea.

It is time for these ideas about autism to change. 


  1. Many in ND also want to be "role models" for people with ASDs.

    The problem is...many of them don't have jobs or live independently and don't seem to be terribly interested in doing so, either.

    They are much more interested in "being autistic."

    To get a job and live independently would require one to learn to not be so autistic, to, in essence, be "indistinguishable from their peers."

    They obviously don't want to "remove" their identity! They would rather be unemployed and live with their parents than get treatment for their autism and get help to be independent and get a job.

    I always thought one of the main points of ND was that they all wanted people with ASDs to be successful but, in reality, only a few of them are successful themselves because they are not willing to get "treatment" and they don't seem to want any one else with autism "removing their identity" either.

    So, I guess what they truly want is everyone with ASDs to "be autistic" rather than get jobs and live independently.


    Temple Grandin is really the only sane voice in all of this, from what I know. As far as I know she fully supports early intervention and treatment and certainly doesn't want the LFA to remain they way they are.

    I think that if she knew what was truly going on with ND she would not be happy.

    I think she would tell all of them,

    "Go get a job!"

    The ones that earn multiple college degrees, graduate with a high GPA and for some mysterious reason cannot get a job and still live with their parents are my favorite.

    At the very least they can volunteer somewhere: I do that much.

    Temple Grandin grew up in a time when manners where expected and parents didn't dote on their children. The current generation of NDs don't think they should "adapt" to society in any way even though they can: they just choose not to.

    Even worse, their parents also seem to be okay with having a college graduate (perhaps with more than one degree) not have a job, not even a volunteer job, and live at home and not do much of anything (except "be autistic," of course.)

    I live with my father and he would NEVER let that happen. I don't even have a college degree and he pretty much DEMANDS that I do SOMETHING, anything! Anything other than just sit around and "be autistic."

    At the moment I cannot hold a job, but I am also seeing a psychiatrist and getting help so that I can hopefully hold a job in the future. Having a "volunteer" job and a "real" job are completely different, as I have learned.

    I think that if I had multiple college degrees, earned a high GPA and said I couldn't possibly get a job I would find myself homeless because my father wouldn't allow such a thing.

    I have had a more difficult life than the NDs and are also more disabled than them, but I might end up being more successful because I am willing to "treat" my autism and because my parents don't dote on me.

    And I don't really even support ND and probably never will.

    How ironic.

  2. Thanks for this post. As you know I agree with you 100% on this issue.