Eunice Kennedy Schriver passes

11 Aug

Eunice Kennedy Schriver has passed away. She was a part of the Kennedy clan as sister to Senator Ted Kennedy and President John F. Kennedy. She was also an advocate for the intellectually disabled. At a time when families, especially prominent families, hid their disabled relatives, she went public about her sister, Rosemary. She founded the Special Olympics.

Her family has issued the following statement:

She was the light of our lives, a mother, wife, grandmother, sister and aunt who taught us by example and with passion what it means to live a faith-driven life of love and service to others

President Obama is quoted as saying:

“But above all, she will be remembered as the founder of the Special Olympics, as a champion for people with intellectual disabilities, and as an extraordinary woman who, as much as anyone, taught our nation — and our world — that no physical or mental barrier can restrain the power of the human spirit”

CNN has a quote Mrs. Schriver made before her passing on her work with the intellectually disabled.

Most people believe I spent my whole life really interested in only one thing and that one thing is working to make the world a better place for people with intellectual disabilities.

“As important as it has been, it is not the whole story of my life. My life is about being lucky as a child to be raised by parents who loved me and made me believe in possibilities. It is also about being lucky to have had these extraordinary children. … It is also about being especially lucky to have a wonderful husband.”

Autism Omnibus: Cedillo appeal denied

11 Aug

In the Autism Omnibus Proceeding there were three “test case” hearings to decide if autism can be considered a “vaccine injury” due to MMR. In all three cases, the special masters (judges) decided that there wasn’t enough evidence. In fact, it “wasn’t even close”.

All three have been appealed. The first appeal was denied a few weeks ago.

The second appeal decision is in, for the test case that was the hearing for Michelle Cedillo. This case had the most “general causation” information and so was the most complicated.

As with the Hazelhurst appeal document, this document is a very good summary of the hearing.

Here is the summary of the appeal arguments:

The Cedillos assert seven arguments in their motion for review to show that the Special Master’s decision is arbitrary, capricious, an abuse of discretion, and contrary to law: (1) A panel of three Special Masters should not have heard the general causation evidence; (2) The Special Masters should not have allowed the last-minute expert reports and testimony of Dr. Stephen Bustin; (3) The Special Master improperly discounted the medical diagnoses and opinions of Michelle Cedillo’s treating physicians; (4) The Special Master improperly ignored concessions made by Respondent’s expert witnesses; (5) The Special Master ignored important aspects of Michelle Cedillo’s evidence; (6) The Special Master abused his discretion by refusing to consider important post-hearing evidence; and (7) the Special Master’s decision was contrary to law. Petitioners’ arguments four and five include multiple sub-parts, specifically raising the testimony of six expert witnesses and seven substantive areas of Petitioners’ evidence that the Special Master allegedly mis-evaluated.

Probably the key to the entire MMR-causes-autism idea, and the first subject that the appeals judge covered was the question of whether measles virus can be considered to persist in intestinal tissue. The petitioners case in this respect depends heavily on studies by Dr. Wakefields group and samples taken from Michelle Cedillo which both rely on the Unigenetics laboratory of Dr. O’Leary.

Without the test results of the Unigenetics Laboratory, Petitioners have lost a cornerstone to their causation theory. The fact that Petitioners did not prove the existence of any persistent vaccine-strain measles in Michelle Cedillo’s body leaves Petitioners well short of meeting their prima facie case that the MMR vaccine played any role in causing Michelle’s autism. Under these circumstances, Petitioners failed to meet their burden of proof by a preponderance of the evidence, and thus the burden never shifted to Respondent to rebut Petitioners’ proof. See Althen, 418 F.3d at 1278. The Special Master’s decision regarding the Uhlmann Study and the Unigenetics testing is reasonable in all respects, and could not in any sense be regarded as arbitrary, capricious, or an abuse of discretion.

Since the MMR test cases were heard, another very important study has been published, further showing that there is a lack of persistent measles virus in children with autism and bowel problems.

Without going into the details on the other points in the decision, we can jump to the conclusion and see that it is succinct and clear:

The issue before our Court is not to determine the causes of autism. The Court can only hope that medical professionals succeed in identifying the causes and developing a cure for this tragic disease. Rather, the Court’s task is to weigh the Special Master’s February 12, 2009 decision under the applicable review standards of the Vaccine Act, and determine whether it should affirm or modify the decision to any extent. After performing this review, the Court is satisfied that the Special Master’s decision is rational and reasonable in all respects, and is in accordance with law. For the reasons addressed above, the Special Master’s decision is AFFIRMED.

Or, to put it more succinctly:

Petitioners still have the burden of proving their claims by a preponderance of the evidence, and the Special Master reasonably concluded that they failed to do so.

There is still one more MMR appeal in the works. Given the results of the first two, my guess is that the attorneys are preparing for the next step in the journey towards a civil case.

Without more evidence to support their case, I would have serious doubts about the MMR hypothesis winning in a civil trial. Since the omnibus hearing, there is more good evidence against the MMR hypothesis and the plaintiffs will face more stringent evidence rules.

Autism and Vaccines: IACC and NVAC met on July 15

8 Aug

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

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

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

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

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

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

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

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

Luckily, someone sent me the slides from the meeting.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jenny McCarthy needs to learn: autistic is not psychotic or crazy

6 Aug

Last year Amanda Peet had a story in Cookie Magazine. She came out very pro-vaccine. Jenny McCarthy “jumped” on the story (delayed to be coincidental with Jenny McCarthy’s need for publicity).

This year, Cookie Magazine has a story with Jenny McCarthy. There is a lot bad in there. I am saving the worst for last (you can skip to the bottom if you want).

As to be expected in a magazine article about a celebrity, Ms. McCarthy is pushing her own business interests. In this case, her educational DVD collection:

“Through a series of entertaining vignettes featuring a cast of kids (including Evan), puppets, and dolls, the DVDs model correct social behavior and tackle everything from sharing and patience to maintaining conversations with friends to sibling rivalry. “Any parent will tell you that her kid watches a show and imitates it,” McCarthy says of her inspiration for the idea.”

I find that statement really strange for educational videos targeting autistic kids. I can think of a number of parents of autistic kids who would disagree with “Any parent will tell you that her kid watches a show and imitates it” From the book “Educating Children with Autism” by the National Academies Press:

Studies over longer periods of time have documented that joint attention, early language skills, and imitation are core deficits that are the hallmarks of the disorder.

Another quote from the Cookie Magazine story:

McCarthy’s widely publicized journey began in 2004, when her son had a seven-hour seizure and went into cardiac arrest. When he got home from the hospital, Evan was put on a heavy dose of antiseizure medication, which kept him awake for four days and induced hallucinations that made him not recognize his mom and bang his head against the wall until he bled. “I ran out of my house and into my driveway and screamed at the top of my lungs to God to just take him away, because I loved him so much and he was in so much pain,” McCarthy says of the period she describes as her “second rock-bottom” (the first being the moment Evan’s heart stopped momentarily).

A couple of observations.

First, I wish Cookie Magazine had clarified the point as to how long after his vaccination the seizure came. His MMR was at 14 months, his first seizure was after he was 2.

Now for the second. Did Jenny McCarthy really write that she had wished her child would be taken by god?

I didn’t want to blog this story. Why give Jenny McCarthy more publicity? Well, here’s the paragraph that made me want to blog:

McCarthy is leading a more normal life now, too, after having felt very alone in her first marriage, to Evan’s dad, and suffering what she calls a “breakdown” two years after Evan went into cardiac arrest and suffered those terrifying seizures. “When your kid is psychotic or crazy, you go into this place of shock so you can remain calm,” she says. “A problem a lot of moms [of autistic children] have is that they need to get out all [their emotions] later. I kept mine bottled up for two years, and then I finally released all this pent up fear, sadness, and anger. I just cried and cried and cried and cried and cried.”

“When your kid is psychotic or crazy, you go into this place of shock so you can remain calm”

I just don’t know what to say. Autism is not “crazy” or “psychotic”. Why is this woman chosen by the press to represent autism?

Maybe next year Cookie Magazine could interview a mother who is autistic or, at least, has an autistic child.

Asperger Syndrome is not a disability, just ask Lenny Schafer

6 Aug

Lenny Schafer wrote one of the most insulting comments I have seen on the Age of Autism blog in a long time. This is actually old news–the comment was made on Luly 13th. I missed the comment, but how did I miss that it was, no kidding, picked as an award winning “comment of the week” by the “editors” of the Age of Autism blog.

If you didn’t see it, here is Mr. Shafers, award winning comment from the Age of Autism blog:

“Disability” is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term “disability” with “disadvantage”.

Also, the term “high functioning autism” is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps “HighER Function Autism” might make more sense because it is not self-contradictory. (We then wouldn’t need the redundant “Low Functioning Autism” label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won’t go into here. However, we are stuck with it. Let’s get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

There is so much that can be said, point by point, in response to Mr. Schafer’s comment. But my guess is that most readers of this blog need no commentary to realize what a grossly insulting statement Mr. Schafer made.

What boggles the mind even further is that this was a comment to Mr. Jake Crosby’s piece, “Autism, Asperger’s: Who is Truly Disabled?“, a piece all about how Asperger syndrome truly is a disability. Mr. Crosby’s concluding statement in that piece was:

Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

While we have disagreed on some points, Mr. Crosby and I have been having a good discussion in the comments of this blog. I believe we both agree that Asperger Syndrome is a genuine disability. I couldn’t see him agreeing with Mr. Shafer’s comments, so I went digging to see what comments Mr. Crosby made.

Here are two comments by Mr. Crosby in response as posted to AoA:

I’m a contributing editor to this site, but played no role in Lenny Schafer winning the “comment of the week.” His comment isn’t just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

and

Schafer’s post is wrong on so many levels. It is the comment of the week alright, the worst comment of the week.

I almost didn’t post Mr. Crosby’s comments. I didn’t want to go for the easy, “look there’s dissension in the ranks at AoA” message. As I said above, Mr. Crosby and I don’t see eye-to-eye on all subjects. But I can still recognize and respect the courage it took to speak out like that. Mostly, it is worth noting that Mr. Crosby doesn’t share Mr. Shafer’s opinion.

The Age of Autism has officially closed comments to Mr. Crosby’s piece and to the “commenter of the week” post.

I’d love to see the comments they deleted.

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.

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