Joseph, with whom I have long disagreed over the issues of whether environmental insults may play a causative role in triggering autism and whether there really has been an increase in the incidence and severity of autism, wrote the following:
[An] aspect of autism that separates it from other disabilities is the fact that it’s a brain difference. So it has a profound impact on the personality and way of being of an individual. Because of this, the question of cure becomes an ethical dilemma. To cure someone implies a personality alteration. Imagine that there was a technological way to alter the personality of a child to match our wishes and dreams. Would that technology be ethical? (In a more detailed message I could even argue that the difference between ‘altering personality’ and ‘curing autism’ is nothing but a subjective construction). And the way you can usually tell if something like this is really an ethical problem is to ask the potentially affected individuals. Autistics have said that being cured would be akin to having an alien force power our bodies. Ethically, there’s no justification for ignoring what autistics have said on this matter.
Joseph is correct that there is an ethical obligation to carefully consider what it is that we are trying to accomplish by any given intervention, but he misses the mark, at least in my opinion, when he assumes that everyone seeking a cure wants to alter a child’s personality to match the parents’ wishes and dreams. I have indeed listened to what autistics have to say on the question, but listening, considering, and reaching an opposite conclusion is different from “ignoring.” Calling something a “brain difference” does not really help to define what the difference is or what causes the difference.
Joseph’s representation that autistics equate being cured to having an alien force power their bodies begs an important question. Do any autistics who have had their autism biomedically remediated share that fear? Indeed, I have been told time and again by some adult autistics that nothing I do can possibly cure my child of autism. If that is so, how can any autistic individual know what the impact of a cure would be? How does anyone know that the essence of an individual’s personality would be altered by a hypothetical cure?
One autistic adult whose writing I read on a regular basis is Amanda Baggs, who blogs under the name ballastexistenz. Again, listening is not the same thing as agreement. Yet any beliefs about the nature of autism would have no validity at all if I was not willing to let them be challenged ⎯ and perhaps altered to at least some extent ⎯ by her writing. Ms. Baggs was interviewed as part of the NPR report I mentioned in my last post, and she had this response to my taking exception to a comment of Jim Sinclair’s:
With regard to loving a child and hating autism, one thing I said in an interview for the same radio show (but that didn’t make it onto the air) was that there’s no such thing as autism, and that this is probably what has a lot of people confused.
What there is, is a kind of person that is autistic, and this goes deeper than personality or culture. Just as there is a kind of person that is male or female, instead of an abstract concept of “maleness” or “femaleness” that each person “has”. “Autism” is an abstraction, not a thing.
However, that abstraction allows people to believe that it’s a thing, that can be separated from the person, rather than a word used to describe a certain aspect of the person.
And so, yes, if you hate the autism, you’re hating a fundamental aspect of a person (this goes for if you’re a parent, if you’re autistic, whatever). That doesn’t change based on whether or not it’s considered polite or even downright shocking by your standards to “define people’s relationship to one another for them”.
I wish I could share the view that autism is a mere abstraction, but that would ignore the multiple disabilities challenging my son on a daily basis. [Update: For clarification by both Ms. Baggs and me on this point, please see the comments to this post.] The points made by Joseph and Ms. Baggs were addressed quite well by comments from my friend (who someday I hope to meet face-to-face, and who I trust will forgive me for some editing), María Lujan:
… a human being is much more than a label. Because the diagnosis is given based on behaviors and absence of certain skills (language for example) I wonder how do we know if the behaviors are not resulting from the intrinsic … person but resulting (some of them? how many and how?) from the interaction of … genetics with the environment and the resulting medical problem?
Why [do] many of the behaviors associated [with] ASD disappear under certain treatments (not behavioral) with parallel improvements in certain biochemical parameters? If they were intrinsic to the person, there [would be] no way to change, [just] as there are no ways to change the DNA today.
María’s moral sense of the matter is as strong as her scientific sense:
My son’s soul has not been stolen by vaccines or thimerosal. The autism he has does not make my son less human. The autistic he is deserves all my consideration and acceptance and love and also the best medical care, a medical care I have not found in the [mainstream] medicine available.
. . .
Like you, I want answers based on high tech science, [not] epidemiology or statistics. I want science based on clinical studies of high quality, not politics. I want to know about the truth and I refuse to be involved in a “game” where it seems more important to win or to be right ⎯ at any cost ⎯ than the truth. And like you I consider that autistic[s] deserve and must be respected and considered and [heard]. However, this does not exclude me from my rights and my duties to give my son the best opportunities for the best life quality he can get under my personal research and responsibility, using all the tools available to me with appropriate information.
. . .
I do not consider AUTISM a gift, but my AUTISTIC CHILD [is] a gift. I do not … celebrate AUTISM but I celebrate his existence, or in other words the CHILD he is, autistic or not. I enjoy life with my autistic son, even when I cannot find [joy] in autism, because for me they are different things …
Like everyone else in this ongoing discussion, I have a tendency to overgeneralize opinions by other people, and to place people in “groups” that, in reality, may not exist. As Ms. Baggs writes: “When someone is on ‘your side,’ it is very easy to not see how it can look from another ‘side’.” I have to say, however, that I have never personally spoken to anyone who I believe has adopted biomedical interventions out of a lack of love, respect, or acceptance of their child. Such a parent may exist, but I have not yet met one.
Indeed, the act of intervention requires some level of acceptance. One must accept the fact that a child is autistic. That may not be the type of acceptance that is defining the debate; it is an acceptance of “autism” vis-à-vis acceptance of “the autistic.” But it is just as meaningful in a very important way.
Tamar Bihari is not a proponent of biomedical interventions, nor is she a vociferous critic of them. She is a mother who also happens to be a fine writer. Tamar wrote an essay for the Autism Speaks site, that is well-worth reading. She speaks eloquently of the difficulty many of us had in accepting the reality of autism, and makes an important point:
The turning point is not the diagnosis itself, I think. It’s the willingness to see. To understand that your child has this condition, that the way he or she is acting is not willful, is not unique, and is not something he or she will grow past, not without help.
The issue isn’t one of acceptance and love; it’s of response. In his comments, Joseph acknowledged that some in the “autism rights movement” acknowledge that autism is a disability, and then adds: “The question is what to do about it and how it should be constructed.”
If the construct of autism is defined by a constellation of dysfunctions, an appropriate response includes interventions to counteract the problems. If, on the other hand, autism is a mere cognitive difference that resulting solely from genetics unrelated to any environmental insult, then no amount of intervention will make a difference anyway. From the practical side, the real issue becomes safety of protocols. The ethical dilemma, however, is unresolvable.
For her part, Ms. Baggs feels it remains unethical to not “accept” the autistic child “as is,” regardless of whether the cause is genetic or environmental. I don’t think the question is that easily answered. I believe the answer lies in the heart of each parent of an individual autistic child. I speak only for myself when I say my conscience is clear.
Note: The extracts from the comments I quote above may not convey the complete context that the original writer intended, and I certainly invite and encourage the reader to refer to the original post and comments.