A Spoonful of Sugar and Remembering Why I am in the Fight
Rationality and Emotionalism: What place do they have in the autism discussion?
I’ve read more in the last three months from parents convinced their child(ren)’s autism is caused by vaccination than I honestly would have cared to. However, I think it is important to know as many sides of an issue as possible in order to decide the merits and come as close to objective reality as possible. This means I give great weight to scientific research on autism, far greater when it comes to looking at causes, at effective treatments, than I do to personal testimonials. But, how can you argue the merits of the scientific evidence if you don’t understand what the people you are trying to convince actually believe, as well as the strength of their convictions? So, I’ve gone down a road that has often left me saddened, angry, and occasionally physically ill. It isn’t enough to focus your energy on questions of why. It doesn’t take you very far and leaves you stuck in the past, in the wound of accepting your life has taken an unexpected turn.
Why Joy Matters:
Those convinced that autism was forced upon them through environmental triggers such as vaccines are heavy on emotionalism. They are furious and vengeful; they want payback for the horrors that have been imposed on them. While I hope these feelings are only felt by those whose children are severely autistic, I have the sense that it is not restricted to those whose children thirty years ago would have institutionalized in childhood rather than remaining at home. If you view your child as damaged goods, as taken away from you, and a soulless shadow left in his place, the anger and hatred and the desire to strike out must be incredible. Where is the room for laughter and joy?
My son will be 20 this year. We knew almost immediately, certainly within the weeks following his birth, that he was an incredibly difficult baby, and it did not get easier with time. He didn’t get easier; he got harder to handle as he got bigger. He wore me out, but not once did I think death, his or mine, would be preferable. He was diagnosed with autism before the nonsense Wakefield started, and it never occurred to me to think that this was caused by an environmental trigger. It still doesn’t, especially with two daughters on the spectrum, and stepsons with different difficulties. We knew special kids ran in my husband’s family, essentially, and never looked back or out for someone to blame.
This idea that genetics was responsible allowed us to dispense with any notion of victimhood. There has never been a time where I asked, why me? First off, life is a mysterious dance of the intended and the accidental. We roll the dice, we take the hard six. We deal with it. Dealing with it, whatever it maybe, with grace and humor, is the only option I will allow myself to take. Unless it’s the dentist or major medical stuff, and then I’ll deal with it with happy pills. That seems fair to me.
When deciding how to deal specifically with treatment issues, with behavioral issues with my children, emotionalism has no place. Rationally, what does the evidence show? When I began this journey with my son, there was a dearth of evidence-based intervention. So, I had little to go on. We got him speech, OT, PT and sensory integration therapy. And I did my best at replicating the philosophy behind ABA. None of my three children have had a fortune spent on therapies (the school provides it for my youngest, as it did for my oldest while he was in the school system). What they have had spent on them is TIME. I have devoted more hours of my adult life to working on helping my children get better than I have to any other pursuit. A huge bulk of my reading has been devoted to understanding psychology, autism and other PDDs, social skills training, mindblindness, and emotional intelligence. Because of my children, I earned a master’s in psychology. Because of them, I am who I am today: graying, rounding, with laugh lines becoming etched into wrinkles in my face so that it looks like I am always smiling (and I often am). I am also on a crusade: to stand against those who would have our children viewed as anything other than complete, whole individuals with unique gifts and unique challenges and much to teach us, the neurotypicals, about compassion and acceptance.
Fast forward now to nearly 18 months later. My son turns 21 in a month. Have things changed? We've grown (as, has, sadly, my waistline), we've developed new skills, all of us. We've faced hurdles and challenges, some with aplomb, many with meltdowns. The kids have transitioned into different schools, with growing responsibilities. The bright boy has moved into volunteering at an animal shelter once a week and into going to the day center three days a week.
I still feel the same way as I did above. I think I've learned how to better implement compassion and where to restrict the snarkiness, and I've grown more certain over time that I have so very, very much to learn. Even though I understand from a psychological perspective the Dunning-Kruger effect (journal article is available here--must read!), it never fails to amaze me at how easily we can assume we have competence that we don't. Even though I understand availability heuristic, confirmation and disconfirmation biases, I am still amazed that people give credence to their gut rather than doing the work of slogging through what is actually known by scientists in order to make sure the information they throw out there has a better chance of being accurate. I know, I get it, we take shortcuts all the time, but it still amazes me.
If I have any impact out there in the greater world, I hope that I teach my students and my children (especially my children) to check their tendency to believe they're right and compare it with known data, to recognize that no matter how much one might know, there's always so much more to be learned. And most importantly, to remember that people are fallible and if they knew better, they'd do better.