This afternoon, I received two separate press releases - within five minutes. The first, from Alison Tepper Singer, announces her resignation as Executive Director of Autism Speaks. Says Singer in her press release:

...for some time I have had concerns about Autism Speaks' policy on vaccine research. Dozens of credible scientific studies have exonerated vaccines as a cause of autism. I believe we must devote limited funding to more promising areas of autism research."

Singer resigned prior to the January 14th Interagency Autism Coordinating Committee (IACC) meeting, at which the discussion of vaccine research was to be continued from the December meeting, at the request of one of the public members. Knowing she might cast a vote with which Autism Speaks might disagree, she resigned from Autism Speaks prior to the meeting. Singer serves as a public member of the IACC and will continue to serve until 2011. She was appointed to the IACC by outgoing HHS Secretary Michael Leavitt in 2007.

Autism Speaks, for its part, issued a separate press release confirming Singer's resignation:

Autism Speaks today decried a vote by the Interagency Autism Coordinating Committee (IACC) to reverse a previously voted-on decision to approve objectives relating to vaccine safety research as part of its deliberations for the Strategic Plan for Autism Research. The decision to debate removing these objectives was not posted on the meeting's agenda, nor were the public members given any forewarning that this section of the plan – which was resolved at the previous IACC meeting in December -- would be revisited. As a result, Autism Speaks is withdrawing its support for the Strategic Plan.

...“We are angered and disappointed by this last-minute deviation in the painstaking process of approving the Strategic Plan. Members of the autism community have worked tirelessly during the last two years to develop a plan that would set the stage for significant progress and discoveries for autism research over the next five years,” said Bob Wright, co-founder of Autism Speaks. “In a matter of minutes, the Federal Members of the IACC destroyed much of the good will that had been established during the course of this process. Because of this surprise tactic, we now have a plan that is tainted and cannot be supported by the autism community.”

Five of the six public members voted against this revision. Autism Speaks Executive Vice President Alison Tepper Singer was the sole public member to cast a vote in support. The evening prior to the vote, Singer submitted her resignation to Autism Speaks – which was accepted – based on her intention to vote on certain Strategic Plan vaccine safety matters in a way that diverged from Autism Speaks’ position on this issue. Thus, in casting votes on January 14, she was acting as an individual public member of IACC and no longer as a representative of Autism Speaks.

For my own part, I was surprised to learn that, evidently, Autism Speaks is extremely interested in supporting research into a possible connection between vaccines and autism. In fact, they're so anxious to support such research that they're willing to say good-bye to their long-time executive director because of her unwillingness to support such research.

My surprise is due, in large degree, to the fact that the Wright's daugher, Katie, has gone on record as disagreeing with her parents over vaccines. Katie has long believed that her autistic son, Christian, was injured by vaccines - and up until today, I had the strong impression (based on Autism Speaks' prior press releases) that she and her parents were at odds over this issue.

Today, it seems, Katie and her parents stand on the same side of the aisle.

I've been working on an article about living situations for adults with autism. The more I hear, the more frustrated I feel. Of course, there are good reasons for frustration: there are very few good group homes, supported living situations or other options for adults with autism. Those that are available have wait lists out the door - or are paid for out of pocket.

But in fact, that's only one reason for my frustration. I'm also finding myself increasing frustrated by the realization that the expectations placed on adults with autism (and, in fact, all adults) are, to a very large degree, the invention of the past 60 years of cultural evolution.

Since when did families assume that each member must live in his or her own establishment, simultaneously earning a living, managing the books, shopping, cooking, cleaning, mending clothes, repairing the house, tending the gardens, and maintaining the car? In fact, this has been the case only since about 1947 - about the same time that the suburbs were essentially invented by Mr. Levitt, and "retirement" was invented out in Sun City Arizona.

Before that time, there was no shame in living "at home" with your parents. There was no shame in paying for - or accepting payment for - domestic work. Multiple generations often lived together, with no embarrassment on the part of any one of the generations. Except in cases of real poverty, no one would ever expect the breadwinner to also manage the household, or vice versa. Except in most unusual situations, it wouldn't occur to a family to find a nice institution where an elderly relative could be "properly looked after." Pick up a novel written before the second world war, and you'll find a completely different perception of what adults were expected to know, understand, and do.

Now, I can't say that I'm advocating a return to the good old days of class warfare. But I am questioning the assumption that it's somehow embarrassing or shameful to live "at home," or to have help in managing a household. I'm questioning the idea that it's "better for everyone" to live separately.

In short, when it comes to adults with autism (or to families in general, really) - is independent living over-rated?

A long time ago, I wrote a blog post about managing autistic behaviors in public. Here is a reader's response - simple, concise, and to the point:

You're the child's parent, who cares what other people say. I have an autistic brother and he can be a handful sometimes, but all you have to do is say the work no and tell him to stop. Just try to get him to recognize the word NO. After he recognizes that word it'll be better.

I have to say that I admire this sibling enormously - but can't imagine feeling as he or she does. At least, not 24/7.

Who cares what other people say? Sure, sometimes I can push aside rude and annoying comments and just go my way. But the reality is that I DO care - most of the time. When someone praises my son, I glow. When someone derides him, I feel hurt and angry.

Should I be able to rise above such petty feelings, and simply be a parent to my child? Sure.

Am I likely to be able to avoid caring what others say - most of the time?

Nope.

A pre-natal test for autism moved a step closer yesterday with the announcement by scientists at the University of Cambridge that high levels of the male hormone testosterone in the amniotic fluid surrounding the foetus in the womb may serve as an early warning signal of the condition. According to the British publication The Independent,

A pre-natal test for autism moved a step closer yesterday with the announcement by scientists at the University of Cambridge that high levels of the male hormone testosterone in the amniotic fluid surrounding the foetus in the womb may serve as an early warning signal of the condition.

Researchers led by Prof Simon Baron-Cohen, the autism expert, say the discovery raises the possibility that an amniocentesis test similar to that performed for Down's syndrome could be offered to mothers in the future.

Does this raise new ethical issues?

Professor Baron-Cohen seems to think so. He called for an ethical debate so that society could decide where it stood on the issue. "Would [a test] be desirable?," he asked. "What would we lose if children with autistic spectrum disorder were eliminated from the population? There is a test for Down's syndrome and that is legal and parents exercise their right to choose termination. But autism is often linked with talent. It is a different kind of condition."

Of course, the question of whether autism should be prevented, cured, or otherwise ended is highly controversial. In fact, it's inflammatory. Almost equally inflammatory is the notion that people of potential talent and genius should be prrotected, while people of less outstanding capability ... shouldn't. Nevertheless, as research into causes, treatments and markers for autism progresses, the question will become increasingly relevant.

What makes the question even more complex is the reality that, as of now, the definition of autism is astoundingly broad. Identifying an "autistic" person in the womb is not especially helpful in terms of providing parents with information about what issues, needs, abilities and prognosis to expect. The Independent cites Dr. Baron-Cohen:

There is a critical difference between autism and Down's syndrome, he says, which is that in some cases autism is linked with genius – displayed in an obsessive interest in mathematics or engineering or music. Newton and Einstein were almost certainly autistic and the idea that people who were not only valuable members of society but also important contributors to its future might have been eliminated before they were born raises uncomfortable questions. Should medicine offer the opportunity to eliminate a foetus who may turn out to be a person of such importance, he asks?

Of course, there is no prenatal test for autism. So perhaps this blog post is premature. But it seems to me that this is a topic worthy of discussion - both early and often.

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