If you know me at all, you understand that I get extremely frustrated when I’m misrepresented. My beliefs are as thought out and consistent as I can make them, and when folks make assumptions about what I believe I get angry. Real angry. So, to prevent frustration and help folks better understand where I’m coming from I’m going into some detail about my beliefs.
I want to be clear that these are personal opinions. They are not representative of any of the organizations for whom I work or volunteer. I am also not a scientist, doctor, researcher, or in the employ of any pharmaceutical company, doctor, research laboratory, or anyone else that would reward me financially for having these beliefs. I developed these by being open minded enough to learn, perceptive enough to observe and hardheaded enough not to take what people said at face value. I have to give a lot of credit to my wife for my ability to share this with you. She challenged, poked and prodded me until I finally came to understand what was going on with our son, which in turn led me to explore and attempt to understand this thing we call autism.
I’m not a manifesto guy, so I’m going to frame this conversationally. My first belief is that autism is poorly defined, and that treating autism with medical interventions is like trying to describe an apple using scotch tape. Autism is a mental health diagnosis. It must be diagnosed by a developmental pediatrician, neurologist or psychiatrist. That said, most of the pharmacological options for autism are off label and much research has yet to be done on defining the disorder medically. That means that all the “cure autism” stuff, while efficacious for some, is not the best starting point for everyone on the spectrum.
I don’t think autism can be cured, and I don’t really think that we should strive to cure it. I say that knowing that, in the realm of autism, we are very blessed. My son talks to me, tells me he loves me, and is able to communicate his needs to me. However, for the folks who can’t speak and want to, or those who have difficulty being social but still desire a social life, we should have options to help them overcome their difficulties. I have a very different idea of how those difficulties should be described and overcome.
I feel that autism is very rarely a stand alone disorder. My son’s autism is in conjunction with dyspraxia, vision issues, GI tract issues and other problems. In treating those very real medical issues, I am not trying to cure him, nor do these interventions lessen who he is as a person. I have personally sampled every supplement he has ever taken, with the exception of a few of the prescribed medicines early on in our treatment. I take supplements myself as I feel I need an extra boost when it comes to health. I also believe that nutrition is critical, and would likely be making my son fruit and veggie drinks even if he didn’t have autism.
I view speech therapy, occupational therapy, vision therapy, listening therapy and many other therapies as methodologies to help my son. I have yet to see a therapy fundamentally change who he is. Like me, my son is in flux. Everything is changing who he is. However, I have witnessed some of these therapies help him see better, become potty trained and learn more efficiently. He seems happier because of that.
I respect my son’s wishes. When he tells me he doesn’t want to do something, I explore it. As a parent, I think it would be irresponsible of me to say “you have to keep doing this just because I said so.” I don’t want my son to think the world works that way, because it doesn’t. In my experience, “no” is just the first step on the way to yes. I listen to him, evaluate the situation, and try to discuss it with him. If he is really adamant about it, we give up the therapy, change teachers, fight administrations, topple dictators, whatever it takes. I have to take my direction from him, because he is the one who has to live his life.
My son is not a puzzle. I have some very strong opinions about this one. My son is no more a mystery than anyone else. He is no more or less difficult to understand than any other child. I do think that the puzzle piece is demeaning, as it simplifies the conversation and lets people file autism under “crap I don’t understand and consequently don’t have to do anything about.” There is a puzzle involved with autism though. How can there be so much money floating around in the Autosphere and so little of it actually goes to help autistic people?
Finally, the question people always ask me is “do vaccines cause autism.” I’m going to say that I don’t know. I witnessed my son’s progression falter when he was vaccinated at 12 months, and I watched him regress after the 15 month shots. However, I can’t draw a straight line and say “that’s what started his autism.” Part of it has to do with the lack of medical consensus on the physical side of autism and part of it has to do with comorbidity. My son has a vision disorder that is an exaggerated form of a vision issue that I have, so I know that much is hereditary. However, as far as I know we have the only kid with autism in either of our families.* That means part of what is affecting him is environmental or localized to us. How much of his dyspraxia was caused by the vision issue and how much by vaccines and how much by autism? Nobody can answer that question, and I don’t really care to pursue it. He is my son, and I love him regardless of what affects him. Its just part of what makes him who he is, so I accept it, help him function better and try to teach him how to be independent, happy and fulfilled.
If you’re wondering why I wrote this, its because I see a lot of people argue about this stuff. People on the vaccine side say the autism vaccine link people are crazy and vice versa. Self advocates attack parents who want to “cure” their kids because they’re denying them their civil rights, and people all over write off autism advocates as kooks and single issue voters. I think its time that, even if our community can’t agree, we start showing each other respect about these issues. Its critical for us to come together and have an adult debate about these topics. Autism is epidemic level in the U.S. and nobody in our government is doing anything significant to meet the overwhelming needs out there. We can’t effectively make change if our community is fractured, and the people who benefit from our lack of solidarity are politicians and bureaucrats who have yet to be held accountable to the will of the people.
I’ll probably add to this as I grow and learn. I’m a long way from total enlightenment and I revise my opinions when I have new, relevant information. If you want to comment, feel free. I love to discuss things. However, if you are trolling or just interested in starting a flame war, please move on. I moderate all comments, so you will be wasting your energy.
*I’m adopted, and don’t know a whole lot about my medical history. However, from what I’ve been told in the limited contact I’ve had with my birth family, there aren’t any autistic folks in either side.