WHY, PART 2: A POSTSCRIPT

One of the reasons I write this blog is to hear challenges that make me reconsider an opinion. I maintain that nothing is worth believing in if it cannot withstand questioning. After writing “Why,” I found myself in a lively dialog with Michelle Dawson who left comments to the post. She invited me to review some materials, which I did. Although those materials, impressive as they are, do not convince me that my wife and I are wrong in responding to our son’s ASD with a biomedical intervention, the process has made me think a lot more about the decision-making process.

My post was part of an unplanned "blog swarm" that Ginger, Kyra, and I had addressing the propriety of our decisions to attempt “curing” our children. Ginger posed the question of whether an intervention may not only reduce the adverse impact of autism, but also change the child’s personality. Ms. Dawson feels that the question is irrelevant:

Autism has nothing to do with personality, any more than gender or sexual orientation or handedness do. That doesn’t mean that parental interventions against the gender, orientation, or handedness of their offspring--for whatever reason--are just fine.
. . .

This whole non-argument arises from a lack of understanding of what autism is, of how autistic brains are different, and of what this means with respect to cognition (perception, attention, memory, intelligence, and learning). Notice this has nothing to do with personality.

My response to Ms. Dawson was to restate Ginger’s question by asking if an intervention -- be it biomedical or behavioral -- ever diminished the cognitive gifts in an autistic child. I then arrogantly provided a presumptive answer that I “certainly don't think we'll find anyone say they were diminished by an intervention.” After thinking about it some more, I am not so sure about the impact. But I am still sure of the decision my wife and I made.

Autism is a complex thing that defies any real understanding. Mental health professionals define autism, Aspergers, and PDD-NOS by a constellation of deficits, a construct that may be too simplistic. As a definitional tool, however, the DSM-IV-TR criteria are probably more accurate -- and are certainly more widely accepted -- than the proposition that autism is nothing more than a different way of thinking, in essence a genetic state of being.

In a comment to my last post, Anne made this point:

I think a good example for you might be perseveration -- defined in the criteria as “restricted repetitive and stereotyped patterns of behavior, interests, and activities.” It is treated as a dysfunction, with a couple of reasons usually being given: it “interferes with learning” and it bugs other people, especially when the special interest is one that is not widely shared. Interventions are deployed to discourage perseveration.

Yet maybe perseveration is part of autistic cognition. Maybe autistic kids learn better by engaging in perseverative activities than by learning to suppress their desire to do them. Learning driven by intense interest is much different (I would say better) than learning driven by forced compliance.

Ms. Dawson and Anne focus on cognitive differences, and they may be correct in saying that is a part of autism. But the clinical definitions of autism are not based on cognitive differences, but primarily by social deficits.

The parents who practice biomedical interventions, and I am certainly in that number, look upon autism spectrum disorders in primarily negative terms. Members of the neurodiversity community tend to look upon it in a more positive, or at least neutral, light. Perhaps we all are right, and we all are wrong.

My friend on the other side of the argument (and other side of the ocean), Kevin, likes to say we are doing nothing but treating comorbidities. Perhaps he is right, but many of us have seen enough to believe that treating those comorbidities seems to reduce the severity of the deficits by which our children have been diagnosed as being autistic. If those deficits are completely remitted, can we really call them comorbidities? Frankly, I don’t care what we call them. The more serious question asks whether positive traits, or “gifts,” or so entwined with the same processes that create the deficits that they can be lost as well.

When one looks at Dr. Temple Grandin, one sees an extraordinary example of how autism may shape a person’s thinking in a positive manner, resulting in a real benefit to society. Indeed, Dr. Grandin has contributed to bodies of knowledge in multiple fields, and the mental processes leading to those contributions may, at least to some extent, be attributed to her autism. There’s no way to know if Dr. Grandin would have retained those gifts had she undergone comprehensive biomedical or behavioral interventions as a child. But we must consider the very real possibility that those gifts would have disappeared.

On the other hand, Ginger recently posted the story of an adult on the spectrum who is missing, and may be in harm’s way, due in no small part to his autism. No doubt that gentleman has positive gifts, but he is unable to communicate that to those around him.

The fact is not all autistic children grow up to be high functioning. But neither are all autistic children destined for a lifetime marked by significant impairment. The problem is nobody can tell us at an early age which of our children will grow up to be a Temple Grandin, a Kathleen Seidel, or a Michelle Dawson.

As parents we have to weigh the potential benefits of any intervention against the known risks. As part of that weighing, we must also consider the fact that we might take something positive away from our children, and we must decide if the good we hope to achieve outweighs the gifts we may be taking away from our children.

Ginger received a couple of very interesting comments in response to her initial question.

Jackie M. said:

Your question at the bottom struck home to me. This summer we heard the wonderful news that my son no longer could be considered Autistic. The one thing that I noticed was he no longer had that amazing ability to spell any word after hearing or seeing it once. For example, at 2-1/2, a friend’s father was over at our house while the boys were playing. I have a magnetic board with letters. My son picked up the letters and started to spell his son’s name, which was a very long name. The man’s jaw almost hit the floor. His son (same age) could only identify one letter in the alphabet and my son could spell about 20-30 words including his son’s 8-letter name. He no longer has that amazing ability. He can spell but not only after seeing a word or hearing the letters once.

Personally, I’ll trade the super human spelling for a child that can tell me what he wants, what is wrong, how he feels, and what he did that day.

And Angela wrote:

My experience has been that my son has become less savant-like with nutritional supplement therapy and Pivotal Response Training. This time last year, he was constantly adding numbers and into spelling big-time (he was 4 then). Today, he is very interested in play-dates and has become aware of friendships the other kids have. His personality has changed to become more social, more engaged, less inwardly focused. He is also more willful -- which I view as a good thing.

I try to avoid discussing specifics of my son’s ASD on this site, but I will say this. He is at an age at which we have a pretty good idea of his strengths and his deficits. And we have a very strong belief that there is far more to be gained by a successful intervention than there is to be lost.

One of the more aggravating criticisms often directed at us is that we desperately seek a cure not for our children’s autism but really for our own shattered dreams. Nonsense! As the father of two older, neurotypical kids, I can confidently state that I gave up on having my children live out my dreams a long time ago. I simply want all of my children to live out their own dreams. But I still must confess that I have one dream about my young son. In my dream, he has reached the rebellious stage of adolescence. He angrily confronts me, and he demands to know how he could possibly be the offspring of someone so thoughtless as to deprive him of an integral part of his personality. Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.