Sunday, March 28, 2010

Conflict within the Autism Community

President Obama has nominated Ari Ne'eman (pronounced AH-ree NAY-men) to the National Council on Disability, and in the process has inadvertently highlighted a split in the Autism advocacy community. Ne'eman is an interesting guy. He apparently has Asperger's disorder and is the Founding President of the Autistic Self-Advocacy Network (ASAN). They argue that autism is a form of "neurological diversity." By conceptualizing autism in this way, ASAN sees autism as a form of diversity, not an illness.

ASAN argues that the main focus on autism expenditures should be on providing supportive services and thus finding ways to include autistic persons in society. It shouldn't be on finding a cure. In contrast, the largest advocacy group on autism in the US, Autism Speaks, still sees autism as an illness that needs to be cured. They want to see an emphasis on research on causes and cures. The New York times just published an article on the controversy.

From my perspective, as a clinician who has worked with persons with autism, the controversy is overblown. The reality is this:

First, advocates of the neurological diversity hypotheses about autism should remember that the vast majority of mutations occurring in the natural environment are maladaptive. There is no reason to assume that all diversity is good and this is the case with autism. The social and economic costs of having a child with autism in the family are tremendous and we should not idealize autism. Families are disrupted. There are divorces, because parents are depressed and guilty about the child. Siblings often feel left out and lost in the family while parents devote most of their energies to the disabled child. Autism can be a terrible disability. We have found that early intervention does have a positive impact on autism, but we are still a long way from a cure.

Second, there is a wide range in the functioning of autistic persons. People like Ne'eman can function fairly well and be remarkably successful. However, they are the exception to the rule. Most autistic individuals are unable to function independently and--if they can work at all--can only do manual labor. While there is nothing wrong with manual labor, people with autism simply do not have the social skills to function adequately in those kinds of situations. I know. I work in an county that still has a lot of factories. A person who is "different," perhaps in appearance, ethnicity, or functioning, gets horrible harassment, especially if they don't have the social skills to stop it. A factory or construction site is not a place for people with autism. There are few jobs out there for them in the community.

Finally, our current commitment to housing and social resources for people with autism is pitiful. It takes years to be placed in supported housing in Pennsylvania. I assume it is the same in other states. Care providers in group homes are terribly underpaid and there is a tremendous turnover in employees. The greater the turnover, the less the experience of the average care provider, and the worse the care is.

Ultimately, given our limited resources, we have no choice but must divide them:
  • We need basic research to better understand the causes of autism, which we hope will lead to either a cure or prevention or both.
  • We need treatment research to improve our current assessment and treatment protocols.
  • We need more social services to provide more support so that we do not abandon persons with autism.
Obviously, I'm arguing that both sides are right and I don't apologize for that. Advocates of each side can deny the legitimacy of the other side. But in the long run, treating autism is an overwhelming task and no amount of denial will make it less overwhelming. Compared to the need, our resources are very limited. Is it hopeless? No, but solving the whole puzzle of autism will take much time and many more lives are going to be impacted by it before then.

There is a book of Jewish wisdom, entitled Pirke Avot, which is variously translated, "Ethics of the Fathers," or (more modernly), "Teachings of the Sages." One of my favorite teachings comes from Rabbi Tarphon, who said, "You are not required to finish the job, but neither are your free to abstain from it." He was talking about religious study, but his advice has also been interpreted as applying to doing good works. As a society, we need to live by that wisdom, especially as it applies to all forms of disability.

Monday, March 22, 2010

We Won! (For the Time Being)

Last night, the Democratic Party won it's fight to reform health insurance. You'd think it was over, but it's not. The Republicans have sworn to repeal this legislation.

So, first, there will be another endless round of parliamentary maneuvers in the Senate to delay passage of the budget reconciliation bill. That will eventually fail, but in the meantime the Democrats will go through another round of shooting themselves in the foot by arguing over the bill.

Then comes the November congressional elections. At this point, the whole electorate will be fed up with the whole thing. This, however, won't stop the Republicans from lying about something else and continuing to stir up the pot. If the Democrats play true to form, they won't anticipate what the Republicans are going to do and will get caught flatfooted. They'll have to say such things as, "No the new health plan won't require you to get your nose pierced," while Fox News will swear up and down that it does. So, here's what I recommend:

  • First, by the November, some of the provisions will be in place. Democrats should spend the next seven months all over the news showing people what is really happening. Point out that if you like your insurance, nothing's changed. Point out that people in the high risk group have finally gotten insurance and can breathe easier.
  • Second, the Democrats should immediately and loudly and repeatedly portray Republicans as people who are perfectly happy with millions of Americans being without insurance. Put the Republicans on the defense for a change.
  • Third, don't throw numbers like "40 million" around. Instead say, "one in six Americans are without health insurance." Think about what that means the next time you're in McDonald's.
  • Finally, make them out to be the obstructionist, sore losers they are.
Make the debate about the Republicans and you'll win in November. Make it about health insurance and you'll lose to their next round of lies.
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Saturday, March 06, 2010

Health Care Hangs in the Balance

Well, here we are again, wondering what will happen to health care reform. It is amazing that we're still watching the Democrats fumbling around when there is a clear path to success.

Before Howard Dean took over as chair of the Democratic party, I used to say that Republicans are a bunch of vicious hypocrites and Democrats are a bunch of fumbling incompetents. Then Dean launched his 50-state strategy. I watched Obama run a great campaign and the Democrats in congress got majorities in both chambers. So I stopped saying it. Unfortunately, now that Dean has completed his tenure, the Democrats went back to their old ways.

So, in the hope that Democrats still have some potential, here's my message to those of them who are still on the fence about health care:

  • This is why you became a Democrat. Democrats believe in the ability to government to help people. Democrats believe that government should help everyone, not just the wealthy. Here's your chance to act like a Democrat.
  • Failing to pass health care reform will make you look inept. That's what the Republicans are counting on. Don't worry about people voting against you for passing health reform. They didn't vote for you in the last election. Worry about people who will vote against you for your legislative incompetence.
  • You'll show Republicans they can lie and get away with it. Do you think they'll stop lying if health care reform goes away? NO, YOU IDIOT!! THEY'LL SEE LYING WORKED AND LIE MORE!!
  • Don't be afraid of Republican lies. They lie because the facts are against them. Otherwise, they wouldn't have to lie. Don't be afraid to call out the Republicans on the their lies and don't be afraid to answer their lies with the facts. Just learn to make the facts understandable. Say it over and over and people will get it.
  • I promise I'll vote for you if you support health care. I know I'll regret this, but I mean it. I dislike both my senators (Specter and Casey) immensely. But I'll vote for them in the primary and general elections if they can deliver on health care. Screw this up, and I'll vote for Felix the Cat first. This is especially true for you, Bob Casey, if you get sucked into the anti-abortion mess.
  • The Senate bill is imperfect but it is still better than nothing. I'd be happy to see the public option in there. Hell, I'd like to see a single payer system, but I know it can't happen in the US. But since you can't make a perfect bill now, this will do. You can make the system better in the future, even without a single payer system, and maybe without a public option.
  • Don't be afraid to use the budget reconciliation process. The Republicans used it to pass their tax cuts for the wealthy. You can use it, too. Make the Senate bill better with it. The fact that Republicans are yelling (and lying) so hard about it tells me they're scared. GO FOR IT.
  • Don't worry about Republican hand wringing over the deficit. Instead, counterattack. It was Republicans who ran up the deficit with unwise tax cuts and two unfunded wars. They were the ones that created the economic mess we're in with their opposition to effective regulation of Wall Street. Economists will tell you that the deficit is not out of control, especially because interest rates are so low. Answer Republican lies with the facts.
  • Health care reform is good for the economy. From reducing lost wages to reducing illness-related bankruptcies, better and more affordable health care is good for the economy. More affordable health care means more small business start-ups. Small business almost always fuels economic recoveries.
  • Don't be afraid of a Republican filibuster on this or any other bill. Make the Republicans do it. Let voters see the spectacle of them staying up all night holding up the work of the Senate.
  • Stop trying to get a bipartisan bill. In AA, they define insanity as doing the same thing over and over again and expecting different results. Get some sanity. The Republicans aren't going to help you.
And pass the damned bill!