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Autism and Vaccines: IACC and NVAC met on July 15

8 Aug

Do vaccines cause autism? That is a question which dominates much time (some would say too much time) on the Interagency Autism Coordinating Committee (IACC). The last full meeting (July 15) was partially devoted to the question, with a presentation by the National Vaccine Advisory Committee (NVAC).

I try to listen to as much of the IACC as I can. I figured this meeting would be a big one, with time devoted to the vaccine causation question and all.

But this time I just didn’t have the time. When I called in the vaccine presentation was already over. After the meeting I cringed waiting to hear the vaccine spin from certain groups. Oddly, the vaccines-cause-autism groups were silent on the issue. The only discussion I have read so far about the meeting involves the fact that the meeting ended early and some people weren’t able to make public comments (observations about this at the bottom of this post)

One reason I was interested in what NVAC had to say is that people like David Kirby have been cherry picking the NVAC statements and, through artful omissions, helping to keep the epidemic alive.

For anyone who doesn’t know: David Kirby wrote a book: Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. As time has gone on, the phrases “mercury in vaccines” and “epidemic” are just conveniently left out of Mr. Kirby’s blog posts. That doesn’t mean he has stopped supporting the epidemic notion. He has always had a sort of passive-aggressive approach to the epidemic. He’s just trying to “spark a national debate.” Well, that dodge doesn’t work with me.

Recently Mr. Kirby hasrelied on statements by the NVAC to make his case. In a recent blog post, he opened with:

It is not accurate for members of the media to report that the link between vaccines and autism has been “disproven.” This is especially true in light of recent news from the National Vaccine Advisory Committee – and a series of other news items from the Federal Court of Claims, Federal health agencies, leading universities and top autism researchers around the country.

Given this background, I was expecting the IACC/NVAC meeting to be full of talk about epidemics and mercury…at least from the post-meeting commentary.

Luckily, someone sent me the slides from the meeting.

So, with that long introduction, let’s look at the quotes NVAC used for their own discussion of vaccines and autism in the IACC meeting. Shall we?

“The NVAC also notes the public engagement process identified public concern (Appendix 2) related to thimerosal, particularly with respect to autism/ASD. The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.”

…a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to vaccination.

In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

(note, there are four more quotes on page 30, in the “additional slides” section)

I guess I shouldn’t be surprised no one from the vaccines-cause-autism groups was blogging this. It’s pretty clear that NVAC doesn’t support the idea of a vaccine caused epidemic of autism–either through thimerosal or some other means. Not something the vaccines-cause-autism crowd wants to advertise.

As long as we are here, it is worth noting that there was a lot more discussed in that meeting aside from vaccines.

There was a presentation about the Autism Centers of Excellence (ACE). These centers were created as large investments to build a long term autism research infrastructure.

There was discussion of the National Database for Autism Research (NDAR). This database is collecting all sorts of information (genetic, behavioral, diagnostic, etc.) for researchers to share. There was discussion about the cost to enter data into the database (about $5k per research project) and whether this would be an impediment to collecting information. Should NIH make separate small grants to cover the cost of data entry into NDAR? There was discussion comparing NDAR to IAN and whether these two databases could be linked. There was a suggestion that perhaps parents could add data to NDAR, not just researchers. (I’m skeptical that can be done well.) There was a very critical comment that NDAR has been “almost ready” to go for many years.

One very interesting part of the IACC meeting was the discussion of how autism research funding is spent. This was the basis for a blog post I made showing how research on autistic adults is getting a very small fraction of the total.

Most (if not all) of the blogging on this IACC meeting has focused on the end: the was time for public comments. I wish I had known this was going to become a subject of contention; I would have made some notes. As it is, my recollection is that 4 people wanted to give public comments: Jim Moody (attorney and member of SafeMinds), Ari Ne’eman (president of ASAN), and two families with autistic children.

The meeting ended early, and the only person present to make his public comment was Mr. Moody. They called for the other people to comment, but, as I said, they weren’t present.

This is now being played up as excluding families by rushing through the agenda. I was surprised that they ended so early, but I didn’t get the impression they were rushing though it. I also note that it wasn’t just families who didn’t get to speak, Mr. Ne’eman didn’t get his opportunity either.

What I haven’t read is anyone giving an actual solution to the problem of what happens if they finish the agenda early.

Here’s my suggestion: perhaps Dr. Della Hann*as Executive Secretary of the IACC could see that cell phone numbers are taken from the commenters. When it looks like the meeting is ending, someone could send those scheduled to comment a text message via email.

Who knows, there is probably some government rule that bars doing that. But this strikes me as an accommodation issue. Autistics, especially kids, may not be able to sit through the hours of the meeting waiting for their 5 minutes to make public comment.

*There is a misunderstanding being propagated on the blogs lately. For anyone interested, her surname is Hann, not Hamm.

IACC seeking input on the Strategic Plan

29 Jul

If you are interested in how the U.S. government pays for autism research, you should be following the Interagency Autism Coordinating Committee (IACC).  They are, well, coordinating the research efforts of the various U.S. government funding agencies.

A big piece of this effort is their “Strategic Plan”.  That is a document that outlines what research should be done, and gives a budget for the research projects.

The first version of the Plan is out, but it has to be updated every year.  So, here’s your chance to be heard: do you want more money spent on issues concerning adults with autism?  Do you want vaccine/autism research to be incorporated into the Plan?  Let them know.

We discussed research funding for autism recently.  Only about 5% of the total research expenditures in autism are going to understand issues specific to adults.  This is under the category “What does the future hold?”  Yes, that question does speak to parents of children with autism.  For the majority of autistics, the future is now.

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

It is time to call for more research into issues concerning adults.  It’s just wrong to have so little of the funding going into this very important area.

Whatever feedback you may want to give, you can do this through a web based form.

Here is the email I received:

Request for Information (RFI): Updating the Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder (ASD) Research

On behalf of the Interagency Autism Coordinating Committee (IACC), the Nation Institute of Mental Health is seeking comments to inform the annual update of the IACC Strategic Plan for Autism Spectrum Disorder (ASD) Research, as required by the Combating Autism Act of 2006 (P.L. 109-416).

The purpose of this RFI is to solicit input from ASD stakeholders to inform the next update of the Strategic Plan. In the RFI form, there will be an opportunity to provide input on each section of the IACC Strategic Plan. Please include suggestions regarding missing or underrepresented knowledge areas, new opportunities needed for advancing research and knowledge about ASD, and suggestions for prioritizing research objectives.

The RFI will close on August 21, 2009.

Responses must be submitted electronically via the web-based form.

Background:

The IACC was established as a result of The Combating Autism Act.  The act requires that the IACC develop a strategic plan for autism research and update the strategic plan annually. The IACC is composed of both Federal and public members.  The first IACC Strategic Plan for ASD Research was developed through an extensive process engaging a wide range of Federal agencies and public stakeholders.  The Strategic Plan is organized around six questions that are important for people with ASD and their families:

I. When should I be concerned?

II. How can I understand what is happening?

III. What caused this to happen and can this be prevented?

IV. Which treatments and interventions will help?

V. Where can I turn for services?

VI. What does the future hold?

Please Note: The responses that you provide will become part of the public record.  You have the option of posting your responses anonymously or you may choose to have your name associated with your response. In your responses, please do not include personally identifiable information that you do not wish to make public.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

Contact Information:

Attention: RFI on Updating the Strategic Plan for ASD Research
Office of Autism Research Coordination
Office of the Director
National Institute of Mental Health
6001 Executive Boulevard, Room 8235, MSC 9669
Bethesda, MD 20892-9669
Email: iacc@mail.nih.gov

IACC services subcommittee meeting tomorrow

23 Jul

The services subcommittee doesn’t get the blogging attention as the full committee meeting. No chance for a discussion of “epidemics” or vaccines. It is well worth the time to listen in, for whatever time you can, to see how this process works. Even more, it is well worth being informed so that you can get involved.

I just got this via email:

A Town Hall Meeting of the Interagency Autism Coordinating Committee (IACC) Services Subcommittee

A Town Hall meeting of the IACC Services Subcommittee will take place on Friday, July 24, 2009 from 10:45 a.m. to 2:00 p.m. CT at the 2009 Autism Society National Conference

Pheasant Run Resort and Spa
4051 East Main Street
St. Charles, IL 60174

The meeting will be open to the public, with attendance limited to space available in the main room and overflow room. The meeting  will begin with a 30 minute presentation by members of the IACC, followed by an open microphone session in which comments may be shared on topics related to services for people with ASD. Topics of particular interest include: Questions 5 and 6 of the IACC Strategic Plan for ASD Research: “Where can I turn for services?” and “What does the future hold?” Additional suggested topics: Services for adults, community issues, family support, school services, provider services, infrastructure, evidence-based services and supports, health and safety, early diagnosis, transition to adulthood, therapies and treatments, and health and dental care.

The latest information about the meeting, including online registration and remote access can be found at: http://iacc.hhs.gov/events/2009/services-subcommittee-town-hall-mtg-announcement-July24.shtml. The meeting flyer can also be found on the IACC events web page.

Remote participation: Written comments on ASD services issues are welcome in advance, during and after the meeting until July 31, 2009 at: iaccservices@mail.nih.gov. Written comments received before or during the meeting may be shared with the audience by the moderators as time permits.

For more information about the IACC, please visit www.iacc.hhs.gov.

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

The Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8200
Rockville, MD 20852
Phone: 301-443-6040
IACCServices@mail.nih.gov

Autism research funding: who is paying and how much?

21 Jul

Ever wonder who is funding autism research and where the money is being spent? If you were watching/listening to the IACC meeting this week, you would have answers to a lot of these questions.

To answer the most basic question, the current annual expenditure on autism research in the U.S. is $225,000,000.

Most of us assume (and we are right) that in the US, the Government is the biggest source of research funding. But as it turns out, fully 35% of the research funding for autism in the U.S. is from private sources. That works out to over $78M in autism research funding is from private sources. Pretty impressive.

Anyone want to venture a guess as to who is the largest private source? Autism Speaks would be a good guess. It was mine. A.S. is a respectable second with $31M, but the number one private source of autism funding is the Simons Foundation, with $43M per year.

In case you want to see the entire breakdown of funding sources, here it is:

Autism Funding by Agency

Autism Funding by Agency

So, now we know where the money is coming from. The next question is “where is it going?” There are pages of detailed information on that in the research portfolio discussed at the IACC, but let’s take the summary view. In specific, NIH collated the research by category. They used the categories from the Strategic Plan:

I. When Should I Be Concerned?
II. How Can I Understand What Is Happening?
III. What Caused This To Happen And Can This Be Prevented?
IV. Which Treatments And Interventions Will Help?
V. Where Can I Turn For Services?
VI. What Does The Future Hold?

All of these categories are important and each of us will have a different view on the priorities. The issues I want to see get more funding involve figuring out how best to support autistics. In order to do so, I feel the research community has to fill a big gap in their knowledge when it comes to adult autistics.

Or, to put it in Strategic Plan categories, I think category V (where can I turn for services) and, mostly, VI (What does the future hold) need more attention and funding. As autism research funding grows, we should be expanding funding in these areas.

How is funding divided now? Well, here’s a pie chart:

Pie chart showing how autism research funding is distributed.

Pie chart showing how autism research funding is distributed.

Obviously the funding agencies don’t agree with me on priorities. Category V gets 1% of the funding, and category VI gets 5%.

Let’s put this another way: there are by some estimates roughly 1.5M autistics in the U.S. (I know that’s debated, but let’s go with it for a rough estimate). We are spending about $9M on understanding adults with autism. Roughly, $6 per autistic. Does that make sense?

Or, to put it another way, we have 300M people in the U.S.. Each of us is spending, what, $0.005 (one-half cent) a year on studying adults with autism? Surely we can do better than that.

It is worth stopping for a moment to acknowledge that the Strategic Plan is just getting started. The funding levels shown in the pie chart are going to change as the Plan is implemented. But, will research on adults be given high priority?

There are a lot of blog posts and news stories lately talking about how we as a society are not prepared for the “tidal wave” of autistics about to become adults. If that is your position, why not call for better research on adults? Why not call for the sorts of papers that will help you and your soon-to-be-adult children advocate for better services?

A vaccinated vs unvaccinated study

6 Jun

For as long as I can recall, this has been one of the clarion calls of the autism/antivaccine/pro-disease groups – that the only way to know if vaccines cause autism is to do a ‘simple’ study of vaccinated vs unvaccinated populations. Indeed, Generation Rescue carried out an ill-fated phone survey that in reality meant absolutely nothing so badly was it put together and carried out. But even if it _had_ been well designed and carried out the results were not good for pro-disease anti-vaccine autism believers:

Number of boys and girls with Aspergers
Unvaccinated: 1% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 2%

Conclusion: you are 1% more likely to have Aspergers if you have been partially vaccinated than unvaccinated. If you are fully vaccinated your chance of being Aspergers is no greater than if you were unvaccinated.

Number of boys and girls with PDDNOS
Unvaccinated: 2% of total
Partially vaccinated: 2% of total
Fully vaccinated: 1%
Fully and Partially combined: 1%

Conclusion: you are 1% more likely to have PDDNOS if you are unvaccinated. If you are fully vaccinated your chance of being PDDNOS is 1% less than if you were unvaccinated.

Number of boys and girls with Autism
Unvaccinated: 2% of total
Partially vaccinated: 4% of total
Fully vaccinated: 2%
Fully and Partially combined: 2%

Conclusion: you are 2% more likely to have autism if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is no greater than if you were unvaccinated.

Number of boys and girls with all ASD’s
Unvaccinated: 4% of total
Partially vaccinated: 6% of total
Fully vaccinated: 3%
Fully and Partially combined: 3%

Conclusion: you are 2% more likely to have an ASD if you have been partially vaccinated. If you are fully vaccinated your chance of being autistic is 1% less than if you were unvaccinated.

Overall conclusion: the best way to avoid being diagnosed with an ASD is to be fully vaccinated according to the CDC schedule.

And in September of last year, you may recall the announcement of yet another study that demonstrated there was no link between MMR and autism. During the press conference that launched that study David Kirby asked the lead author – Ian Lipkin – what his thoughts were about a vaccinated vs unvaccinated study. His answer was:

http://webjay.org/flash/dark_player

Very difficult if not impossible.

Given that, the US NVAC vaccine safety group released a draft of their latest thinking on the issue of vaccine safety which touched on the idea of doing this sort of study. The entire section related to this is quoted in full below:

Feasibility study of Vaccinated/Unvaccinated/Alternatively Vaccinated Children

Members of the public, stakeholders, and the Interagency Autism Coordinating Committee (IACC) have articulated interest in a study of vaccinated vs. unvaccinated children to determine if there are differences in health outcomes between groups with varying exposures to vaccines. The Working Group considered drafting a recommendation for an IOM review of the science, epidemiology and feasibility of studies of unvaccinated, vaccine delayed, and vaccinated children. The Writing Group Draft Document on Gaps in Research Agenda further developed this idea. The Working Group wishes to clarify several points on this topic. *First, the Working Group believes that the strongest study design, a randomized clinical trial that includes a study arm receiving no vaccine or vaccine not given in accord with the current recommended schedule, is not ethical, would not pass IRB review, and cannot be done*. The type of study that is being suggested would be an observational study of populations looking at natural variation in vaccination schedules including some children where vaccination is declined through parental intent. All children in the study should be recommended to receive the standard immunization schedule. The Working Group endorses the Writing Group’s recommendation for an external expert committee, such as the Institute of Medicine, with broad methodological, design, and ethical expertise to consider “strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs to examine outcomes in unvaccinated, vaccine delayed and vaccinated children and report back to the NVAC.”

The Working Group does not necessarily agree with all of the language in the Writing Group’s statement, but with its general intent. The process should be open and transparent, engaging individuals from a broad range of sectors. Considerations as outlined by the Writing Group and modified by the Working Group are as follows:

– This review should consider strengths and weaknesses, ethical issues and feasibility including timelines and cost of various study designs and report back to the NVAC

– Consideration should be given to broad biomedical research including laboratory studies, and animal studies.

– Consideration should also be given to study designs comparing children vaccinated by the standard immunization schedule with unvaccinated children (by parental intention), and possibly partially vaccinated children or children vaccinated by alternative immunization schedules

– Outcomes to assess include biomarkers of immunity and metabolic dysfunction, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and other developmental disabilities such as epilepsy, intellectual disability and learning disabilities.

– The inclusion of autism as an outcome is desired. This review should also consider what impact the inclusion of Autism Spectrum Disorders (ASD) as an outcome would have on study designs and feasibility, as referenced in the IACC letter to NVAC.

– This review should be conducted expeditiously, in a transparent manner, and involving broad public and stakeholder input.

So, as per a straight ‘vaccinated vs unvaccinated’ study, Ian Lipkin and NVAC Working Group agree that it can’t be done in the most scientifically accurate way and even if it could, it wouldn’t be ethical due to the requirement of excluding children from vaccination.

What they are saying is that a group like the IOM therefore should write up a feasibility study as to how such a study _could_ be done. Without this, its extremely unlikely that a vax vs unvax study will ever fly.

Amusingly, the way that the NVAC Working Group words a possible solution – vaccinated vs unvaccinated via parental choice – sounds pretty much like the Generation Rescue phone survey. And we know how that ended up.

Autism Progresses in Parliament

28 May

A few weeks ago I attended the Northern Regional Forum of the National Autistic Society. The general feeling was that all those working around the private member’s bill on Autism then before Parliament had done a fantastic job. The government was talking to us and, more importantly, listening to us. The Bill of course would never become law but we could expect signficant concessions from the government in exchange for the Bill being dropped.

Instead the government proposed to delete the existing clauses in th eBill and replace them with amendments of its own covering

  • Transition Planning
  • Diagnosis
  • Identification and Assessment
  • Provision of Services
  • Training of Professionals
  • Local Authority/PCT Leadership

These amendments were acceptable to the Bill’s supporters and it will now progress through Parliament with government support. It is thus more closely focused on adult proivision. Provisions relating to children, including diagnosis, data collection and planning services will be enacted via regulations and guidance issued by the government a part of its Children and Young People’s Plan.

There is still a lot of work to be done. The government consultation that I wrote about last month is continuing and it is even more important now for people to respond.

Meanwhile, another private member’s bill from John Bercow on special educational needs that only came 19th out of 20 in a poll of MPs has failed to become law but the government has given assurances that it is making progress on meeting the commitments outlined in the Bill. The NAs was again involved in drafting the Bill and lobbying for its support.

the National Autism Society, which had worked with Bercow on the Bill, said it was satisfied that the Bill had achieved some success.

NAS policy manager Beth Reid said: “This Bill has helped to raise the profile of many important issues facing SEN children. It has put increased focus on making sure the right measures are in place to ensure they are support properly.”

However, Reid said more work was needed to bring down the high number of SEN children [whch contains a disproportionate number of autistic children] excluded from school, something Bercow’s Bill had sought to address.

This is important work. These are not grandiose schemes for combating autism, defeating autism or ramping up research efforts into possible causes and cures. But they are honest attempts to improve the lives of autistic children and adults. The NAS and its allies will continue to monitor the government response to ensure that its deeds do in fact match up to the commitments it has made in response to our campaigning.

Why Generation Rescue shouldn’t be on the IACC

27 May

I have been very critical of the lobbying efforts of Generation Rescue. I have found their actions to be far from helpful in the struggle to obtain quality research for people with autism. One issue I haven’t covered is the fact that Generation Rescue has been lobbying hard for a seat on the Interagency Autism Coordinating Committee (IACC).

The IACC, as you might guess, coordinates research efforts amongst various government agencies. They do this by creating a “strategic plan” which puts forth initiatives that should be funded. For example, one “short term goal” listed on the Strategic Plan is:

Launch at least two studies to assess and characterize variation in adults living with ASD (e.g., social and daily functioning, demographic, medical and legal status) by 2011. IACC Recommended Budget: $5,000,000 over 3 years.

We need a lot more research like that if we are to serve our existing adult population and prepare for the kids of today to transition into adulthood.

This sort of research, oddly enough, isn’t supported by many of the autism advocacy organizations. Instead, they see the IACC as a pathway to their singular goal: recognition of the supposed link between vaccines and autism.

The fact of the matter is simple–Generation Rescue should not hold a seat on the IACC. The reasons are simple, and are below:

1) Generation Rescue’s position is already represented on the IACC.

I have never heard any complaints from the Generation Rescue team about Lyn Redwood. Lyn Redwood represents, quite vocally mind you, the “autism is caused by vaccines” segment of the community. She pretty much dominates much of the discussion, steering it towards vaccines as much as possible.

Ms. Redwood is ably assisted in steering all discussions towards vaccines in one of the working groups by Mark Blaxill. Again, I have never heard anyone from Generation Rescue say, “Dang, that Mark Blaxill just doesn’t get our point of view!”

So, if the Generation Rescue position is already represented, why give GR an official position?

2) Just because there are multiple organizations, doesn’t mean that the IACC has to include them all.

Besides their position on vaccines, what do Generation Rescue, Safe Minds, TACA and the National Autism Association have in common?

You can’t join them and vote for their leadership.

I just see these as different faces to the same overall autism group. Actually, I see them as mostly vaccine oriented advocacy groups, not autism advocacy groups, but the point is the same: why give each of these groups their own seat on the IACC.

Think for a moment—why should a few people be allowed to create an “organization” and ask for separate representation? If each subgroup wants to have control over their own budgets and give each member big titles, that’s just fine. But, when it comes to representation on a government body, why should every faction of what is, really, one big vaccines-cause-autism group be given a seat at the table?

Yes, this is much like item (1)—all of these groups already have their opinions represented by Lyn Redwood. There is no need or value in giving them more seats on the IACC.

3) This would lead to even more wasted time.

The IACC is a group that has very limited time to work on a research plan. Work being the operative word. Already, a LOT of time is taken up carefully crafting each and every phrase that might give credence to the vaccines-cause-autism story.

Imagine now if even more time were taken up in these discussions. Please, no. There is a great deal of expertise represented by the scientists on the IACC. We as taxpayers and as members of the greater autism community deserve to benefit from their expertise. We don’t need to hear twice as much (or more) vaccine-oriented discussions.

4) Generation Rescue has clearly demonstrated itself to be anti-science.

Generation Rescue’s recent “study” on vaccines and health outcomes around the world was, in a word, dishonest. The fact that they would promote such a manipulation of facts should disqualify them from sitting on a research based committee.

They either don’t understand research, or they are willing to misuse “research” to promote a political agenda. Either way, I don’t see why good researchers in the field should have to share a committee with Generation Rescue. Moreover, I really don’t see how Generation Rescue can lead the way in directing autism research given their demonstrated lack of understanding of the principles of research.

5) They don’t want their voice heard, they want to be able to outvote the scientists.

As noted above, Generation Rescue’s positions are very clearly communicated on the IACC already by Ms. Redwood. What Generation Rescue wants is a large enough voting block to outvote the scientists on the committee.

Read that again—they want to outvote scientists on a committee designed to coordinate research.

Sorry, you don’t vote down science.

And, once again, why should all the different heads of the same beast (TACA/Generation Rescue/SafeMinds/NAA) be treated as separate entities?

6) They are rude.

The culture of Generation Rescue is not one of working as a team with others. You either agree with their position, or people shout “BullShit” loudly at you.

Yes, there is already rude behavior on the IACC. Mark Blaxill, for one, has spent considerable amounts of time calling anyone who disagrees with his untenable position on mercury “Epidemic Denialists”. We don’t need more of that, and Generation Rescue goes well past that level on the impoliteness scale.

Sorry, I just can’t find any advantage to having Generation Rescue represented on the IACC. I can see a LOT of disadvantages, though

You are neurodiverse….

23 May

We don’t all think the same way. We just don’t. There is a “diversity” in our thought processes. Our neurology.

So, I find it interesting when people talk about “those neurodiverse” or in some other way try to make it an “us vs. them” subject. As Jake and Elwood said,

Some things that make us all the same. You, me them, everybody, everybody.

In this case, it is our differences that make us the same. Everybody is neurodiverse. Everybody’s mind thinks just a little different from anyone else’s on this planet. And, that is what makes us all neurodiverse.

The problem comes up when we move from “Neurodiverse” to the “Neurodiverisity movement”.

As Kev notes in his recent post, there is no organization or official position on what is Neurodiveristy. But I think the basic idea is clear:

Just as there is a diversity amongst people by gender, race, ethnicity, and culture, to name but a few ways we vary as a people–just as there are those diversity categories, we also vary by neurology.

And, just as we need to respect each other even though we come from diverse gender, racial, ethnic, cultural, and other backgrounds, we need to respect each other even though we think in different ways.

That’s not so hard a concept, is it?

The analogy to other diversity movements is very clear. For example, no one way of thinking is better than any other.

This is where many people get confused. They say, “Neurodiversity proponents don’t see autism as a disability”. When one says, “no one way of thinking is better than any other”, that is a far cry from saying, “no one way of thinking makes life easier than any other”. The question is, if life is made easier for you because of your neurology, does that make you “normal”? More importantly, if your neurology makes your life easier, doesn’t that give you the responsibility to help out those who may need a hand?

The thing is, neurodiversity is about human rights. The question isn’t, “Do you believe in neurodiveristy”, but, rather, “How can you not believe in neurodiversity”.

Autism community need to learn lesson

22 May

As is accepted by most rational people, autism is a largely genetic difference, albeit with a likely environmental component. Over the last 10 years or so a seemingly increasingly irrational desire to blame vaccines for causing autism has been coupled with a similarly irrational ‘cure at all cost’ mentality. The subsequent parent driven engine has resulted in autistic kids being exposed to shysters, snake oil salesman and out and out quacks selling their own version on dangerous exploitation.

However, in a revealing picture of what the ‘cure at all cost’ mentality might be doing not only to autistic people but to the human race in general we could do no worse than to look at recent discoveries in another genetic based difference – Down Syndrome:

A gene that’s present in the extra chromosome people with Down syndrome protects this population from getting many types of cancers, according to a study published in the journal Nature Wednesday.

…..

The answer lies in a gene called Dscr1, which is one of the genes present in Down syndrome causing chromosome 21. Since people with Down syndrome have an extra copy of this chromosome, they also have an extra copy of Dscr1. Researchers studied the gene in mice with human cells and found that it limits the growth of blood vessels that tumors feed on.

All the years that people with Down Syndrome have taken abuse, been put down and – most ironically of all – had pre-natal testing performed that has resulted in a drop of Down’s babies. And now it seems they might hold the key to destroying at least some forms of cancer. Imagine if we only found that out after the last Down’s adult had died?

Imagine what we might find out if we start looking at research that works _with_ autistic people. Imagine what we might lose if we decide to plow ahead with a ‘cure at all cost’ mentality.

Autistic boy killed with ‘chemical cosh’

21 May

Disability Scoop reports today on the awful story of an autistic child killed at a group home:

Denis Maltez, who had autism, died in 2007 at age 12 after being restrained by staff members employed by the group home where he lived in Miami. An autopsy determined that he was experiencing serotonin syndrome, a condition where the body produces too much serotonin, the chemical that regulates a person’s mood. The syndrome can be caused by a combination of psychiatric medications.

….

“This is a clear case of a 12-year-old child who perished because he was given a lethal combination of off-label, dangerous, anti-psychotic drugs to control his behavior without appropriate consent, administration and supervision,” said Howard Talenfeld, Quesada’s [the boy’s mother] attorney. “Tragically, this case is one of many cases where foster children and developmentally disabled children are given powerful drugs to control their behavior instead of utilizing appropriate behavioral interventions.”

With echoes of the inappropriate ‘care’ dolled out to Jesse Moores, this seems to me another example of a young person with special needs treated with scant thought or care. Its sickening that there seem to be so many of these stories on both sides of the Atlantic recently. I sincerely believe that there needs to be an _international_ coalition of voices – made up primarily of autistic people and their immediate families – to offer oversight on how autistic people are treated. This cannot be allowed to continue. Closing down homes, jailing perpetrators etc _after_ the fact is all well and good. We need something proactive not reactive.

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