Columbia University Autism Conference - Part Two

Taking our son Dan off the anti-psychotic Haldol, or Haloperidol, has been harder for him than we ever imagined. It’s a long autism-related story and when the process is complete, or perhaps sooner, I expect to write about it in great detail.

For now, here’s the short version: My husband and I put Dan on this invasive drug many years ago for some very good reasons. Basically, it enabled us to keep him home until he became an adult. It stopped him from being a danger to himself and to others - and at the time it was the only thing that worked. A relatively low dose of Haldol treated a potentially lethal combination of autism, adolescence and puberty. Now, at almost 22, Dan is courageously facing some very difficult withdrawal hurdles.

If there is a bright side to this, it is that Dan’s aggressive behaviors have not returned off the Haldol. I suspect the bio-medical interventions he is on have something major to do with this, as does his age. My fingers are crossed.

It was a trade-off. For him and for us. And while I know that life is full of such deals with the devil, I wish that our kids with autism, and their parents, were faced with fewer of them. I write about this in the present tense on purpose. Reflecting back on that autism conference at Columbia Teachers’ College in the spring - and, yes, what follows is my long-promised second report on this event -I realize that despite considerable advances in recent years, parents who are trying to treat their children with autism live in a world filled with fear and confusion.

This was particularly obvious to me when, at Columbia, a very nice elderly man, a Professor Emeritus of Pediatrics, presented his “Reflections on the Autism-Vaccine Controversy: Benefits and Costs.” Suffice it to say that he believes the benefits outweigh the costs. For him this began decades ago. He was a fourth year medical student during the polio epidemic and saw the unvaccinated “cripple and die.”

But nice as he was, I listened to him and cringed as I felt myself transported back to the last century when patients more often than not—sometimes to their detriment—  believed doctors were infallible. I was not necessarily cringing in the specific since I am not sure whether or not Dan was vaccine-injured. It was the general trajectory of this speaker’s logic that upset me: Vaccines are good.  They have saved lives. And therefore parents should buy into them wholesale.  In other words it is impossible for a substance that helps some people to harm others. Or to be good at some stage of life - and not at another. Haldol, for example was very good for Dan. It was also very bad for him.

During the course of that presentation, the journalist in me cringed as well. Students who were attending this conference for credit had been assigned to read a book by Paul Offit, who has made a lot of money from vaccinations. They were not assigned any book that might make a counter argument, such as the one by David Kirby, who also earned from his work - as professional journalists and writers should. But with far more modest returns.

Ultimately, the long-term Autism Mom in me felt as if I had been tricked. This physician told his audience that he once had a cousin who had autism. At that, I started to feel for the guy. Particularly when he said that he had acted as his cousin’s guardian. Then he mentioned that the cousin’s behavior was so difficult that eventually he had to be excluded from family events. He did say this with some sadness, which was sweet.  But inclusion would have been better. I remembered the time that Dan had a violent temper tantrum at a barbeque  at my aunt’s very mannerly apartment complex. The solution was to find a more comfortable environment for Dan, that everyone could also enjoy. That was how my relatives solved the problem. The next time we met, it was at a large park with meadows.

While  listening to this physician, I tried to imagine myself as a young parent of a child with autism.  I felt fear and confusion. How can he say these vaccines are safe when so many other experts are asking questions about them?  At one point, in reply to a question from the audience , the physician agreed that the vaccine to combat Pertussis is “a crummy vaccine.” Well, if one vaccine could be crummy, why couldn’t others? And if one vaccine might not have a real purpose, maybe others didn’t as well? The physician also said that indeed he has spoken to Defeat Autism Now physicians - and wished they had more data to back up their contentions. If he didn’t have questions and doubts about vaccinations, I wondered why he would speak to these pioneering, and sometimes controversial, doctors at all.

“We have a real challenge,” the physician said. “Of how to re-capture public confidence.”

Later that day,  Dr. Mady Hornig, Associate Professor of Epidemiology at Columbia’s Mailman School of Public Health presented, in scientific terms, a drop-dead gorgeous presentation of data, which I can’t do justice to in a space like this. Read her research first-hand, and see the brilliance of its three strikes philosophy. Autism, according to Hornig is caused by a genetic predisposition, an environmental insult and the concurrent timing of that insult.

“Because autism is a severe disorder, we shouldn’t leave any stone unturned,” she said.

With our son, Dan, we won’t. Even if it means dissecting each and every treatment to see whether it is good or bad for him - and, certainly, how timing plays a role.