February brought on winter doldrums and also a topic that came to dominate 2008, the presidential election, starting with a post on the candidates’ views on autism prior to Super Tuesday on February 5th.

There was more evidence refuting the vaccine-autism link—and specifically the MMR vaccine—from the Archives of Disease in Childhood. We need to get the word out about the evidence that there is no link, as it’s been reported that more parents are choosing not to vaccinate their children, because they fear that vaccines or something in vaccines might cause autism. And measles cases have been on the rise in 2008, with 5 cases reported in San Diego (and soon 11 cases) in mid-February.

In the UK, the National Autistic Society began another phase of its Think Differently about autism campaign, with a focus on autistic adults and the message “I Exist.” The need for this campaign was more than made apparent on hearing comments about autistic children as “retards” made by Adam Jasinski, a contestant on CBS’ Big Brother TV show.

After an article in Wired magazine featuring Amanda Baggs and Michelle Dawson, questions about autism as disease/disability/difference led to discussion (of a rather heated nature, at times).

And then, on February 28th, then-presidential-candidates Senator John McCain linked the rise in autism cases to mercury in vaccines…………………

It’s so often said that

If you’ve met one person/child with autism, you’ve met one person/child with autism.

And of course this is true. It’s why, for one thing, I (like many others parents) emphasize the “I” in “IEP”—”Individual Education Plan.” Many’s the time that Jim and I have sat at the table with the Child Study Team and insisted that Charlie needs to be taught as he needs to be taught, not as “autistic children in general.” It takes awhile—weeks, months—for teachers and therapists, for anyone—to get to know Charlie’s patterns of speech and his way of doing things; to know who he is, as an individual. And it’s after this that they can teach him well, and better, even.

It’s said, too, that the cause of autism in one individual may well be different from the cause of autism in another individuals. Indeed, the keynote address of the 2009 IMFAR conference (International Meeting for Autism Research), is entited “Time to give up on a single explanation of autism?” It’s to be given by Francesca Happé of King’s College London. This is the abstract (accessible via this page, which links to a PDF file of the Abstract Book and the Program Book):

In this talk I will suggest that we should abandon the search for a single unifying cause for the diverse symptoms defining autism. I will present recent evidence of behavioural fractionation of social impairment, communication difficulties and rigid and repetitive behaviours in a population-based sample. Twin analyses in the same sample suggest largely nonoverlapping genes acting on each of these traits. At the cognitive level, too, attempts at a single explanation for the symptoms of autism appear to have failed. Instead, different cognitive accounts are needed for the different aspects of
autism, and distinct neural systems appear to be involved. Implications and future research directions will be discussed.

More of what Happé has said about there being no single explanation for autism is here; in particular:

Referring to the Twins Early Development Study, Happé et al. further suggest that this “behavioral or phenotypic separability of the triad of autistic-like traits” is “mirrored at the genetic level”–that separate genes contribute to social impairment, difficulties in communication, and rigid/repetitive behavior. And when the researchers turn to cognitive accounts of autism, they note that, while these have “traditionally aimed to explain all three key features of autism,” that the attempt to pinpoint a monolithic, “single cognitive account for the three core features of autism” is to be abandoned, and “good accounts” sought instead for each feature.

The possible causes of autism are highly varied, from the latest (rain) to the (too familiar) list of genes, the environment, vaccines, pollution. ultrasounds, TV……….. Equally varied are views about what’s “autism” or, rather, what are the “autisms.” There’s frustration with the notion of the autism “spectrum.” There’s calls for designating autism and Asperger’s Syndrome as separate conditions. There’s a lot of dissent about what “low-functioning” autistic individuals needs, versus those deemed “high-functioning.”

Have we gotten into the habit of insisting too much on the differences between one individual with an autism spectrum disorder diagnosis from another? Are we moving away from being able to build a sense of commonality, of share interests and experiences? Has the notion of some kind of e pluribus unum—”out of many, one”—-among autistic individuals been rendered obsolete?

My own son is usually placed at the “lower” or “middle lower” end of the spectrum, due to his cognitive, communication, and other challenges. Accounts by “higher-functioning” autistic individuals of their experiences, struggles in learning and being in the world, have helped and continue to help me in trying to do the best by my son. There are differences, and yet some common thread of certain sorts of experiences runs through these accounts and I like to think (maybe I’m a wishful thinker) that more is shared in common. Of course my son is (as are you, my reader) unique, and he’s also joined to that common thread of being autistic, of having autism.

E pluribus unum.

The claim that vaccines can be linked to autism suggests that a child became autistic and was somehow “damaged” by a vaccine. According to such a view, not only is autism something that happened to a child; it is something bad that happened—-a recent CBC News special feature, Positively Autistic, says that “since the early 90’s, an autistic rights movement has sprung up, challenging the official view of autism and working to change how the world sees autism.” Interviewed are: Amanda Baggs, Estée Klar-Wolfond of The Autism Acceptance Project, Michael Moon, Michelle Dawson, Dr. Laurent Motron, and Ari Ne’eman and Scott Robertson of the Autisitc Self-Advocacy Network. One comment from a mother :

This news story gave me a real jolt -it is by far, the best story I have ever seen on autism in the media and it was bang-on. Perhaps because it was individuals with autism who spoke for themselves. I have 2 non-verbal children with autism and I am certain of their potential even though they are considered to have an intellectual disability (a diagnosis criteria established by the neuro-typical). There is a beauty, a uniqueness in them. As far as humanity goes, they are gems. My only fear as a parent is that perhaps, my intentions however, good, may be at times be misguided. I want them to “fit in” so that they will not fear the world and because I want them to connect with others - “no man is an island.” However, for this to be accomplished we all have to change the way we view humanity and cherish the differences rather than try to have everyone fit a mold that really doesn’t exist anyway. I feel that those that spoke on your story have spoken to me for my kids and have given me insight, perspective, and guidance. Thank you so much for airing this.

Seeing autism as a “disorder” or a “difference” can affect, and alter, how one thinks about “curing” (and “crusading against“) autism—go here to see the video.

The Canadian Human Rights Tribunal has upheld a complaint against Canada post by Michelle Dawson, a former mail carrier in Montreal and—in the words of the October 6th Leader-Post—an “internationally known researcher and writer on autism issues.” The details are on Dawson’s The Autism Crisis blog; her post (and the comments) need to be read in full. I quote from the end:

…..this Tribunal decision, for all its faults with respect to the facts of the specific case, is instead a step in the right direction. It’s a step towards human rights for autistics in Canada, and towards all the possibilities human beings have, when we are regarded and treated as equals, and can proceed in society as fully human beings with human rights and dignity.

Congratulations and thank you—here’s to “all the possibilities” that human beings have, should have, and that we have to keep working for.

Are people with autism trapped in their own world? Or are the rest of us just trapped in ours?

asks Tara Parker-Pope on the New York Times, regarding the the Wired magazine article on autism featuring Amanda Baggs and Michelle Dawson.

Parker-Pope asks a chicken and egg kind of question about autism: Is it a disease and a disability? Or is it a difference, a different way of being human? And who decides—autistic persons themselves, “experts” in autism, those who live with autistic persons—or who should decide?

Writes Cory Doctorow on Boing Boing about the Wired magazine article on autism featuring Amanda Baggs and Michelle Dawson:

The article looks into the long-held belief that autism and retardation are tied together and concludes that this just isn’t true — rather, that people with autism have been incorrectly classed as retarded for generations.

Yes.

It’s very obvious to me why people would think my son is mentally retarded; his academic performance and testing reveal this. But anyone who’s spent any time with Charlie knows that—-while he is very limited in his speech and while it often takes a long time (minutes, hours, days) for him to understand things that are said to him—-he doesn’t just look smart, but he is. Charlie’s very attuned to all that is said and done around him; he has an innate sense of direction and a strong memory. He needs a lot of help to navigate the world, whether looking both ways for cars or listening for his name to be called; he’ll very likely always need a lot of supports. He’s neither a genius nor a savant.

And he’s been smart enough to teach me that there’s a whole other way of being and understanding and processing the world—something I was more than ignorant of before getting to know a boy named Charlie.

Go here to read Wired’s article, The Truth About Autism: Scientists Reconsider What They Think They Know. The article closely profiles Amanda Baggs—-who notes that “‘I don’t fit the stereotype of autism. But who does?’”— and Michelle Dawson—-who says “‘There’s such a variety of human behavior. Why is my kind wrong?”‘.

And some words by Mike Merzenich, a professor of neuroscience at UC San Francisco:

Mike Merzenich…….says the notion that 75 percent of autistic people are mentally retarded is “incredibly wrong and destructive.” He has worked with a number of autistic children, many of whom are nonverbal and would have been plunked into the low-functioning category. “We label them as retarded because they can’t express what they know,” and then, as they grow older, we accept that they “can’t do much beyond sit in the back of a warehouse somewhere and stuff letters in envelopes.”

And I know one boy who struggles to talk and to read and to answer the question “who many crackers?” after he’s just counted out what’s on his plate: He’s a boy who, too, has been learning the A and D strings on the cello, and who—pointing out the window and calling out “this way, this way”—shows he knows his way up and down New Jersey highways. People might call him retarded and he has a lot of challenges and impairments, and a lot more smarts than you or I can tell.