NEURODIVERSITY: JUST SAY NO
A number of high functioning autistics claim that there is a consensus among all autistic persons that finding a cure for autism would be a horrible thing. Autism is a part of who they are and to take away the autism is to take away the person. They go further to claim that autism is not really a disorder but just a different form of brain wiring--some call this philosophy "neurodiversity".
Some of them do acknowledge that autism is a disability. However, there is a distinction between a medical model of disability-wherein the person has a disease state and the social model of disability--the disabled person would not be at a disadvantage if society made accommdoations for them.
I am a diagnosed autistic, nonverbal, feces smearing at age 3, 8 year veteran of special education yet I do not share this view. I long for a cure for autism though a cure at age 52 is not the same as at age 3, even in the unlikely event of a cure being found in my lifetime. Somehow I got missed when they took the census. So they are incorrect about all autistics.
Is this a viable philosophy that will help autistics and their families? Is there a consensus for this philosophy among most autistic persons? Are the people who espouse this philosophy typical of autistic people in general? I would like to address these questions in this journal entry.
My problems are many. I have been fired from multiple jobs and had to retire from paid work at 51 (I am 52 now). I have never had a girlfriend. Sometimes i would make above average errors at work, though there was some discrimination as well, this does not fit in with neurodiversity's solution of accommodation. Is it morally justifiable to force a woman to have sex with me and other socially starved autistics? Is discrimination the same as sexual disinterest? These are issues that neurodiversity can't seem to reconcile. I also have problems applying myself and staying on task which has made it difficult for me to do many things I wanted to do like learn computer programming and about computers and do more writing and do requisite research for certain types of writing. It has also given me perceptual motor impairments and bad handwriting impairments. What do these things have to do with societal accommodations.
What about persons like Dov Shestack, Russell Rollens and less high profile severely autistic people who can't talk and bang their heads against walls? How will societal change stop these behaviors. Neurodiversity just claims that something should be done about it but they always seem to come up short of suggestions. What about the fact that many (though not as many as once thought perhaps) autistic persons can't speak? Facilitated communication is given as the answer in many cases. But this unproven technique, even assuming it could be used for every nonverbal autistic certainly is not the same as normal speech and would not enable them to function at the same level as a normal speaking person.
"I am an adult, I have the right to my own body, I have a right not to be cured if there is a cure available". This might be a response from a neurodiverse person, but the problem with this is that a number of these people who preach these ideas saying that autism "is only a difference" are often on SSI or are clients of state regional centers or have other taxpayer provided services for them because they have a disability. This inconsistency is frequently reconciled by putting into force the social model of disability argument.
They have difficulty finding good autistic role models to foster their arguments, with the possible exception of someone like Temple Grandin. So, they resort to arguments claiming that Bill Gates is autistic and that if autism had been cured when Gates was a toddler he would not have been able to accomplish all of his great things. They use historical figures like Einstein and thomas jefferson and isaac Newton to claim autism is something great and should not be cured. The problems with diagnosing some of these people has been dealt with in my essay in the nonfiction part of my webpage and the interested person who happens to read this can be referred to my essay for more on the matter (shameless plug, I know). One of the persons who espouses this argument claims that autism equals genius and greatness when he himself is apparently incapable of even holding down a minimum wage job and is on the dole.
One young, angry autistic female even goes as far as claiming that persons desiring a cure for autism are responsible for the murder of Katie McCarron, a 3-year-old autistic girl who was brutally murdered by her mother when her mother could not deal with her autism and other autistic toddlers who were senselessly murdered by their parents. I do find this reasoning insulting, insinuating that I am even in an indirect manner responsible for a small autistic child's murder.
Another strawman argument is that cure and prevention are in reality code words for abortion and one offensive cartoon on the web page autistics.org implies this line of thinking. The only reason that genetic research is done on autism is the intent of deliberately finding a way of aborting autistic fetuses. Of course it would never occur to them that someone might want to find a way to delete or insert certain genes to avoid the effects of a mutation that would cause the child to have grave harm throughout their life.
Are these people typical of autistic people? Is there a consensus among persons on the autistic spectrum on this point of view. Someone can claim that they took a survey showing that 99.9% of Americans are in favor of completely overturning Roe Versus Wade, support Mike Huckabee or possibly Pat Robertson for president in 2008. The problem is the survey was taken in a small neighborhood in Biloxi Mississippi. I believe that this is analogous to claiming almost all autistics believe in neurodiversity. The internet has given a medium in which a small vocal minority can espouse their opinions and make it look like they are a much bigger group than they are. Most persons with an autism spectrum disorder have never had a web page or have expressed their opinions in the comments section of someone's blog and never will. They don't have the intellectual inclination to do such a thing. I am not trying to speak for any person with autism other than myself.
I also notice that many of them were not diagnosed until they were adults, some have married and some have kids. With one exception, none of them have, to the best of my knowledge ever been in a special education setting as I have. The one exception is someone who was able to talk as a child and then allegedly lost her speech as an adult. Some persons on another web site have even accused this person of being a fraud. Though I don't know whether or not she is a fraud, it does seem unusual for someone to be able to speak as a toddler and then lose the speech as an adult and have to use a communicator. This does raise some questions. It is between ages 18 and 36 months that an autistic person will lose their speech, not as an adolescent or in late childhood or adulthood. Another thing that comes to my attention is that a disproportinate number of them are females. It seems as many or more females than males are claiming to be autistics with a neurodiverse inclination. This is in spite of the fact that the literature on autism has consistently shown the condition to have a 4 to 1 ratio of males to females. The ratio may be as high as 10 to 1 in the higher functioning groups according to some studies. A cliched argument among allegedly autistic neurodiverse females is that autism is underdiagnosed in females. Females are not as aggressive, they are more inclined to be social than boys and can pass more easily so they are not as often diagnosed. Interestingly, this is the same argument that ivar lovaas and Tristram smith used to explain the sex ratio discrepancies in their control group versus the experimental group in the study on ABA in autism.
One of the problems with this argument is that similar ratios are found in other developmental disabilities such as dyslexia and stuttering and not just in autism. How does one explain underdiagnoses of female stutterers based on the social arguments or being able to "pass".
I am a male, lost speech at 2-1/2, regained it before age 5, special education alumnus. I believe that I am more representative of at least the vast majority of persons who preach neurodiversity as the answer and I want a cure, though I realize that it is improbable there will be one in my lifetime.
The neurodiverse are not dissimilar to Christian Missionaries who go out and try to convert lost souls. They can often reach a vulnerable audience as many persons on the spectrum have been disaffected from society. They feel worthless and have low self-esteem and neurodiversity provides a tempting escape valve. The same is true for parents of sometimes severely autistic children who want to see their offspring as something other than deficient or broken. Some of these parents themselves end up deciding they themselves are on the spectrum out of the clear blue sky well into adulthood, though sometimes diagnosed by a clinician at least allegedly. The problem is, the autism is still there, the problems are still there. They will never go away or be prevented if a neurodiverse attitude is taken. I hope that if any person touched by autism happens to read this and someone from the neurodiverse crowd gives them a homily trying to convince them of their way of thinking that they will, in the words of Nancy Reagan, just say no.
>>posted by jonathan at 11:31 AM
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