Thursday, March 26, 2009

Challenging Beliefs

I am a supporter of the concept of Neurodiversity as I understand it. After a few years of striving to improve my working knowledge and understanding of autism, I think I have a pretty good grip on this concept. I can assure you that my understanding of Neurodiversity varies significantly from the ideological strawmen extended by ND's detractors. Perhaps the most common such strawman is the one that roughly states "The Neurodiversity crowd will have you believe that autism is simply 'beautiful' and that we should do nothing to mitigate any challenges for autistics since it is, in their view, just part of their personality or something". This, of course, is patently wrong.

I am a supporter of the concept of Neurodiversity and I fully acknowledge the challenges and negative aspects that can and, in many cases, do plague autistic people. In a radio broadcast to 10's of thousands of Southern Californians, I was asked about this and answered the same way I am answering here. In presentations to audiences at the University of San Diego Autism Institute, I have made the same statements.

Where am I going with this? Well, I read an essay today. A really powerful, deeply disturbing essay. And after I read it, I couldn't help but think to myself how quickly the knives would be drawn by the ND detractors out there after reading it.

The Monster Inside My Son
Above is a link to the essay, penned by Patricia Ann Bauer for In it, Ms. Bauer bares her soul and describes a shift from the type of mentality I currently espouse and write about and talk about (in her own words: "For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.") If you are autistic, or if you love someone who is, brace yourself before reading this. But please do read it.

You see, it is fairly easy to predict the outcry once this essay makes the rounds. From the 'vaccines cause autism' crowd over at, for example, Age of Autism, there will be a cry of "Hurry up and cure your kids now before they become raving lunatics! Just click on our sponsors tab and order enough vitamin supplements and natural chelators to save your family!" Don't believe me? They've already done this, just last week.

From the 'autism is horrible and don't dare try to tell me otherwise' camp, you might see a reaction that tries to paint Ms. Bauer's experience as the inevitable endgame for "shiny happy people" parents like me who simply refuse to give in to the rhetoric revolving around how devastating autism inevitably is. You might see a call for us to pull our head out of the sand and acknowledge that our lives really have been demolished by having autistic kids. You will of course see the tired, old accusation that we are neglectful in not treating our kids! All of this is incongruous when oriented towards people like me and just about every parent-advocate I know who identify with the neurodiversity concept, all of whom carefully guide their children through various forms of available therapies, supports, and services in an effort to provide the best possible outcome for their kids.

Guess what? Nothing always works. This is a powerful, overriding message that I get from Ms. Bauer's essay. Was her son provided adequate supports, services, love and affection? I think it is a pretty sure guess that yes, he did, judgng by Ms. Bauer's long standing record as an admired and knowledgeable disability advocate and her very clearly expressed affection for her son. In her own words, "It happened no matter how fiercely I loved him or how many therapies I employed."
It is chilling to me to read the following, "Andrew started life as a mostly typical child. But at 3 and a half he become remote and perseverative, sitting in a corner and staring at his own splayed hand. Eventually he was diagnosed with high-functioning autism, a label that seemed to explain everything from his calendar memory and social isolation to his normal IQ ... We got him into a good program and there was a brief, halcyon phase of near normalcy -- a time I long for still so ardently that I feel hungry for it at a cellular level ... I occasionally even referred to him as 'cured'." Chilling because this could be one of my sons. We have used the sam terminology at times for both boys, saying to ourselves on some days, "Gosh, its almost like he's 100% typical".
Then there are the days that one comes home with clothes destroyed from cutting them, or chewing them. Little outburts of anger that, when asked about, are simply answered in a low, monotone voice "Why do you ask me about that I don't want to answer that." Or my youngest, who we jokingly referred to as "The World's Angriest Baby" prior to our understanding of how his neurological development was affectng the way he dealt with us and his surroundings. He is a little force of nature, to be sure.

So there you have it. A "neurodiverse" dad, expounding on the difficulties that autism can entail, the fears that we have as the future seems less far away than it used to. And all this in response to a poised, respected autism advocate who has been rocked and brought to her knees in the last few weeks and months by the tragic changes experienced by her son.

I am not attempting to advance the concept that autistics are more likely to become violent, not am I trying to create fear that this type of outcome is inevitable in some individuals. I am simply stating that gut-wrenching descriptions of problems such as the one on the linked essay have a powerful and essential role in helping to form my view of the many potential challenges that lie ahead for my own sons and all autistic people out there.

Wednesday, March 25, 2009

A Stark Contrast

After a 6 week hiatus from blogging, I am moved to write today by the stark contrast in emotions I experienced from two separate sources on the internet today.

The first set of emotions were caused by this despicable opinion piece on the website Opposing Views. Titled "Its Time for an Abortion Pride Movement", it is penned by one Jacob Appel, who claims to be a bioethicist. After having my interest piqued by the title, it took me a few paragraphs of reading to realize that Mr. Appel is not kidding. He actually believes that aborting children's lives during pregnancy is not only perfectly acceptable from an ethical standpoint, but also something its participants should be proud of and build an identity around, much like being Irish or being gay. Some excerpts, in case you would rather not read the article:
"In contrast to women who have foregone abortion, women who have chosen to terminate their pregnancies are rarely encouraged to take pride in their decisions. That is unfortunate."

"In the current political climate, deciding not to bring a fetus to term, if a woman is unready to parent, or if that fetus is likely to lead a life of great physical suffering, is a courageous and noble moral choice."
(I added the bold emphasis above, simply to point out that many readers of this blog understand where this type of reasoning comes from and where, in turn, it leads).

"In short, women should not merely have the right to end unwanted pregnancies, they should have the right to be proud of having done so. Surely, there is enough suffering in this world already without adding infants with Tay-Sachs disease and Lesch-Nyhan syndrome to the mix."
(I wonder where autism fits in this bioethicist's (sic) spectrum of suffering?)

"Our message should not be merely toleration or resigned acquiescence, but genuine joy that someone has made a decision for their own and for the collective good."
(There's that elitist mentality again. Does the collective good include stopping an "epidemic"? Does it factor in Special Education costs? )
I could go on at some length about the unbelievably bankrupt arguments this fool is putting forth about Abortion Pride, but it is not really necessary. I think most readers will see where this type of reasoning leads. And it certainly raises the spectre of the possibility that a prenatal "Autism Test", should one ever be developed, could lead people who support this type of thinking to opt for the abortion.

And this leads to the other item I came across. It is related from the standpoint of abortion's impact on the population of people with Down Syndrome. I don't know the exact figures, but suffice it to say that prenatal detection of Down Syndrome has resulted in the deaths of huge numbers of unborn infants. I would hope that misanthropes such as Mr. Appel of "Abortion Pride" infamy would consider learn a lesson in life from simple, true stories such as this one.