BioPsychoSocial Health
Autism – No Need For A Cure?
The prevalence of autism has increased nearly 1000% in the United States over the last 15 years. Now, as many as 1 in 150 children may be diagnosed with autism spectrum disorders. We now include people who would have been previously diagnosed with mental retardation, as well as people who were merely labeled “eccentric,” on the autism spectrum. Research into the causes, treatments, and cures of autism is extensive, and covers the entire scientific continuum. Supporters, advocates, and opponents of autism rights, likewise, run the gamut from those who think autism needs to be cured, to those who think that autism is simply a different way of functioning and needs no treatment at all.
The neurodiversity movement is not new, though it is gaining in strength and numbers around the world. Its supporters, often parents of autistic children as well as adults with autism, believe that autism is not an illness or disease, but merely an atypical way of functioning. They contend that society must embrace this different way of thinking and functioning, just as we accept diversity in culture, religion, sexual orientation, and personality. The supporters of the neurodiversity movement argue that people with autism are not incapable of learning certain skills or participating in social interactions. These abilities must simply be learned and practiced in a different way. Autism, these activists contend, is simply an alternative way of being.
According to recent research, people with autism who accept the neurodiversity platform have more self-esteem, and have more academic and career ambition that those who see autism as a medical condition with its array of disadvantages. In one study, students with autism who held the latter view more often applied for special assistance and monetary allowance through disabled students programs. Not surprisingly, most neurodiversity advocates with autism are high functioning, with little to no significant intellectual impairment.
There is fierce disagreement among autism rights activists, of which neurodiversity supporters are one-third of the argument. Another set of activists insists that toxins, mostly vaccines, cause autism and these poisons and pollutants should be removed from the environment to cure autism. There is a third group of activists who believe autism is a genetic characteristic and should be cured by concentrating on genome research. Each group believes the other is either redefining autism or trivializing a serious disease, depending on which side of the debate they support. However, the one thing they share is a desire for people with autism to have a happy and fulfilling life. How they get there is another story.
Many neurodiversity supporters are against almost any treatment, and generally do not support many of the drug therapies used in children with autism. While many parents are willing to try any medical treatment, even experimental ones, to treat their children with autism, some neurodiversity advocates do not even support behavioral therapies for autism. The only neurodiverse option is to accept the autistic person for who they are, differences and all. However, are these advocates willing to give up the protection of autism spectrum disorders under the United States Americans with Disabilities Act? They want children with autism to feel special and unique, but what if they need special education classes? How do they explain the vast differences between mild social impairment and severe disability that fall under a single “autism” label? Some neurodiversity proponents seem to want to have it both ways: autism as a disability when it suits them, and autism as a socially acceptable norm the rest of the time.
We, undoubtedly, live in a diverse society: diverse in thought, action, and principles. We have made great strides to accept all types of people as a part of our collective standard. But, where does the acceptance end? Where is the line between “just a little bit different” and a diagnosis of a medical illness? Autism research will continue, and the associated debate will rage on, but it is unlikely that any one cause or any one cure will be found for the extensive spectrum of autism disorders.
References
Brigitte Chamak (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organisations Sociology of Health & Illness, 30 (1), 76-96 DOI: 10.1111/j.1467-9566.2007.01053.x
Edward Griffin, David Pollak (2009). Student experiences of neurodiversity in higher education: insights from the BRAINHE project Dyslexia, 15 (1), 23-41 DOI: 10.1002/dys.383
Solomon A. The Autism Rights Movement. New York Magazine. 2008.
23 Comments/Trackbacks
Lisa G.
Jennifer
You wrote:
Many neurodiversity supporters are against almost any treatment.
I don’t think that is an accurate reflection of the position of neurodiversity. A more accurate statement would be that neurodiversity aims to accept the person with autism, and then to work together to ameliorate the difficulties faced by a person with autism.
I’d recommend that you read this blog entry as an introduction to the philosophy.
http://mikestanton.wordpress.com/my-autism-pages/what-is-neurodiversity/
Joseph
Not surprisingly, most neurodiversity advocates with autism are high functioning, with little to no significant intellectual impairment.
Based on the official definition of “high functioning”, i.e. an IQ of 70 or above, then this is probably correct (could it be any other way?) If, on the other hand, this is intended to mean that known neurodiversity advocates don’t have major life impairments, I’d like to see evidence to back up the statement.
However, are these advocates willing to give up the protection of autism spectrum disorders under the United States Americans with Disabilities Act? They want children with autism to feel special and unique, but what if they need special education classes?
That didn’t even make sense. Neurodiversity advocates, generally speaking, are very much in favor of disability rights, access to education, etc.
Joseph wrote: “could it be any other way?”
In my view, neurodiversity (which is part of the general idea that disabled people should have human rights) is best represented by People First groups, which are run by and for individuals written off by autism advocates as “low-functioning.” People First groups have done more than anyone else to establish and defend the human rights of developmentally disabled people. People First groups have done more than anyone else to improve the lives of all developmentally disabled people and have a whole lot to teach “advocates” in the area of autism–if anyone were willing to listen.
Neurodiversity is also represented by the Canadian Down Syndrome Society, which has been very successful in improving the lives of DS people. Here is one of their policy positions:
“Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it. Down syndrome itself does not require either treatment or prevention.”
As I’ve written elsewhere, only autism advocates would irrationally presume that the CDSS is really saying that DS people (unlike all other human beings) do not need assistance or education or services, and that DS people (unlike all other human beings) never suffer at all and never face any challenges or difficulties.
I think you’re stereotyping the neurodiversity movement somewhat. Yes, there are some who oppose any kind of treatment. But there are others who see some aspects as benefiting from treatment, and others as neutral, or even positive, aspects that don’t need to be treated. The problem with the people on either extreme is a tendency to view autism as monolithic, as either all bad or all good.
Lisa G already made a lot of the same points I would’ve, but let me add that I think the situation of the Deaf is a good analogy to autism. Most Deaf people do not desire to be made into hearing people. They do not see their deafness as something to be cured, but rather, they advocate treatment that respects their condition, such as the use of ASL as opposed to oralism and a respect for the Deaf community, giving Deaf children a chance to interact with other Deaf people and the like. Technologies that help bridge the hearing and Deaf worlds, such as video relay, use of flashing lights instead of door bells, etc. Rather than attempting to turn Deaf people into copies of hearing people, they seek to build a place for Deaf people in a hearing world. I think that similar policies would benefit autistics.
Ken
Including the anti-vaccine crowd as a legitimate interest group is disingenuous. There is zero credible evidence that “toxins” cause autism. You may as well include as a fourth group those who blame evil spirits for autism spectrum disorders.
Wow, didn’t mean to slight the Jennifer, Joseph, and Michelle Dawson in my comment. Lisa G.’s was just the only comment on the page when I started writing mine. ![]()
I had one more comment to make. You wrote The prevalence of autism has increased nearly 1000% in the United States over the last 15 years. The number of diagnosed cases has increased nearly 1000%, but the actual prevalence may not have increased at all. As you yourself pointed out, many people who would’ve been diagnosed with other conditions, or even just as eccentric, are now diagnosed with ASD’s. It’s difficult to make a fair comparison between 15 years ago and today, but there have been studies that strongly suggest that changes in diagnostic criteria are the main, if not sole, cause for the apparent “rise” in autism rates.
Not even the idiots from Neuroinsanity are opposed to a cure. These propaganda wizards are only opposed to cures that produce evidence of Pharna’s negligence in causing the autism.
We’ve known for ten tears that autism is thimerosal poisoning and the Neuroinsane are just trying to deny this to support Pharma. None of the lunatics who oppose a cure actually have any form of autism. They’re all just liars playing roles to support Pharma.
Hi, this has been sent in for the latest round of Encephalon – really appreciated! Thanks and you can find it here along with another entry of yours: http://podblack.com/?p=1266
Autism myths. I have written about this topic. I am Asperger’s autistic. Check out Aspitude
Bloop
“Down syndrome is not a disease, disorder, defect or medical condition. It is inappropriate and offensive to refer to people with Down syndrome as “afflicted with” or “suffering from” it. Down syndrome itself does not require either treatment or prevention.
As I’ve written elsewhere, only autism advocates would irrationally presume that the CDSS is really saying that DS people (unlike all other human beings) do not need assistance or education or services, and that DS people (unlike all other human beings) never suffer at all and never face any challenges or difficulties.”
It does comes oh so close though that it fails in its message.
I look after someone with down syndrome. As much as I care for my friend, if someone thinks that the condition of down syndrome is not a ‘defect’ they don’t know what the word means.
windulima
Thank you for useful posting, cause my little sister has autism.
kscastings68
You may as well include as a fourth group those who blame evil spirits for autism spectrum disorders.
Annie Hewitt
I agree completely with the blogger who wrote about the Deaf Community. I have a Deaf granddaughter who would not even consider a cochlear implant. She is “Deaf.” She has more friends and community support and interaction than most of us hearing. I am sad to say that many folks, when I say I have a Deaf granddaughter, will respond with “Oh, so-and-so has a retarded child in the family, too.” There are two real problems about being Deaf (since technology has removed so many barriers): The ability to read and write English (a centuries-old problem not yet solved), and therefore the inability to gain information and knowledge, leading to the second big problem: and the lack of employment or employability, leading to a sense of entitlement and irresponsibily. I wish more work would be done on these…I know I’ll never see it happen, but I hope sometime…
Azkyroth
There is fierce disagreement among autism rights activists, of which neurodiversity supporters are one-third of the argument. Another set of activists insists that toxins, mostly vaccines, cause autism and these poisons and pollutants should be removed from the environment to cure autism. There is a third group of activists who believe autism is a genetic characteristic and should be cured by concentrating on genome research.
Including the anti-vaccine cranks in this statement is like saying “there is fierce disagreement among biologists, of which structuralists and developmental biologists are one-third of the argument. Another set insists that the earth and all modern life forms were created miraculously over a period of 6 24-hour days, about 6,000 years ago. There is a third group of biologists who believe that genetics and molecular biology are the best avenue for learning about the process of evolution on the planet.”
This discussion reminds me uneasily of the “schizophrenia is not to be tampered with” movement of the 60s and 70s, led by R.D. Laing in Great Britain. It’s misleading to contend that you can ask severe schizophrenics or people with severe autism whether they want to stay that way.
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The treatments for Autism should correspond with the severity of the impairment. I’ve seen cases of Autism that are so severe that the afflicted really, truly could not cope without some kind of behavioral treatment. Also though, I personally have Asperger’s Syndrome, and am confident that I could have easily coped without ‘treatment’, which was overall much more detrimental to my well being and self esteem.
It’s impossible to be absolutist about anything so varied without serving someone ill. The parents and friends of those with more severe Autism deserve to have their struggles recognized, and to obtain help. But those of us who are high-functioning also deserve to be treated in a way that serves to respect our own personal strengths and achievements, regardless of the syndrome.
Overall, I believe a lot of the onus really falls on those without Autism. My own life would have been a lot easier if children were taught to treat those with atypical social response with kindness, patience, and consideration. Bullying is rampant, and generally ignored by teachers and school faculty. This can be damaging to anyone, but even more so to those who are already prone to withdrawing from the world.
This extends into adult interactions as well.