Controversy and contention seem to go hand-in-hand with autism. This isn't a new thing, either. Just think shades of the refrigerator mother day, something that was still in play in the early 90s when autism entered my vocabulary. The first work I ever read on autism was Bettelheim's crap. Needless to say, I have had an abiding aversion to that man and everything he touched since then. To find out he was a fraud, well, that was icing.
Today's controversies and areas of contention regarding autism are more numerous and rankerous than I personally have witnessed since 1993-94 when the word autism came into our lives. We'd had years of experience in dealing with an autistic child, certainly, as my oldest was born in 89. And, yes, as a friend and I were discussing about our children, some come out of the womb autistic. All three of mine did, even if it took time to accurately name it and accept it. There were no controversies other than the refrigerator mom one. No hint of vaccines, no woo treatments. Nothing. There was an absence of information, an absences of practical treatment options and tremendous pessimism regarding outcomes.
Today, there are vaccines and their role in causation, the role of digestive and intestinal issues, the role of gluten and casein intolerances, mitochondrial dysfunctions, the heritability of autism and the role of environmental triggers, regressive autism versus classical autism, standard evidence-based treatment versus non-tested or non-replicated treatments, recovery versus cures, autism as auto-immune disorder, neurodiversity, and disability rights. There's more as well: are we autism parents (NO), are we an autism community, autistic community, autism culture? Let's not even get started on the warrior parents thing. Kathleen has a much better name: worrier parents.
Sigh. As if all this isn't bad enough, there's this need, at least in the online autism-related community, to delineate everyone into two groups: pro-vaccine, pro-neurodiversity, anti-biomed, anti-cure people (said labeling done by anyone belonging to any of those opposite divisions) and anti-vaxxer curebie woo-bodies (by anyone belonging to the opposing side). It is so not that simple, and if I didn't think it were offensive to many of my autistic friends who really aren't all black and white thinking (some are), I'd say it goes a long way to proving the broader autism phenotype that you have all these parents categorizing people into either/ors instead of realizing that there are probably as many positions as there are people.
Every month or so, I end up needing to repost my positions to remind the people who want to mislabel me that the labels they apply I reject. Huh. I try not to label others one-dimensionally, so it'd be nice if people critical of me would at least be critical based on what I've actually said rather than their made-up contentions. I don't care if you disagree with me, I don't care if you hate me, but for goodness sake, do it for a real frakking reason. Man, I want to earn condemnation, so at least get your reasons for it right.
(Gosh, Jonathan, Roger, hell, and Lurker, too, that's a little bit about you as well). So, for all the new readers that my best new friend decided to bring me, here again are my positions.
I posted on GFCFKids; turns out I did actually belong to one of the groups that my best new friend decided to post my information to.
I, too, am sad and disgusted that this woman could make inaccurate and
misleading accusations regarding my behavior and my intentions and then believe
that her behavior is the moral one. I do not lurk on these boards, do not belong
to them, had not heard of them until the thread at LBRB. I do not make fun of
parents and I do not mock them. I do counter misinformation regarding autism,
vaccines, and related woo.
I would welcome readers to look over the thread at LBRB and at my blog at
While my information is readily available for any to see, her inducement to
harassment violates the law and has already resulted in one threat against me.
I don't mind criticism, and I don't mind if other's don't find me their cup of
tea, but it ought to be based on something I've really done and not on the lies
of this woman.
I received a pleasant response from a member, and I then posted this in response:
Absolutely, I understand that; I wouldn't want my children to have educators
working with them who didn't think they could improve, couldn't make tremendous
progress, and for a small but significant portion, improvement to the point of
functioning at the same level as their neurotypical peers. I have had
psychologists tell me that autistic kids don't get better. They didn't see my
And I've been careful to acknowledge that vaccines do have adverse effects for
some, as medications do. One can hold onto epidemiological analysis that says
vaccines don't cause autism while acknowledging the personal stories of parents
whose children have had immediate adverse reactions and wind up with an autism
diagnosis. One can also hold onto the idea, based on the research, that there is
not one cause to what we label autism; there are many autisms in that there are
many causes and varying presentations.
I believe vaccination choices are personal choices that should be made based on
non-emotional, evidence based information. I don't condemn parents for choosing
not to vaccinate; I argue against not vaccinating out of unwarranted fear and
misinformation. I am all for more research into making vaccines as safe as
possible, and the posts on my blog demonstrate this repeatedly.
I believe in working hard for our children so that they can achieve their
potential while at the same time working hard to make the world more accepting
of people who are different and disabled. It is possible to conceive of autism
as both a disability for those more severely impacted as my oldest is, and as a
difference, as it would appear that it will ultimately be for my two youngest,
It's not a full statement of what my positions are, so if new readers are interested, here are some of the blogs worth reading:
Neurodiversity is about accepting people's value and worth is independent of their functional level.
It is about working to help people be accepted and supported.
It is about helping people reach their potential.
It is not inherently anti-cure; if it exists as a movement, it would reject the terminology.
It's about making people's lives better.
Damn stupid name. Everything is biological or medical in nature (even if it's physically related like PT, OT, and speech, it's working to rewire the neuron connections, hence it is biological.
How about evidence-based versus woo/alternative? Better distinction. Way more accurate.
I am for evidence-based practices and minimal to no woo.
Does not appear to be a cause of autism at the epidemiological level.
Really not interested in arguing with individuals on their personal narrative level.
Adverse reactions do happen.
More research should be done on making vaccines safer, and on making the safest schedule for individuals.
Multiple causes. Multiple variations. Not autism, but autisms.
Autism Community/Autism Culture.
I am not an autism mom.
I am not autistic.
I am the loving, accepting mother to three children on the spectrum.
I am a member of the autism/autistic culture.
I hope that we can form an overarching community where people feel valued and accepted.
UPDATE 08/05/2011 The comments below which mock Jonathan Mitchell are ones I regret I allowed to stand. Because it would be disingenuous to remove them two years laters, I will leave them stand with my apology for not acting then. Apparently, Mr. Mitchell was deeply wounded by these, and I sincerely apologize for any role I played in that hurt.