In my tenure as a quasi-professional speaker on autism issues, I come up against a lot of questions from parents on particular topics involving causes and “cures” for autism. The two most common ones involve the autism/vaccine myth, and casein/gluten free diets. The diet one is pretty easy to answer: I went on a casein-gluten free diet myself once, not because I thought that it would improve my disposition, but because I was living with someone with celiac’s disease, and I avoided these foods as a courtesy and to see whether the gluten-free fad sweeping my university was any good… for a while. Keeping up a gluten/casein free diet was expensive, as it involved many trips to the specialty health food store, and far from improving my disposition, it made me more grouchy and miserable than usual, because I was hungry all the time, I was spending money I didn’t have, and I was denied the pleasure of some of my favourite foods, such as milk, brie cheese and crackers, lemon ricotta pancakes, bruschetta, fried chicken, barley and leak soup, matzo ball soup, grilled cheese sandwiches, chocolate babka, goat cheese pizza, cheesecake, risotto, couscous, and challah.
I cited my own experience and the various scientific studies proving that the gluten-casein free lifestyle as a path to improving autistic individuals was hokum. I said that if they wished to try it, that was their volition, but I didn’t believe that the extra agony of preparing special meals, packing separate lunches, banishing flour from the kitchen permanently, and not being able to go out to eat without first checking if the restaurant was fastidious about keeping a gluten-free area would be worth any marginal improvements that may be attained. I also thought that
if when it didn’t work, parents would somehow feel ashamed of themselves for failing their children, when it wasn’t their fault at all. I don’t like promoting that. As an autistic adult who does have bowel trouble (Sorry, TMI ahead!) I’ve found that eating a high fibre diet, supplementing with benefiber sprinkled in my drinks and over my meals, and eating an occasional pickled plum (my favourite treat, but mind the sodium level, the price and the acquired taste) did much more to improve my bowels and disposition than eating gluten-casein free did. But I always end that particular lecture with the caveat of talking to a pediatrician about proper nutrition.
The vaccine issue I end up approaching with much more care. People who believe the vaccine-autism myth are usually much more suspicious of doctors and science-based medicine in my experience, so it’s often futile to cite the science proving its falsehood. But I’m also much more concerned about the vaccine issue because, unlike an individual diet plan, an unvaccinated person has the rather rotten ability to compromise herd immunity if there are enough of them, and with recent outbreaks of measles and other vaccine-preventable illnesses in North America, I fear for the safety and health of the children whose parents I speak to and in the general public. So I want to be able to make a very persuasive argument that will not only convince the people I’m speaking with that vaccines don’t cause autism, but that they’re medicine’s greatest lifesaver, and it is in the best interest of themselves and their children to get them vaccinated.
A lot of people I’ve talked to about this issue encourage going about the Dr. House route (Fifth one down) and stressing the dangers of not vaccinating. In my experience, this doesn’t work, it tends to make people more defensive of their choice, meaning I have less of a chance at success. I want them to be open to me so that they will listen to me, and directly attacking them as idiots endangering their children and the public, regardless of my personal opinions, isn’t the way to do it.
Instead, I approach it by asking them about how this influences their attitude towards autism. I ask them if they feel more guilty at the idea that the vaccine gave their children autism, or at the idea that the autism was a part of their child’s genetic signature, inherited from them. I ask them how their idea on the cause influences their behaviour and feelings towards their child. After about fifteen minutes of teasing it out, most of my audience ends up realizing just how negatively the vaccine idea (Or the environmental toxins one) makes them feel about their children. Ultimately, we end up working together on having them develop a new, more positive outlook towards their child and their future as parent and kid, and after that, the idea that vaccines/environmental toxins somehow caused the autism begins to take less of a grip on their psyches. They focus more on helping their kid be happy and find something that makes them content and focused.
Step two, after this seed has been planted, is to remind them of the history of autism, how it has gone from being juvenile schizophrenia to “refrigerator mother” syndrome, or even before that, being changelings or “holy fools”. It’s not as new as some people think. I then talk about the increased numbers of autism as being akin to “casting a wider net with smaller holes”, and how this will not only mean more diagnoses, but greater attention paid to improving the quality of life for autistic people, so long as we focus on the future and not the past (ie, the “cause”) Finally, I remind them that it’s not only them and other “ordinary” parents whose children get vaccinated. The Chief of Staff of the CDC, the CEO of Pfizer, and Paul Offit all get themselves vaccinated, and if they have children, I’m sure they vaccinate them too. I assure them that if they were covering up some grand conspiracy to turn future generations of children into autistics, or hiding some nefarious side effects in their medicine, they probably wouldn’t be getting the jabs themselves.
This method has proven most effective for me in easing people’s fears about vaccinations. Though I speak to parents most often, I think that this could also be useful for anyone who didn’t have children. The important thing is to clear the lies away from the good name of life-saving medicine and focus on improving the quality of life for autistic individuals by ensuring that a hyperfocus on cause and cure doesn’t mean overlooking genuine, much kinder ways to improve an autistic person’s life, like giving them an interest they can be engaged in, or offering them unconditional love, not treating them as broken or lost children.