Why doesn't every child have an IEP?

I was going to write a detailed post (rant) on this question, but on reflection I think the question speaks for itself....

tagged as: Autism, IEP, Special Needs, Education

A look at how journalist see, and cover, the thimerosol question

One of my favorite shows on National Public Radio is the WNYC produced On the Media, which covers how the media covers and treats the various news stories of the week. In this vein is an article from the Columbia Journalism Review, posted in its entirety at Ginger's Adventures in Autism, entitled Drug Test, by Daniel Schulman.

If you are at all interested in how/why the thimerosol issue is covered the way it is, you should read this article. If you're trying to find justification for either point of view, however, this is not the source you're looking for. While it does address the results and validity (or not) of various studies, this article itself passes no judgement either way.

The bottom line, at least what I got out of it, is that most reporters and news organizations are scared - yep, that's the right word - to even give space to the thimerosol question, much less report any supporting evidence in anything approaching a positive light.

A striking example from the recent news: As Pat Sullivan posted yesterday, USA Today had a story concerning the health benefits, and mercury risks, of eating fish. No where in the article is autism even mentioned.

Update: The article is also available on the Columbia Journalism Review site.

tagged as: Autism, Journalism, Thimerosol / Thimerosal

Vaccine-autism nexus denied (again)

The article Vaccine-autism nexus denied reports on the conclusions by the Cochrane Collaboration of a "scientific review of 31 select studies" into a connection between the MMR vaccine and autism (and other disorders):

'We found no evidence that giving MMR causes Crohn's disease and/or autism in the children that get the MMR,' said Tom Jefferson, one of the authors of The Cochrane review. 'That does not mean it doesn't cause it. It means we could find no evidence of it.'

The responses from the two sides were, as I think we have all come to expect, drawn along "party lines".

[PRO] At the same time, he said, 'We don't think there is any point in further investigating the association. ... The controversy should be put to bed.'

[CON] Many parents and advocates for children with autism have been reluctant to accept the conclusions of such studies, and advocates continue to call for more research.... 'It may be hard to prove that autism is caused by an injection, but all vaccinations have side effects, and the report can't ignore that,' said Debora Harris of the Elija Foundation, a nonprofit serving Long Island caregivers, parents and teachers of children with autism. 'I know a lot of parents who were holding their child in their arms a few days after the vaccination and seeing changes in their child.'

Obviously, the side that contends there is no link is happy with these results and will undoubtedly add it to their arsenal of justification. On the other hand, those who contend that there is a link will find ways to discredit this study, or the ones it is based on, and push for continued, valid research to find the link.

Barbara Loe Fisher, co-founder and president of the National Vaccine Information Center, probably says it best (as quoted in the story):

"This is not going to put the issue to rest," she said. "When the experience people have with vaccines is different from what the government and vaccine manufacturers are saying, you are not going to put this to rest."

It seems to me that there are two major challenges in, as Fisher puts it, putting this to rest - 1) designing a valid research program, and 2) implementing that program. I'm not sure which would be harder.

The Cochrane Review was imperfect / flawed (depending on which side you look at it from) in that it relied primarily on the results of epidemiological and retrospective studies and the comparison of the MMR vaccine with a single measles or rubella vaccine. The problem, as cited in the article, is the difficulty in finding a non-vaccinated control group for comparison. (Perhaps they could use the Amish?)

First things first: Has anyone developed a proposal for a research program that both sides could agree was a valid test of the connection between vaccines and autism? I've done a very cursory search, but haven't had time to really look into this.

UPDATE:

A story from US News and World Report on this research provides even more insight into how poor studies of vaccines are:

There's no credible evidence behind the theory that autism is triggered by the measles-mumps-rubella (MMR) vaccine, scientists have concluded after reviewing 31 studies, many of which they found flawed by unreliable reports of outcomes, incomplete descriptions of the children studied, and other sources of possible bias. And those were the good studies–the researchers tossed out almost 5,000 others with even more blatant defects.

But possible defects contaminated so much of the research that the authors end their report with a scolding for the medical research community, saying that studies were so sloppy they could barely prove MMR vaccines prevented their targeted diseases–although, they are quick to point out, the fact that mass immunization has coincided with mass elimination of these diseases in many, many countries makes it hard to argue that vaccines don't work.

The hypocrisy of the last sentence amazes me. What would the reaction be, I wonder, if the sentence were just slightly reworded:

The fact that mass immunization has coincided with mass increase of autism in many, many countries makes it hard to argue that vaccines don't cause it.

Sometimes, change is good

Change. If we are not in control of changes happening to us, change can be a frightening thing. Sometimes, our fears are realized. But sometimes change results in great things. And sometimes, whether we want it or not, ask for it or not, change is just "what the doctor ordered."

Following our recent move to St. Louis, things changed a lot (obviously). In addition to the obvious major changes, we've noticed numerous "minor" changes as we adapt to the new environment. Some of the biggest of these "minor" changes have been the result of the new school environments for our kids.

Tamar recently moved as well, in her case from CA to NJ. She has written an uplifting, yet somewhat tear-jerking, essay about the positive effects of changing schools for her autistic son.

tagged as: Autism, Change

Points on the spectrum

One of the biggest challenges in effectively treating any disorder is, of course, understanding the nature of the disorder. The challenges in treating autism are further exacerbated by the broad spectrum on which it presents. What works on one "end" of the spectrum may not work on the other.

Myomancy: Different Types of Autism: Complex and Essential pointed me to recent research (.pdf file) from Dr. Judith Miles and others at the University of Missouri (Columbia) Autism Center that defines two points on the spectrum - Complex Autism and Essential Autism. From the paper abstract [emphasis is mine]:

Heterogeneity within the autism diagnosis obscures the genetic basis of the disorder and impedes our ability to develop effective treatments. We found that by using two readily available tests, autism can be divided into two subgroups, ‘‘essential autism’’ and ‘‘complex autism,’’ with different outcomes and recurrence risks. Complex autism consists of individuals in whom there is evidence of some abnormality of early morphogenesis, manifested by either significant dysmorphology or microcephaly. The remainder have ‘‘essential autism.’’ Separating essential from complex autism should be the first diagnostic step for children with autism spectrum disorders as it allows better prognostication and counseling. Definition of more homogeneous populations should increase power of research analyses.

The paper goes into quite a bit of detail (including all the good statistical analysis ;-), and I'll be the first to admit I had to look up a few of the terms they use (my favorite - etiology), but it is very interesting reading. A lot to think about, and an extensive list of references to follow up with.

On a somewhat related note is Study: No vaccine, autism tie, a news story I found via Google News that discusses Dr. Miles' findings that there is no connection between vaccinations and autism in children (as I'm sure you gathered from the title of the story). According to the story, Dr. Miles is currently conducting research into the effects of thimerosol during pregnancy.

The study involved women with a certain condition who must receive Rh immune globulin shots during pregnancy. Those women are exposed to thimerosal since it is an ingredient in the injections they receive. "We conclude that there is no indication that pregnancies resulting in children with autism were more likely to be complicated by Rh immune globulin/thimerosal exposure," Miles said.

Update

The article in the Rocky Mountain News I mentioned above was a bit light on details and left me curious about Dr. Miles' actual research on the subject. While a quick Google search didn't turn up anything on that front, I found an overview of autism written by Dr. Miles on Gene Tests, a "publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons."

The overview is quite detailed, though it does give a broadbrush discussion of causes. All in all, though, worthwhile.

If you're in St. Louis next Tuesday...

... the St. Louis County Special School District is conducting an Autism / Asperger Resource Fair:

Experts from SSD and organizations from around the state will provide guidance and materials on autism and Asperger syndrome. The fair will run from 3:30 to 7 p.m. on Tuesday, Oct. 11 at SSD Central Administrative Offices in rooms 60 and 61, 12110 Clayton Road, Town & Country.

I'm not sure exactly what they'll have, but it sounds like it is worth checking out.

Support and services for autistic adults

Though it provides information specific to Massachussets, Students can 'age out' of special education provides a good general overview of the types of support and services available for autistic adults, as well as limitations to those services. As important, the article provides key advice for parents of autistic children approaching adulthood.

Some excerpts:

[S]pecial education for children is an entitlement program that provides services based on the child's needs. Cost cannot be used as a reason to deny special education services for children. In contrast, services for adults are based on funding that has been assigned by the state Legislature. Adult services are not automatically available. Multiple factors - such as the amount of money budgeted by the state, and the number of students turning 22 in a given year - affect the availability of services. (In some states, such as NJ, the financial status of the autistic person is also taken into account when determining eligibility for specific support and services.)

When a child approaches adulthood, long-term legal and financial planning should begin. In particular, parents need to consider whether full or partial guardianship is appropriate for their son or daughter. Also, each child should apply for federal benefits, such as Social Security. (It is important to keep in mind that, by default, when a child turns 18 years old they automatically become their own guardian. If you want to retain full or partial guardianship over your autistic child, you need to convince the courts that your child is not capable of being their own guardian.)

Parents should carefully consider the advisability of the student leaving school prior to age 22 because entitlement services end when the student leaves school. Moreover, the last two years in the school system can be invaluable, providing students with increased exposure to career development and work experience.

As with any kind of financial and future needs planning, it is probably never too early to start making a plan.

Tagged as: Autism, Special Needs Adults, Estate Planning

Helping each other "get it"

On my other blog I recently posted some thoughts on the book They just don't get it, a sort of business case-study of two "opposing" sides. Key to the resolution of the story in the book is the importance of seeing the question (and solution) from the "other" side. While reading the book, the neurodiversity vs. bio-med debate kept popping into my mind, especially with all the various back and forth lately.

If you've not already seen it, you really should visit Injecting Sense and read Semantics and Civility. Wade has put together an excellent synthesis of the many topics and ideas that have been floating around the past couple of weeks which I think goes a long way to helping frame this debate from all sides.

No one is right, no one is wrong, but there is a way ahead in which everyone comes out ahead.

Bringing out the big guns: MIT tackles autism

From MIT tackles autism | Science Blog:

With the help of a $7.5 million grant from the New York-based Simons Foundation founded by James and Marilyn Simons, MIT brain researchers are undertaking an ambitious multi-faceted approach to understanding the genetic, molecular and behavioral aspects of autism.

The projects are:

-Using new gene targeting, physiological and imaging techniques, the Sur team will develop tools for creating mouse and other animal models for autism and explore whether autism-related genes are involved in two key aspects of brain development and function in the cerebral cortex.

-Bear will look at mutations in the gene causing Fragile X syndrome, which shares similarities with autism. Bear's work indicates that by blocking a single brain chemical, many of the psychiatric and neurological disabilities associated with Fragile X and autism could be treated.

-Using state-of-the-art brain imaging techniques, Gabrieli will seek to understand how neurons play a role in autistic individuals' problems with social interaction and face recognition.

-Graybiel's team has cloned genes that may be related to autism or related disorders and will seek to understand the function of two molecules of a particular group. This information may lead to new mouse models.

-Sinha studies face processing ability in children with autism and is developing a methodology called VisTA (Visual Training and Assessment) to help them refine skills such as maintaining eye contact and reading facial expressions, body postures and gestures.

-Tonegawa's team will investigate the functional interaction between two genes that are implicated in both Fragile X syndrome and autism.