Human existence is nuanced. My ethical system is rather rigid, but I also realize that sometimes we weigh "right" and "wrong" on a metaphorical scale. Our opinions on some matters are reflections of our experiences and cultural norms. I'd like to argue science is science, but even science seems to engender endless debates. Scientists will admit funding and publishing are definitely political and socially complex.
Some of the reactions to blog topics are anticipated, while others have surprised me. Allow me to explore some of the topics that result in heated private e-mails and blog comments. Also, I must remind readers that I do remove any comment that is a personal attack or threat, which seems to be a good policy to have.
1) All things "vaccination" lead to heated responses, not all of them public comments.
I was diagnosed mentally retarded at birth. I've written about the birth trauma and still might publish an ebook on my experiences. The experiences are unique to me, but many parents and individuals have told me of autism diagnoses long before vaccination. When you dare to mention being diagnosed before vaccination, expect to be attacked. I've been called a liar, an apologist for Big Pharma, and a paid shill. My mother was there when I was born, and she can vouch for the birth trauma and warnings of retardation. But, that story doesn't fit some templates.
The science of vaccines is difficult to explain. Medicine is never "risk free" and that's difficult for non-scientists to accept, it seems. If you admit that vaccines do pose limited risks to some populations, you're challenged to explain why anyone should take that risk. It's a no-win topic because the sides are so polarized they don't trust each other to be reasonable. Researchers cannot imagine people reject the safety of vaccines, which is expressed in probabilities. The parents of children with real (or perceived) vaccine reactions cannot imagine why anyone would accept any risks.
2) Any discussion of "incidence" is bound to cause conflict.
Informatics is a complex discipline, as is epidemiology. Add to this the subjective nature of "autism" diagnoses and you have all the ingredients for an endless debate. What is or isn't autism keeps evolving. The historical data are only slightly better than useless, because the diagnostic criteria keep changing and awareness of autism keeps increasing. It's an impossible task to compare autism rates today to autism rates a century ago.
Trying to explain that "autism" is probably several "autisms" with multiple etiologies adds to the confusion. The "autism" of a severely impaired child with a low I.Q. is likely not the same "autism" as that of a high-functioning individual with a career. I'm not even certain these "autisms" are connected, but right now we count them all as autism statistically. No matter what I write about autism rates, someone will be offended that I am either overstating or understating the problem. I also object to the use of "epidemic" because an epidemic is something contagious. That's a fine point that always leads to hate e-mails telling me how wrong I am.
3) Any critique of small studies leads to angry e-mails and comments.
Published autism research, especially on various treatments and therapies, is often in the form of small "case studies" involving one, two, or three subjects. Any "study" involving three or fewer people is not generalizable. It is valuable as a pilot project, but nothing more. Yet, we see press release after press release about studies of autism therapies. When I complain that studies of Social Stories, video modeling, and other techniques lack large enough populations and consistent replication, I generally receive four or five angry e-mails accusing me of not wanting children to receive "scientifically supported" therapies. Sorry, but three children do not constitute a conclusive study.
Someone asked what makes me qualified to state such a thing. A research doctorate and courses with titles such as Research Methods, Quantitative Statistics, and Research and Evaluation. There are quantifiable numbers needed to ensure a study is generalizable. Without getting into the math, there really is a reason you only need to survey "1000 U.S. Voters" to estimate election results. There's a minimum population you need and a maximum population beyond which results are not improved statistically. For autism in the U.S., a professor and I calculated the minimum population for one particular study of autistic students to be 48 participants, with an ideal population of 60, and a "threshold" population of slightly more than 100 participants. Three? Not generalizable at all. Nothing better than anecdotal evidence, one might argue.
Case studies are common in education and psychology. Small studies are important and even essential to the development of larger studies. Case studies are common in the social sciences, as are "ethnographic" studies. These are not the same as quantitative research in the "hard sciences." These studies are meant to inform theories and shape future research, but they often include numerous caveats by the researcher that the studies are not meant to be generalized. Of course, press releases and news stories don't explain the nature and purpose of small-scale case studies.
4) Any critique of ABA-based therapies is taken as an attack on all therapies and practitioners.
Only a small, small number of therapists practice to the original methods of Ivar Lovaas and his colleagues. This is a fraction of the therapists and specialists serving individuals with autism, but the moment you criticize the fringe groups people presume you are against any and all ABA-based therapies and educational strategies. I've pointed to NARTH, in particular, as a group that invokes the Lovaas name and methods to "cure" homosexuality and "feminine traits" in boys. No one should take these therapists seriously, but I am also reminded that homosexuality was considered a disease well into the 1980s by a significant minority of psychiatrists.
I support research to identify the best therapies for any and all challenges individuals face. What I don't support are therapies or applications of therapies that have been discredited. Curing "feminine" boys? Seriously? I think being against that therapy is pretty timid. I am also against any use of aversion-based therapies for individuals who lack the ability to refuse such approaches. Negative reinforcement doesn't seem "right" to me.
5) Any personal story is criticized as either making autism look bad or glorifying autism.
Whenever I write about personal experiences, I'm certain to get a few notes either attacking me for "glorifying" autism or for depicting autism negatively. Guess what? Autism is a negative, most of the time, as are my other disabilities. I don't find being partially paralyzed improves my life. Who wants to use a cane to walk on bad days? Migraines aren't wonderful gifts, either. So, no, I don't "celebrate" autism. It is one of many challenges with which I live. Other people live with more significant challenges, though, so I don't consider it too useful to surrender.
Do I like some of my skills that might be attributed to autism? I've written before that I don't mind being decent with computers, logical problems, or languages. I don't mind the "gifts" -- but I can still dislike the impairments, too.
When I write about falling down, often literally, and dusting myself off before moving forward, I can predict that I'll receive an e-mail or blog comment that I have glorified autism or made it seem like a great thing. The other complaint is that I make it seem like anyone can accomplish something in life, ignoring how horrible life is for some disabled people. I've met people in some pretty horrible situations, and yet they've managed to do much more than I have. They don't make me feel bad about myself -- they remind me to keep trying.
Yes, some severely challenged children will be fortunate to make small progress in life. That doesn't mean we shouldn't celebrate those small victories. I've celebrated a teenager mastering shoelaces. That's not condescending -- it was a truly great accomplishment for that person. Why can't we each have our own goals and targets? My goals are not impressive to some people, but they would be spectacular for me. I try to have reasonable goals based on the challenges I face; I am not planning to run marathons or scale mountains.
6) My status as a "neurodiversity" advocate (or not) leads to complaints.
At least once a week, someone writes to me about my role as an "ND" leader. I'm not a leader of anyone, much less any group. Of course, when I write that I'm not interested in most ND activism and/or the self-advocacy movement, then I'm accused of not caring about civil rights. I am not a member of various self-advocacy groups, I'm not active on their mailing lists or forums, and I'm not interested in their social gatherings or conferences. I admire some people with passion, but too many get consumed by that passion.
My ambivalence towards ND pleases no one. That's okay with me, since I can't get that passionate about neurodiversity. I'm glad there are voices speaking for that segment of the community. On some issues, I agree with them, on others I do not agree. Admittedly, I'm not joining any marches, protests, or even e-mail petitions. I am outspoken when it comes to civil rights, but I'm not a believer in the power of anger -- anger upsets me and leaves me unable to function. I believe in political and legislative action, carefully considered and debated to prevent knee-jerk reactions that actually make matters worse.
I've had autistic activists call me a "traitor" but that's a bit silly. I'm not against teaching people about autism or advocating for better access to public spaces and services. I'm all for increased awareness and tolerance. I'm simply not vehemently opposed to some groups they dislike. I'm not going to accuse a parent supporting Autism Speaks of wanting to commit genocide. I'm not going to boycott my favorite stores, either, just because they donate to the "wrong" charities. The better response would be to establish a research grant and education program, then seek to compete for donations and corporate funding.
Again, I see no contradiction in admiring the self-advocates while not supporting the rhetoric and actions of some self-advocates. Why must I take an all-or-nothing position? What's wrong with stating that I am not comfortable with neurodiversity as a "movement" while also stating that I believe autistic people deserve more respect and access to services?
Only an Inkling
The preceding topics offer only an inkling of those that seem to provoke angry e-mails and comments. As I wrote at the start of this essay, every post seems to result in at least one angry reader being compelled to respond. I can't even write a "light" post without someone getting upset. I suppose that I should be impressed anyone takes what I write that seriously.