Whose Planet Is It Anyway?

Tuesday, February 20, 2007

The Buzzing

In a comment on my last post, Chasmatazz wrote about the self-doubt and despair often found in today's autistic youth:

I attend an autism support group, and I see this all the time among the younger set. They use medicalized terms, and lament their sorry state of affairs.

How can we reach the younger autistics?

At various times in history, civil rights activists have had to deal with similar issues. Feminists often found themselves unable to convince other women that they were deserving of property rights, the vote, and equal employment opportunity. Gay rights activists struggled to persuade their closeted brethren that they were not evil or mentally ill and had no reason to be ashamed. Black activists worked to bring hope to many people who had spent their lives in the most appalling poverty and degradation, never expecting to see anything better.

There's a stark description of these feelings of worthlessness in the book The Autobiography of Miss Jane Pittman, which is actually a historical novel and not an autobiography. The main character, an elderly black woman, explains why a young civil rights activist named Jimmy has been finding it so hard to persuade others to join his cause:

You talk of freedom, Jimmy. Freedom here is able to make a little living and have the white folks think you good. Black curtains hang at their windows, Jimmy: black quilts cover their body at night: a black veil cover their eyes, Jimmy; and the buzzing, buzzing, buzzing in their ears keep them from 'ciphering what you got to say...

...they don't understand nothing you telling them. You see, Jimmy, they want you to cure the ache, but they want you to do it and don't give them pain. And the worse pain, Jimmy, you can inflict is what you doing now—that's trying to make them see they good as the other man. You see, Jimmy, they been told from the cradle they wasn't—that they wasn't much better than the mule.

For autistic youths who grew up hearing that they were sick and defective, the buzzing pervades every aspect of their existence. Even their most personal thoughts are not their own, but are disordered manifestations of a malfunctioning brain. Every idle activity is a stim, while every productive interest is an obsession. Any natural talent is a splinter skill or a symptom, and any area of weakness is evidence of an overall lack of ability. Conversations can't just be exchanges of information but, instead, are verbal minefields where speech and social skills are constantly tested and found wanting. Even the simplest of hopes—a meaningful job, a home of one's own, someone to love—are met with pity and a patronizing insistence that these things are impossible. Having a crisis of the soul? Better go take some meds...

Our young people's inner selves are dying slow, silent, ignominious deaths, with no news cameras to bear witness to the destruction of their dignity and their dreams. They have no protest songs, no chanting crowds of demonstrators, no voices loud enough to be heard over the buzzing.

How can we reach them? Not with words alone, but by transforming the world around them, as other civil rights movements have shown. Change the social environment to one that is more respectful and offers more opportunities, and those who have despaired will begin to feel hope.

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  • I imagine that in part [the other part] it's about building self esteem. That's tricky enough with typically developing children and more difficult with autistic children only because many things are so much more difficult for them in the first place.
    There again, real self esteem is engendered by competency not 'good job Johny!' Everyone is capable of this. Even if the accomplishments may be of a different order, they are nontheless, achievements. In fact all the more so precisely because they are more difficult to achieve.
    [Not sure if that makes sense - fatigue]
    Cheers dears

    By Blogger mcewen, at 11:11 PM  

  • I also wrote the following:

    "I'm not sure how I feel about an "intervention." If someone were to do that to me, pretending to invite me to a "discussion group," and trying to gain my confidence, all the while having an agenda, I would feel manipulated and pretty angry. I would wonder why they couldn't be straightforward with me from the start."

    After reading your post, I think I understand better what you were getting at. You called it an "intervention," but you outlined a process. Getting through to the Jason McElwains won't be as simple as saying "hey, by the way..." It needs to be a process, (if not an intervention).

    Thanks you for your thoughtful answer to my question.


    By Blogger Chasmatazz, at 11:16 PM  

  • Upon further consideration, I've reached the conclusion that "intervention" is probably a very apt word for what we need to do.


    By Blogger Chasmatazz, at 11:18 PM  

  • I very much want to reach this generation, but speaking in the UK I think the patronising attitudes of the medical/charitable hegemony freezes out any of us who do other than the socially acceptable "self narrating zoo" histories of how hard it is.

    I will say how hard it is but with the political edge of the social model of disability that the problem is not within but all around.

    For once I shall say that the NAS is still part of the problem.

    The Autism market does not seem interested either, it is economically viable at the moment to sell all those self improvement manuals and defecit models of autism. They don't want my writings or videos.

    I think one of the biggest things I can do for the next generation is to show them that it is ok to be yourself and sometimes it is OK to say bollox to the "authorities"

    By Blogger laurentius rex, at 2:41 AM  

  • Thanks for writing this. I would think, and certainly hope, that many disabled children and young people, eventually come across disability rights advocacy. However I reckon that many young autistic people grow up hearing only negative words about their autism. The buzzing could well be louder for them, than for people whose parents and charitable organisations, can recognise their humanity. I'm thinking of the difference in opinions between the Down Syndrome Society and the 'autism advocates' mentioned here.

    And to Larry; I'm certainly glad of the work you do in the NAS. You're helping to change that organisation for the better.
    Your letter to the Nature Genetics blog is totally brilliant too.

    By Blogger Sharon, at 5:52 AM  

  • Interesting contrast between this entry and Joel's.

    By Blogger elmindreda, at 3:50 PM  

  • Such an interesting blog piece, and such interesting comments and links. I can’t believe that Down’s syndrome people have an official organization that officially advises against the journalistic use of words such as “sufferer” or “afflicted”. Autistics don’t even have an autistic rights organization that does that for us.

    What to do with the younger generation of autistics; the tamed and drugged and diagnosed? Maybe euthanasia would be the kindest option? Yes, I do think there is a generation gap, created when people like my self start backing away….

    By Blogger Lili Marlene, at 11:50 PM  

  • Lili Marlene, I know you're just joking about euthanasia, but some of these guys actually do kill themselves, while their family members (who, in some cases, provide the means) look upon it as a merciful end to their suffering. So I think we're getting uncomfortably close to real euthanasia here.

    You're quite right that the generation gap wouldn't be the chasm it is today if all of the older autistics were willing to help educate and mentor the younger ones. Our blogs help to show different perspectives, but there is much that needs to be done in real life, as well.

    By Blogger abfh, at 10:21 AM  

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