Wednesday, March 16, 2011

Always Offending Someone

Today I had a pleasant e-mail exchange with another autism blogger. It reminded me of a basic truth about autism: express opinions or facts, you are certain to offend someone. You could state that autism begins with the letter "A" and someone will read into this statement something conspiratorial. "Autism" as a topic is as polarized as the current U.S. political environment. Every issue is an "us vs. them" issue.

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.

12 comments:

  1. I am with you in most of what you write here. I feel the same about a lot of things you write. Thanks for this post.

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  2. I feel the same about a lot of what you are saying here, and understand where you are coming from, I get many of the same issues with my own writings and communications. Thanks for this post, it helps express things that I wouldn't be able to express but shows a lot of what I feel.

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  3. Very thought-provoking post. I've learned (and continue to) that there's no way to figure out how and who will be offended by one's work, which pieces will resonate and offer lots of constructive dialogue, which will offer lots of nonconstructive dialogue, and which will lead to absolutely no exchanges whatsoever.

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  4. Much like mainstream politics, subtlety and nuance does sit well within autism debates.

    I think you would be comfortable with the first incarnation of "Neurodiversity" -- what it has become over the last few years is a nonsensical cult devoid of connection to the real lives of autistics...

    Try not to let the despair overwhelm you ;)

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  5. I appreciate all the comments. I realize public discourse has never been elevated, one only has to read history to know most debates are personality-driven and content void. I often sense that the "other side" has more charming personalities and better public relations.

    It is good to know I am not alone in being exhausted by the lack of substance and the quick emotional outbursts facilitated by the Internet. I do believe the speed and ease of the Internet can allow a handful of people the power to ruin discussions.

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  6. Thanks for writing this out. I am realizing that I have spent so much time avoiding conflict that it's hard to even know what I think myself.

    Understanding that you can't ever really predict how others will respond is helpful to me, as it lets me know I can expect both good and bad when I step out but that that doesn't mean it's not what I should be doing.

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  7. I used to believe the more voices the better, then I realized how many mean-spirited voices there were. I suppose we have to learn to ignore them at some point, but it isn't easy. My wife reminds me that mean people usually have doubts their views are logical / reasonable.

    When you write about autism, you have to be willing to ignore a lot of "static" noise. You can't waste energy responding to all the mean people or the misinformed crusaders. You'll end up exhausted.

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  8. You've certainly picked a topic this time that really speaks of the experience many of us have encountered. So, firstly ... well done for tackling it at all, let alone having tackled it so well.

    For some reason, my family has never really understood what my degree actually means and what I've actually studied; and they've mostly been rather unreceptive to the idea that I might actually know anything about what I've studied. Seems to be less these days: I'm now my oldest sister's go-to guy for answers on all things autism (which has not always been the case). But it's extremely frustrating when all that work that one has done in order to qualify just gets ignored because at one time one was thought to be (as they said at the time) 'mentally retarded'. I put it down to my failing to live down to unreasonably low expectations of me.

    What you say about how studies get reported in the press (even the science press)... so right! And this has been a bone of contention in my family: my youngest sister was adamant that vaccines caused autism, and nothing I could say would change her thinking on that - not even the fact that I understood the science and she is not a scientist at all (she's our family history researcher, although she has no degree). Our aunt is a medical practitioner, and she has told that sister that - on matters autism - that sister "... should listen to David, because that is his area!" Not that this advice was heeded that much back then. I also have courses in my profile that deal with research methods and data analysis, and I still get told that I "don't know everything!" That may well be very true (it is!); but the fact remains that - even with a master's degree - I am more aware of what I don't know than most people who don't have a degree at all. Even saying that can be seen by some as being arrogant, even though it is a statement of fact.

    Seems that it pisses people off if you don't know something and it pisses them off even more if you actually do know it. Says a lot, really, about human nature.

    "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."

    That last sentence - one way to look at it, but it doesn't often feel that way. My ex-wife and I have started a project that is going to get us hated pretty much all over Finland. I shall probably write about it soon, and then more people in the world can hate us for it. Maybe the more hate-mail we get from it, the more it means that we've done our jobs well *sigh*

    Strength to you, mate. And well done on tackling this issue so well.

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  9. David:

    Thank you for the kind words. When I am asked questions outside my area, I tend to explain that my doctorate is *not* a medical degree -- I am not an expert in most things, and even the field of my "expertise" is evolving (that's the point of research). Most "lay people" want answers, not nuance, and definitely not "I don't know."

    I am merely one person with one background. But, I do know that as a researcher I should listen to and respect other researchers. If I want to know about aeronautics or mechanical engineering, I ask my wife. If I want to know about medicine, I ask my medical friends. Knowing what (and why) I don't know is important to me.

    You are right that when you do have the expertise and people dismiss you, that's annoying but it is also human nature. Anecdotes always trump research. They're are actually good studies of this regarding medical support groups. Patients trust each other and family members more than they trust doctors. A good "story" always trumps research because research seldom makes claims of 100% certainty.

    It seems likely that I will be writing more on these issues, including the nature of research work.

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  10. Very good (and brave) post. Thank you>

    It seems as a spectrum of disorders/conditions, autism brings under one umbrella label a wide range of conditions of different etiologies but with the same clinical picture. You are very right to say that there are several ‘autisms’. So any claim that starts with ‘we autistics’ is meaningless. What aggravates the situation even more is that there are many conditions (I don’t dare call them disorders),( e.g., NPD) that lead to social and communication problems (but have nothing to do with autism). In a way, Neurodiversity is a good term to embrace ALL different conditions (literal interpretation of the term). And it is absolutely right to treat each and every one (whether you are autistic or schizophrenic or bi-polar, etc.) with respect and understanding. So (again if you look at it literally) there should NOT be hatred involved if you are a member of this movement. Disagreements – fine, but not fights. If you want to be respected, treat others with respect. What is going on, however, is frightening. Political correctness has penetrated in the discussions and you are attacked for using the ‘wrong’ word while describing autism, for example: “How dare you to say that ‘we autistics’ have sensory problems?/ or ‘Looking for treatments means that parents hate their autistic children!” – No, they don’t. Both non-autistic and autistic children need help and education. Those with autism need even more support and understanding.

    Autism (like any other condition, including ‘non-autism’) may have both strengths and weaknesses. And yes, I love my son to bits and I’m very proud of how much he has achieved (though he still needs some – OK, a lot of – support 24/7). I admire his autistic abilities (his perfect memory, super-connectedness with the environment, his ability to pick up my emotions, his very unusual interpretations of events and many others), but I have to say that autism may be very disabling. (Shall I apologise for this?) I’m a strong believer in autistic intelligence – ALL autistic individuals are intelligent (including those who have never talked or was labelled ‘hopeless’ – like my son when he was just 2 years old). But it is not enough to recognise it, there should be ways to help them use their intelligence (which is VERY different from non-autistic’s) to learn about their non-autistic environment’ and give them strategies to function in the society.

    How long will we play these ‘autistic-rights-to-be-what-they-are-no-matter-what’ games? And will there ever be time when we are not afraid to say what we mean and express opinions without fear that someone will be offended?

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  11. Some people want to be offended. Other times perhaps they aren't so much offended as offensive in their manner of disagreeing. Its hard to have to live with. I don't want to admit that some people really like being obnoxious (seems rude of me to admit it) and I don't want to admit that sometimes I am obnoxious without intent. I will admit that occasionally I am obnoxious with intent -- I think (I hope) its rare. But your writing seems to be intelligent and rational, and not extreme (the little I have read so far). If you offend people, I think its safe to say that if you smiled and said that its a beautiful day outside, someone out there would be offended by it. (Come to think of it, there are days I'm might feel like verbally bopping someone on the nose for pointing out the good weather.) Thanks for enduring the humanness of your readers and continuing to share.

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  12. It does seem some people are most "happy" when offended. At least we have the freedom to walk away from those people.

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