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Why should the strategic plan include vaccines…

14 Nov

…if all the vaccines-cause-autism advocacy organizations can’t ask for it?

I’ve been watching the process for the IACC fairly closely. You may have noticed my obsession. One issue that has come up is…you guessed it, vaccines. IACC meetings have been available to listen to by phone. (thank you NIH!) I’ve listened to long…long…long…speeches about the importance of research on vaccines and mercury. It’s had very broad support from…well…Lyn Redwood and Mark Blaxill. Pretty much silence from the rest of the IACC.

That said, I can’t say I am not surprised that an 11th hour attempt to change the process. Yes, according to a letter sent to members of the IACC, “we as a community community” are “united” expressing disapproval for for the Strategic Plan in the current form. This isn’t new. In person and in letters, members of these organization have co-opted my rights into an “autism community” that supports their vaccine/mercury agenda.

But, it’s worth taking a look at the letter. Alternatively, you could trust me to tell you what I found. Better yet, let me tell you what I didn’t find: vaccines. No mention of the word vaccines…or mercury…or thimerosal…or immunization…or epidemic. I seriously had to check that the search function was working as I read that document.

Why point this out? To jab a little fun at our good friends? No, there is a much more important message here:

Take a look at the organizations that signed this letter:

Autism New Jersey
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
SafeMinds
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

If they can’t agree on including “vaccine”, “mercury”, “epidemic” or any variation of those words—

WHY SHOULD THE IACC INCLUDE THOSE WORDS IN THE STRATEGIC PLAN????

Seriously, there has been a big push to get the IACC to make a strong statement on the vaccine issue. And yet, these words are missing from their own letter.

So, I’ll say it again: if Generation Rescue, SafeMinds and the rest can’t agree to put “vaccines” or “epidemic” in a letter, why should the IACC bow to their wishes and include these terms in the Strategic Plan?

Vocational Rehabilitation and Autistic Adults

13 Nov

I recently saw a paper in the Online First section of Journal of Autism and Developmental Disorders called “Use of Vocational Rehabilitative Services Among Adults with Autism“. I knew I had to read it. It comes from one of my favorite research groups, that of Prof. David Mandell. I’ve been carrying this paper around in my pocket for a month now. It is folded, tattered and filled with highlight marks.

The reason for the delay: how to condense this paper into a meaningful blog post without essentially copying the entire paper? As it stands, this will be a series of excerpts. The reason for blogging it: papers on issues directly related to adults with autism are few. This one looks at what I consider to be a very important question: training to get employment for adults with autism.

One other note: I will skip over the data analysis section. This will be a long post already, and I want to concentrate on the discussion of the results. But, rest assured, they did their due diligence and analyzed the data thoroughly.

So, even though this may not be the best presentation of the study, if I don’t do it now, it may never get done.

Here’s the abstract:

This study examined the experiences of individuals with autism spectrum disorders (ASD) in the US Vocational Rehabilitation System (VRS). Subjects included all 382,221 adults ages 18–65 served by this system whose cases were closed in 2005; 1,707 were diagnosed with ASD. Adults with ASD were more likely than adults with other impairments to be denied services because they were considered too severely disabled. Among those served, adults with ASD received the most expensive set of services. They and adults with MR were most likely to be competitively employed at case closure. Post hoc analyses suggest that their employment was highly associated with on-the-job supports. The results suggest the importance of the VRS in serving adults with ASD.

If you are interested, here is the first page (for free).

The paper points out that adults with ASD require considerable supports, with possibly only 15% achieving independence, and another 20% “functioning well in the presence of community based support.” This points out the great need for studies such as this one. We need a better understanding in order to improve the situation for the estimated 65% who are not independent or “functioning well”.

In the United States, the vocational rehabilitation system falls under the Department of Education, and helps with assessments, diagnosis, counseling, job search assistance, assistive technology and on-the-job training.

The outcomes include “Competitive employment”, which involves integrated settings (with supports as needed) and wages at or above the minimum required by law. Alternatively, Non-competitive employment can be paid below the minimum wage, and can include sheltered employment.

Results were compared for people with ASD, Mental Retardation, Specific Learning Disability (SLD) and Other Impairment Cause (OIC).

Individuals with ASD’s have “markedly different vocational needs than individuals with other developmental disabilities”. And “the small body of research in this area suggests that services provided through vocational rehabilitation programs are less than optimal for individuals with ASD.”

The authors stress, repeatedly, the value of employment. The concluding paragraph starts with the statement, “Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness.” The value of employment is also spelled out in an earlier section:

Our findings are also important in light of research indicating that supported
employment through vocational rehabilitation programs may improve cognitive performance of adults with ASD (Garcia-Villamisar and Hughes 2007) and generally improves quality of life (Garcia-Villamisar et al. 2002).

They found that at the end of VR training, 42.2% of those with ASD were competitively employed, whith 2.1% employed in a sheltered setting. The remaining (55.7%) were not employed. These results are better than those for the other groups. The numbers for those competitively employed were, 39.4% (mental retardation), 37.5% (SLD) and 35.1% (OIC).

They found that 4.3% of individuals with ASD had cases closed for having a disability “too severe to benefit from services”. Compare this to 2% for those with mental retardation, 0.4% for those with SLD, and 2.2% for those in other categories. So, people with ASD were more likeley to be denied services for this reason. They state that this “hints at the possibility” that “some people with ASD’s may never explore the use of VR services because they (or their families) do not see it as a viable option or are discouraged from seeking services.” This could affect the numbers found for those achieving competitive employment.

The costs were compared:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

The median costs? $2,380 (ASD), $2,160 (mental retardation), $1,108 (SLD), $1,280 (OIC).

So, yes, the numbers were higher for the ASD group. But even $2,160 per person to me sounds like a pretty darned good investment to get a sizable fraction of a group employed.

The authors noted:

VR expenditures were much higher for individuals with ASD than for those with other impairments except people with MR. This difference may be due to the additional needs of people with ASD (Muller et al. 2003). Alternatively, the VR system may not be structured to provide services to individuals with ASD in the most cost-efficient manner (Hillier et al. 2007). Both potential explanations beg for additional research on the most cost-effective strategies for achieving competitive employment.

There is a lot more valuable information in this paper. One thing that is missing is who funded the research. I’d love to hear that this is the sort of research NIH is sponsoring, and will continue to sponsor through the IACC process.

I’ve already quoted part of the conclusion. I think it worth quoting it in whole here:

Work is among the most valued social roles in our society. Many individuals with ASD can achieve successful employment outcomes, despite questions about access and cost-effectiveness. Individuals with autism and their families should seek out supports and employment; other support providers should emphasize employment as a possible social role; and policymakers should continue to examine ways in which they can enhance the variety and accessibility of supports for adults with autism, including vocational services, in order to ensure that they have opportunities to live and contribute in their communities.

ResearchBlogging.org
Lindsay Lawer, Eugene Brusilovskiy, Mark S. Salzer, David S. Mandell (2008). Use of Vocational Rehabilitative Services Among Adults with Autism Journal of Autism and Developmental Disorders DOI: 10.1007/s10803-008-0649-4

Autism Myths

11 Nov

It is my great pleasure to release my latest website – Autism Myths. Its not a blog, its more like a collection of blog posts on very specific subjects regarding autism.

Topics referenced so far are:

The IOM Are Afraid to Look At Susceptibility Groups
The Myth That Autistic Children Can’t Develop
The Myth of No Autistic Adults
The ‘Leaky Gut’ Hypothesis
The Myth of Overwhelming Immunity
Misleading Lab Reports
“Mrs Toast”
The Autism Epidemic
The Verstraten Paper
The Poling Concession
The Simpsonwood Conspiracy
The Amish Anomaly

Please use the contact page to send me comments and suggestions but if you do suggest stuff, please include a link to a blog entry that you think best dispels the myth in question. Please further note that the site is *not* just about vaccines, it is about all myths related to autism.

Dear Mr Obama

9 Nov

As a Brit, it really matters not one jot what I write to you, think of you or think of your policies. However, as we both know, it _does_ matter. Your soon-to-be-predecessor (and my goodness I am happy to write those words of Dubya) never understood why the opinion of the outside world mattered but you clearly do. And we in the outside world are rather keen on you.

I am very happy to note that your appointments indicated so far include Michael Strautmanis – father to an autistic child. As I understand it Mr Strautmanis very much favours an evidence based research approach to science. Good to know.

I was also amused to note that some think a certain Mr Kennedy may get an influential post. I suspect not. You don’t strike me a stupid man Mr Obama. Maybe some other portfolio needs filling? May I suggest Mr Kennedy becomes your drugs Cszar? I understand he has a good history in sniffing out drug issues.

Anyway, I was reading your Obama Statement in Support of World Autism Awareness Day and Awareness Month and I was both tut-tutting and nodding approvingly.

Tu-tutting as I read occasional talk of ‘epidemic’ and nodding approvingly as I read things like:

This effort will include diverse but credible research, treatment, personal care/assistance and family support…

and

Our nation and our world deserve an immediate and focused four-prong approach: research, intervention, life-long support, and an end to discrimination. As a result of the crisis, there is much debate as to the cause of autism and how to address it. What we need to do is devote ourselves to a solution built from a comprehensive plan that is research-based, inclusive, and effective.

Credible research….a plan that is research-based….very good to hear. I fear your recent competitor had no such plan but it is very good to hear of your commitment to a research-based plan.

Its also good to hear that you accept autism as a lifelong issue that requires intervention and an end to discrimination. Although this puts you at odds with the flat earthers who insist there is an autism epidemic which can be cured through non research based interventions (which obviously, they cannot back up) I think you have taken the right path and concentrated on the right issues – research based science that will offer a lifetime of evidence based interventions and care and result in an end to discrimination.

Glad you got in soon-to-be Mr President. I think you’ll do the real autism and autistic communities some real good.

Defeating Autism: A Damaging Delusion

7 Nov

Dr Mike Fitzpatrick’s new book ‘Defeating Autism: A Damaging Delusion‘ is now available (Amazon: UK, US, Canada). Just as I did for Paul Offit’s Autism’s False Prophets, I’ll give this a short review and a long review.

The short review: Holy shit, this book is good. Go buy it.

OK, so the long review. I got my copy when I was but a few ten’s of pages away from finishing Ben Goldacre’s Bad Science and try as I did I simply couldn’t resist putting Ben’s excellent book aside for the duration it would take me to read Mike’s book. Ben can rest easy in that it took me only a few absorbed and fascinated hours to read Mike’s book and I will thus be back with him shortly.

Mike starts with an overview of what is to come through the rest of the book – a subject delineated overview of the last ten years or so of attempts to defeat autism.

Mike’s son (who coincidentally is the same age as my own) is introduced and we hear of the abject lack of options given to parents in the early 90’s.

The clinic staff were all sympathetic and courteous, but they appeared to have no practical suggestions……We did not return.

It was at this time that Mike came into contact with two names, now steeped in the autism alt-med industry: Paul Shattock and Bernard Rimland. Shattock liked GF/CF and Rimland liked mega-dose vitamins together with anti-oxidants and _also_ the GF/CF diet. However:

I read the papers from Sunderland and San Diego with great interest……To say I was disappointed was an understatement. What immediately struck me about the writings of Shattock, Rimland and their colleagues was that, rather than indicating an innovate approach at the cutting edge of medical science, they revelaed a retreat into the byways and cul-de-sacs of the biological psychiatry of the 1960s and 1970s.

Then, later on, Mike discusses the beating heart of this book – the delusion itself:

I have become increasingly concerned at the damaging consequences of the quest to ‘defeat autism’. The movement that has advanced under this banner on both sides of the Atlantic seeks to redefine autism as an epidemic disease caused by vaccines or some other, as yet unidentified, environmental factor. Despite the lack of scientific support for this theory it has acquired the character of a dogmatic conviction for many who uphold it, in the face of all contradictory evidence.

Mike makes no bones about the fact that he considers (rightly so in my opinion) the quest to ‘defeat autism’ to be damaging on numerous levels. It is damaging financially to parents. It is damaging to relationships. It is damaging to children’s health. But most of all, it is damaging in the attitude that the crusade itself expresses towards autistic people. Mike, I am delighted to report, quotes extensively from Frank Klein and Jim Sinclair and makes nice mentions of Autism Hub bloggers at various times.

To me, this is an ‘autistic friendly’ book. Parents are not given any empowering pity just because they are parents and the voices and opinions of autistic people are given equal space to those who are not autistic. Mike does not try to pretend that everything is rosy in the garden of autism but he does most definitely portray the need to defeat autism as damaging. This is a must read for all parents and all people involved however peripherally in the field of autism.

Expert opinions on vaccines and mitochondrial disorders

7 Nov

ResearchBlogging.orgThe Hannah Poling case has raised many questions about vaccines and metabolic disorders (of which mitochondrial disorders is a subset). Which is a way of saying, yes, the paper we are about to discuss covers more than just mitochondria. But, would you have read this if you saw the title of the paper:


Attitudes regarding vaccination among practitioners of clinical biochemical genetics

But, don’t let that stop you. The paper takes a look at questions asked by many since the Hannah Poling case went public:

The issue of vaccination in patients with diagnosed—or undiagnosed—metabolic disease has been an important question for those of us who care for patients with inborn errors of metabolism, but has come to the fore recently as an item of general interest.

While it is acknowledged that there is a lack of hard data on many questions, the paper’s authors polled experts in the field with a series of questions about vaccines. For experts, they chose members of the Society for Inherited Metabolic Disorders (for which there were 379 email addresses: that gives us an idea of how specialized this field is). They received 111 responses. But, it is worth noting that they requested one response from each group, not individual, so they consider this to be a fairly complete response.

So, what do these experts think about vaccines and their patients with metabolic disease (mitochondrial or otherwise)?

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

One idea that has been floating around the autism blogosphere and discussion groups is that metabolic specialists prefer an alternate vaccine schedule. Well, only 21.3% said that they recommend the routine vaccination schedule, it is true. But, 73.1% use the routine schedule plus the annual influenza vaccination. 5.6% recommended a modified schedule. If you’ve been adding this up in your head, you already know that none indicated no vaccination.

Since this is such a key question, let’s repeat: over 90% use the recommended schedule or the recommended schedule plus the flu vaccine.

Similar trends were noted for live-virus vaccines:

45.7% recommending restriction of the practice for none of their metabolic disease patients
44.8% for a few
6.7% for most
2.9% for all of their patients

A big question that comes up often is “how many Hannah Polings are there?”, which in this community is a fairly narrow question of “how many people have had adverse reactions to vaccines resulting in autism or autistic-features”. The paper asks the more broad question, how many groups have seen a patient suffer “long-term deterioration or adverse outcome attributable to a vaccination:

78.3% ‘‘never”
8.5% ‘‘once”
12.3% ‘‘seldom”seen this in a patient

Again, this is not to say that autism or autistic features were seen, or that mitochondrial disease was the metabolic disorder linked in the deterioration. The group is more broad than that.

Now, the flip side of that coin: how many groups have seen long term deterioration from a vaccine preventable disease:

48.5% replied they had ‘‘never” seen this
12.1% ‘‘once”
33% ‘‘seldom”
3% ‘‘routinely”
3.0% ‘‘frequently seen this in a patient

Asked if whether ‘‘the benefits of the current vaccination schedule outweigh the risks to patients with undiagnosed metabolic disease in the general population,”

64.8% strongly agreed
27.8% agreed
4.6% disagreed or strongly disagreed

An open ended question was posed as to whether there were ‘‘reasonable health policy changes you would make regarding undiagnosed metabolic disease patients”. 43 groups responded, 29 said no, 4 said “no” or “not sure” and 1 suggested adding additional influenza and/or pneumococcal vaccine. A few stressed evaluation by IEM specialist in any case with deterioration after vaccination.

There is some more. All good stuff. But, I am at risk of basically copying the entire paper here if I add it.

If there is one thing to take away from this, it’s the concluding paragraph:

In summary, it is clear that the general opinion held by practitioners in the field of Clinical Biochemical Genetics favors the full schedule of vaccination for their patients. The overwhelming majority also feel that the benefits of the current schedule outweigh the risks to individuals with undiagnosed metabolic disease. Most have never observed any significant adverse event which was attributed to a vaccine reaction. Some respondents have seen the association once or seldom in their careers, but none felt it to be frequent. The fact that there were few encountered events of long-term deterioration due to a disease for which vaccination is available probably simply reflects the low incidence of those diseases, due to the effectiveness of vaccination practices. A panoply of questions remain, however, and there is a great need for more data.

B BARSHOP, M SUMMAR (2008). Attitudes regarding vaccination among practitioners of clinical biochemical genetics Molecular Genetics and Metabolism, 95 (1-2), 1-2 DOI: 10.1016/j.ymgme.2008.08.001

President Obama

5 Nov

CNN called the election the moment the last polls closed: Obama. Senator McCain just conceded.

I’ve linked to it before, but here it is again: The Obama/Biden position on disabilities.

They state on that page:

In addition to reclaiming America’s global leadership on this issue by becoming a signatory to — and having the Senate ratify — the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong supports and resources to Americans with disabilities. They are as follows:

First, provide Americans with disabilities with the educational opportunities they need to succeed.

Second, end discrimination and promote equal opportunity.

Third, increase the employment rate of workers with disabilities.

And fourth, support independent, community-based living for Americans with disabilities.

Here’s their statement on Autism.

This includes:

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts:
Fully Fund the Combating Autism Act and Federal Autism Research Initiatives
Support Special Needs Education for Children with ASD
Support Universal Screening

Those are commitments. Thank you for those commitments, President Elect Obama. (We will be here to remind you of them, should the need arise).

They have committed to fully fund IDEA. It is hard to think that decades of unfulfilled commitments might just come to an end.

I like this one:

Barack Obama and Joe Biden will also work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the support they need.

That gets rid of the ambiguity as to whether someone with PDD or Aspergers can qualify for services and supports.

President elect Obama obviously has put some thought into his disability and autism platforms, if he chose these key issues to support.

Work, independent living, education, equal opportunity…

It will be tough, even with the President on our side. President Obama will need our support and input.

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.

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