Archive by Author

To intentionally murder your child by burning him is shockingly evil

6 Aug

I’m with Judge Dempsy on this one. Evil. Shockingly evil.

An American woman has been convicted (and now sentenced to death) for the muder of her autistic son, Mason. WHNT news in Alabama carried the story, Judge Sentences Christie Scott to Death For Son’s Murder, on their website.

Here are some quotes:

In July, a jury found Scott guilty of three counts of capital murder for setting a fire in her home that killed her six-year-old son, Mason.

and,

During the trial, the state presented evidence that Mason, who was autistic, had a total of $175,000 worth of life insurance when he died. Christie Scott took out a $100,000 policy the day before her son died. Someone had also removed expensive jewelry and pictures from the home. Investigators also found an undamaged smoke detector in the ashes. It was believed to have been taken down before the fire.

And, this one just makes my eyes cross. Literally.

“To me, the fact that she chose that manner of death for a child that was scared of fire puts her in a category that not only is possible for death, it definitely deserves the death penalty,” says Rushing.

Changes

5 Aug

There is change at Change.org. The autism blog there is morphing into a new, broader, disability rights blog.

As Change.Org blogger Dora Raymaker says, “This is As It Should Be”. I think the idea of a disability rights blog is a good one. I think autism as a part of that disability rights blog is an excellent idea.

Both autism.change.org bloggers, Dora Raymaker and Kristina Chew have published their final change.org posts:

AR = DR = HR and Onwards into the Future!

and

Ave atque Vale, Change.org

(those familiar with Prof. Chew will likely be able to guess which post is hers without following the link. )

Both Ms. Raymaker and Dr. Chew will continue to work on disability rights/autism issues. Ms. Raymaker with ASAN’s change.org blog, the Oregon Commission on Autism Spectrum Disorder, ASAN, SAAL and AASPIRE. Dr. Chew with KristinaChew.com and her new blog Here We Go With Him.

It seems amazing to me that it has already been eight months since change.org started the autism blog. At the same time, it seems like a short stint for the autism blog. The idea to create a disability rights blog that includes autism is a great idea and I’m glad to see that the body of work Ms. Raymaker and Dr. Chew have created will be incorporated into the new blog.

Estee Klar has noted Kristina Chew’s move:

Kristina Chew’s recent post, Ave Atque Vale, reflected what I’ve been writing for nine months now but less forthrightly. She too recognizes that as Charlie grows, the need to blog and write has shifted focus to disability rights instead of vaccines, therapies and the like. I think it’s really interesting to see how many of our lives are parallel, and this is viewable by following bloggers who began writing in and around the same time (most of them are on The Autism Hub).

It does strike me that the early generation of web-vocal autism parents, with their myriad views, is moving from predominantly young-child based to facing more adult concerns. I am hopeful to see how the myriad views transform in the next couple of years. I am hopeful that autistic rights will become more prominent within the autism-parent discussions.

Change.Org was where I “met” Dora Raymaker. I’m glad she will continue to write. Mostly I’m glad that she will continue to work for disability rights.

As I started this post–there’s change at change.org. It looks like good change for the org and good change for the bloggers. I wish them all well in their future endeavors.

Penn looking for Post Doc in Autism Services Research

4 Aug

There is a great need for more and better research into services for autistics.   At the same time, there aren’t that many groups looking at services.

That’s why I was pleased to get the following job announcement in my email today. I’m glad to see more research and more people being brought into the field.  The announcement is for a post-doc position at U. Pennsylvania on “Interstate Variation in Healthcare Utilization among Children with ASD”.

This job is to work with David Mandell’s group, with the contact being Lindsay Lawer.  Name sound familiar?  She was first author on the paper Vocational Rehabilitation and Autistic Adults, which I blogged.

I don’t know if anyone will find the job from this blog. But, then again, I want as many good people as possible pulled into researching questions important to the autism community. So, here is the job posting:

University of Pennsylvania School of Medicine

Postdoctoral Training Fellowship in Autism Services Research

The Center for Mental Health Policy and Services Research (CMHPSR) invites applications for one- and two-year post-doctoral fellowships in children’s health services research, with a specific focus on the organization, financing and delivery of care to children with autism spectrum disorders. The fellowship is funded through a research grant from the National Institute of Mental Health entitled, “Interstate Variation in Healthcare Utilization among Children with ASD (5R01MH077000).” This study combines national Medicaid claims data, information on local healthcare and education resources, and state-level policy data to examine associations between policies and healthcare delivery to children with autism.

Fellows will receive training in health policy and services research methods and in the clinical presentation and care of children with autism. Training activities include intensive mentorship from a multi-disciplinary team of faculty, participation in didactic courses and lecture series, clinical observations, and guided research activities.

We seek applications from persons with a PhD or equivalent in psychology, sociology, public health, economics, social welfare, or other related fields. Preference will be given to applicants with strong statistical skills and those with previous experience analyzing administrative data. Knowledge of children with autism or other psychiatric/developmental disabilities is preferred but certainly not required.

Applications will be accepted throughout the year. Recent graduates and those seeking to enhance their skills in new areas are welcome to apply. Applications should include: 1) Cover letter and CV; 2) List of degrees, dates of conferral, focus of study & institutions; and 3) Current and permanent contact information (address, phone number, e-mail). Please e-mail complete applications to Lindsay Lawer at llawer@mail.med.upenn.edu.

For further information, please view our web sites at http://www.med.upenn.edu/cmhpsr and http://stokes.chop.edu/programs/car/.

(note: edited to correct who the principle investigator is on this project)

It’s time for David Kirby to disavow the autism epidemic

3 Aug

The idea that mercury caused an epidemic of autism is both wrong and very damaging to the autism communities. Many contributed to this damaging notion., but David Kirby without a doubt carries a good quantity of the blame for his book “Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy” and efforts since.

Mr. Kirby often tries to hide behind the notion that he is just “trying to spark a national debate”. Sorry, but that is nonsense. He actively promotes the idea that vaccines cause autism. It is unclear to this reader whether Mr. Kirby is currently being paid for his efforts. In the past he cherry picked information and packaged it in seemingly self-consistent packages to convince people that an epidemic did occur.

He has now moved to a tag-team approach for presentations to the US congress. He presents information to support the idea that vaccines could cause autism. He then let’s Mr. Mark Blaxill take over to promote the epidemic with the old, tired arguments.

It’s like Mr. Kirby still wants to be able to say, “I never really said there was an epidemic. I was just sparking a discussion.” It’s Mark Blaxill that is actually calling it an epidemic.

Nonsense.

This has been bothering me for some time. It came up again strong when Mr. Kirby commented on a blog piece. David Kirby doesn’t generally participate in the online discussions-even to the point of not answering comments on his own blog pieces. He broke that tradition recently in a blog piece on the Mother Jones website: Breaking: Vaccines still don’t cause autism

My response to Mr. Kirby incorporated much of what I was considering for a future blog post. So, rather than paraphrase what I wrote, here it is in full:

Mr. Kirby,

I see your usual arguments above. I see, also, the usual gaps in your discussion. Over the years, you have gone from promoting the “vaccines caused an epidemic of autism” to dancing around the subject of the false “epidemic”, neither stating that there was an epidemic, nor admitting your mistake. Could you comment somewhere, on the record: was there an “epidemic” of autism caused by mercury? You seem to leave that to your colleague, Mr. Blaxill, giving yourself some form of plausible deniability. It is irresponsible.

You rely heavily now on the NVAC recommendations. Why do you leave out so many comments by NVAC?

The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.

Are you prepared to agree with NVAC that the data are in and that there has been no epidemic of mercury caused autism? It would be the honest thing to do.

You rely heavily on the idea that mitochondrial disorders are related to autism. You pushed heavily on your blog the idea that mitochondrial disorders are caused by mercury, without substantiation. In fact, this idea is strongly rejected by the very experts you rely upon.

Further, you leave it implied that children with mitochondrial disorders and autism indicate a link to autism as a vaccine injury. This is clearly not the case.

Why do you leave out the fact that most children with mitochondrial disorders and autism do not show regression. Without regression, it is clear that vaccine injury is not causing autism in these individuals?

Why do you leave out the fact that in the one study of children with mitochondrial disorders and autism, it is clear that vaccines are not causal in the vast majority of cases, and could be questionable in the one case cited so far?

You cite that there could be a sizable population of autistics who have a mitochondrial dysfunction. Yet you leave out the public statements by one of the very doctors who supported the Hannah Poling case in vaccine court that any such injuries are rare. This from the few doctors who support the idea of mitochondrial disorder as a vaccine injury. Other specialists have stated that it is far to early to draw a conclusion that mitochondrial disorders caused by vaccination is even “rare”.

Why have you not removed your blog piece that was so erroneous that you were forced to rewrite it within a day, with an admission that you seriously erred? Isn’t that a form of dishonesty?

Are you prepared to join Rick Rollens, one of the strongest proponents of the vaccines-cause-autism notion, in stating that the idea that MMR causes autism has been tested and MMR is no longer suspect?

I will ask again, if you are going to cite NVAC, are you willing to join them and state that mercury did not cause an “epidemic” of autism?

Would you at least be willing to include quotes from NVAC that are, shall we say inconvenient, to the notion of a vaccine induced “epidemic” of autism? Quotes such as:

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

This quote makes it clear that
a) NVAC does not support the idea of an autism “epidemic” caused by vaccines
b) NVAC is not calling for studies of vaccines and autism due to evidence presented so far, but, instead, by public concern.

Mr. Kirby, your half truths and misleading arguments cause great harm to the autism communities, as well as to public health. You personally are responsible for much of the public’s misconception that mercury caused an “epidemic” of autism. Don’t you agree that you personally should publicly refute your previous stance?

Being wishy-washy on the epidemic question and letting your colleague Mark Blaxill push the idea in your tag-team briefings is just dishonest. Either you still believe in the mercury-caused-epidemic (and you are wrong) or you should be clear that it was a mistake.

It was a mistake. Earn some respect. Admit it.

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.

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