Susan Senator
All happy families are not alike...
All happy families are not alike...
The Autism Divide – Again
I have friends on both sides of the issue of the autism divide. I read both arguments (cure vs. acceptance) and I am moved by things both say. I am very frustrated with the heat around this issue. It is a great, yawning chasm that promises devastation to any who fall in.
So, here I go!
Why is this such an acrimonious issue? Why does the idea of autism being curable rankle some so much? And why do the curebies see red when the neurodiversities disagree with them?
I think that for the neuro’s it is an insult to imply that autism is something that should be cured. They want to be who they are. That is understandable. But they are so often high-functioning, no wonder!
My question for them is: What if PECs and FC and all the other modes don’t really work for a very severely autistic person? What if that person really does want to “come out?” What if neurodiversity is really only applicable to very high-functioning, i.e., communicative, people?
For the curebies, it is sick not to want to help a struggling child “get better.” They have anecdote after anecdote supporting biomedical interventions. They have found DAN! doctors whom they trust. They have found traditional pediatricians whom they cannot trust because they dropped the ball on their kids. They feel that the CDC, et al., have lied to them about mercury and poisons in the well.
My question for them is: What if you are wrong? What if the treatment you are giving your child is doing nothing or actually hurting? What if, by implication, you are giving your child the message that he is not okay as he is? What about your family life? Is it completely consumed with autism and eradicating it? How do you have any fun?
The big question is: Is it possible for us all to drop our anger at the other side and focus on what we believe is best for our own kids?
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I completely agree, Susan. As a parent, I want life to be as rich and uncomplicated as it can possibly be for my children. I believe that we can do a lot for our children, whether they have autism or not, to grow and develop by continually pushing the limits…encouraging them to go a little higher and little farther every time until they’ve grown beyond what we ever dreamed possible. I am a new step-parent of an autistic young man and have been criticized by his mother for “expecting too much.” However, by increasing expectations he has learned to sit at the table, have a basic conversation, try new foods, catch a ball, bake cupcakes and cut his own pancakes (he is 11 years old.) All of these things will help his life be easier and increase his self confidence. I’m not sure what I think about the various other “cures” but increasing expectations and treating the child with age-appropriate respect seems to be working for my stepson.
“My question for them is: What if PECs and FC and all the other modes don’t really work for a very severely autistic person? What if that person really does want to “come out?” What if neurodiversity is really only applicable to very high-functioning, i.e., communicative, people?”
Its a good question Susan. I don’t have a glib answer. I don’t think the desire to be who you are is limited to high functioning people. The young woman on gettingthetruthout.org has/had a LF diagnosis but its still a good question.
Our take on it is that a) other autistic people have more of an idea of the experience of being autistic and don’t seem to desire a cure but b) no matter my beliefs, if my daughter wanted a cure then I’d make sure she got it (assuming one was available).
Kev wrote: “no matter my beliefs, if my daughter wanted a cure then I’d make sure she got it”
As you’ve mentioned before, Kev, a large part of the problem is that so many different meanings are being attached to the word “cure.” Some people simply want to alleviate discomforts or difficulties that may be associated with autism, while others actually want to rewire autistic brains.
I assume you are using the word “cure” in the latter sense here. I see that as a much more complicated issue than just asking what the child would prefer. If I had an autistic child who wanted to undergo a medical procedure to be made non-autistic (assuming that such a procedure existed and could be performed without unreasonable risk), I would first seek to determine the child’s reasons for wanting the procedure.
Because autism is such an integral part of a person’s identity, I would put any autism-cure procedure in the same general category as sex-reassignment surgery. Deep unhappiness with one’s natural identity would be a valid reason to seek such a procedure. On the other hand, if I had a daughter who wanted to become a man because she felt that her gender had made her a target for discrimination, I would advise her to focus her energies on changing society, rather than herself.
I know of a young man who sometimes posts on aspie forums about his feelings of being trapped in an autistic body. He has a strong desire for social interaction, and he feels that the way his voice and body appear to others do not reflect who he really is. The way he describes himself is very similar to the language used by transsexuals. If this young man could somehow be made non-autistic, I believe that he would feel much better about himself as a result.
But I also believe that the vast majority of autistics are as strongly opposed to a “cure” as most of us would be to changing our gender.