Sunday, February 24, 2013

Defining the "Competition of Suffering"

A statement from GRASP executive director Michael John Carley concerning the trials of the last few months, from the ties of Sandy Hook to the DSM-5 engulfing Asperger's into autism (which I haven't spoken on for many reasons).  It's long, but there's a point made about considering autism a fad where people are supposed to feel sorry for our collective. I think a good question to be asked here is the same question we ask and never answer, which is why certain autism spectrum disorders are considered "suffering." Here's what sticks out:

We’re still hearing about ongoing consequences of the inaccurate descriptions of AS. Students with AS walking into their schools and hearing their teachers warn the other kids that "Joey has what Adam Lanza had, so be careful," or adults with AS being treated very differently at their workplaces immediately after the shootings.

And now we’re getting articles like [Amy S.F. ] Lutz’s, a mom who states strongly that “these children will never write one blog or produce one video” therein sacrificing possibility in the name of probability (always an ethical mistake, and she’s bound to be proven wrong by some of them). Lutz goes on to question whether or not autistic advocate, Amanda Baggs, actually has autism, or is faking it. Jim Sinclair, like Baggs, has been through this before; and while I certainly can’t guarantee their diagnosis or lack thereof either way, what I can guarantee is that if Lutz is wrong (and she goes nowhere near proving her case), I certainly have a sense of how awful she will have made Baggs feel.

Lutz also quotes my old negotiating partner (when she was at Autism Speaks), Alison Tepper-Singer, now the head of the Autism Science Foundation, as saying: "There are more studies focused on higher-functioning adults and the services they need, such as finding employment. But because we’re re-allocating the money, not increasing the budget, that means shifting funds away from the needs of lower-functioning children." Whether right or wrong (and a close friend high up in the research chain assures me its wrong), why, as the head of an autism organization (capable of good) would someone say that?

Especially because unlike the Competition of Suffering from the mid-2000s, this one is one-sided.

Not to re-hash to the politics lecture at Columbia, but the leaders of autism/AS organizations have so little feelings of collective responsibility when compared to other non-profit fields. All sides have members that are overwhelmed, and when we are overwhelmed, we don’t say wise or constructive things, and that’s blameless human nature. But too often in our world, our hurting memberships are pandered to by supposed leaders; not led [my bold]. Gasoline, rather than perspective, is poured on the fires of either the angry, bullied, unemployed and lonely person on the spectrum; or the families with non-verbal children who don’t have the means, the money, or the energy to fight for the services they’re entitled to, nor the services the should be entitled to but legally aren't  Giving voice to the overwhelmed is like interviewing someone caught in a fire at a time in which they don’t know whether or not they’ll get out of the burning house, as opposed to interviewing them a week after they've safely escaped the fire.

Yet that’s the way it’s always been in our world. At times, great forces of shame have successfully silenced the more dysfunctional voices; but most of the time they have sadly run free, without any shred of accountability. Other non-profit arenas such as homelessness or child welfare also started with little accountability, as people had to learn by trial and error what statements went too far, and what statements were constructive in the cause of social good. The autism/AS field is young by comparison, but our trial and error period is compounded by the opportunities provided by so much media attention—coverage that we all paradoxically benefit from.

Monday, February 18, 2013

Can Autism Be Prevented?

Posting an article like this one makes me want to start a Twitter feed.

The reliable Emily Willingham has a great take-down of a piece on Fox News asking if autism can be prevented. I really can't give a full editorial on this, as she words this much better than I ever could. Essentially the main source, Robert Melillo, is on a PR campaign to promote brain balance, so it's a rather convenient argument for him. I know more than a few of us take issue with Fox News on their politics, but even on news like this, it's ridiculous.

Most of the “measures” remain hidden in the pages of this book–which you can purchase!–but the one the article cites? Prenatal vitamins. Raise your hand if you took prenatal horsepills before, during, and after pregnancy and still had a child with autism. Melillo seems to be referencing this paper but misinterpreting the odds ratio data. The authors note the limitations of their study here in the full text of the article, which included that it relied on maternal recall of vitamin intake around pregnancy, several years after the pregnancy. They also did not collect information on diet. So, sure, take your prenatal vitamin, but don’t do it because you think it’ll prevent autism.

I'll have a bigger blog keeper on the way this week about a big step towards a big accomplishment, and juggling tasks in light of this.