Friday, October 24, 2008

Don't Cure Autism Now

It seems as if Frank Klein's essay "Don't Cure Autism Now" is missing from many links because of an issue with the home personal page that most set their links to. If Frank or anyone else has objections to me posting it here, please let me know, otherwise, here it is in it's entirety, I think:

"Cure Autism Now." "Defeat Autism Now." Those groups, and their
significant following of parents of autistic kids, are no friends of mine. They might assume that everyone shares their idea that autism is a horrible thing, and that it is obvious to all that autism must be eliminated. They would be wrong if they thought that. Like many fellow autistics, I do not see autism as a horrible thing. That is, though, not to say that I have nothing in common with the cure-autism crowd. Like them, I would like to see the suffering that can accompany autism to cease. I would like for all of the communication difficulties, the lack of self-care skills, the inability to live independently to cease to exist. That agenda is in common with that of the aforementioned groups. So why do I see them as the enemy?

Well, the answer is not hard to see. It's right there in the names of their groups, if you look. If they truly accepted us, as individuals that are equally valid, they would not be trying to cure us, or to defeat us. Intentional or not, that is how I interpret their efforts, and I am not alone in that line of thought. Being autistic is intrinsic; it is a part of who someone is, and it could not be removed (even if a cure existed)without irreparably damaging the person that once was. To cure me is to destroy me, and to replace me with someone else... someone more normal, someone that the more narrow-minded subset of the normal people can better tolerate.To cure autism is to eradicate people like me from the planet... to completely eliminate my kind. I see that as genocide. I do not see eliminating my kind as the "final solution" to the problems that can come along with autism.

The talk of autism as if it were a disease is in itself problematic; diseases are bad, after all, and as long as it is seen as such, the need for a cure will always be on people's minds. If "blackness" (as in being of the black, or negroid, race) was seen as a disease, there may be talk of a cure for that as well. People could point to the fact that black people, by and large, are less prosperous, less educated, and lead less pleasant lives than "normal" people (which refers to whatever group is large enough to declare their ways as being the correct ones). The same things could be said about autistics suffering because of who they are could be said about people that suffer as a result of their race. Of course, the difficulties faced by severely autistic individuals are far more severe than any problems based on race, but the point is that these difficulties, not autism itself, should be seen as "the enemy."

Think of the furor (or should I say f├╝hrer) that would exist if there was an effort to "Defeat Blackness Now!" Even if it were motivated by a humanitarian desire to end the negative aspects of being black, do you think that the black people would support that agenda? Of course not; they'd be up in arms, and rightly so. The folly in eradicating an entire group of people to eliminate the suffering that some of them endure (and the burden they impose on the majority group, which would rather not deal with them)is obvious using this example. I argue that it is no different with autistics.

Many normal people fail to delineate between the things that are at the core of autism and the things that are associated with autism, but are not in itself autism. The line is obvious to most autistics to whom I have spoken; really, it is obvious if you want to see it. The most unpleasant traits seen in autistics are generally not the core autistic symptoms themselves.

These associated symptoms will be present in some autistics, but not all of them, and are not a factor in diagnosis. Some of these things are mental retardation, severe sensory issues, gastrointestinal symptoms,
over excitability, self-destructive behavior, et cetera. Some people see these things, see the suffering they cause for both the autistic and his caregiver(s), and conclude that the autism is a bad thing.

It is true that these bad things are a part of the broader autistic syndrome, but they are not core features of autism itself. It is these things that I would like to see the curative efforts be mobilized against. Not all autistics have any one of these problems; rather than try to eradicate autistics from the planet, why not eradicate the bad things about it? That makes the most sense to me. Blacks have a higher incidence of several diseases, the most famous being sickle-cell anemia. Rather than wipe out the whole race to end the suffering from such things, wouldn't it be better to try to fix the specific problems instead?

The problem is that many normal people cannot see past their own desire for conformity and their pack mentality to see that autistics, weird as we may seem to them, are an equally valid kind of person as they are, and not in need of a cure, or of fixing. They see the bad things about autism, see the suffering they cause, and make no distinction between that and the "weirdness" autism causes. They make no distinction between the things that cause disability, and the things that cause difference. It's all problematic for them; it all needs to be cured. That is short-sighted,and ultimately would prove destructive for the entire species, normal or otherwise. It is not hard to see that many of the great thinkers in society have had enough autistic symptoms to seriously consider whether autism is linked to genius (I have made the case previously, in my article entitled Autism, Genius, and Greatness). The link between "eccentricity" and genius is well-established; this eccentricity," as it stands, happens to look a lot like what we now call Asperger's Syndrome (AS). A disproportionate number of the great thinkers, scientists, inventors, and innovators in history had enough autistic symptoms, as documented in the historical record, to assert that they probably were on the spectrum. As it turns out, many of the traits of AS just happen to be the things that are needed by society's innovators and thinkers. Curing autism would make people like them more normal, but is that really what we want to do? To make a genius normal is to take away his gift; to take away the gift that geniuses give to society.

While the literature comments that about 80% of autistics are low-functioning (mentally retarded), that really is not true. It has been estimated that there are about four people with AS for every autistic proper. It is no longer much of a question as to whether autism is related to AS; it is now well-accepted that they are on a spectrum, and are indeed the same condition in varying degrees of expression. It has also been observed that people with AS are generally above average, often well above average, in intelligence. As such, autism is not a condition that usually causes retardation; as few as 16% of people on the spectrum are retarded. The 80% that is the AS group has a disproportionately large number of people with genius-level IQs. Since AS and autism are the same entity, only varying in degree of severity, eliminating autism would have the effect of eliminating AS as well.

"Curing" or eradicating autism to eliminate the problems of 16-20% of the autistic spectrum population, at the risk of losing a large percentage of society's thinkers, would be horribly counterproductive. Given that the lower-functioning people have the same genetics as those with AS (as can be seen in identical-twin studies where autism and AS co-occur in dentical siblings), it seems much more reasonable to find out why some end up low-functioning and why some end up as geniuses, and see if there might not be a way to prevent the retardation.

No one wants to see people suffer because of sensory issues, frustration from inability to communicate, or to be unable to live without constant assistance, as is the case with many autistic people throughout their lifetime. That does not, however, mean that the whole group, necessarily including the more able autistics like myself, must be eliminated. The formula is so obvious to me-- eliminate the awful things associated with autism, and celebrate and appreciate the wonderful contribution that the difference between normal people and autistics brings to society. Don't wage war against autism-- if you win... I mean, if you really defeat autism...all of society loses. Let's celebrate autism, and help autistic people to be the best they can. We'll appreciate it, and society will be the benefactor.


Anne said...

Frank Klein's website is in the internet archive here.

Autism Diva posted about a radio interview he did in 2005, Frank Klein on the Radio. You can still follow her link and hear Frank's interview.

Frank Klein was one of the first autistic people I stumbled upon on the internet writing about autism. Although he has moved on to other things, I'm deeply grateful for the thought-provoking and compassionate essays he posted years ago. I hope he's well.

Foresam said...

Thanks for the link to Frank's radio interview where he said he was diagnosed with Asperger's at age 30.

Anne said...

You can read more about Frank's diagnostic history on his website. As far back as 2001 he discussed the question how he could have gone undiagnosed for 30 years. He also posted his test results from Dr. Minshew, who diagnosed him with Autistic Disorder. But I found his ideas about autism and autistic rights more interesting.

Phil Schwarz said...

Thanks for posting this.

anw_photographer said...

I DO want to be cured. If someone finds a cure someday, you don't have to take it, but I will.


That would all depend on what would be cured, how it is cured, and what was left over after the cure. If they 'cured' me of my inability to focus, but left me WITHOUT the ability to look at a problem from many different angles, would I be better off...unemployed? Since neither the cure nor even the symptoms TO BE cured are readily available or definable, it's hard to say to a populous 'we will find a cure for your "illness" '...

Juliett Darci said...

this helped me so much with my debate for school. i am so happy for your site, because the more reports i can get from autistic and aspie people and their opinion on the cure, the better. thanks again, Emily Noel( aka aspie)


Glad to hear it. This one is an older post. I posted it because someone back then was trying to find it and could not. I feel the essay was important enough to make sure that links and search engines would still be able to find it. I never heard any objections to reposting it. If you like, copy and paste it for a re-re post.

I track the traffic on my site from time to time. When only a handful are visiting each day (read: most days), this post is most often hit with a google search...

shell spectrum said...

I just wanted to say hello,I have autism I also have children with autism.

Abdul Rahim said...

The problem is not cure but reather dealing with autism.When dealing with autism, just as in most other disorders, you will be faced with a number of treatment options for yourself or your child. These include treatments that are educational, behavioral, biomedical, nutritional, and sensory. Unfortunately, for patients who are not affluent or who do not have good medical insurance, the cost of these treatments can be pricier than what they can afford. One way to ensure that you or your child receives the best possible treatment for autism is to carefully monitor the effects a treatment has over time. By finding out which treatments work and which do not, you can stop paying for the ineffective methods and put more of your money into those which are creating a positive difference.