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New national autism strategy launched in UK

3 Mar

Download:

1) Equality Impact Assessment

2) Fulfilling and rewarding lives – The full strategy

Its a fairly momentous day for autism in the UK. The gvmt has finally launched its national autism strategy and placed adults at the heart of it. The first step:

…the Department of Health is funding a study to explore rates of autism in a representative samples of adults in England and build on the small-scale study which began in 2008 to help identify a suitable way for improving the accuracy of estimating prevalence in the adult population.

I think this is a commendable first step. Accurately estimating prevalence is vital to any strategy. It should also be noted that the strategy is ensuring adults across the entire spectrum are included:

In addition, the Department of Health, as set out in Valuing People Now (2009), is committed to establishing a new three-year Public Health Observatory (PHO) in relation to people with learning disabilities. The work of this new PHO will include the collation of existing data on the prevalence of people with autism who also have a learning disability, what services they access, and the quality of those services.

The best place to get a grasp on the entire strategy is with the Executive Summary starting on page 6. The first point reads:

The Government’s vision is that ‘All adults with autism are able to live fulfilling and rewarding lives within a society that accepts and understands them. They can get a diagnosis and access support if they need it, and they can depend on mainstream
public services to treat them fairly as individuals, helping them make the most of their talents.

I tend to be skeptical of government strategies but I very much like how this one came about (autistic adults were included as part of the consultation) and the goals it sets out – i.e. recognising that autism is a lifelong thing and trying to set out how to make things better for adults with autism. I hope its successful.

One reason why I vaccinate

3 Mar

I know this isn’t at all autism related, but this story just keeps bugging me.

South Bend couple loses baby to pertussis

The story is heartbreaking. A couple has fertility problems and tries for years to have a baby.

But the couple’s desire to have children soon turned to heartache as Katie suffered miscarriage after miscarriage.

“We started to think that it would never happen,” Craig said during a recent interview at the family’s home.Katie later went to see a specialist in Chicago and was diagnosed with a rare blood clot disorder that doctors said was affecting her ability to carry a baby to full term. She was prescribed medication.

Finally, after five years, Katie became pregnant with a baby girl that far surpassed previous pregnancy terms.

They finally have a baby, only to lose her at one month from pertussis.

Days later, pertussis tests came back positive.The diagnosis blindsided the family. How could Callie have contracted the illness? She had been far too young to yet be immunized against the bacterial infection. Series of shots against pertussis do not begin until infants are 2 months old.

The couple had also kept outside family and friends away while Callie was home in an effort to protect her from sickness. She had been home from the hospital only 2 1/2 weeks.

St. Joseph County coroner Dr. Michael O’Connell confirmed to The Tribune that Callie likely died of an infectious-type illness such as pertussis, but he said conclusive tests will not be complete for several more weeks.

These sorts of stories are very difficult to discuss. This family is going through pain beyond anything in my experience and I certainly don’t want to add to that. But this story is a real example of one reason I vaccinate myself and my family. I can’t imagine thinking that I or one of my family had passed on an infectious disease to a family with an infant or someone else vulnerable.

DSM V and Rett Syndrome

2 Mar

Sullivan recently posted about the proposed changes to the DSM V that would include dropping Aspergers and PDD-NOS. However, whats not so widely realised is that the changes also encompass Rett Syndrome, proposing dropping it entirely.

Rett was originally included in the DSM because it was a disorder with autistic features of an unknown cause. Now that the genetic cause has been identified, the rationale for removing Rett is that it is more its own distinct entity. Another reason pertains to the transient nature of autism features in Rett patients.

However, this may be a very short sighted move. RSRT scientific advisory board member and Rett Syndrome researcher Huda Zoghbi , M.D. discussed the reasons for this on the Rett blog:

I actually do not agree with this approach. I think the approach should be to see what clinically fulfills criteria for autism. I would be in favor of a more precise categorization and dividing DSM V into two types: DSM V A and B. One would be used for syndromic autism and one would be non-syndromic autism. There would be genetic etiologies for both syndromic and non-syndromic. Currently most of the known genetic causes are for syndromic autism but in time, as we do more sophisticated sequencing and we study patients with simplex autism (one case in a family, with no features other than classic autism) we will find etiologies for non-syndromic as well. In my view this would be a much more useful distinction. Bottom-line: having a known genetic cause should not eliminate a disorder from DSM V.

Whats not widely known about Rett is that not all females with a diagnosis of Rett have an identified mutation. Conversely there are females with MECP2 mutations who do not have Rett Syndrome symptoms. Removing Rett from the DSM V seems to be cutting these females off from autism entirely.

The DSM V could be a huge clinical step forward but not at the expense of cutting off people from the support and services they need.

Parental Vaccine Safety Concerns in 2009

1 Mar

A paper in today’s issue of pediatrics looks at vaccine safety concerns amongst parents. The paper

Parental Vaccine Safety Concerns in 2009
by
Gary L. Freed, Sarah J. Clark, Amy T. Butchart, Dianne C. Singer, and Matthew M. Davis. All of the University of Michigan.

the abstract states:

OBJECTIVE: Vaccine safety concerns can diminish parents’ willingness to vaccinate their children. The objective of this study was to characterize the current prevalence of parental vaccine refusal and specific vaccine safety concerns and to determine whether such concerns were more common in specific population groups.

METHODS: In January 2009, as part of a larger study of parents and nonparents, 2521 online surveys were sent to a nationally representative sample of parents of children who were aged ?17 years. The main outcome measures were parental opinions on vaccine safety and whether the parent had ever refused a vaccine that a doctor recommended for his or her child.

RESULTS: The response rate was 62%. Most parents agreed that vaccines protect their child(ren) from diseases; however, more than half of the respondents also expressed concerns regarding serious adverse effects. Overall, 11.5% of the parents had refused at least 1 recommended vaccine. Women were more likely to be concerned about serious adverse effects, to believe that some vaccines cause autism, and to have ever refused a vaccine for their child(ren). Hispanic parents were more likely than white or black parents to report that they generally follow their doctor’s recommendations about vaccines for their children and less likely to have ever refused a vaccine. Hispanic parents were also more likely to be concerned about serious adverse effects of vaccines and to believe that some vaccines cause autism.

CONCLUSIONS: Although parents overwhelmingly share the belief that vaccines are a good way to protect their children from disease, these same parents express concerns regarding the potential adverse effects and especially seem to question the safety of newer vaccines. Although information is available to address many vaccine safety concerns, such information is not reaching many parents in an effective or convincing manner. Pediatrics 2010;125:654–659

The study was a survey of households with children. They contacted extra Hispanic and African-American households to get better statistics on those groups. But they normalized the data to account for this “oversampling”.

Table 3 shows that 11.5% of parents have rejected at least one recommended vaccine. Most listed the HPV (human papillomavirus) as the rejected vaccine. HPV is new, and is given to teenage girls to prevent a viral infection known to be a cause of cervical cancer. (click to enlarge)

Parental Vaccine Refusal

Table 4 shows parental attitudes for a number of vaccines. Reasons for rejecting vaccines vary from “I would rather my child got this disease” to “I personally know someone who experienced a harmful adverse event”. (click to enlarge)

Parent experiences and attitudes on childhood vaccines

The survey explored the views of parents on the autism/vaccine question:

One current specific immunization safety concern has been the spurious association of vaccines with autism. Although peer-reviewed original scientific research and multiple expert committees that have reviewed all available data on this issue have failed to show any association between vaccines and autism, anecdotally the concern continues to affect parents. Our study indicates that a disturbingly high proportion of parents, >1 in 5, continue to believe that some vaccines cause autism in otherwise healthy children. This finding indicates that current public health education campaigns on this issue have not been effective in allaying the concerns of many parents. Officials must attempt to develop more effective and targeted education campaigns that focus directly on this issue if their goal is to match parents’ level of concern with the available scientific evidence. Recently, the use of newer social marketing techniques have been suggested as potential strategies to address vaccine safety concerns.

>1 in 5 believe the “vaccines cause autism” story. Amazing. I’m sure that will be seen as a both a victory and a challenge to the groups pushing that message.

I hate to say it, but someone needs to. This study may be the most valuable study the trial lawyers working on autism/vaccine cases have seen. Much more so than the bad science of the Geiers or the speculation in Medical Hypotheses. Where this will be valuable will be in helping select a jury that is as sympathetic to their cause as possible.

Did TACA change the rules to deny a blogger attendance at a conference?

27 Feb

Two years ago, AutismNewsBeat was Expelled! from an autism “conference” (AutismOne). Today, he was denied admission to the TACA Real Help Now Conference in Wisconsin.

TACA’s stated policy on the website is:

TACA strives to ensure that the focus of our conference is education and support, and to provide a safe, supportive environment for our attendees. TACA reserves the right to refuse admittance to any individual.

But this seems to be a new addition to the website. The Google Cache version of that page, from February 11, doesn’t have that language at all.

Two years ago, AutismNewsBeat attended a conference and did what many other parents were doing: he videotaped.

That didn’t get him thrown out (although it was used as the excuse for why he was thrown out)

What got him thrown out was asking an important question in a respectful manner:

I also attended a Q&A with Dr. Jon Poling, MD, PhD, and his wife, Terry. The Polings have been on a media blitzkrieg since March when they were identified as test case petitioners in the Vaccine Omnibus hearings. The details of the case are shrouded in speculation, since the Polings have not publicly released their daughter’s relevant medical records. I asked the Polings if they plan to release those records soon. Terry Poling said she and her husband would not discuss their daughter’s case as long as there was ongoing litigation.

Soon after I asked my question, a hotel security official asked me to turn off my video camera. At the conclusion of the Q&A, 15 minutes later, I was surrounded by hotel security and escorted out of the building. I had registered six weeks earlier as media, and received a confirming email. I was handed a press pass and told to fill it out myself at the registration desk Friday morning, after being told the computer system was down and my name could not be pulled up. But the conference organizers were having none of it, although by now Westin security no doubt realizes I was totally truthful and cooperative, even turning over my driver’s license for photocopying.

The story as to why AutismNewsBeat was expelled has changed over time.

The first was that I had snuck into the gathering without registering. When conference organizer Ed Arranga realized that I was indeed registered, the story changed to “you broke your agreement not to videotape any of the meetings.” There was, of course, no such agreement, and no evidence of such an agreement. I filmed openly for two days without incident, as were dozens of other parents, not to mention film crews from local television stations. So that couldn’t be it either.

So, now he has been denied entry to a conference for a reason which may not have been in effect when he registered.

It should be noted that after AutismOne, AutismNewsBeat did what many people have done before: he posted his videos to YouTube. Videos such as this one from an autism and the media session.

Perhaps AutismNewsBeat breaks the unwritten code: don’t expose those parts of the autism parent conventions that are best kept behind closed doors.

In praise of pediatricians

27 Feb

Caught in the crossfire of the autism/vaccine debate are the pediatricians. Often the discussion of vaccines and autism devolves into insinuating that pediatricians all know about vaccines causing autism, but they make most of their much money from vaccines.

It is a disgusting lie, and one so transparent.

Maybe I have the only good pediatrician in the free world. Who knows, it could be true. But that guy has stayed with us and our kid at the hospital until midnight, stayed on the phone with the nurses until 2am, and then showed up again a 8am to review the lab tests from the previous day. On another occasion, that guy woke up every two hours through the night to check in with nurses to monitor the lab results and adjust the treatment.

It is very clear when we are in the waiting room of his office that most people there are not there for their kids vaccines. How anyone can say that pediatricians make most of their money from vaccines is beyond me. It is just so plainly, clearly a lie.

Maybe I have the only good pediatrician in the world. I kinda doubt it.

Here’s to pediatricians. They are good people fighting the good fight.

Successful blogging by Steven Novella: the Desiree Jennings story

26 Feb

I stayed away from this story until now. It isn’t about autism at all, except that “Jenny McCarthy and Jim Carrey’s Autism Organization–Generation Rescue” decided to take the story on. Why a supposedly autism organization took on the story of an adult who was supposedly injured by a flu vaccine is not clear to this reader. But, this story shows the power of quality blogging to affect the discussion of a national topic.

Short version of the story: Desiree Jennings was given a seasonal flu vaccine. Sometime after that she developed problems in movement and speech. She attributed these problems to the vaccine, citing dystonia as the condition. This was questioned by some bloggers, including a neurologist, Dr. Steven Novella. As a neurologist, Dr. Novella is experienced in conditions such as dystonia. Ms. Jennings was treated by a well known name in the autism-alternative-medicine community, Dr. Rashid Buttar. The story was given national attention, including a segment on the U.S. TV show Inside Edition.

The whole story of the alleged vaccine injury is long and strange. The current status, it gets even stranger. Ms. Jennings appears to have made a full recovery, walking and driving a car. She talks better, with the addition of a rather strange accent. This was found when Inside Edition decided to do a followup on Ms. Jennings, apparently after reading Dr. Novella’s take on the story. From Dr. Novella’s recent blog post:

Another angle to this case was the mainstream media coverage. The story was made national primarily by an Inside Edition segment in which they took her claims of being horribly injured by the flu vaccine at face value. They did throw in a caveat that doctors say the story should not dissuade the public from the vaccine (the “not” was incredibly and deceptively edited out in the YouTube version of the story). But generally it was among the worst science reporting of 2009.

So I was a bit surprised when I was contacted by a producer from Inside Edition about a possible follow up segment on the story. He had read my blog posts on Ms. Jennings and realized they got the story entirely wrong. To his credit he wanted to do follow up (unfortunately rare in mainstream journalism) and tell the real story. This resulted in the segment that aired last night

One reason to bring this story up now is highlighted by Dr. Novella: the effect of science bloggers on a major news story:

And finally (if you will forgive the self-serving observation) the story highlights the new power of the science-blogging community. The Inside Edition follow up segment was entirely due to the science bloggers who covered the story – and told the real story behind the media sensationalism. We are influencing the media cycle in a good way. At the very least we are making ourselves a valuable resource to the mainstream media, and hopefully raising the quality of science journalism in general.

Dr. Novella did well in blogging this story, and Inside Edition did well to reconsider the story in light of the well-reasoned discussion of Dr. Novella.

Video of the recent Inside Edition segment is here:

ABC Radio interviews Brian Deer

25 Feb

RearVision, an ABC (Australia) radio news program, has an interview with Brian Deer titled The MMR vaccine scare. They have both audio and transcript available.

Even before Keri Phillips of ABC gets to Mr. Deer, she makes it clear that this isn’t going to be some fluff piece with faux-balance:

What Richard Horton didn’t know at the time, and neither did some of Wakefield’s 13 co-authors, was that some of the claims in the paper were false. It wasn’t bad science but rather outright fraud that ultimately led to the finding of misconduct against Andrew Wakefield. We’ll come to that in a moment, but first, what really set this story running was a press conference that Wakefield held at the Royal Free Hospital where he worked as a gastroenterologist.

My guess is that most readers here know the Wakefield story, so I won’t quote discussion of that. I will note the suggestion of moving away from anonymous peer review made by Trisha Greenhalgh. I, for one, am not in favor of that. I feel that referees will be less critical if they know that the authors will know the referees names.

Here is a closing statement by Brian Deer:

The thing that really concerns me is that there’ve been three kinds of victim in all of this. Firstly there’ve been children who’ve developed measles, and we’ve had children in the UK who’ve died of measles as a result of this. They’re the first victims. The second victims are parents who really agonised and gone through hell over whether they should vaccinate their child. But there’s a third kind of victim, which I think people often forget, and these are parents who blame themselves for their child having autism because they took that child to be vaccinated. And you can imagine the nightmare that these parents go through, and I’ve spoken with some of them, and I’ve had mothers just collapse sobbing saying, ‘Not a day goes past when I don’t blame myself for taking my child to be vaccinated. It’s my fault that he’s got autism, it’s my fault that his life will never be the same as that of other children.’ And I really feel for those parents, and I think we should remember these victims of this scare because these mothers have suffered.

Then there are those of us who have seen 12 years of “autism” advocacy groups who can’t concentrate on anything but vaccines and 12 years of useless research trying to support what Keri Phillips calls not “…bad science but outright fraud.”

Mother Jones and Boston Globe on the DOJ investigation of the Judge Rotenberg Center

25 Feb

The recently opened Department of Justice investigation on the Judge Rotenberg Center is being noticed by the media.

Mother Jones has a piece, ‘School of Shock’ Under Federal Investigation, which references their 2007 article, School of Shock.

From the recent piece in Mother Jones:

“The initial response of the Department of Justice was that they didn’t believe that they could take action because they didn’t believe they had jurisdiction over privately operated facilities,” wrote Nancy Weiss of the National Leadership Consortium on Developmental Disabilities. “I suggested to them that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities.” Weiss reported that the DOJ couldn’t give her an estimate on how long their investigation would take.


US opens Canton school inquiry
Shock discipline at Rotenberg center prompts concern

From that article:

Renee Wohlenhaus, deputy chief of the Disability Rights Section of the Justice Department, said in a letter last week that her agency would look into whether the Rotenberg Center violates the nation’s laws on the fair treatment of the disabled. She did not respond to a request for an interview.

While Wohlenhaus’s letter referred to the inquiry as a routine investigation, federal officials and disability advocates say the investigation is significant because the agency does not choose to probe all complaints they receive.

Nancy Weiss, director of the National Leadership Consortium on Developmental Disabilities and the author of the letter on behalf of the disability groups, said her conversations with Justice Department officials lead her to believe that their probe will be far from “perfunctory.’’

I’ll point out that Kev can be counted amongst the many bloggers who have discussed the JRC in the past. His piece, Judge Rotenberg Center has more comments than I can recall for any piece on this blog.

Addenda: Add UPI with Feds probe school’s shock treatments

and the Boston Herald: Feds probe special needs school

And the Washington Post: Feds probe Mass. special needs school

And FoxNews Boston: Feds Probe Massachusetts Special Needs School That Used Shock Therapy

Education News fumbles on the Judge Rotenberg Center investigation story

25 Feb

I recently blogged about the U.S. Department of Justice opening an investigation on the Judge Rotenberg Center (JRC). Many of the children in the care of the JRC are subject to electric shocks as part of their program.

EducationNews.org picked up the blog piece I wrote and copied it to their own blog, with one major difference. They added an introductory paragraph taken directly from the JRC’s website.

The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors.

This changes the tone of the story dramatically and gives the reader the impression that I believe that the JRC is “very effective”.

Here is my comment on their blog:

As the person who wrote (most of) the piece above, I am both glad that Education News has decided to pick up this story and, quite frankly, angered at the way it has been handled.

I was not contacted before Education News ran this piece. Had they done so, I would have certainly given permission to run the piece–as it was written. The opening paragraph was added to my piece without permission. That paragraph is how the Judge Rotenberg Center portrays itself, being a direct quote from the home page of the JRC website:

” The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors”

“JRC has provided very effective education and treatment” frames the piece in a completely different manner than I intended.

Again, I would gladly give permission for the use of this piece, in its original form.

For the record, I am the parent of a child with multiple disabilities. In my state, aversives are illegal. Under no circumstances would we allow the JRC to operate here.

I would encourage readers to read the letter and addendum and ask again can we “condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population”?

Education News has yet to respond either on their blog or via email.

I am glad that the news is getting out about the investigation (more on that soon). I’d be totally fine with Education News copying my post–if they did it accurately. I want this message out there, but don’t tag the “JRC is very effective” message to my name (or pseudonym, as it is).

(note, I corrected EducationNews.com to EducationNews.org, and added a link to their post)

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