This web-site has abundantly recounted stories from our community of how the affliction of our children and subsequent efforts to determine what happened to them have earned us the ridicule of the medical community, contempt of the media, and perhaps most surprisingly, a change in attitude from friends and family about our grasp of reality.
I confess this change in attitude hit me with great force. People had always relied on me for my good sense and intelligence. When I graduated from high school my mother gave me a large wooden owl because she thought it symbolized my wisdom. In college I was the school's Rhodes scholar candidate and headed up our delegation to the Model United Nations at Harvard University. In law school I was a writer and editor for the law review. After I got married my father-in-law referred to me as his "own personal Google" for my ability to recall anything from historical and political events to the names of actors from old movies.
But lately I've noticed a new phenomenon. I'm becoming credible again. People value what I have to say.
I noticed it first during this past school year in the staff lunchroom. The issue of vaccines and autism came up and I'd held forth with what I hoped was an abridged discussion of this vast topic when one of the teachers turned to me and said, "When I have kids I'm going to talk to you about what to do." I was momentarily taken aback by this sentiment. I felt it had been a long time since anybody outside the autism bubble was so interested in what I had to say.
I noticed it a few weeks later with the wife of my son's boy scout troop leader. We'd had some discussions before about autism, and she had a great interest in the subject as her own son had shown signs of autism and they endured two years of intensive therapy with him. He still seems to have some Asperger's-like traits, but from my view is essentially indistinguishable from his peers. Whenever she sees me she asks what's new and I inevitably end up sharing the latest research with her and my thoughts on it.
About a month ago my father said I should talk to a friend of his who is a psychiatrist. The psychiatrist has a niece with autism and my dad figured we should compare notes. My dad thought very highly of his friend, telling me the psychiatrist was one of the smartest people he'd ever come across. "He's got like seventeen degrees," my father said, "but he's still a guy you can talk to." So I called this well-credentialed psychiatrist, laid out the issues, the controversies medical science isn't investigating, what I think still remains unknown, and he was very attentive. He asked good questions, shared stories from his own practice of what he views as the failure of the medical profession to address complicated issues like chronic fatigue syndrome and autism, and generally validated everything I had to say.
Frankly, I'm not sure if I felt better or worse after we talked. I think in the back of my mind I often have this irrational hope that maybe I've got this all wrong. Is it easier to live in a world where you're practically the only sane one, or is it more comforting to think you've got it all wrong and the rest of the medical and pharmaceutical world is doing its best to help you? Personally, fighting for my daughter is a lot more difficult than just giving up and leaving it in the hands of the medical community. But I would have no such reprieve. When the psychiatrist talked to my father again he said, "I think Kent knows as much about autism as anybody in the country." Crap, that means I still have to keep working because I don't know anywhere near enough.
Which brings me to last week's meeting with my daughter's neurologist. (My daughter has seizures in addition to her autism.) Our daughter's neurologist is head of neurology for the northern California division of our system of hospitals and as smart and blunt as they come. I've laid out the vaccine theory of autism and neurological injury to her in the past and she's been non-committal, but often says, "I'm here to help you with anything in traditional medicine." I've also consulted her on the safety of various non-traditional bio-medical interventions. It may come as a surprise to some of the detractors of our community, but I have never tried a therapy with my daughter for which our neurologist had safety concerns.
"My husband has something he wants to share with you," my wife told the neurologist after we'd gone through the standard appointment.
"Good!" she said with some relief in her voice. "Because I'd been sitting here thinking about what I could offer you and I couldn't come up with anything. There's a new seizure drug on the market that I could recommend, but it comes with good news and bad news. The good news is that it doesn't have many side-effects. The bad news is it doesn't seem to work on many of my patients."
I nervously plunged into what I hoped would be a fruitful discussion. "We recently had our daughter tested for this newly-discovered retrovirus and she was positive for it," I said, handing her a small stack of papers. Included in the stack was an October 8, 2009 article from the journal Science about the virus as well as several articles from Amy Dockser Marcus of The Wall Street Journal detailing the latest findings in the field. (For reasons of avoiding internet searches, in your comments please refer to this retrovirus as "#3".)
"How do you treat it?" the neurologist asked me.
"It's unclear at the moment," I replied. "There are several people working on it, but they haven't settled on an approach. The good thing is that many drugs which were previously approved for HIV-AIDS may work on it and since it's a simpler virus than HIV it should theoretically be easier to defeat. There are other approaches, based on improving the body's immune system to fight off the virus." I added all the usual caveats that more work remained to be done, that there was the issue of whether this was the cause of my daughter's problems, or just a harmless passenger virus, but the neurologist gave me a look which said that uncertainty was part of the medical process.
"Let me pass this over to infectious disease and see what they can make of it," she said after I'd finished. "And if your people come up with a treatment protocol, let me know and we'll see how we can help."
As we walked out of the neurologist's office I couldn't help thinking, "I've become credible, again." We're in the midst of a war for the future of our children, but inroads are being made. I don't claim to have any answers, just questions. However, it's nice to feel that at least in my small part of the world I'm working hand-in-hand with the medical profession, even if I'm the senior member of this collaboration.
Have you noticed that YOU are becoming more credible to the people in your life?
Kent Heckenlively is Contributing Editor to Age of Autism