No Stereotypes Here

Archive for the ‘studies’ Category

Not long ago, I heard about a survey being done by the Redpath Centre on the needs of Autistic Adults. Looking at the website, I see that the purpose of the survey is to gather materials in order to advocate for better services.  Curious and always willing to help out, I emailed them, and received this reply:

Thanks for your interest in the Adults Count! Survey which is being led by The Redpath Centre. We wanted to bring you up-to-date on the project.

The survey will launch later this month and will be available for completion until spring 2011. All surveys can be completed on-line unless you request a paper version. The information gathered will be used to understand the needs of adults living with Autism Spectrum Disorders in Ontario. It will take about 30 minutes to complete. There are three versions of the survey depending on who is completing it. It can be completed by:

(1) An individual 16 years old or older who has been diagnosed with an Autism Spectrum Disorder (i.e., “Autism”, “Autism Spectrum Disorder”, “High-Functioning Autism”, “High-functioning Pervasive Developmental Disorder”, “Pervasive Developmental Disorder, Not Otherwise Specified (NOS)” or “Asperger Disorder/Syndrome”) by a professional; OR

(2) A family member (e.g., sibling, parent) who is knowledgeable about the needs of a specific individual, 16 years old or older, diagnosed with an Autism Spectrum Disorder; OR

(3) A professional (e.g., group home worker, Adult Protective Service Worker, therapist) who is knowledgeable about the needs of a specific individual, 16 years old or older, diagnosed with an Autism Spectrum Disorder.
If you have not notified us already, please let us know what version you would like to complete.
We hope to have a large number of people complete the survey to ensure the results are as comprehensive as possible, so please forward this email to individuals who may be interested. They can express their interest by emailing us at: adult.survey@redpathcentre.ca.
Thanks again for your interest in this important project. If you have any questions do not hesitate to contact us.

Given the admirable goal of the survey, and the mission of the centre, I decided to pass this along for anyone who might be interested.

There has been a lot of going ons about the hearing of Dr. Andrew Wakefield and his general misconduct in his 1998 Lancet paper. You remember, the one that claimed to have found a connection between the MMR vaccine and Autism.

Now, a decade later, his findings are thoroughly discredited, and he’s been taken to task, not for his findings, but the way in which he conducted his research. It is very well likely that Wakefield will lose the official justification to put “Dr.” in front of his name over this. Not that this will stop his more …. loyal followers from doing so. But in the eyes of the academic and medical community, no. He is practically stripped from the title, the respect and authority as a medical professional in the unethical and callous methods of his research.

I’m not going to cover all the findings and the commentary about this. Although, Lizditz has done an excellent job, as usual, compiling a list of the commentary, news coverage and general blog-interaction, including the Lancet officially and completely retracting Wakefield’s infamous study.

And no, I’m not going to rehash what pretty much everyone who reads here already knows, that I thoroughly disagree with Wakefield. Period.

No, what I’m wondering about is the fact that Wakefield was approached, seemingly, by the lawyer of families convinced that the vaccine had caused their children’s autism, and looking for medical justification to take the vaccine companies to court.

Let’s just pause and think. Sure, Wakefield has a history of research targeting to slander the MMR, in the interests of promoting his own vaccine. Sure, he accepted the payment from the lawyer and conducted the research horribly. And yes, the fallout from his actions
1) decreased the vaccination rates, allowing measles, mumps and rubella to return, to sicken, to disable and even outright kill
2) poisoned a portion of the population to believe in scam treatments, costing families vast amounts of money and blindly following every charlatan in a desperate false hope to “fix” their “damaged” children , and
3) set back proper scientific research into proper accommodations and supports for autistic people

But, would Wakefield had been looking to connect the MMR to Autism if it wasn’t for those families?

I know, I know, it’ll be MEAN of me to blame the families for all of this. After all, they were (possibly still are) in the desperation that many families with autistic members experience today.

And in their desperation, I can imagine that they saw that what countless others have noticed, that the autism becomes apparent around the same time that the vaccine is administered. It’s the whole seeing causation in correlation thing, making connections that may not (and most likely don’t) exist. It’s what humans do, try to make sense of the world. I don’t want to count or even consider the many superstitions that humans have in place by following this try of reasoning.

However, for some reason, these families took their hunches, and decided to look for proof and decided to look for compensation. And that decision took their lawyers to Wakefield.

It could be a simple reason that there was, at that time, no information concerning a connection between vaccines and Autism. Or maybe that the information was not easily accessible, or in terms that was understandable. I remember 1998 and computers and the Internet weren’t exactly the commodity it is today (well, at least it wasn’t for our family).

But either case, these families felt that there was a case to be made in this, and looked for proof.

Now, I don’t know who’s idea it was to approach Wakefield, pay him to conduct a study with some brutal and unnecessary tests on their children, and basically manufacture favourable results. I don’t know whether it was the lawyer, or one or many of the parents.

But SHAME on them.

It is that person that I personally consider to be the most responsible for the fallout that has happened from Wakefield’s now-fully-retracted study. Yes, that means I consider them partially responsible for the Jenny McCarthy Body Count, for the unsafe, scientifically unproven quack treatments that cause undue suffering of autistic individuals, and for all manner of emotional and mental stresses that this causes autistic families, including those that can drive parents to murder their autistic children because of a lack of support.

With the misery that has been caused as a result of that person, the decision of the parents and lawyers, and the actions of Wakefield, who really has benefited? What good has come from all of these? Other than the resounding evidence proving Wakefield wrong, I don’t think that the autistic community has gained very much. In fact, I don’t think that the human population has gained at all, given the increase in completely preventable diseases.

Has those families who originally approached Wakefield really benefited from this, and has any of them even considered themselves to be partially responsible for the fallout?

In closing, while I do think that it’s proper that Wakefield to bear responsibility for the part that he played, I think that he is not the only one to bear full responsibility for the crime that has been committed against the autistic community. I’m in no position to actually say who all needs to bear responsibility for this, but I think that it is something to be considered.

After all, one can only be responsible for one’s own actions.

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Before I start, if you haven’t checked out the Asperger Women Association’s latest internet radio show episode “Autism and Changing the Language with Michael Buckholtz” then I suggest you do so now. It is an excellent discussion on the word “disability” when referring to autism, and how to go about to make a positive influence.

Onwards!

What has caught my attention was the release of a study on autism and a couple of articles documenting and commenting about it. From the Times blogs comes a post about the National Autistic Society coming off the fence , as well as the actual news article about the study and the implications of the results. All very good, nice and dandy. Yay for the press.

Ah, but of course, we have the blogging sphere. Left Brain/Right Brain refers to an excellent post by Mike Stanton, that includes a more inside look and observation, including study links! Because facts are facts, and it’s starting to get harder to play neutral.

Now, as we’re all cheering, Socrates from the New Republic keeps us honest by being brutal and surprisingly refreshing in interpreting the study’s results. Because there’s always a different perspective on things.

Personally, I can’t help but notice the large gap in the mens and women’s prevalence rates. 1.8 for men, and 0.2 for women. I’m trying to figure out whether the new concepts of autism manifesting differently in women was factored in when they did the studies.

You can find the actual studies here and the report released here.

Anyways, the newspapers do a little rounding (or as I think, adding 1.8 and 0.2) and proclaim an autism prevalence of 2%, in adults as well as children. That we know of, I might add. While it’s a nice number, I’m thinking it’s probably higher, but that might just be me.

Either way, a 2% prevalence is larger that some categories of Myers-Briggs Personality Types.

(for the record, I’m ISFJ/INFJ/INFP. Primarily INFJ/P)



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  • Corina Becker: Hi Anonymous person who apparently doesn't feel like giving me a name to address, and thus hides behind anonymity!!! I never said the federal gov
  • Anonymous: I think that it is about time something is being done federally to help those with ASD to get much needed therapies for their disability and YES I do
  • Corina Becker: Hi Janine! Melody reads here? Awesome. I honestly had no idea she was aware of this blog.And thank you so much, I'm glad both of you like the bl

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