Thursday, August 04, 2005

Autism is not equal to Cancer

As has been pointed out to me by Michelle Dawson, there are a lot of people in the world who think that autism - and autistic people - is a cancer that needs to be "cured". In my post, "Somewhere Over the Rainbow - The Search for an Autism Cure", I used the lunacy of "a cure for all cancer" to highlight, by analogy, the ridiculous practitioners who propose that they have a "cure for all autism". I did not then - and do not now - want to imply any similarity between autism and cancer, other than the fact that both are plagued by an inordinate number of quacks, cranks and crackpots who claim to have found a cause, a cure or a prevention.

After hearing from Ms. Dawson - at length - I realize that even putting the words "autism" and "cancer" in the same paragraph can be painful to people who feel that their very right to existence is challenged on a daily basis by the aforementioned quacks, cranks and crackpots. It was insensitive of me to do this, although I must plead the extenuating circumstance of ignorance. Ignorance is not a good defense, but it is the only one I have.

This brings us to the issue of how to deal with a "condition" that some people (including a lot of legitimate and well-meaning scientists and physicians) consider a disorder and other people consider to be their somewhat unique way of viewing and interacting with the world. I am reminded (with the gentle help of Ms. Dawson) that homosexuality was - in my lifetime - considered a mental disorder, as well. It should come as no surprise, then, that many autistic people are angry at the implication that they need to be "fixed" or "cured" of what they feel is a legitimate alternative way of thinking.

Fortunately, the debate is still theoretical, since there is currently no way such a "cure" can be effected. This does not, however, mean that the issue is resolved - it is just moot for the present. In the event that a "cure" or treatment for autism is discovered (however unlikely that may appear at present), what would be the ethical ramifications?

Would it be ethical to "cure" young children (still in their minority)? Would it be ethical to "cure" adults who are unable to communicate and thus cannot give consent (or withhold it)? Would it be ethical for guardians of adults who have been adjudged incompetent - due to their inability to care for themselves to our standards - to consent to this "cure" for their charges?

If you are reading this paragraph in the hope that I will present an answer to these dilemmas, you are about to be disappointed. This issue is far from clear and equally far from resolution. The whole issue, in fact, is being ridiculed by many of the people who claim to speak for autistic people. I direct you to Ms. Dawson's excellent website, "No Autistics Allowed" for the appalling details.

The fact is that there are many people who claim to speak for "autistic people", but few of them are autistic themselves. This would be acceptable if autism were like being in a coma or a "locked in" condition, where it is impossible to have the condition and still be competent. But autism isn't like that. Many autistic people - far more than Lenny Schafer, David Kirby, Dan Olmsted or JB Handley would lead you to believe - are living independently and are (gasp!) able to communicate clearly and eloquently. And even if they aren't so eloquent, they are still able to compose the shortest complete sentence in the English language - "No!".

So, it might be time for all of us to start thinking about a few things. I'll give you a few "starter questions" to help you compose your thoughts:

[1] Why are autistic people being shut out of organizations that supposedly exist solely to help people with autism?

[2] What are the implications for autistic people of calling autism a "holocaust", a "blight on society" and a "catastrophe"?

[3] Is it acceptable or ethical to "cure" people of a different way of thinking?

[4] Is it acceptable or ethical to refuse to "cure" or treat a condition that is a profound disability in some people because other people find it is a different way of thinking? (This assumes - without data to support the assumption - that the two conditions are, in fact, the same. They may not be.)

These and many other stimulating and engaging questions will need prompt answers if a "cure" or treatment for autism is ever discovered.

Until then.



Blogger Kev said...

Thank you Prometheus. That means a lot :o)

05 August, 2005 10:32  
Anonymous Anonymous said...

Hi Prometheus,

Thanks. I appreciate this.

For a very relevant and outstanding piece of writing, which should be mandatory reading for anyone making decisions about what is good for autistics, see (there are superb photographs also).

05 August, 2005 22:55  
Blogger Autism Diva said...

Muchas Gracias and another tiara for good measure.


06 August, 2005 02:18  

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