Saturday, January 2, 2010

Does the Search for a Cure from Autism decrease Societal Acceptance of Autism?

A comment left on my post The Great Divide: Trying to figure out the Neurodiversity Movement convinced me to write about controversy between acceptance and cure.

The comment: “For me, the essential problem with the "cure" movement is that, too often, the search for a cure eclipses the acceptance of the autistic as he/she is NOW, and hampers our collective efforts to increase acceptance and respect for individuals with autism and other neurological differences. Again, I'm talking about the "cure movement" in general, not necessarily individuals who support it. I don't have a problem with most individuals who pursue a cure, provided they don't persist in using unproven therapies that are potentially harmful. I do object to groups that use pejorative language to promote the cure ideal, and with the (small, I hope) group of parents who put their kids through hell to find that elusive cure--that tells me it's more about the parent and his/her expectations than about the child's well-being.

With some parents it’s all about themselves regardless of whether the child is typical or not.  But I suspect you’d put me in that category too because I have used controversial bio-medical therapies.

Does focusing on a cure for autism eclipse acceptance for autism and hamper societal acceptance?

The unthoughtful answer is an immediate yes.  If one truly accepted their child’s disabilities there is no need to cure them.  Naturally, nothing is that simple.  One can love and generally accept a person while trying to change attributes, behaviors and so forth.  Parents should ask their children for better grades if they are capable of more, or to change behavior such as laziness, etc.  Does anyone accept everything about another person and is complete acceptance necessary for a loving, fulfilling and a mutually beneficial relationship?  Most people, rather than accepting everything about another, overlook some characteristics or behaviors.

There is an element of what one could call “unacceptance” in the cure movement.  It is a belief that autism can with therapy or treatment be cured, or its’ symptoms can be alleviated.  I believe that many parents feel an obligation to try to do so.

Part of where one stands in this dispute is decided by whether the parent believes autism is purely genetic or triggered by an environmental toxin, often a vaccine.  If one believes that their child’s autism was triggered by the environment should not their primary focus be on ameliorating the symptoms and curing the child?

I shall use the loaded, yet apt, metaphor of vaccines.  Prior to the acceptance of vaccines as preventative medicine, their use was controversial and regarded as dangerous.  Bio-medical treatments for autism are in the same stage vaccines started at – regarded as controversial and dangerous.  But there is reason to believe that many of the treatments could eventually become as prevalent as vaccine use.  Applied Behavior Analysis, now regarded by many as the Gold Star treatment for autism, was initially regarded as abusive, controversial, and dangerous.

Is acceptance of an autistic individual as they are now worthier or nobler than not accepting their present state?  I could argue that it’s nobler to search for a cure.  Acceptance doesn’t often lead to new discoveries or to as great accomplishments.  But in regards to autism it’s just preference or opinion.  Some children respond to bio-medical interventions and others don’t.  If the child doesn’t respond, that time and money would have been better spent on other interventions.  If the child responds, he makes larger gains than he would have with conventional interventions.

So, in regards to whether acceptance of or trying to cure autism is better, I will definitively say that it’s a matter of opinion.

Collective Efforts:

Do I as a parent of a child with autism have an obligation to society as a whole beyond my obligation to my disabled child?  Yes, I believe I do.  Both my family and my sons have benefited from those who came before us and we have the same obligation to those who come after us.  Does my search for a cure hinder those who will come after us?  And if so, does that obligation override my obligation to my children’s well-being?  I do not believe that in this case my obligation to future generations of autistic people overrides my obligations to my children.  Thus the only question to be answered is does my attempts to cure William of autism hamper “collective efforts to increase acceptance and respect for individuals with autism and other neurological differences?”

What message am I sending to society by trying to cure autism?  Clearly I’m sending a message that I believe it is less desirable to be autistic than typical.  But I would never send a message that William isn’t wonderful or that we regret him in any way.  William, in many ways, is the center of our family.  He is worth any sacrifice we have made for him.  Naturally, I wish he was typical for his sake, for my other children’s sake, for my husband’s sake and for my sake.  It doesn’t necessarily follow that my desire for him to recover is more about me than him.  I believe I’m speaking for most bio-medical parents when I say the realization that my life would be easier and less worrisome if he recovered or functioned at a higher level doesn’t make my attempts to cure him more about me than him.

Does admitting that I believe it is desirable to cure autism confuse the message of acceptance?

I think that people understand that parents want the best for their children.  My friend taught people in our church to sign so they could communicate with her son.  I know that she wished that he wasn’t deaf.  My aunt worries about the future of my cousin with Down’s syndrome.  Working to lessen or eliminate disabilities for individuals doesn’t damage that community’s message –their demands for accommodations and respect.

8 comments:

KWombles said...

"It is a belief that autism can with therapy or treatment be cured, or its’ symptoms can be alleviated. I believe that many parents feel an obligation to try to do so."

I think that where the "symptoms" are negative, all good parents work hard to ameliorate these issues through a variety of methods. It would be a terrible misreading of neurodiversity and the idea of acceptance to take it as a do-nothing approach.

"Part of where one stands in this dispute is decided by whether the parent believes autism is purely genetic or triggered by an environmental toxin, often a vaccine. If one believes that their child’s autism was triggered by the environment should not their primary focus be on ameliorating the symptoms and curing the child?"

Again, an unfair and inaccurate assertion that those who do not hold vaccines as causal agents believe autism to be purely genetic. Scientific evidence does not support a "purely" genetic autism. Scientific evidence at hand doesn't support a link between vaccines and autism.

"Prior to the acceptance of vaccines as preventative medicine, their use was controversial and regarded as dangerous."

Since the smallpox vaccine has been around since the 1700s, when did this occur? To whom was it controversial and dangerous? And why would this have any relevance to the efficacy and safety of current autism treatments?


"Bio-medical treatments for autism are in the same stage vaccines started at – regarded as controversial and dangerous."

This is vague, unsupported, inaccurate and irrelevant.
Specifically how are you defining bio-medical treatments? Are we talking nicotine patches? Lupron? IVIG? Chelation? HBOT?

It is, again, a tremendous disservice to suggest that parents who do not hold with untested treatments (and some of the treatments above that have been tested and found ineffective and dangerous) are against medical interventions which are by composition biological interventions. Many of us parents who, for lack of a better defining angle, are supportive of neurodiversity have or do currently use medical interventions for our children to mitigate some of the distressing (for the child) symptoms of their autism.


"But there is reason to believe that many of the treatments could eventually become as prevalent as vaccine use."

Since vaccines are universal and autism is 1% of the population, even if every autistic individual used the treatment, it would still never become as "prevalent."

"Applied Behavior Analysis, now regarded by many as the Gold Star treatment for autism, was initially regarded as abusive, controversial, and dangerous."

It still is to many, especially the use of aversives. It is also irrelevant whether a prior treatment was considered to be something or not. It has no bearing on a proposed treatment. Scientific evidence should.


When considering a treatment, it is not relevant what reception another medical intervention unrelated to the treatment at hand had. In fact, it doesn't matter if they're similar. What matters is whether the treatment has an scientific backing for it and whether the risks outweigh the possible benefits.

I don't think Squillo was attempting to label you as a selfish parent.

Squillo said...

I don't think striving for a cure for autism is what is a threat to acceptance per se, although I know people I respect who will disagree with me. I think the language often used by the cure movement as a whole, especially in some of the fundraising, is. Look specifically at the 800-lb. gorilla, Autism Speaks. I respect the fact that they want to raise funds, both for finding a prevention or cure, and for helping people living with autism, however, I think it is unconscionable to use the kind of scare tactics and language they have consistently used, which is harmful to and dismissive of all people with autism whether they want a cure for their condition or not. Imagine the same language and imagery applied to many other disabilities. As for Generation Rescue/Age of Autism; I don't think at this point they really are primarily about autism.

Nor do I think that accepting a person as he/she is now excludes treating the disabling aspects of his/her condition, or attempting to cure him/her of the condition as a whole. What I was trying to express--badly, obviously--is that for some parents, the search for the cure becomes something that leads them focus more on the mission than on the individual child. Obviously I can't peer into the psyches of others to suss out their innermost motivations, but when I see what a few people have publicly (and often proudly) admitted to doing in an attempt to cure, it looks to me like they are sacrificing the well-being of the child they have for one they dream might exist if only they find that one elusive magic bullet. To my mind, that is when it becomes selfish,however much they may protest that it's about doing everything and anything to help their children.

There is certainly a gray area, and room for heated debate, but in my opinion, parents who simply pursue the usual bio-med paths don't fit that description. I may personally disagree with the idea of using things like chelation or HBOT outside of a carefully controlled clinical trial (and I think Kim addressed the issue of unproven bio-med treatments nicely) but I would never say they are selfish for doing so. I make no claim to being the arbitor of when pursuit of a cure tips over into madness, but I think it boils down to a question of risk/benefit: How much risk (or suffering on the part of the child) is one willing to undertake for modest or uncertain gains?

As Kim said, the "genetic vs. environmental causation" issue sets up a false dichotomy. I haven't seen many people who reject the vaccine causation hypothesis who claim autism is likely 100% genetic. Most of the absolutism I've encountered comes specifically from people who believe autism is mercury or other heavy metal poisoning, however even people who believe environmental toxins are the cause often seem to believe that there is a genetic susceptibility at work as well. Again, though I think it's the language that bothers me more than the actual belief. Even if I believed that my son's condition was caused by a vaccine or a toxin, I would find it objectionable and counter-productive to label him "vaccine-damaged" or something similar. I understand that the term is intended to convey the seriousness of the perceived problem, and the anger some parents have over what they believed was perpetrated on their children, but to refer to a person who is--via whatever mechanism--neurologically different from the norm--as "damaged" is to denigrate the value of that individual.

Apologies for the length of this comment--it should have been a post on my own blog--but I wanted to respond quickly.

Life as the mother of 4 said...

Kim,

I think you have been pretty clear both on your blog and elsewhere that you support therapy and working with your children to help them succeed. I was trying to point out that no one accepts everything about anyone else in relationships. From what I read about ND on the internet there is an element of anti-behavior changes, etc. but I have no idea how prevalent that is. I would have to defer to someone who knows more about it.

It’s only been recently and quietly that governmental agencies have conceded that the increasing numbers can’t all be due to better diagnosis and misdiagnosis, recently Dr. Insel said there had to be an environmental factor.

My vaccine metaphor was an attempt to show that a current mainstream medical treatment (vaccination) didn’t always have widespread acceptance even with doctors. I also thought I was apt because there are still some people and doctors that question the safety and efficacy of some vaccines. And even if some of the current bio-medical treatments for autism become mainstream sometime in the future I believe that some people and doctors would continue to question those treatments.

Edward Jenner and the history of smallpox and vaccination
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1200696/

"Bio-medical treatments for autism are in the same stage vaccines started at – regarded as controversial and dangerous."

This is vague, unsupported, inaccurate and irrelevant.
Specifically how are you defining bio-medical treatments? Are we talking nicotine patches? Lupron? IVIG? Chelation? HBOT?

I lumped all the bio-medical treatments together. In time, some will be discarded.

It is, again, a tremendous disservice to suggest that parents who do not hold with untested treatments (and some of the treatments above that have been tested and found ineffective and dangerous) are against medical interventions which are by composition biological interventions. Many of us parents who, for lack of a better defining angle, are supportive of neurodiversity have or do currently use medical interventions for our children to mitigate some of the distressing (for the child) symptoms of their autism.

Maybe there should be a more mainstream movement that advocates for societal acceptance that draws from both the ND and cure crowds.

"But there is reason to believe that many of the treatments could eventually become as prevalent as vaccine use."

Since vaccines are universal and autism is 1% of the population, even if every autistic individual used the treatment, it would still never become as "prevalent."

I meant prevalent in treatment within the autistic community.

ABA is no longer controversial.

I don't think Squillo was attempting to label you as a selfish parent.

I don’t either and I didn’t take it that way. I thought a lot about what she wrote.

Life as the mother of 4 said...

Squillo,

I hate Autism Speaks.

I think you’re right about some people taking bio-medical to far, but I’m disappointed some parents don’t even try things like the GF-CF diet. Although, I understand why they don’t; we didn’t start Will on it until a year after we heard about it because we thought it was ridiculous. I think people have a path of acceptance. I assumed that Will was going to recover as easily as Jake. It honestly didn’t occur to me that he wouldn’t. So, it took me longer in some respects to realize how impaired he was. I’m also luckier because I have more kids to demand attention and everything can’t be focused on Will. Perspective depends upon where you are. I think when kids are in the window (3-5 yrs.) emphasis should be recovery; as they age emphasis moves towards quality of life. But my perspective certainly has changed over the last four years.

I agree about weighing the risks vs. benefits regarding treatment.

“Our side” has been saying for years that our children have a genetic susceptibility to environmental toxins; I think that is overwhelmingly accepted. I understand what you are saying about labels. I don’t believe anyone is trying to denigrate the value of individuals especially not of their own children. I’ll think about that more. I don’t use the term vaccine damaged. I say that Will was genetically susceptible and that his autism was triggered by vaccines. Do you consider how I phrase that the equivalent of damaged?

Don’t worry about the length. I commented on your blog because I wanted you to know I had written about your comment and wanted you to be able to respond.

Regards.

Squillo said...

If I were a betting woman, I would put my money on a "genes load the gun, environment pulls the trigger" hypothesis for autism causation. Vaccines are one of the few potential culprits that has been extensively studied, so I'm comfortable that they aren't the trigger in the vast majority of cases, although there are certainly kids that have serious reactions with neurological consequences. Whether or not these reactions are autism, or another entity with an entirely different etiology but similar symptoms is an important question in terms of the science, but is, at the moment, a distinction without a difference in terms of treatment.

I agree that nobody is trying to denigrate individuals; I think people simply don't realize the effect of using terms like "damaged." It has shock value, but is a poor descriptor for a human being because it reduces him/her to the level insensate objects. (I object to "brain-damaged" for the same reason.) There is enough public misconception that autistics are either idiot savants or unfeeling automatons for that to be particularly inapt.

And no, I don't consider your term equivalent to "damaged"; yours seems to me an accurate description of something that happened to your son that, to my ears, isn't at all denigrating or reductive.

In any event, I very much appreciate the opportunity to discuss these issues without things turning into an exchange of ad hominems, which too often occurs when people in the autism community disagree.

Anonymous said...

From reading the above exchanges, it appears to me a glib summary would be:

Cause=Environment: Label="Damaged"
Cause=Genetic: Label="Defective"

Neither label is acceptable as they carry a negative connotation. Seems like a lot of energy being expended arguing for label = "Different".

OK, "Different" identifies the current state, but doesn't say why. Acceptance is one thing. "It's OK that you were damaged" is certainly another.

If I meet a man with one arm, it's natural to wonder (if impolite to ask) what happened? Was this a tragic accident, or was he born that way? If so, was this due to an in-utero environmental exposure? A battle injury, or industrial accident? These questions are important as understanding cause leads to prevention.

This is a much more important question for autism. There are billions of dollars at stake that will be wasted or spent ineffectively if we choose poorly. The 'treatment' for a one-armed man is prosthetic, and societal acceptance. The treatment for an autistic child is ___, and societal acceptance.

If a child is damaged by an environmental exposure, we need to stop that from happening, undertstand the mechanism, and whether the damage can be undone. If genetics make the child susceptible, then we need to focus on testing for inherited susceptibility and alert the parents.

"Neurodiversity" works for societal acceptance, while BioMedical "cure" efforts focus on causality. Seems to me we need both, and arguments between the two are misdirected effort.

Anonymous said...

Afterward:

My glibness was not meant to be rude or to start an argument. My concern is that our efforts can't just be for acceptance, we have to focus on understanding cause, and labels are useful tools. Those outside the autism community have only so much attention to spare.

Squillo: FYI, I composed this the same time you were writing your post, it was not in response to it.

Anonymous said...

nice post. thanks.

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