Archive | November, 2008

Why the Supreme Court matters to the autism community

4 Nov

Tuesday (which is today in some places already, tomorrow for others) is Election Day in the United States. One of the key powers of the U.S. President is the ability to nominate judges–including Supreme Court Justices.

Take a look at the biographies of the justices. In particular, take a look at their ages. and who nominated them:

John G. Roberts, Jr.. Born 1955. Nominated by President George W. Bush.

John Paul Stevens. Born 1920. Nominated by President Ford.

Antonin Scalia. Born 1936. Nominated by President Reagan.

Anthony M. Kennedy. Born 1936. Nominated by President Reagan.

David Hackett Souter. Born 1939. Nominated by President George H.W. Bush.

Clarence Thomas. Born 1948. Nominated by President Bush.

Ruth Bader Ginsburg. Born 1933. Nominated by President Clinton.

Stephen G. Breyer. Born 1938. Nominated by President Clinton.

Samuel Anthony Alito, Jr.. Born 1950. Nominated by President G.W. Bush.

The next President will be in office for 4 years, possibly 8. It is quite reasonable that he will be in a position to nominate a number of Supreme Court Justices.

Note that most of the current Justices were nominated by Republican Presidents. The only two nominated by a Democrat were Justices Ginsburg and Breyer.

If John McCain wins tomorrow, there is a non-zero chance that in 4 or 8 years, no Democrat nominated Justices will sit at the Bench. If Barack Obama wins, there is a reasonable chance that the balance of the Court might shift towards being more Democrat-nominated.

How does this impact the Autism community? Well, if you are like me, you see the struggles of the Autism community (and the disability community in general) as being focused largely on civil rights. Children have the civil right to an appropriate education. Children and adults have the civil right to a lifestyle with dignity, even though they may need more supports to achieve these goals.

I’ll let you search what the candidates have been saying, and doing, on civil rights issues during their careers and this campaign. But, take a look and consider how their views might impact a court you or a family member may be depending on.

That said, we can take a look at the issue of choice. Choice is often a codeword of abortion rights, as the landmark U.S. Supreme Court decision on abortion, Roe v. Wade, made use of the “right to choice”. It is one of the toughest questions facing America, and one I bring up with great trepidation as I really want to concentrate on the “right to choice” aspect.

The right to choice is not explicit in the U.S. Constitution. Because of this, it is not on the firmest of foundations.

How does this impact the Autism community? Here’s an example: much of the impact of California’s Mental Health Parity Act (AB88, which mandates coverage for certain conditions, including autism) has been reduced by the nature of the right to choice. Christopher Angelo, the attorney who pushed AB88 through the California legislature, noted in a lecture that he fought for greater implementation of AB88, even appealing to the California Supreme Court. The next step was the U.S. Supreme Court, but Mr. Angelo didn’t take his case there. Why? Because his case depended on the “right to choice” and he knew that the court was looking for a test case to define this right more clearly. Given the nature of the court, the likelihood of winning in the Supreme Court was far from assured.

In other words, the changes in the Supreme Court over the next administration could impact insurance coverage for people with autism.

In considering writing this post, it struck me that certain segments of the Autism community might also be impacted if the “right to choice” were to be diminished. Anyone who has looked at how the Supreme Court treated selective vaccination in the past would realize that people in the U.S. have far greater freedom of choice today than in the past.

But, that is a sidetrack. The main question is and will remain: how will future Supreme Courts decide on issues of civil rights for people with disabilities. It is worth considering closely.

Evidence of Autism in a Psychiatrically Hospitalized Sample

4 Nov

I’ve been meaning to write something on this for a while. This was a talk given at IMFAR this year (2008) by one of my favorite research groups–that of Prof. David Mandell. If you’ve listened in on IACC meetings you’ve heard him. Much more, if you have been watching the literature, you’ve likely seen his papers.

Prof. Mandell asks a lot of questions that I think are important and, all to often, overlooked. As an example, he has documented the late diagnoses of ASD’s in ethnic minorities in the United States.

One presentation at IMFAR that caught my eye was:

Evidence of Autism in a Psychiatrically Hospitalized Sample

The abstract is quoted below:

L. J. Lawer , Psychiatry, University of Pennsylvania, Philadelphia, PA
E. S. Brodkin , Psychiatry, University of Pennsylvania, Philadelphia, PA
D. S. Mandell , Psychiatry, University of Pennsylvania, Philadelphia, PA

Background: The similarity of the symptoms of ASD with other psychiatric disorders, and the fact that misdiagnosis may lead to inappropriate treatment, has led to interest in the prevalence of ASD in psychiatric populations. The four studies in this area have estimated the prevalence of ASD in adult psychiatric samples to be between 0.6% and 5.3%.

Objectives: To determine the potential prevalence of ASD among psychiatric inpatients and characteristics that discriminate between adults likely to have ASD and other psychiatric disorders.

Methods: The sample included 350 out of 396 patients in one state psychiatric hospital in Pennsylvania. Nursing staff completed the Social Responsiveness Scale (SRS) for each subject. Chart reviews were conducted to examine functioning and medical history. T-tests and chi-square tests were used to examine differences in clinical presentation, putative diagnoses, and medical history among patients scoring above 100 on the SRS (a score highly specific for autistic disorder in the general population) and patients scoring below 100.

Results: Twenty-one percent of patients received an SRS score over 100. They were significantly more likely than other patients to be diagnosed with undifferentiated schizophrenia (30% vs. 22%) and have indication in their charts of childhood onset or a “long history” of psychiatric problems (68% vs. 50%), not starting high school (20% vs. 8%), abnormal movements (20% vs. 10%), gastro-intestinal problems (34% vs. 23%), and mental retardation (15% vs. 5%). Analyses of differences in medication use and self-injurious behaviors are ongoing.

Conclusions:While not conclusive regarding the prevalence of ASD in a psychiatric inpatient sample, these findings are provocative and suggest the need for further research. We currently are conducting patient and family interviews to augment existing data. Improved diagnostic assessment for adults with ASD, especially those that discriminate ASD from the negative symptoms of schizophrenia, may have important treatment implications.

The majority of the overall population had schizophrenia diagnoses (80%), with personality disorder, substance abuse and mental retardation diagnoses also present.

The researchers had nurses test inpatients using the Social Responsiveness Scale (SRS), and found that a significant number (21%) of the inpatients scored in a range indicating an ASD.

3% of those with SRS scores >100 had an existing ASD diagnosis. Compare that to 1% of those with scores <100 on the SRS. But, you can see that with 21%, this inpatient population had a much higher autism rate than the roughly 1% expected for the general population.

Interestingly, there was a higher rate of GI problems in those with high SRS scores.

The ages? These are adults. Not just young adults, either. They ranged in age from 20-82, with an average of 49 (SD of 13) years.

Why is this important? There are many reasons. First, before this study was presented at IMFAR, the results were referenced by one of the world’s top-cited autism researchers, Nancy Minshew, in a news article.

The other phenomenon was that some autistic children were labeled as schizophrenic, and many may have ended up in state hospitals or other institutions, she said.

There is even a kind of logic to that, Dr. Minshew said, because some of the hallmarks of schizophrenia — behaving oddly, a lack of facial expressions, poor eye contact, speaking in a monotone and using fewer gestures than normal — are “essentially the same” in both autism and schizophrenia.

David Mandell, an epidemiologist at the University of Pennsylvania medical school, recently surveyed the adult patients in Norristown State Hospital in Eastern Pennsylvania, nearly all of whom are labeled schizophrenic, and found that about 20 percent of them meet the behavioral criteria for being autistic.

The response? Dr. Minshew was openly mocked by “advocates” who apparently couldn’t see past the fact that these results pose a challenge to the “epidemic”. Kim Stagliano, in a Huffington Post Piece, was annoyed that Dr. Minshew would say that in her experience there is “not an increase in the number of cases, but are an improvement in recognition.” On the age of autism blog, Ms. Stagliano went on to say,

Does your child, or do you (if you are an adult with autism) appear schizophrenic*? Has any doctor or therapist ever uttered the words schizophrenia and autism in the same sentence to you?

This declaration of Dr. Minshew’s is repulsive and offensive to all people with autism. All people with autism, regardless of what you think of cause or treatment.

Amongst the mistakes Ms. Stagliano makes in the above is asking the wrong question. The question is not “do people with autism appear schizophrenic”, but, rather, do people with schizophrenia (and other) deserve diagnoses have autism? Further, are these people misdiagnosed or do they deserve autism in addition to their other diagnoses?

Ms. Stagliano isn’t the only one to attack Dr. Minshew’s statements without thinking them through (Dr. Minshew’s statements made it clear that she was basing her statements on actual studies, not just her opinion). I’d like to point out that I didn’t bring Ms. Stagliano’s comments in as a mere sidetrack. Much as the comments annoyed me, they point to a more important, systematic problem: The “advocates” of the past 10 years have made a big mistake in concentrating solely on children with autism.

First and foremost, it is wrong to the allow fellow citizens to go without proper supports. This is especially true if (as noted in the talk) there is the possibility of de-institutionalizing these people. We must insure that these adults and those who will care for them have a proper understanding of the real issues each adult faces.

Second, it is just plain short-sighted. For parents of children with autism, autistic adults are the great untapped resource. We have much to learn, much that will help our children. It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

I don’t know a better way to emphasize this than to restate it: It is in our own self-interest to demand that adults with autism be identified so we can learn from their hard-fought lessons.

[note: I edited this piece for clarity and emphasis after posting. The substance was not changed]

Americans: make yourself heard

3 Nov

If the constant news barrage hasn’t driven it home to everyone yet, tomorrow is Election Day in the United States.

We’ve discussed the upcoming elections recently on this blog, especially since Senator McCain brought up autism in the final debate. This has been called historic. It likely is historic that disability issues have been so prominent in the debate and the discussion. I would venture to guess that Senator Obama’s policies on autism and disabilities in general are more thorough than has been seen before by a major candidate.

So, yes, get out and vote. That’s the obvious next step.

Then, take the less obvious step: email both candidates. Let them know what you like and don’t like about their platforms. Remind the winner of his team’s promises. But remember, there are three senators running. At least one will still be a Senator next year. Remind him/them of promises made. (should you be from Alaska and should Governor Palin remain Governor, let her know your thoughts as well.)

IDEA needs to be fully funded. That can’t be tied to earmarks, that can’t be tied to spending freezes. It is the right thing for the U.S. to do, regardless of circumstances. We as a country made a commitment, and we’ve never fulfilled it. Now is the time to change that.

Beyond IDEA, we have a commitment to all people with disabilities, of all ages. People have a right to a life with dignity.

Again, go out and vote. But, consider sending an extra message. Yes, it will be buried in the vast number of messages the winner (and his opponent) will get on election day.

The campaign websites have information on how to contact McCain/Palin and Obama/Biden. If can always reach Obama, McCain and Biden at their Senate offices as well.

Jenny McCarthy and the Holy War

2 Nov

Now I know some people don’t like this blog going after Jenny McCarthy. I understand why (giving air time to air heads seems silly) but I really do believe its important that what this woman says in the name of the autism community is checked, double checked and exposed to the cold light of day.

So – continuing the theme of what Ms McCarthy says at one point in time is not the same as what she says at another I want to present the results of my own Google Phd research.

Lets go back to September 2007 where Evan is recovered:

McCarthy claims that a radical diet, 100% free of gluten and casein, facilitated her son Evan’s recovery from autism….

However, also in September 2007, Evan’s ‘therapist’ describes him as in recovery:

I think Evan is in recovery,” says Sarah Clifford Scheflen, a speech-language pathologist at UCLA and Evan’s therapist since 2005. With autism, a neurological disorder that impairs ability to communicate and relate to others, “early intervention is huge,” Scheflen says, “and Evan received that.”

Fast forward to April 2008 and McCarthy describes Evan again as recovered.

We believe what helped Evan recover was…..

But then two months later Jenny says they will be chelating Evan:

A lot of people are scared to chelate, which is the process of pulling metals out of the body, but it has triggered many recoveries. … Everyone has their own recipe to recovery, but your child might need chelation to get there. With a DAN doctor, I mean these guys are so good, they will help, you know, make sure your child is safe, your child has the minerals it needs to do it. … I’m, of course, scared to do it with Evan, but I plan on doing it this summer because Evan still suffers from seizures……


Four months after that, under the headline ‘Jenny McCarthy: My Son No Longer Has Autism ‘ Jenny says:

Jenny McCarthy says she helped her son, Evan, recover from autism.??…

However, four days after that Evan McCarthy’s paediatrician Dr Jay Gordon described Evan thusly:

Jenny McCarthy’s son is doing better than he was before she started intervention. He is recovering from autism. That’s an ambiguous phrase but it’s the best I can do.

Its a bizarre mish-mash of cured/not cured recovered/recovering – where does the truth lie? Does it matter?

Yes, to me it does. This woman is selling books off the back of the autism community. Part of her marketing is that we all love her and are rah-rahing for her. Well I’m not. I’m not sure she’s lying but there is dishonesty of some kind going on here.

And lets go back to the story in People in September 2007. The first box out says:

“I don’t want to come across like a preacher,” says McCarthy….

And compare that with the story in USMagazine a year and a month later:

I made a deal with God,” she explains. “I said, ‘You fix my boy, you show me the way and I’ll teach the world how I did it.

Something has happened to Jenny McCarthy between September 2007 and October 2008. Something that has taken her from not wanting to come across like a preacher to making a deal with god to show her the way and she’ll teach the world how. Make no mistake – that is explicit religious terminology. She wants the world to think of her as someone who ‘knows the way’ and she can ‘show them’ that way. The comparisons with Christianity are both undeniable and frankly – disturbing.

Its obvious from hearing that thoughts of Evan’s paediatrician that Evan is not recovered or cured and yet Jenny McCarthy wants to ‘show us the way’? It sounds more to me that Ms McCarthy is becoming dangerously close to religious fervour.

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