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Who should lead the autism rights movement?

8 Oct

An article up on the Washington Times Communities poses the question: Who should lead the autism rights movement? The article cites an amazing discussion that has been going on at The Thinking Person’s Guide to Autism.

If you ask me, “who should lead the autism rights movement?” the answer is simple. No one. Emphasis on one. As in no one person can or should. We are talking about too diverse a group of people for any one person to lead.

Frankly, I think a leader/follower idea isn’t right anyway. Part of this is my own personal bias. I am always suspicious of people who want to lead. Especially people who are absolutely sure of their positions and never waiver from them. That’s just a recipe for disaster. I shy away from people who don’t understand that just because someone doesn’t want to lead, that doesn’t mean that he/she wants to follow. I run from people who are too enamored with leadership and power.

One comment out of the TPGTA series that has resonated with a number of people came from one of Zoe’s posts: “It goes like this: ‘Some parents just want disabled children to speak and disabled adults to shut up.'”

It pretty well sums up much of the divide, and much of the question of “who should lead”. Autism is a spectrum. There is are divisions between adults and parents, and the degree of challenge the autistic faces. Not all “high functioning” autistics are self-advocates. Not all “low functioning” autistics are not self advocates. (and, yes, I hate those “functioning” terms). We need people to advocate for the rights of all on the spectrum. We need advocates who have experiences relevant to the various parts of the spectrum.

That means we need people, plural, call them leaders if you will, who will represent the self-advocates. We need people who will represent those who, for whatever reason, can’t or don’t self-advocate. Most of all, we need these people to work together. To not only be the allies of autistics, but allies of each other.

There are many things that parents like myself–parents of young children with great challenges–should realize. This, of course, in my own humble opinion. I’ll list only a few.

It is in our children’s own best interest to be allies with self advocates. They not only can teach us things, but the fact is our kids are the minority. Seriously. First, there is a big population of unidentified adults out there. Kids are the minority, even amongst autistics. Even if you have problems accepting that, the “classic” autistic kid is the minority even amongst the autistic children of today. For example, most parents report their autistic kids are getting letter grades. Only 2.4% were reported by parents as “can’t speak”.

A common theme I read is from parents writing, “self-advocates are not as disabled as my kid. They can’t relate.” I really dislike the “more disabled than” idea, but accepting that–we parents aren’t as disabled as our kids either. Self advocates can have an understanding of our kids just as we can. Self advocates may have different priorities than our kids. And that’s where being allies comes into play. We support their priorities, they support those of our kids.

Whatever your goal for your kid, improvement, cure, recovery, education…whatever it is, isn’t “becoming capable of self-advocacy” a laudable goal for any kid, disabled or not?

Being an autistic self-advocate (or an autistic non-self-advocate) doesn’t make someone right, nice, friendly, or likeable. Just like being a parent doesn’t make one right, nice, friendly or likeable. No one is saying you have to accept whatever a self-advocate has to say, just like self-advocates don’t have to accept what parents have to say.

The thing about writing a piece like this is that it is sure to annoy someone. Many someones. As Ari Ne’eman wrote in his piece for TTPGTA: “As far as I’m concerned, if we’re uncomfortable, we’re making progress and we shouldn’t stop.”

Back to the idea of leadership. With the passing of Steve Jobs this week, I’ve heard his address to Stanford Graduates a number of times on the radio. One paragraph keeps standing out in my mind:

Your time is limited, so don’t waste it living someone else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.

He didn’t say, “find someone to follow” or “be a leader and find some people to follow you”. He said, “Don’t be trapped by dogma — which is living with the results of other people’s thinking.”

We don’t need a leader. We need leaders. Thousands of them. That’s why it’s a “movement” not a political party.

A very bad week for the XMRV causes disease idea

5 Oct

I opened a recent article with the statment: “Xenotropic murine leukemia virus-related virus (XMRV) has been suggested as linked to chronic fatigue syndrome and autism. This has been rather controversial in both cases.”

The story gets more tangled. The lead researcher promoting the idea has been fired. The Science Insider blog (affiliated with the journal Science) has an article: Chronic Fatigue Syndrome Researcher Fired Amidst New Controversy. Trine Tsuderous at the Chicago Tribune has an article: High-profile 2009 chronic fatigue syndrome study in dispute: Lead researcher fired as journal, institute investigate alleged figure manipulation.

Yes, Judy Mikovits has been released from her post at WPI. The Institute has released a statement on their facebook page:

The Whittemore Peterson Institute is announcing the departure of Dr. Judy Mikovits from WPI. We wish to thank her for her previous work and commitment. The WPI remains committed to a comprehensive research program. Our research team and program remains active, and our lab open to authorized employees. We will continue the critical work of finding answers to M.E. and related diseases.We will use the opportunity created by the departure of Dr. Mikovits to do a full evaluation of our research lab and current research projects. WPI is dedicated to the highest standards in research and patient care, and to advocating for the patients, families and caregivers we exist to serve.

What happened? One big piece of this can be found on the ERV blog as XMRV and chronic fatigue syndrome: For your enjoyment– A magic trick. It really is worth going over there and reading through the discussion.

I am going to take two pieces of data, from two independent experiments, establishing ‘proof’ of two different concepts, presented in to different formats and to different events…

Yes, two figures were presented at different times–and with different interpretations. But, in the end, they were only one dataset.

As ERV points out in the comments section of her article:

As RRM stated, Im sure there is a TOTALLY REASONABLE explanation for this. Im SURE it wasnt intentional. But even if it were that damn post doc again– what does this say about QC at the WPI? What does this say about their standards? What does this say about how carefully and how critically Mikovits is looking at her own work?

The discovery of the two-figures-which-are-one and the release of researcher Mikovits from WPI comes after a huge blow to the science behind the proposed link between XMRV and Chronic Fatigue syndrome. From Science Insider:

The issue came to a head with the recent publication by Science of the nine-lab study. The so-called Blood Working Group, which included the labs run by Mikovits and Ruscetti, failed to reliably find XMRV or other gammaretroviruses in blinded samples from people who previously had tested positive for these viruses. Both Mikovits and Ruscetti co-authored the paper, which invalidated their own assays for XMRV.

Why bring this up on an autism blog? Because XMRV has been proposed as being linked to autism. More recent studies fail to find a link (e.g. PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism).

How did the XMRV/autism discussion get started? Well, as David Kirby wrote a few years ago:

As Dr. Mikovits explained to a television news program in Nevada, “It is not in the paper and not reported, but we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism. It certainly won’t be all, because there are genetic defects that result in autism. But there are also the environmental effects; there is always the hypothesis that, ‘My child was fine and then they got sick, and then they got autism.'”

So, the XMRV/autism story got started with unpublished data by the now fired Mikovits, who claimed that she found XMRV in the blood of autistic children.

For those who remember David Kirby, the idea of him taking extremely weak evidence and creating a sensationalist story out of it is not surprising. Acting without apparent regard for the harm he could be causing, Mr. Kirby linked XMRV to autism through vaccines. Classic David Kirby:

The discovery raises more questions than it answers. What, exactly, is it about immunization that might switch on XMRV viral expression? Could the effect of heavy metals upon cytokine balances be at play? Where did this retrovirus come from, and how did it apparently become so prevalent in children with autism? Did these children inherit the virus from a parent, or was there some other unexplained route of transmission? Why has the NIH said nothing about XMRV in association with autism, and did Dr. Insel know about these findings without sharing them with the IACC?

Mr. Kirby’s style is well represented in the above paragraphs. Pose sensationalist, unsupported ideas as questions. Gives him the chance to put his ideas out there while keeping himself at a distance from the statements.

Now that the XMRV research by Dr. Mikovits is in serious doubt, will David Kirby retract his article on the subject? Will he at least put out an article which informs his readers of the current state of research? Or will he quietly move on to his new project (Death at SeaWorld – Shamu and the Dark Side of Killer Whales in Captivity) without regard for the harm he has caused to the autism community?

I single out Mr. Kirby as an example of the sort of messenger who has promoted ideas like XMRV and autism or XMRV and chronic fatigue. The mercury-causation idea fell apart, but no word from people who promoted it a great deal (like David Kirby). What will happen now that XMRV and autism and XMRV and chronic fatigue are falling apart?

XMRV: False Positive in chronic fatigue syndrome

4 Oct

Xenotropic murine leukemia virus-related virus (XMRV) has been suggested as linked to chronic fatigue syndrome and autism. This has been rather controversial in both cases.

Before we get to the “false positive” report, Science published one of the papers on XMRV and chronic fatigue syndrome

Murine leukemia viruses (MLV), including xenotropic-MLV-related virus (XMRV), have been controversially linked to chronic fatigue syndrome (CFS). To explore this issue in greater depth, we compiled coded replicate samples of blood from 15 subjects previously reported to be XMRV/MLV-positive (14 with CFS) and from 15 healthy donors previously determined to be negative for the viruses. These samples were distributed in a blinded fashion to nine laboratories which performed assays designed to detect XMRV/MLV nucleic acid, virus replication, and antibody. Only two laboratories reported evidence of XMRV/MLVs; however, replicate sample results showed disagreement and reactivity was similar among CFS subjects and negative controls. These results indicate that current assays do not reproducibly detect XMRV/MLV in blood samples and that blood donor screening is not warranted.

Reminds me of the Hornig study trying to find measles RNA in autistic children’s intestinal tissues. Multiple laboratories. No link found.

But, what of the older studies claiming a link? Well, Science also has a short article from some of the authors in an earlier paper. They reexamined samples from their study and found that their samples were contaminated with XMRV plasmid DNA:

Failure to Confirm XMRV/MLVs in the Blood of Patients with Chronic Fatigue Syndrome: A Multi-Laboratory Study.

In our 23 October 2009 Report, “Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome,” two of the coauthors, Silverman and Das Gupta, analyzed DNA samples from chronic fatigue syndrome (CFS) patients and healthy controls. A reexamination by Silverman and Das Gupta of the samples they used shows that some of the CFS peripheral blood mononuclear cell (PBMC) DNA preparations are contaminated with XMRV plasmid DNA.”

Again, this is very reminiscent. In testimony for the Omnibus Autism Proceeding, Stephen Bustin discussed contamination (and other) problems with the laboratory searching for measles virus in the samples provided by Andrew Wakefield’s group.

Science ran another article, False Positive, on the XMRV/chronic fatigue story:

For the past 2 years, a controversy has roiled around the purported link between a mouse retrovirus, XMRV, and chronic fatigue syndrome (CFS), a baffling, debilitating disease with no known origin. An October 2009 paper in Science found XMRV in the blood of two-thirds of the CFS patients examined, but more than a dozen labs have failed to replicate it to date. Millions of dollars have gone into clarifying the question, which has had far-reaching consequences for people with CFS and, if the virus lurked in the blood supply, the public at large. A nine-lab study published online this week by Science found that none of the labs could reproducibly detect XMRV or relatives of the virus in blood samples distributed under a blinded code. Science is also running a partial retraction of the original paper, as a contributing lab found that it in fact had a contamination.

More discussion can be found at the blog A Photon in the Darkness as Mikovits XMRV Study “Partial Retraction” and at ERV as XMRV and chronic fatigue syndrome: For your enjoyment– A magic trick.

Other studies have already looked closely and found no evidence of a link: PCR and serology find no association between xenotropic murine leukemia virus-related virus (XMRV) and autism. The current articles in Science do not directly address autism, but they show the serious difficulties involved with studying XMRV and help us to understand how these potential links were made in the first place.

Combating Autism Reauthorization Act signed by President Obama

3 Oct

The commitment to autism research by the people of the United States will continue at a high level. The Combating Autism Act has been reauthorized following the passage of the Combating Autism Reauthorization Act by the legislature and President Obama’s signing it into law.

From the White House Blog, this post by Micahel Strautmanis:

Every single day, I am proud and awed to be working for our President. But, some days simply take the cake. Just a few short months ago, I had a couple of those days. On April 1st, President Obama issued the first ever Presidential Proclamation to mark World Autism Awareness Day. Later that month, I had another special moment when Valerie Jarrett and Health and Human Services Secretary Kathleen Sebelius announced that the President and his administration fully supported reauthorization of the Combating Autism Act (CAA). As a father of a child on the autism spectrum, these were extraordinarily meaningful moments to me.

Today, President Obama signed into law the reauthorization of the CAA. I was once again reminded of the honor that it is to be working for a President who gets it — he knows that persons on the autism spectrum are at the heart of this issue.

I find the reauthorization and the entire process quite interesting. There wasn’t the testimony involved in the first Combating Autism Act. While there was certainly a push to get the reauthorization passed, there was a lack support from many organizations, from parent-led groups pushing vaccine causation to self-advocate groups. There doesn’t appear to be much, if any, discussion on vaccines. The CAA in 2006 even had some senators mention vaccines in the congressional record while discussing the passing of the act.

And this is something that intrigues me. I’ve always worried that the CAA was passed, at least in part, based on the perception that perhaps vaccines had a role in autism prevalence. Perhaps some legislative guilt at play. I worried that in 2011, with so much more known about the fact that MMR and thimerosal did not cause an autism epidemic, that congress might let autism research drop to a lower priority. The CAA had to stand on what was accomplished and what the prospects looked like for future research. In many ways, that’s a tough sell. Research doesn’t happen overnight. Even in 5 years. But, congress and the president are supporting the effort into the future. In these economic times, and in an election year, this was not a trivial accomplishment.

The Interagency Autism Coordinating Committee (IACC) will continue into the future. Congress is authorized to appropriate funds into the future.

Childhood mortality and vaccines

2 Oct

One of the ideas that gets presented as fact all too often on the internet is “the United States is the most vaccinated country in the world and has one of the worst childhood mortality rates”. There are variations of this, of course. Unfortunately, this notion gets put forth by autism-parents and even autism-parent organizations.

This sticks in my mind since a rather blatant attempt at misinformation from Generation Rescue in the form of a pseudo-paper “special report”: AUTISM AND VACCINES AROUND THE WORLD: Vaccine Schedules, Autism Rates, and Under 5 Mortality. I wrote about the many failings of that document at the time.

One major failing in the childhood mortality comparisons is that the U.S. measures infant mortality (which is a big piece of under 5 mortality) differently than other countries. As Bernadine Healy (a source highly respected by groups such as Generation Rescue) wrote:

While the United States reports every case of infant mortality, it has been suggested that some other developed countries do not. A 2006 article in U.S. News & World Report claims that “First, it’s shaky ground to compare U.S. infant mortality with reports from other countries. The United States counts all births as live if they show any sign of life, regardless of prematurity or size. This includes what many other countries report as stillbirths. In Austria and Germany, fetal weight must be at least 500 grams (1 pound) to count as a live birth; in other parts of Europe, such as Switzerland, the fetus must be at least 30 centimeters (12 inches) long. In Belgium and France, births at less than 26 weeks of pregnancy are registered as lifeless.

But why bring this up again? The reason is simple: I found a very interesting source of data and in reviewing it, I found information on vaccines and on childhood mortality: the Google Public Data Explorer. The Wold Bank dataset includes childhood and infant mortality figures.

What does the childhood mortality rate look like as a function of time for the United States? Not surprising (to most) it has been dropping over the past 30 years. In fact, from 1989 to 2009 the rate dropped from 12.1 per 1,000 to 7.8 per 1,000. (click to enlarge):

Why pick 1989 onward? This is the period when the vaccine schedule in the U.S. increased dramatically. If the idea that vaccines are somehow linked to worse childhood mortality we would expect this trend to be increasing, not decreasing.

Here is a good example of why we can’t say that correlation means causation. Consider childhood mortality for a country. Consider CO2 emissions for a country. Guess what, there is a big trend towards lower childhood mortality with higher CO2 emissions. (click to enlarge)

The “effect” (quotes mean it isn’t real) is huge. Note that the graph is a log-log plot. Countries with high CO2 emissions have 20 times, or more, lower childhood mortality. If we were in the “correlation equals causation” camp, we would decide that CO2 prevents childhood mortality. We could take this another step into the ridiculous and say, “Since CO2 emissions will coincide with higher atmospheric mercury due to coal burning and other sources, mercury must prevent childhood deaths”.

So keep that lesson in humility in mind as we play armchair epidemiologist and look further into the World Bank data. What is correlated with childhood mortality that might make sense? Being from a country in sub-Saharan Africa is correlated with high infant mortality rate. Low income countries have high infant mortality rates. Having a skilled person to attend the birth is correlated with low infant mortality rates.

Vaccines? What about them? They only have data for measles vaccine uptake. Again, not surprisingly, childhood mortality is lower for countries with higher measles vaccine uptake (click to enlarge)

I chose 2003 for the year for this comparison. That year has data as well for the fraction of births attended by skilled health staff. The datapoints are color coded with this to show that this is a big correlate. The more births have a skilled health worker in attendance, the more kids live. Could be a proxy for some hidden variable, but it makes some level of sense that having a health worker would reduce infant mortality. It also makes sense that countries with access to healthcare in general would have lower infant mortality.

But, that brings us back to the measles vaccine and infant/childhood mortality. Does the vaccine reduce infant mortality? Certainly in countries where measles is endemic. But measles vaccination isn’t the reason why childhood mortality figures are higher in, say, Chad than in the United States. And that’s why researchers try to control for other factors, like wealth and access to health care, when trying to correlate factors and diseases.

Otherwise, you end up with “mercury causes autism”. Or, using the World Bank data, “Cell phones cause low fertility rates”. Or other strange ideas.

While I think these data show pretty clearly that childhood mortality is not likely increased by vaccines, they also show the pitfalls of being an armchair epidemiologist. With the internet, data abound. One can find many correlations. Some are just random. Some are due to some unseen variable. Some are an indication of actual causation.

Do I believe that there is a reason why childhood mortality is lower in wealthy countries? Yes. Do I believe that there is a reason why childhood mortality is lower in countries with high CO2 emissions? No*. Both show correlations. What about the idea that measured autism rates went up as the exposure to thimerosal increased? Sure, there’s a correlation, just like with CO2 and childhood mortality. And, just like with childhood mortality and CO2, there are other factors at play.

*note–CO2 emissions are linked to countries with greater wealth. In that respect, yes there is a reason for the correlation. But there is no direct correlation of CO2 and childhood mortality.

Worries About Autism Link Still Hang Over Vaccines

30 Sep

A story just out from National Public Radio in the United States: Worries About Autism Link Still Hang Over Vaccines. Part of the survey on how the public views vaccines was a question on autism:

Do you believe any of the following are linked to vaccines?
1. Autism
2. Cancer
3. Diabetes
4. Heart disease

The answer: about 21% of Americans say yes to the autism/vaccine link.

The highest levels of “yes” were in those aged 35 to 64, with middle-income status, some college education and who have children.

About 1/4 said their opinions of vaccine had changed in the last 5 years, with about 60% of those responding that their opinions had changed for the worse.

Of the main reasons cited for vaccine fear, autism was the top. By far.

21.4% of respondents said they believe vaccines can cause of autism, 9.2% said they believe vaccines can be
linked to cancer, 6.9% believe they play a role in diabetes, and 5.9% cite a connection between vaccines and
heart disease.

Is this because there is actual evidence, or because of a vocal campaign to put the message of a vaccine/autism link into the public mindset? Well, since there is no convincing evidence of an autism/vaccine link (and a lot of evidence against the primary theories: mercury and MMR) I’d go with the media campaign as the reason this idea still has traction with the public.

And I’m not alone, at least in thinking that the effort of some vocal members of the autism community have had an impact. Last time such a survey came out, it was trumpeted by some of the more vocal sections of the autism-parent community, with one blogger telling his readership to take credit for an increase in belief in the vaccine/autism idea and fear of vaccines:

With less than a half-dozen full-time activists, annual budgets of six figures or less, and umpteen thousand courageous, undaunted, and selfless volunteer parents, our community, held together with duct tape and bailing wire, is in the early to middle stages of bringing the U.S. vaccine program to its knees.

What was even more disturbing than those words were the conclusion of the article:

…mark my words, the results from the next survey will show that the trust continues to erode. Keep fighting, parents, America is really listening.

Yep, Keep fighting. Not to get the message out, but to erode trust in public health. The message seems to have morphed over the years. From informing the public of an idea (albeit unsupported by good data) to one of fear. As we can see from the NPR/Reuters survey, the idea that vaccines and autism are linked is still out there.

We saw a form of this idea surface recently when Michelle Bachmann recently made comments linking the HPV vaccine and mental retardation. I sent an email to the National Vaccine Information Center asking about the Bachmann claim. Here is the response I received:

Sorry to just be getting back to you but we have been inundated with emails about Michelle Bachmann.There’s no information to support her claim and now she has withdrawn it.

I chose the NVIC for this inquiry because they are an organization which I believe has rather lax standards on proof of vaccine injury. If anyone were going to support Ms. Bachmann’s claims, it would be the NVIC. The fact is that even they see this as an unsupportable comment.

But to bring this back to the NPR survey: yes, there are concerns about vaccines in the American public. Concerns are one thing. We should all be concerned about such an important part of the public health system. Fears. That’s another thing. Unfounded fears. Discounted fears. That is yet something else. And we are at the point where unfounded fears and disproved fears are still promoted, largely by autism parents. And that is why autism parents like myself feel the need to counter the misinformation. Because these fears have consequences:

As parents fret, vaccination rates for kids have dipped. Childhood vaccination rates against measles, mumps and rubella (MMR), for instance, fell almost 3 percentage points to 90.6 percent in 2009 from the year before, according to data from private insurers.

As vaccine rates drop, the risks to us all, and infants in particular, rise. In the words of Simon Murch, colleague of Andrew Wakefield in the now-retracted Lancet study which fueled the modern fears of MMR and other vaccines:

“If this precipitates a scare and immunization rates go down,” Murch warned, “as sure as night follows day, measles will return and children will die.”

Fare Well, Lisa Jo

29 Sep

Lisa Jo Rudy, Autism guide for about.com, has entered her last post: A Farewell to the About.com Autism Site.

She puts out a number of parting insights. I quote one below:

Life is for living. Even (and perhaps especially) when your child is autistic. PLEASE get out there, have fun, enjoy life, enjoy your kids, don’t spend your life, love and treasure exclusively on therapies. Go fishing. Go swimming. Take a hike. Volunteer. Sing. Play. LIVE! And while you’re out there, look for ways to help your child with autism to join in the fun. Use your imagination, and help your child with autism to use hers. Introduce your child to his world, and to the people in his world. Help them to get to know and care about your child. It’s the community that, in the long run, will make or break your efforts to help your child succeed.

She has always had many writing projects ongoing, and will continue to write.

Combating Autism Reauthorization Act Passed by Senate and House

28 Sep

The Combating Autism Reauthorization Act has been passed by both houses of the US Legislature. President Obama is expected to sign this into law. The announcement from the Office of Autism Research Coordination is below.

Late Monday night, September 26, 2011, the Senate passed The Combating Autism Reauthorization Act (CARA) by voice vote. The bill was passed by the House of Representatives last week. The bill is now en route to the White House to be signed into law by President Obama. The reauthorization of this legislation will allow the continuation of the Interagency Autism Coordinating Committee (IACC) and several other important Federal autism programs for three years, until September 30, 2014.

The Office of Autism Research Coordination looks forward to continuing to partner with Federal agencies and private organizations to facilitate the activities of the IACC and serve the autism community

Sexual understanding and development of young people with intellectual disabilities: mothers ‘ perspectives of within-family context

28 Sep

Sexuality in others, especially family members, is just not a subject I want to consider. It’s no doubt a family culture thing. My parents have yet to have the talk about “the birds and the bees” with me, and I’m passing from middle age to that strange period in life where I’m not yet able to get discounts, but I don’t really expect to live to double my age (and isn’t that the definition of “middle” age?). Given my druthers (a word that pegs me as middle aged or older), I’d stall this intro until you, the reader, had noticeably advanced in age.

While I can put off writing about it, I have to face the fact that my kid, disabled or not, will mature. Will grow into a sexual being. How do I, a parent, address and support that?

I wish I had the answers. I wish I could put it off until some combination of school/friends/Internet/experimentation took over.

The recent paper which brought this question forward again is:

Sexual understanding and development of young people with intellectual disabilities: mothers ‘ perspectives of within-family context.

Here is the abstract:

The sexual development of young people with intellectual disabilities is a marker of their transition to adulthood and affects their sense of well being and identity. Cognitive impairments and a socially marginalized position increase dependence on their families to assist with sexual matters. In this study, the authors adopted a novel interpretive phenomenological analysis approach, asking 8 mothers to contrast their experience of supporting similarly aged siblings with and without intellectual disabilities. Acknowledgment of their nondisabled offspring’s sexuality was demanded by increasing autonomy, whereas continuing dependence of the offspring with intellectual disabilities hindered mothers who were addressing this intensely private and sensitive issue with them. The topic of sexuality brought to the forefront mothers’ fears about their offspring’s ability to cope with the challenges of adulthood

In the end, this study seems to focus on the experiences of the parents, their fears. Which is a valid subject for study. But I’m still wondering: what us the right approach for this parent to take? As with any parent, any kid, there is probably no single “right” approach. I hope that as time marches forward, some good approaches become clear.

Combating Autism Reauthorization Act Stalled in Senate

22 Sep

The Combating Autism Reauthorization Act recently passed in the U.S. House of Representatives. The next steps are approval in the Senate and, should that happen, signing by the President. Mr. Obama has indicated that he will sign. The senate, however, is a different story.

Disability Scoop discusses this in Senate Republicans Move To Derail Autism Act.

Just hours before, however, a clash on the Senate floor revealed fresh opposition in Congress to the measure. When the bill’s sponsor, Sen. Robert Menendez, D-N.J., called for his colleagues to give unanimous consent to the autism legislation, a group of Republican senators objected.

“All of us who object support autism research… but it makes absolutely no sense for us from where we sit to try to play scientist and physician,” said Sen. Jim DeMint, R-S.C.

It’s politics, so I don’t expect the short sound-bytes to be logical. The CARA doesn’t make legislature “play scientist and physician”. It does set up an infrastructure to plan for the research priorities, using researchers and stakeholders for input.

Another paragraph from Disability Scoop:

In addition to opposing condition-specific legislation, DeMint, who was joined by Sen. Tom Coburn, R-Okla., in speaking against the bill, said the measure was not necessary in order to continue current research programs which are funded under other appropriations bills.

Again, let’s consider what actually happens. The Combating Autism Act, and the re-authorization, don’t appropriate funds. They authorize the appropriations. Simply put, they are a plan for what will be authorized. But the Act doesn’t commit congress to make the appropriations. Consider it a statement of intent. A promise.

The Washington Times has a story: Standoff threatens autism research funding. This includes a statement by Senator Tom Coburn:

“What we are opposed to is tying the hands of the researchers and the directors at National Institutes of Health and telling them what they should do and how they should do it.”

I find this odd on two counts. Again, the Act does not tie the hands of people at NIH other than in the formation of the IACC to create a strategic plan and advise the Secretary of Health and Human Services.

As to telling the NIH what to do, what areas to focus upon. Well, there’s the National Cancer Institute, the National Eye Institute, the National Heart Lung and Blood Institute…you get the idea. The NIH has already created specific focus areas. The Combating Autism Act is not out of place in the way the NIH is run by congress.

The Times quotes Rep. Michael F. Doyle:

Mr. Doyle said he spoke with two senators who had concerns about the bill and that he “did not have an indication that there was an effort to block this thing permanently.”

If accurate, this places the current stall in the category of “politics”.

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