Archive | July, 2009

The kid’s autistic: the Generation Rescue website says so

30 Jul

If I were good at being respectfully insolent, I might try to make a joke out of how Generation Rescue has changed into Generate Revenue over the past year or so.  Generation Rescue’s website now offers multiple ways for people to spend money. From “let’s go shopping” to the multiple “shopping affiliates”, a portion of everything you spend from supplements to saunas could go to Jenny McCarthy’s autism organization.

But insolence is best left to the pros.

Aside: there is a link to have a personally autographed copy of Jenny McCarthy’s latest book sent out. I resisted the temptation to spend $99 to have a copy sent to CHOP with the inscription, “Paul Offit! You Rock!”

See, I should leave the insolence to the pros.

So, back to the story, I saw an interesting link on the Generation Rescue main page recently:

Concerned your child might have autism? Take our survey

Click the link and you get to a survey:

CARD Autism Symptoms Questionaire (ASQ – BETA) powered by: Generation Rescue

CARD being the “Center for Autism and Related Disorders”. They are an ABA group, headed by Doreen Granpeesheh, who also works at Thoughtful House (Andrew Wakefield’s clinic).

OK, I passed on the signed book, but I couldn’t resist the free survey.

I took the survey. I used information from a child I know very well; a child who is definitely not on the spectrum. Five minutes later I was surprised to find out that “A diagnosis of Pervasive Development Disorder Not Otherwise Specified (PDD-NOS, a mild version of autism) appears to be indicated.”

It wasn’t even close, according to the CARD/GR website.  Here are the results. The blue bar shows the results for the kid.  That bar is almost 6 times higher than the cutoff for PDD-NOS.  It’s also wider, what does that mean?

CARD/GR survey results (for non ASD kid)

CARD/GR survey results (for non ASD kid)


A little internet searching and I found this disclaimer for the survey in a Generation Rescue email: “This is not a substitute for a formal diagnosis by a professional, but it is a free and accurate way of determining if a diagnosis is likely.”

Accurate?  A non ASD kid is shown to to be well into the PDD-NOS range, and that’s accurate?

That was just one kid, and perhaps PDD-NOS is “mild” enough to be a common “misdiagnosis” of the survey. A friend of mine took the survey too, again using information from a real, non ASD kid.  The results?  Autism is indicated. Not PDD-NOS, but Autism.

At least the survey results included a link to the Generation Rescue guide to recovery.  With luck, and a lot of supplements, chelation, saunas, HBOT, we might just be able to recover these (non ASD) kids.

Maybe I can enter the recovery stories on the GR website to inspire others.

The reality of the situation is that this is no joking matter.  One major problem the California Department of Developmental Services ran into in recent years was early intervention groups who were both diagnosing and treating young “autistic” kids.  Funny thing, for some of the groups, none of the kids were eligible for services beyond age 3.

California is seeing big budget cuts to the Department of Developmental Services.  There is a very real possibility that groups are using inaccurate testing techniques to “diagnose” kids with ASD’s and then doing tens of thousands of dollars in possibly unwarranted therapies.   We just don’t have the money to throw away like that.  We never did.

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

Autism Omnibus: Hazelhurst appeal denied

29 Jul

The Autism Omnibus Proceedings is, for better or worse, one of the big stories in the world of autism news. Hearings have been held, using the best science and arguments that could be brought to bear. The two theories were (1) does MMR cause autism and (2) does thimerosal cause autism.

Each theory was tested using three “test cases”. Essentially, three trials for each theory, each discussing an individual child plus arguments on “general causation”.

So far, the decisions are only in on the MMR question. The answers were clear and decisive: “this is not a close case”.

The Omnibus decisions are not the end of the vaccine/autism lawsuits. Not by a longshot. The first step was an appeal, and the first appeal has been decided.

Here is the conclusion of the Judge who heard the appeal for the Hazelhurst case:

In hearing this appeal, the court is not without sympathy for Yates, the Hazlehursts, and the other children and families dealing with autism and autism spectrum disorders. And this court, like the special master, acknowledges both the burdens many of these families have faced and the tremendous love and support they have shown their children. The facts, however, do not support petitioners’ appeal and we have no choice but to deny their motion. Accordingly, for the reasons set forth above, the special master’s decision of February 12, 2009, is AFFIRMED.

I.e. the appeal failed. The decision stands. The Court holds that MMR does not cause autism.

The judge’s decision in the appeal gives a good summary of the original case. If you want to read about the Hazelhurst case, it would be the first place I would send you.

From the appeals judge’s ruling, here are the two “cardinal” flaws in the petitioner’s case:

1) First, the special master explained that petitioners’ experts based their opinions on the characteristics of the “wild-type” measles virus rather than on the characteristics of vaccine-strain measles, despite the fact that the measles vaccine is distinguishable from the wild-type measles virus in several key respects.

2) Second, the special master observed that petitioners’ experts further based their opinions on studies (detecting the presence of the measles virus in the gut tissue of autistic children) that the special master found to be unreliable.

The special master considered the presence of the measles virus in the gut to be the “linchpin” of the petitioner’s case. In other words, they needed to show reliable data or studies demonstrating that the virus was still in the tissues of the children long after the vaccination.
The two studies they had to rely on were (a) that by Dr. Wakefield’s team and (b) an unpublished study by Dr. Stephen Walker, presented as a poster at the 2006 IMFAR conference. Well, the Wakefield study was pretty well discredited, and the Walker study was never published.

In the appeal, the Hazelhurst’s lawyer argued that the testimony of Dr. Stephen Bustin should not have been considered. Amongst the arguments were that some of the information was submitted at the last minute.

No arguments were made that Dr. Bustin was wrong in his analysis of the O’Leary laboratory. That was one of those strange moments in law–no one challenged Dr. Bustin on being right. The judge hearing the appeal noted that the rules for the Vaccine Court are different from a typical court of law. Specifially, the rules are designed specifically to allow more information in to inform the Special Master. The judge further noted that under the typical rules of evidence, the Walker study would never be admitted anyway.

If you haven’t read about Dr. Bustin’s testimony, you should consider it now. Dr. Bustin basically discredited the entire “persistent measles in the gut” idea by showing that the O’Leary laboratory that made tests had serious methodological flaws and, basically, couldn’t make the tests at all.

The Hazelhurst’s lawyer then argued that the Special Master failed to include all the relevant evidence., In specific, that the Walker study wasn’t given due weight.

Again, one of those strange moments in law. The laywers moved directly from trying to get the Special Master to exclude evidence that was clearly relevant, to claiming that the Special Master had to include all relevant evidence. I guess that’s why I am not a lawyer. I couldn’t pull that off with a straight face.

As it turns out, even the witness for the Hazelhurts’ side stated that the Walker study wasn’t reliable:

Respondent additionally notes that Dr. Hepner herself acknowledged that the preliminary data from the study was “not useful at this time” (Cedillo Tr. at 682), declined to draw any conclusions about the biological significance of the Walker group’s findings (Cedillo Tr. at 682), and identified what respondent describes as several significant drawbacks to the study, including that the experiments had not been “blinded”28 and had lacked negative controls.

So, it is rather moot as to whether the Walker study was considered, since it doesn’t really provide substantial evidence to support the MMR theory.

The third main argument used in the appeal was that the Special Master failed to decide on a “critical issue”. Namely, whether regressive autism exists as a separate phenotype.

The Special Master wrote in his decision, and the appeals judge agreed: since the decision held that MMR doesn’t cause autism, there was no point in deciding on the question of regressive autism as a separate phenotype.

Given that the expert testimony was against this idea, it is probably better for the petetioners that this question was left unanswered.

The main result is, of course, the original decision was upheld. Looking forward, it doesn’t look good for the MMR theory to win in civil litigation from my perspective. The Bustin testimony is very damning to the little evidence there is, and that will be allowed in a civil case. The Walker study, however, will almost certainly not be allowed as it is unpublished and has severe limitation

Autism and Gastrointestinal symptoms: two new studies

28 Jul

Autism and poop. You hear those two words in the same sentence a lot on the net. People have been asking for studies on whether autistics have a higher incidence of gastrointestinal (GI) problems for a long time. Well, two papers came out in the last week with answers…and many parents are not happy.

The two papers are:


The early stool patterns of young children with autistic spectrum disorder

by B Sandhu, C Steer, J Golding, A Emond of the University of Bristol

and

Incidence of Gastrointestinal Symptoms in Children With Autism: A
Population-Based Study

by Samar H. Ibrahim of the Mayo Clinic.

The Bristol group’s study came out last week. Given that the Mayo Clinic study was on the way, I figured I’d wait and blog them both at the same time. Actually, I considered not blogging them at all. These papers are more nails in the coffin for Andrew Wakefield’s hypothesis that MMR causes “autistic enterocolitis” and the belief by many that this drove much of the “autism epidemic”. But, tired as that story is, the question of whether autistics have GI problems at a higher rate is important and worth discussing.

The Bristol study has free pdf access. Not so the Mayo Clinic study: abstract only, but I have a copy. Rather than go through the studies in detail (if you are that interested you will likely read the paper for yourself), let’s just look at the results and conclusions sections of the abstracts:

Bristol group:

Results: Comparison of the ASD and control group during the first 3.5 years of life showed no major differences in stool colour or consistency, or in frequency of diarrhoea, constipation, bloody stools or abdominal pain. The ASD children had similar stool frequency up to 18 months, but there was a trend for ASD children to pass more stools at 30 months (OR 3.73, 95% CI 1.11 to 12.6; p=0.004) and at 42 months (OR 6.46, 95% CI 1.83 to 22.7; p,0.001), although only three children passed more than 4 stools/day. Repeating the analysis on only those cases diagnosed as having classical childhood autism resulted in very similar findings.

Conclusions: During the first 42 months of life, ASD children had a stool pattern that was very similar to that of other children, apart from a slight increase in stool frequency at 30 and 42 months. There were no symptoms to support the hypothesis that ASD children had enterocolitis.

Mayo Clinic:

RESULTS: Subjects were followed to median ages of 18.2 (case subjects) and 18.7 (control subjects) years. Significant differences between autism case and control subjects were identified in the cumulative incidence of constipation (33.9% vs 17.6%) and feeding issues/food selectivity (24.5% vs 16.1). No significant associations were found between autism case status and overall incidence of gastrointestinal symptoms or any other gastrointestinal symptom category.

CONCLUSIONS: As constipation and feeding issues/food selectivity often have a behavioral etiology, data suggest that a neurobehavioral rather than a primary organic gastrointestinal etiology may account for the higher incidence of these gastrointestinal symptoms in children with autism.

Or, to put in a single sentence: there is no evidence that children with autism have GI problems at a greater rate than the general public.

How about repeating that with emphasis: there is no evidence that children with autism have GI problems at a greater rate than the general public. They are not saying that there are no children with autism and GI issues. Quite the contrary. You wouldn’t know that to read some comments on the internet about these studies.

I’m a little surprised by these results. No, I don’t think that Wakefield was right. But, I wouldn’t be surprised if children with autism have other medical concerns at higher rates. Also, there were two abstracts from IMFAR 2008 that stuck in the back of my mind.

In the first, a team from the University of Connecticut presented a study suggesting that GI issues may be more common in children with children with ASD’s (but at a similar rate to children with other developmental delays).

No evidence for higher rates of gastrointestinal problems in young children with ASDs versus those with other developmental delays

Conclusions: In this sample of young community-based children with ASDs and other developmental delays, no significant group differences in parentally reported feeding problems and gastrointestinal symptoms were found at age two or at age four. Most published research has been conducted at specialty GI or DD/ASD clinics with older children. The results of this study suggest that their findings may not be applicable to young children or to children evaluated in community settings. While GI problems may be increased in children with developmental disorders, we found no evidence that they were specific to autism spectrum disorders.

The second abstract (which later became a paper that was discussed on this blog): David Mandell’s group presented a paper suggesting that a significant fraction of adults hospitalized with schizophrenia diagnoses might actually have autism:

Evidence of autism in a psychiatrically hospitalized sample

Their IMFAR presentation (and later published paper) showed an increased number of GI problems in their adult group. 36% of their adults had GI problems vs. 23% of the general psychiatric hospital population.

Unfortunately, these latest studies are getting the usual “online-autism-parents” community welcome. It follows the same pattern as vaccine/autism research:

a) Ask for studies to be done
b) Studies are done
c) Disagree with the data
d) try to slime the authors

Is it a surprise to anyone that some researchers have opted out of working on autism?

(note: minor edits were made shortly after publishing this article)

Obama to sign the International Treaty On The Rights Of Persons With Disabilities

24 Jul

I am one of the many people who feels that America is a place where civil rights are the core of our identity. I also agree with the many people who believe that the key questions facing the autism community are also civil rights oriented.

I am thus of mixed emotions with this announcement: President Obama will announce that he will sign the International Treaty On The Rights Of Persons With Disabilities. This is the subject matter I love to blog. At the same time, I hate to see the U.S. not in a leadership role on such an important subject. We should have signed this treaty long ago.

A press release from the American Civil Liberties Union (ACLU) states:

WASHINGTON – July 24 – At a celebration today of the 19th anniversary of the passage of the Americans with Disabilities Act (ADA), President Obama will announce that he will sign the most comprehensive international treaty on the rights of persons with disabilities. If ratified by the Senate, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) will be the fourth major human rights treaty ever adopted by the U.S. and the first it has adopted in the 21st century. The American Civil Liberties Union welcomes President Obama’s reengagement of the United States in international human rights efforts.

I was forwarded the following email from Ari Ne’eman, of The Autistic Self Advocacy Network:

Hello,

This afternoon, I will be joining President Obama and the leadership of the cross-disability community at a special ceremony at the White House where the President will be announcing the intention of the United States to become a signatory to the UN Convention on Disability Rights. The treaty will enshrine in international law a wide array of rights, some of which are present in the United States already, such as the right to reasonable accommodation, as well as others, such as the right to community living supports as opposed to having only segregated options available, that we still have to fight for in our own country. You can read the treaty yourself by going to http://www.un.org/disabilities/default.asp?id=259. This is an important day for our community and I believe the President should be applauded for taking this important step.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

That felt good to blog.

More non-autism blogs critical of the vaccine-autism story

23 Jul

There is a substantial public relations push to get the vaccines-cause-autism idea in front of the public’s eye. High end, expensive PR firms have been hired, and, let’s face it, they got a big free boost from Jenny McCarthy and Oprah.

The cost to public health is obvious. Declining vaccination rates have already had a big impact in the UK, and the US has also seen a resurgence of measles and other diseases.

But, there is another cost. As noted recently on this blog, Jenny McCarthy has already become the butt of comic strip jokes for her position on vaccines. Many people are likely to not realize that Jenny McCarthy speaks for a minority (loud though they may be) of the autism community. My kid relies on on the public’s perception of “the autism community”. When people like Ms. McCarthy damage that perception, there is a very real cost to my kid, my family.

It isn’t new for bloggers outside of autism to be critical of Jenny McCarthy and others in the vaccines-cause-autism groups. Most notably, Orac has taken Ms. McCarthy to task a number of times in what is one of the most well read medical blogs, “Respectful Insolence“. Likewise, Science Based Medicine has had a number of bloggers take on the pseudoscience and dangerous opinions of the vaccines-cause-autism crowd. But, one could argue that they are medical blogs and, thus, more connected to vaccines, public health and autism than your general blogger.

But, the past week has seen a couple more prominent blogs

Discover Magazine’s Bad Astronomy has come out against the dangerous pseudoscience with Jenny McCarthy: spreading more dangerous misinformation. If the title isn’t clear enough, here’s the first paragraph:

If you haven’t had your quota of shockingly wrong medical advice for the year yet, try watching this video by Dr. Jenny McCarthy, as she manages to squeeze about a metric ton of misinformation into a two-ounce package.

Note: “try watching this video” is a link in the Bad Astronomy blog piece. A link to the video hosted by Generation Rescue. For some reason (bad publicity? Too much bandwidth?) GR has pulled the video from their site.

While I cringe at yet more damage to the public perception of the “autism community”, I applaud Bad Astronomy for taking on Ms. McCarthy. It isn’t Bad Astronomy’s fault if “the community” looks bad. It is squarely at the feet of Jenny McCarthy.

Interestingly, Mr. Kent Heckenlively of the “Age of Autism” blog decided to comment at Bad Astronomy. Even more interesting, Mr. Heckenlively was forced to retreat to his own blog to continue the discussion where his claims wouldn’t be exposed to actual criticism.

But, once again, one could say it is expected that a science blog like Bad Astronomy would take on Jenny McCarthy. The do-vaccines-cause-autism question is a science question after all.

Enter Mother Jones. MJ blogger Sonja Sharp posted, Breaking: Vaccines Still Don’t Cause Autism.

Mother Jones is not a science or medicine based publication. In fact, as Ms. Sharp states:

We love a good conspiracy as much as the next investigative magazine—especially one that involves Big Pharma, the FDA, and the CDC. But as we’ve extensively reported here, the vaccines = autism meme might just be the most damaging medical myth of the decade. Not only is it based on false “science” that’s tearing apart the families of sick children, it’s unintentionally sickening thousands of others.

While the vaccine/autism story isn’t completely new to Mother Jones (for example, see Arthur Allen’s piece, Vaccine Skeptics vs. Your Kids)), Jenny McCarthy et al. should take a big hint when they can’t even get sympathy from MJ.

This blog piece obviously hit a nerve. Take a look at the comments. Second comment: David Kirby. David Kirby is, for better or worse, one of the most read bloggers talking about autism. I can already feel the heat from those who will (with good cause) tell me that David Kirby doesn’t really talk about autism. Point well taken. That said, Mr. Kirby doesn’t even participate in the comments of his own blog. Why suddenly break the tradition with Mother Jones?

I expect Mr. Kirby to actually partake in the discussion beyond his one comment. I may be forced to take a page from Mr. Heckenlively’s book and take the conversation here.

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?

Joint Letter from Self-Advocacy Organizations to Secretary Sebelius

20 Jul

There has been a lot of online discussion about how Health Care reform will affect the autism communities. This has included a number or recent posts on this blog.

Much of the discussion here and elsewhere has focused on children and, especially, on ABA. There is a lot more to autism and a lot more to health care than just these subjects. Case in point, the letter below.

A number of self-advocacy groups have sent a joint letter to the secretary of the U.S. Department of Health and Human Services (Secretary Kathleen Sebelius). One of these groups is ASAN, the Autsitic Self-Advocacy Network.

(Edit) This is an effort to bring in issues from the Community Choice Act, which includes much that the CLASS act has left out. ASAN has an action alert on this. Please, take the time to sign the online petition.

This is something we all should be getting behind.

July 10, 2009 VIA Facsimile & E-Mail

The Honorable Kathleen Sebelius

Secretary

U.S. Department of Health & Human Services

200 Independence Avenue, SW

Washington, DC 20201

Dear Secretary Sebelius:

Thank you for your leadership this week in bringing the issue of Long Term Services and Supports back into the health care reform discussion by expressing support for including the Community Living Attendant Services and Supports (CLASS) Act in the health care reform legislation currently making its way through the Congress. As leaders of grassroots disability organizations, we write to request a meeting so that we can open up a line of communication with you and your team as health care reform takes center stage.

The disability community has advocated that reforming Long Term Services and Supports (LTSS) is a critical component of any health care reform initiative. As you know, adequate home and community services are not only preferred by seniors and people with disabilities, but also save money by avoiding serious secondary medical conditions, unnecessary trips to the emergency room, hospital stays and doctor visits. With your letter supporting inclusion of the CLASS Act, the administration has taken a first step in addressing this critical issue.

Although the CLASS Act would expand resources available to individuals and families to purchase LTSS to enable them to remain in their own homes in the community, this legislation does not:

* eliminate the institutional bias in the Medicaid program which forces Americans with disabilities and older Americans into nursing facilities and other institutions;

* meet the needs of seniors and people with disabilities who are already in nursing facilities or other institutions or who are at immediate risk of being forced into such a setting;
* address the needs of seniors and people with disabilities who will require LTSS but won’t qualify for the proposed benefit because they are not working;
* address the needs of persons who acquire disabilities earlier in life and won’t qualify because they cannot secure employment;

* provide any actual assistance for five years after it is enacted because people must contribute for five years before they can receive any benefit; or

* meet the needs of persons with significant disabilities who would require more assistance that would be provided under this benefit.

That’s why we need the Community Choice Act (S683/HR1670).

The Community Choice Act (CCA) would eliminate the institutional bias in Medicaid and give a real option for seniors and people with disabilities who want to live in the community with LTSS. It would address the needs of individuals who are at risk of institutional placement and give people who are already in such settings an opportunity to return to community living. CCA would provide immediate relief to Americans who are struggling with this issue, whether they were born with a disability, acquired one later in life, or are helping a family member. CCA provides a safety net for people with the most significant disabilities and allows people with incomes above the Medicaid level to buy into this program. Ultimately, the Community Choice Act brings federal LTSS policy in line with the Supreme Court’s Olmstead v. L.C. decision, giving every American with a disability the right to live in the most integrated setting.

We are writing to urge that the administration express its public support for including the Community Choice Act in the Affordable Health Choices Act. As a Presidential candidate and as a United States Senator, President Obama has expressed his support for and cosponsored the Community Choice Act. This legislation has a broad base of support within the aging and disability communities. In fact, over 80 national aging and disability organizations have endorsed this legislation.

We look forward to working with you to end the institutional bias so that every American is given a real choice in how and where they receive long term services and supports. We respectfully request a meeting with you this month to discuss how we can work together to accomplish our mutual goals.

Sincerely,

Bruce E. Darling

Organizer, ADAPT

Andrew J. Imparato

President and CEO, American Association of People with Disabilities

Ari Ne’eman

President, The Autistic Self Advocacy Network

Brenda Battat

Executive Director, Hearing Loss Association of America

Nancy J. Bloch

Chief Executive Officer, National Association of the Deaf

Kelly Buckland

Executive Director, National Council on Independent Living

Daniel B. Fisher, MD, PhD

Steering Committee Member, National Coalition of

Mental Health Consumer Survivor Organizations

Chester Finn,

President, Self Advocates Becoming Empowered

cc: Henry Claypool, Director, Office on Disability

Autism mum needs help of autism community – please help

18 Jul

This is so important I am re-running this post. Kev blogged the story of Autism Mum Melissa who lost nearly everything in a fire.

The chipin widget isn’t showing any money collected so far. I know this is wrong because I know that I donated. I also know that more is needed. It’s time to lend a helping hand. As Kev stated, this is something that transcends the divisions in the autism communities.

I tweeted a few days ago about the awful thing that has happened to my friend Melissa, an American single mum with two sons of whom one is autistic. But nothing can say it as powerfully as her own words.

Is where I am.
To say I’m overwhelmed is an absolute understatement.

My house burned down today.

Yes, I’m serious.
We’re fine- everyone made it out safe.
But our cat did not make it.

I don’t really even know what to write at the moment, other than my heart is breaking.
You think you’re prepared for such things, “if ever there’s a fire, I’m grabbing this, this, and this,”
Not so.
We have our pajamas.
I grabbed kids and ran like hell.

On top of that, Companion’s car was engulfed in flames.
My car literally exploded.
Homeless and carless all in one night.

We are currently at my parent’s.
I will update when possible.

Please keep us in your thoughts and prayers.

I’ve set up a chipin widget (see right. IE6 users scroll down, sorry). This is linked directly to Melissa’s PayPal acct. Please contribute as much as you can. You do not need a paypal account to help.

Melissa’s lads also wear clothes in the following sizes: 10/12 and 4T. I don;t know how to start getting things directly to her yet but please put anything you have to one side and I’ll return to this subject hen I know more.

Please help. I’d really like to have Melissa get a sizeable amount of money from the autism community. This goes beyond any neurodiversity/vaccine/genetic research issue. Please help and please pass this on. Retweet if you’re a Twitter user and blog about it yourself if you’re a blogger.

Thanks you in advance.

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