Susan Senator
All happy families are not alike...
All happy families are not alike...
The Autism Divide
I have become fascinated with the division in the autism community between those who believe there is a cure, and those who believe there is not. I feel sympathy for both viewpoints; I know people in both camps. Those who believe there is a cure tend also to believe to some degree that autism is the result of an injury, one that can be corrected. The injury can be “mercury poisoning,” or other toxins in the environment (vaccines in general, food additives). With the belief of the mercury injury comes the belief that if you treat the body and its now compromised immune system with a diet that detoxifies, (gluten-free, casein-free diet) and with other chemicals that draw poisonous metals out (chelation), you can either reduce successfully the symptoms of autism or reverse it entirely. There are some who believe autism can be reversed or reduced through other, more traditional autism approaches, such as Applied Behavioral Analysis, Floortime, and Son-Rise. What these people all have in common is the belief that autism is something to reduce, change, stamp out, or cure.
Those who do not believe that autism is something to cure usually see autism only as a kind of atypical neurological wiring. They see autism as genetic and neurologically based, something you live with, something that adds variety to the world. Something that gave us brains like Einstein. They believe that autism is a way of being, the symptoms of which should be ameliorated if possible (using various approaches that have existed for autism for some time, such as speech/language therapy, Applied Behavioral Analysis, or ABA, and Floortime, or DIR, for example). But this camp believes that ameliorating the symptoms of autism should be done strictly for the comfort of the person with autism, for allowing him to express himself better, to increase his ability to be happy. They feel that it is society who must change, who must become more tolerant of autistic behaviors and challenges that arise from being neurologically atypical. They see autism as another political minority, “neurodiversity,” that must be accommodated the same way modern society accommodates other disabilities and strives to include and give equal access to any other minority.
Many in these two camps feel that one group is a threat to the other. They feel that if you want to cure autism, if you see it as something that must be treated and cured, then you must not be able to accept the person with autism. They feel insulted by the “curebies” whom they say believe you can stamp autism out and should subject autistic people to all sorts of treatments, some of which may not be scientifically proven. They ask, “How can you give your child this message, that he is something fundamentally diseased, and must be changed?”
Those who believe in the cure see this faction as irresponsible; they ask, “How can you not try to help your child in any way you can? Why would you want him to be autistic?”
I am very frustrated with the two groups’ inability to see any good in the other. I understand so well on one hand why a parent would want to reduce their child’s autism, and it is NOT just because they are selfish and cannot see how wonderful the child is, autism and all. Behaviors that come with autism (as well as other conditions people seek to ameliorate), such as bolting, inexplicable tantrums, unpredictable aggression can wreak havoc in a family and be very hard on the child himself. As parents we must always try to give our children the tools to succeed in this very difficult world. We must, as a reality, take care of our other children and ourselves.
On the other hand I also understand how important it is to educate others in tolerance, accommodation, acceptance. We must consider the damage done to a child when he is constantly being “treated” for nearly every natural response he has to the world around him. To be able to accept our own and others’ limitations and still be happy is truly something to strive for. Both groups have something of value to say, whether you believe in mercury poisoning or not.
Bottom line is, both viewpoints spring from love of someone autistic. Both are trying to help autistic people live better lives, albeit from extremely different positions. One seeks to change what is inside the autistic person; the other seeks to change how the world treats the autistic person. Why not take the elements that are useful from one group’s beliefs and discard the rest?
9 comments
E-mail Susan
On Facebook
@susansenator
First of all, *thank you* for being the first voice I’ve heard to actually name the elephant. My experience is people in the opposing “camps” mostly just politely listen to one another and walk off with heads shaking. My personal belief is this situation is like others of this ilk: there’s validity on both sides.
In the case of my own son, we have no reason (or scientifically grounded evidence) to believe that mercury poisoning or some other metal or toxin is the cause of his autism. He was always delayed developmentally and is otherwise healthy in every way (no stomach or digestive track issues, no food allergies, …). Having said that, after reading volumes of information about the effects of mercury, gluten intolerance, etc., I tend to believe that some people have a genetic propensity to react acutely to a substance or group of substances effects. And hey, if the medical world can find a way to reverse those effects, I am ALL for it!
Of course, if I could make the autism “go away” for my son, I’d do it in a minute. However, at the same time, I do cherish his unique way of looking at the world, his offbeat demonstrations of affection and his suprising academic capabilities. He is a gift, autism and all. I, like the rest of us, just hope to make it possible and easier for him to navigate his way through a very complex and at times, cruel, world.
Again, Susan, my hat is off to you for calling this point out. I hope more of the folks in the two camps can begin to acknowledge the value of combining their forces to help our kids. Count me in! 🙂
I can understand your frustration with the high level of animosity between the two “camps,” and as I mentioned on Kev’s blog, I admire your effort to describe the controversy from a neutral point of view and to try to find some common ground.
You have accurately identified logical points where the two sides ought to have some overlap, but I’m afraid there is much more to the argument. The two factions are not just disagreeing about abstract philosophical beliefs on parenting; what we have here, instead, is a clash of viewpoints that arise from completely different life experiences, and both groups are feeling personally threatened.
The pro-cure faction seems to consist largely of people who have no previous personal experience with autism and who perceive their children as victims of a terrifying epidemic. They worry that if they do not act aggressively to “stamp out” autism, their children will never be able to live independently. When they see neurodiversity supporters arguing against ABA or circulating petitions to ban chelation, they react as if this is a threat to their only hope of saving their children from what they view as a fate worse than death.
On the neurodiversity side, there’s a substantial number of autistic adults and multigenerational autistic families. From their point of view, autism is just one of many possible variations of natural human development. When they look at autism-awareness campaigns, they see intolerance, not an effort to help children. When they read about government registries and prenatal testing research, they see an impending genocide.
Conspiracy theories are rampant on both sides; one faction argues that the government is poisoning kids with vaccines, and the other believes that it’s trying to kill off the autistic population through eugenics.
As frustrating as these arguments may be, though, I see the fact that we’re now having conversations between the two sides as a positive development. Last year, if you looked on the Internet for information about autism, you would have found almost nothing about neurodiversity and a mountain of ugly and misleading stereotypes. (I know this as a fact because I did some pretty extensive searches.) With so much prejudice out there, many autistic people didn’t dare to express themselves and instead felt that they would have to spend their entire lives “in the closet.”
As I see it, the only way to overcome ignorance is to bring all these fears and stereotypes out in the open and talk about them, even though it may be an uncomfortable process at times.
You describe the division of parents of children with autism so well, Susan. While my feet remain firmly planted in the “my son’s autism is part of his genetic make-up” camp, I really try to understand the “other side”. Really. However, in the end, what we choose for our little boy is to love him, send him to school and therapy, at times advocate for more effective services, and accept him for who his is. The unique perspective he brings to our world, and the fact he is mostly very happy within his own world, gives me pause when anyone mentions trying to “cure” him.
Susan, thanks for your comments from both sides of the fence. Our son, as well as having autism, has Noonan’s Syndrome. Our Dr.s believe that Ben’s Autism and white matter encephalopathy were caused, or are a part of his Noonan’s Syndrome.
I would try anything to make Ben’s world a better and easier place for him. We began early intervention when he was 18 months old – still without a correct diagnosis. But early intervention is the key to progress!!
My main concern is the way others treat Ben. His peers and classmates, teachers, special educators, and administrators have all been very cruel to Ben throughout his life. We have had him hospitalized for suicide and we feel that we are always on “suicide watch”. He is very depressed. He constantly says that all he wants is a friend.
What can we do about this? My husband and I are huge advocates for Ben and we are constantly trying to work with school, church, and community to try to see that Ben is at least accepted – different, yes, but accepted. Ben has so very many strengths and gifts and we recognize these and praise him for them on a daily basis. Others do not.
He has been seeing a great psychiatrist and psychologist for years.
But this does not help others to simply recognize Ben as different, and then simply accept him and go on with their lives. We have never asked for other children to be friends with him – just accept him and work with him in the classroom, in Boy Scouts, in Church Youth Group, and on the Swim/Dive Team.
Nice way to describe and acknowledge the divide, and the love that all parents feel for their children.
I am one who leans towards building tolerance and acceptance and believes this is fundamental to understanding what we mean by building a quality of life for people with disabilities (one can’t talk about autism and not acknowledge the others). I appreciate all parents want to help their children, and I feel that we must continue to build understanding in the best interests of the entire family.
Thanks for those clear words!
Thanks for writing about this, Susan. I’ve always wondered why no one talks about this. You always seem to know what the rest of us are thinking but don’t put into words. I personally don’t believe anyone can be cured of, or “recover completely” from autism. I do know that Kevin’s ABA therapy helps him a lot. I’ve seen him learn and grow so much from it. I also agree with Susan R. about just accepting him for who he is, quirks and all. I worry so much about how he is going to be made fun of when he reaches elementary school. We love Kevin for who he is. I still have hope that he develops speech some day. But, then again, who doesn’t have hopes and dreams for their kids? Our hopes and dreams are just a little different than those of parents with non-autistic kids. We’re still a happy family.
I am in the pro bio-meds/aba/vb camp, but have no animosity to the other ‘team’. All I know is that we have researched (as probably do all the parents), and have no doubt we can make some difference.
Our boy was diagnosed severe, now he ranges from moderate to on good days mild. Advocates of the no intervention path would say, it would have happened anyway. Hmmm…whatever.
We have just uncovered some new research, that points to an alarming similarity between child autism and the effects of fatty acid oxydation defect. And, more importantly, our latest tests indicate that this is exactly what is happening in our boy.
So the question is …do nothing accept, love….or do something, maybe make a difference accept, love and hope. A real no-brainer for me.
Good luck to any parent whatever road you take.
Good luck to the children with autism disorder whatever road their parents take. Hopefully their parents will,as parents have a responsibility to do, help educate them and treat them for their disorder. Hopefully they will seek evidence based effective interventions to help their children and not become stuck in ideological swamps.