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Change and Hope

3 Jan

Change and Hope–the catch words of the Obama campaign.

You may recall that I was pretty hopeful of the change that Mr. Obama was promising to the disability community. We are only a few weeks away from the Inauguration and I thought it might be a good time to review some of the promises made during the campaign.

The Obama/Biden Disabilty Plan and Autism Plan were impressive for doing what most politicians run from: they make clear commitments.

Since we have commitments, it is definitely worth checking in on those commitments from time to time. Now is as good a time as any, as we prepare for the new administration to come to power.

Item number 1 on the Disability Plan is one I think every U.S. parent would welcome: fully fund the Individuals with Disabilities Education Act (IDEA). For any who might be aware, this law mandates special education in the U.S., and requires that the Federal Government fund 40% of the cost. While the law “requires” the Feds pay 40%, they’ve never come close. Truly, it is a disgrace that we as a nation could leave such a promise unfulfilled. I hope that Mr. Obama can make good on this commitment.

But, the Disability Plan is much larger than this one item. Let’s take a quick look at the headings–the outline, if you will– for the Obama/Biden Disability Plan. Let’s take a look and remember the commitments made. The actual document is about eight pages long, so the headings make a good summary for blogging.

I. PROVIDING AMERICANS WITH DISABILITIES EDUCATIONAL OPPORTUNITIES

Fully Funding the Individuals with Disabilities Education Act
Early Intervention for Children with Disabilities
Support Universal Screening
Support Vocational Rehabilitation Programs
Improving College Opportunities for High School Graduates with Disabilities
Make College More Affordable
Strengthen Community Colleges
Authorize a Comprehensive Study of Students with Disabilities and Transition to Work and Higher Education

II. ENDING DISCRIMINATION AND PROMOTING EQUALITY OF OPPORTUNITY FOR
PEOPLE WITH DISABILITIES

Restoring the Americans with Disabilities Act
Appointing Judges and Justices Who Respect Laws Designed to Protect People with Disabilities
Increasing Funding for Enforcement
Supporting the Genetic Information Nondiscrimination Act
Guaranteeing Health Care Coverage
Improving Mental Health Care

III. INCREASING EMPLOYMENT RATE OF WORKERS WITH DISABILITIES

Increasing Executive Branch Hiring of Workers with Disabilities
Effectively Implementing Section 503 of the Rehabilitation Act
Providing Private-Sector Employers with Resources to Accommodate Employees with Disabilities
Encouraging Private-Sector Employers to Use Existing Tax Benefits to Hire More Workers with Disabilities
Establishing a National Commission on People with Disabilities, Employment, and Social Security
Supporting Small Businesses Owned by People with Disabilities
Assuring Workers with Disabilities and Family Caregivers Get the Flexibility at Work They Need
Expand the Family and Medical Leave Act
Encourage States to Adopt Paid Leave
Mandate A Reasonable Amount of Paid Sick Leave
Protect Against Caregiver Discrimination

IV. SUPPORTING INDEPENDENT, COMMUNITY-BASED LIVING FOR AMERICANS WITH
DISABILITIES

Assuring the Rights Affirmed in Olmstead v. L.C.
Supporting the Community Choice Act and Direct Care Workers
Supporting the CLASS Act
Streamline the Social Security Approval Process
Protect Voting Rights
Amending the Medicare “Homebound” Rule
Investing in Assistive Technologies
Protecting the Safety of Individuals with Special Needs
Supporting Americans Living with Autism Spectrum Disorders
Strengthen VA Specialty Care

Again, remember that’s just the headings. The entire document is eight pages, and includes many concrete commitments. Much (very!) stronger than anything the McCain/Palin campaign had to offer.

One thing that impressed me greatly in the Disability Plan was the emphasis on adult issues. Yes, I realize that this is the general disabilities document and not the autism document, and that the Autism Plan might focus more on children, but it is clear from this document that the people advising Mr. Obama on disabilities were keenly aware of adult issues.

Take a quick look at the section from the Disabilities Plan on autism (it’s second to last in the headings). There is a good mix of adult and child issues represented:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both
children and adults with ASD.

We all will read that through our own perspectives on autism. For example, I bet some groups will key in on “neurobiological” and others will key in on “as diagnostic criteria broaden and awareness increases…” But, the above short blurb is much more concrete than anything I’ve seen from a politician in recent years. And…that’s just the short version. There is a full document on autism by itself.

It is important to remind ourselves from time to time of the commitments made by Mr. Obama. He is inheriting a very bad economy and a difficult war. It will be very easy for people with disabilities to slip through the cracks, yet again.

I hope that doesn’t happen.

I hope.

Hope was a big word for the Obama campaign. Hope is a huge word for families with disability. We are familiar with the roller coaster that hope can bring. Note that I said “familiar”. It is not a roller coaster one gets “used to” or “accustomed to”. Mr. Obama may be the one chance in my lifetime for real change in the lives of adults with disability. I really don’t want to see that hope crushed.

So, we will watch. We will offer input and monitor progress.

We will hope for change.

Thanks to CS for this comment which gave me the impetus to get this post out.

Well Harold, since you asked…

12 Dec

Over at his blog, Harold is fretting about the possibility of Autism Twitter Day really being a stealth-Neurodiversity attack:

What exactly does “positive” autism awareness mean? Is that concept consistent with “realistic” autism awareness?

Well, yeah. Look Harold, sooner or later you’re going to have to bite the bullet and accept the fact that a sizeable percentage of the autism community are interested in pursuing positive autism awareness. This means reflecting _one_ reality of autism – that there are positives to autism and they should be celebrated and that awareness of these positives is something that should be raised. This is reality. _One_ reality.

Another reality is that autism has its downsides too – we all live it, we all know that. Now, if Harold (or whomever) wants to do his own “negative” autism awareness day then – good luck to him. Personally, I’ve had enough of that but I recognise that it – just like the positive side of autism – is a reality. Harold goes on:

Still I can’t help but wonder when I see the adjective “positive” used to describe autism awareness whether it is an attempt to censor the discussion, to promote an unrealistic, feel good picture of autism

Yeah, damn that evil censoring positivity. Sometimes autism (take a deep breath Harold) _does_ feel good. It feels good to be involved in my childs life on many occasions. And as for censorship Harold, I’ve lost count of the number of times I’ve tried to comment on your blog only to note no comment has ever made it past your censorship. You, by contrast, continue to remain free to comment here.

Here’s the thing Harold. You don’t want there to be _any_ discussion of positivity in my opinion. You refuse to believe such a thing exists. You see autism = bad. End of story. The terrible truth Harold is that you are the censor. Anything that doesn’t contain a hefty dollop of misery isn’t ‘reality’ for you. Well, cool, whatever you like. However, please don’t try and dictate to everyone else – who clearly see that autism has many sides and many realities – what we should and should not talk about.

There are no positives to autism

1 Dec

Well you know – except when there are:

As Charlene Sawyer, a bespectacled young woman in jeans and pink Nikes, sings “Danny Boy,” they stand still. They don’t sip their beers or talk among themselves or puff on their cigarettes. They just listen.

Sawyer sings the old Irish ballad like they’ve never heard it before, delivering it in a spine-tingling, operatic style, her specialty.

When she finishes, the crowd fills the bar with applause. Sawyer grins and scoops up her orange notebook of sheet music. She knows she nailed it.

What most of the patrons in the bar don’t know is that Sawyer is autistic.

The Centre for Disabilities this young lady attends describes her as ‘an exceptional talent’. But what is also clear – as the article mentions is that her autism plays more than a passing role in her singing:

Because of her disability, Sawyer will probably never sing in a great performance hall. But if she didn’t have autism, she likely wouldn’t have cultivated her voice to such a degree in the first place. Many high-functioning autistics such as herself nurse obsessions, and Sawyer’s obsession is music.

I’m not so sure this young lady might not ever sing in a ‘great performance hall’. She might have trouble and need help, but I bet she could. What is beyond doubt is the fact that her autism’s insistence of attention to detail and perseverance is what made her voice the beautiful thing it is now.

I’d say from reading the rest of the article that she might have a thing or two to learn about other autistic people but what is beyond doubt that autism has helped make her who she is. Without autism, her gift for singing would’ve been lessened or not be actualised at all.

There are people in this life who will tell you everything about autism is bad, that it contains no positives. Do not trust these people because – as the story Charlene Sawyer shows – they are wrong. Life is never so black and white.

A greater acceptance

24 Nov

“I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”

A survey by the Down’s Syndrome Association reports on how the parents of Down’s kids have elected to parent rather than abort their children in increasing numbers.

Following the introduction of screening for Down’s syndrome in 1989, the number of babies born with the condition steadily fell from 717 to just 594 at the start of this decade.

Since 2000 the birth rate has increased, reaching 749 births of children with Down’s syndrome by 2006, the latest year for which figures are available.

The increase is down to knowing somebody with Down’s, religious or anti-abortion beliefs feeling life had improved for people with Down’s. I ain’t going to get into a pro-life debate (I’m not, I’m pro-choice, end of.) but I am *immensely* encouraged to see that some parents can act rationally and with thoughts for their children first and foremost.

Initial results show that 25 per cent said they already knew people with Down’s syndrome or other disabilities and that had influenced their decision to continue with the pregnancy. Thirty-five per cent said they felt life and society had improved for people with Down’s syndrome. Surprisingly almost half of those questioned said they did not think they would have a child with Down’s syndrome and that’s why they continued.

Most respondents said they felt supported by their family and friends.

One respondent said: “I don’t subscribe to the notion of the ‘perfect human being’ and found the idea of selecting one child in preference to another abhorrent.”

Another said: “I already felt a strong sense of responsibility for my unborn child and knew that I would love it and want it regardless of any additional needs it might have. I knew I could count on friends and family for support.”

This would seem to be the winning mentality of the ethos espoused by the DSA, their aims being:

We provide information and support for people with Down’s syndrome, their families and carers, and the professionals who work with them.
We strive to improve knowledge of the condition.
We champion the rights of people with Down’s syndrome.

We can only hope that one day, the same sort of autism-friendly results come about. Certainly it won’t be any time soon if those who represent autism as a soulless condition in need of nothing but cure continue to prattle on in factless books.

More power to you all DS community.

I object! (Part 3)

20 Nov

If you’ve been reading these past few days, you know that I find a recent letter sent to the IACC by a number of autism organizations to be, well, objectionable (hence the post titles!). I’ve noted that I don’t like the way they claim backing from a united “autism community”. I don’t like the way they are presenting their arguments in their letter (here and here).

And now, for the last part of their letter.

Bullet point (d), or, we want a bigger say

Provisions for accountability and evaluation for the research spending are absent. Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

They are asking for an “advisory board” or AAB and a grant review system. Generation Rescue attempted (and apparantly failed) to get an AAB put in place by lobbying he Secretary of Health and Human Services. Now they are pushing the IACC to institute an AAB and also add DoD grant review model.

Let’s look at these proposals one at a time, starting with the AAB.

This is not the time to institute the Autism Advisory Board. President-elect Obama will soon be in office. He has specific ideas on autism and disabilities in general. These include an “autism czar” to coordinate autism activities. Let Mr. Obama and his team make the next changes in the structure of how autism research activities are conducted.

Second, the IACC is already an advisory board. Why are people asking for a second layer, when the IACC process has been working well? OK, you got me, it’s a good bet that these people don’t think the process has been working well. If I were to venture a guess, they are unhappy about the lack of a prominent statement about the “epidemic” and/or “vaccines” within the Plan.

Would an Advisory Board change that? Let’s look at how the Advisory Board is mentioned in the report that accompanied the CAA (note that the “autism advisory board is not mentioned within the CAA language itself):

[congressional report] The committee further re-examined the Interagency Autism Coordinating Committee (IACC). In particular, the committee wanted to increase the amount of public participation (from two individuals) to at least six. In addition, the IACC has been tasked to make recommendations to the Secretary regarding the public participation in decisions relating to autism spectrum disorder. For instance, the committee notes that the IACC may recommend providing other, additional, formal mechanisms, such as an Autism Advisory Board, to provide additional public feedback and interaction. Further, the Secretary may opt to provide such a mechanism without the recommendation of the IACC.

The committee expects that the IACC will be the primary mechanism for the coordination of all research, surveillance, and early detection activities within the Department of Health and Human Services. As agencies implement specific activities related to autism spectrum disorder, they should strongly consider those activities outlined in the Autism Research Matrix.

So, even if an Advisory Board were formed, it would still be the IACC that has the task of coordinating autism activities within HHS.

That would seem to me to be a potential reason why they are now asking for something akin to the DoD grant review process–to add some actual power–oversight and control–to the new “advisory” groups they are proposing.

Again, perhaps someone can correct me here in what I am about to say. But from my perspective I can’t see why the NIH needs a second layer of grant review. For the DoD, an agency that is not primarily involved in medical research, I can see a review board. For the NIH, an agency whose functions already include a peer-review grant process, I don’t see that the case is very clear at all for an additional review board. Let the NIH do what it is chartered to do.

Let’s look at that last bullet point from the letter:

[Letter]The planning process diminished the voices of important segments in the autism community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.

First, I’d switch the wording in that last sentence to “….representing individuals with autism and their families.” (and I wouldn’t object at all to people who would change it to “…representing autistics and their families”)

Second, the very segments of the autism community who are signing this letter were given ample opportunities to be heard. IACC meetings have been dominated by a very few with a vary narrow message. An entire “Town Hall” meeting was held on the West Coast to obtain more input. Letters have been sent, investigations mounted and pressure applied. It is quite a stretch to state that voices were “diminished”.

Having your voice “heard” and having your requests acted upon are very different things, however. And that is the flaw in the logic of this letter: the voices were heard, but it appears that they carried a message that didn’t meet the basic criteria for inclusion in the Strategic Plan: a basis in sound science.

To take a recent example: People can say over and over, “we want research into chelation”. But, if (a) there is no reason to suspect chelation would help as autism is not heavy metal poisoning, (b) there is a possibility that chelation could hurt as demonstrated by recent rodent studies

Conclusion, or, tell them again

[letter]We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community representation.

Which pretty much summarizes the bullet points above. My eye was drawn to the idea that a workgroup be convened in January 2009. Why? Could it be that they would like this workgroup to be a fait accompli when President Obama takes office? Again, let Mr. Obama put his plans into action.

The final short paragraph caught my eye as well:

[letter]Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.

The strategic plan (SP) is not approved yet. By definition, decisions are being made that are outside of the Plan. Also, I sincerely hope that decisions continue to be made outside of the Plan. Who can predict what may happen in the next few years that may require action outside of the Plan? As the old saying goes, if we knew what the answers were going to be, it wouldn’t be “research”. I really have a hard time figuring out why they included that sentence in this paragraph.

The letter is then signed:

Autism New Jersey (formerly COSAC)
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

Much speculation could be had about what tradeoffs were made in order to get all these groups to sign the above letter. It isn’t much of a stretch to say that the letter doesn’t go nearly as far as many of the signatories would have gone on their own in the area of mercury and vaccines.

It is notable that Autism Speaks signed on to a letter with a number of groups that have been quite negative towards AS (to put it mildly). It is also notable that at least one, and this one major, autism research organization is not represented on this list.

I realize it is just one rather short letter, and my responses have been rather long in comparison. I also realize that many of these points are probably obvious to those at NIH and/or working on the IACC. And, yet, I somehow had to do this!

On to more important topics soon!

I Object! (Part 2)

19 Nov

It’s amazing that a relatively short letter could be so objectionable as to take multiple blog posts to discuss.

And, yet, here I am, on my third post. You can read the other two, I Object (Part 1) and Why should the Strategic Plan include vaccines.

Continuing on with bullet points (b) and (c)…

Bullet point (b), or “you are leaving money on the table”

[Letter](b) The plan fails to allocate commensurate resources. The CAA authorized $645 million for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

Who is going to say no to “we should apply more resources to the situation”? Certainly not I. But I’m not an MBA. I count resources in terms of how many good research groups are doing quality research in relevant areas. Counting the money, that comes second.

This is similar to the method used by the IACC. People tend to think–and this letter helps perpetuate–the idea that the CAA appropriated money and that the IACC worked from that budget to create the Plan.

Both ideas are incorrect.

First, in admittedly confusing language, the CAA authorized the appropriations. The CAA states, “…there is authorized to be appropriated..”, not, “this amount is appropriated”. Another way to look at it is to see how often “subject to the availability of appropriations” is used in the text of the CAA. It isn’t as though there is a bank account with $645M waiting to be tapped into.

Second, the IACC did not work from a budget and then decide on a Plan. They didn’t say, “Well, we’ve got $645 million, how will we spend it?” What they did was say, “what needs to get done?”. Near the end of the process, they passed the Plan on to the implementation subcommittee to draft the budgets for the various projects.

This sounds like the much more defensible method. The IACC can go to congress and say, “this is what we need to get the job done.” Had they come up with a budget higher than the CAA allocated, they would have been in a good position to ask for more. They are (I hope) in a good position to get their budget fully funded–they can defend why they came to the total cost in their budget.

That said, of course I’d like to see more research funded. But, I’d like to stay on a friendly partnership with the NIH too. Presenting their actions inaccurately (as this letter appears to do) doesn’t accomplish that in my mind.

let’s look at what the CAA authorized to be “appropriated“:

[Combating Autism Act]`SEC. 399EE. AUTHORIZATION OF APPROPRIATIONS.
(a) Developmental Disabilities Surveillance and Research Program- To carry out section 399AA, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $15,000,000.
`(2) For fiscal year 2008, $16,500,000.
`(3) For fiscal year 2009, $18,000,000.
`(4) For fiscal year 2010, $19,500,000.
`(5) For fiscal year 2011, $21,000,000.

`(b) Autism Education, Early Detection, and Intervention- To carry out section 399BB, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $32,000,000.
`(2) For fiscal year 2008, $37,000,000.
`(3) For fiscal year 2009, $42,000,000.
`(4) For fiscal year 2010, $47,000,000.
`(5) For fiscal year 2011, $52,000,000.

`(c) Interagency Autism Coordinating Committee; Certain Other Programs- To carry out section 399CC, 409C, and section 404H, there are authorized to be appropriated the following:

`(1) For fiscal year 2007, $100,000,000.
`(2) For fiscal year 2008, $114,500,000.
`(3) For fiscal year 2009, $129,000,000.
`(4) For fiscal year 2010, $143,500,000.
`(5) For fiscal year 2011, $158,000,000.’.

So, the $645 million number comes from section c. Two things to notice. First, there are large sums in sections (a) and (b) as well. I hope they are getting appropriated. Second, notice that there is money budgeted for 2007 and 2008 in that number. Remember that the CAA hasn’t been funded yet? Has NIH been sitting on their hands, waiting for the budget before they do autism research? Hardly.

The NIH budget for autism in 2007 is estimated at $127 million ($27M more than the CAA called for all IACC sponsored research, which includes CDC and other agencies). Similarly, $128M is the estimated budget for 2008 ($14M above the IACC budget).

Perhaps I am missing something. It is quite possible. But it appears to me that the NIH is working in good faith here.

Again, given the urgent need–to identify and serve the underserved in this country–I would consider there to be a great reason to increase resources applied by the IACC. I just don’t think that is want the signators of that letter had in mind. Consider the next point they make:

Bullet point c, More environmental research, or, what happened to the “V” word?

[Letter]Research on the environment, gene-environment interaction, and treatment are underrepresented in the draft plan. The plan should apply additional resources to these areas.

As already discussed, I found this statement interesting for what it doesn’t say, far more than what it says. What it doesn’t say explicitly is “mercury” or “vaccines”. As noted in that previous blog post: if the signatories of that letter are OK with this wording, it should be OK in the Strategic Plan.

Sullivan’s take

The order of these two bullet points sends a clear message: The Plan doesn’t use all the money “appropriated” and, yet, the Plan should put additional resources into environment and treatment.

Or, “why don’t you take some of the $200 million and spend it on these areas?”

It would be a good question if that was the way the process worked. (A) the money wasn’t appropriated (so there isn’t $200M sitting unused) and (b) the Plan was built on a “what needs to be done” basis, not “how much do we have to spend” basis. The push for more environment/treatment really needs to be justified in terms of “what needs to be done”.

But, again, I’d agree that more resources would be welcome. And, again, I would suggest attempting to meet the great need of serving the underserved. Research into services like the Taft Transition to Independent Living program comes to mind.

more to follow…

I object! (Part 1)

18 Nov

If you’ve been reading LeftBrainRightBrain lately, you know about “The Letter“. If you haven’t, here’s a quick introduction: A number of autism organizations drafted a letter and submitted it to the members of the Interagency Autism Coordinating Committee (IACC). The letter attempted to invoke “the autism community” (see the AoA blog post for more on that) and that was objectionable to me. Kev took up the idea of Who makes up the autism community. It is clearly an important discussion–there are over 100 comments for those two blog posts.

I’ve been told that the letter marks an achievement in advocacy–bringing together all these groups. And it was–someone got Generation Rescue to accept a document that didn’t explicitly call for research on vaccines. Whatever underling who told the top people there, “this is the best you are going to get” was pretty brave.

But, Let’s get back to the letter itself. Because, believe me, I for one have many more objections to that letter. Going through point-by-point takes some, but I present below my views. I’d suggest this: take a look at the letter, see what you may agree with or disagree with, and check back here to see if you agree or disagree with my take.

I’ll be frank. Every section had something objectionable in it.

Let’s take a closer look at the letter, shall we? I’ll add my thoughts section by section, starting in this post with the introduction and the first bullet point.

Introduction, or, “we are united”

[Letter]November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

Ouch–there it is: “Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here”. For any confused as to what “community” means can read the title of the Age of Autism blog post, “Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research.”

That’s been discussed a lot (feel free to join in) here and here.

But, let’s look at the substance of the Letter. They make a number of bullet points, (a) through (e).

Bullet Point (a), or “no Urgency”

[Letter](a) The plan fails to communicate a sense of urgency reflecting the alarming increase in prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

Variations on the word “urgent” are used at least 5 times in the Draft Strategic Plan.

What do they want? They want the Plan to specifically state that autism causes “considerable human and financial toll”, as support for the greater need for “prevention and treatment”. Those are speculations, those are statements from SafeMinds in complaining about the “Strategic Plan” in a previous letter.

Sullivan’s take on “urgency”
When I think of “urgent” in regards to autism, claiming an epidemic is not high (or anywhere) on the list. Finding better ways to help people with autism, yes, that would be high. In terms of the “alarming increase in the prevalence of autism”, I also see things differently that the authors of this letter. I see great strides in identification more people with autism. But, I see a job that is not complete. Racial and ethnic minorities are vastly under-represented in the current autism counts. Autism counts vary significantly by geography. Lastly, but certainly not least in importance, there is likely a vast pool of undiagnosed, underserved adults in this country. But, that is a topic where the mantra “absence of evidence is not the same as evidence of absence” is ignored in place of promoting an epidemic.

Ignoring the underserved is a truly shameful position that these organizations have taken.

However, I am pleased to see that within the Plan, ethnicity, race and lifespan issues are prominent. There is even a prominent statement in the introduction of the Plan on lifespan issues:

[Strategic Plan] Lifespan Perspective: Historically, ASD has been characterized as a disorder of childhood. Although most individuals with ASD will not outgrow their diagnosis, their symptoms will change in form and severity over time. There was great support during the development of this Plan for more research on ASD in older individuals, especially the need for practical strategies for increasing the quality of life and functioning of adolescents and adults with ASD. As individuals with ASD advocate for themselves and expand our knowledge of their experiences and needs, they become partners in the research effort.

Does that rise to the level of “urgency”? I don’t know, I’ll take “great deal of support” happily.

Urgency or politics?
The issues noted above highlight what I see as a big problem with this letter: it is attempting to make the Plan a political document, possibly acknowledging the “epidemic” of “vaccine injury” autism. I am not naive enough to think that there are no politics involved in government sponsored medical research, but the backbone of the NIH process is scientific peer review of research proposals. I’d rather see the Plan document stay closer to that ideal than become political fodder in a struggle that is ripping our community apart.

Such a short letter, so much to discuss. And, we are only at the first bullet point! But, even at this point, it is clear that this is a letter that doesn’t come close to representing the views of this member of the greater autism community.

More to follow…

Who makes up the autism community?

16 Nov

On a recent post, Sullivan asks why vaccines should be included in any strategic plan when ‘vaccines-cause-autism advocacy organizations can’t ask for it?’

Its a good point. What _I_ want to pick up on is the claim that some of the groups who co-signed the letter Sullivan refers to are in any way (as they claim to be) ‘the autism community’. Lets take a look at some of the biggest news events of the last five years related to autism.

The top stories from 2003 came in July of that year. Of the top 100, less than 10 mentioned vaccines. Of the other 90% of stories Generation Rescue mention none, SafeMinds mention none, ARI mention none, NAA mention none, OAR mention none, TACA mention none, Unlocking Autism mention none.

The biggest month for 2004 autism news was May. Non-vaccine stories (on page 1) accounted for 87%. Again, none of the above organisations discussed any of these stories.

The biggest month for autism news in 2005 was August. Of page 1 results, 19% mentioned vaccines (4 were from AoA and about 6 were about the death of Abubakar Nadama). Of the other 81%, none were mentioned by the above groups.

2006 and October is the busiest news month. 3% mention vaccines. Of the 97% of stories that don’t, the organisations above mention none.

2007 sees the busiest news month as April. Of the 93% that do not talk about vaccines, none of the above groups comment on their websites.

2008 – so far April is the busiest news month with 9 mentions of vaccines in the top 100 stories. Of the 91% not talking about vaccines, yep, you guessed it, none of the above organisations talk about the stories.

The single top story regarding autism this year was World Autism day. No mention of this on the websites of Generation Rescue, SafeMinds, NAA, ARI, OAR, TACA or Unlocking Autism.

And these are the people who claim to be the autism community?

The truth is that these people are a series of single issue groups concentrating on vaccines and autism. The truth is that fully 7 out of the 11 (63%) groups who co-signed this letter have no interest in autism beyond vaccines/toxins.

These groups do not, in any way shape or form represent the autism community. I hope the IACC see this clearly.

A (head) space of my own

14 Nov

Four days ago the New York Times published a fascinating piece on the hypotheses of two scientists who are positing that mental disorders of an unknown variety and number are all actually one disorder. Specifically mentioned are autism (of course), schizophrenia, manic depression (aka Bipolar), depression:

In short: autism and schizophrenia represent opposite ends of a spectrum that includes most, if not all, psychiatric and developmental brain disorders. The theory has no use for psychiatry’s many separate categories for disorders, and it would give genetic findings an entirely new dimension.

Two fascinating aspects of this appeal to me. Firstly is the idea of this proposition as ‘hypothesis generation’:

The reality, and I think both of the authors would agree, is that many of the details of their theory are going to be wrong; and it is, at this point, just a theory,” said Dr. Matthew Belmonte, a neuroscientist at Cornell University. “But the idea is plausible. And it gives researchers a great opportunity for hypothesis generation, which I think can shake up the field in good ways.”

Can you sense where I’m going to go with this yet? Shaking up the field in _good_ ways…..as oppose to _bad_ ways….I’m getting predictable right?

Well, you’d be right. This is definitely a good sort of hypothesis generation – it leans on sound scientific theory and provides a possible next step for a wide variety of mental differences (my word, ‘disorder’ is not right for me) which other scientists can break down into testable ideas. Some will be right. Lots will be wrong. And science will carry on getting closer and closer to an accurate reflection of reality.

And the bad sort of hypothesis generation? It relies on science that is either unsound, improbable or fabricated from whole cloth. It represents a bad financial investment as the return from this sort of hypothesis in terms of solutions is pretty much zilch. And as the recent letter to the IACC sent by groups pursuing such hypothesis shows what it does produce is an overblown sense of entitlement and the lack of recognition that science cannot be served up like a drive thru burger meal.

Anyway, moving on from that, the second thing that appeals to me about this proposition is the fact that it links my autistic child and I in non just the bonds of blood and familial genetics but the genetics of difference too. She is autistic I am manic depressive – we have a head space all of our own.

Back in July, I wrote an entry that referred to an ever-shifting Aurora of autism’. I would love to have underestimated and would like to be able to refer to ‘an ever-shifting Aurora of neurodiversity’ where I share genetics differences with my autistic child but in slightly different shifting shades. All my online and offline friends with OCD, depression, dyslexia, schizophrenia and a wild mix of others are really my genetic family.

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?

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