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Let’s Talk Autism – next live Prime Ministerial Debate

26 Apr

I just received this message from Carole Rutherford at Autism in Mind and ask all UK readers to join us in trying to get autism discussed at the final televised debate between the party leaders.

The final Prime Ministerial debate takes place on Thursday night. The final debate is about the economy. It is estimated that there are at least half a million children and adults who have a diagnosis of autism. There are many more who have the condition without the diagnosis. There could be as many as 6 million families in the UK alone who are living with autism.

Autism-In-Mind and Asperger Syndrome Action by Parents want the leaders to talk about autism on Thursday night and we need your help now. We want you to submit the following question onto the BBC ‘Election Question’ form. The question is wrapped around the economy and how the money that is being spent on autism every year is being spent. It is important that we all ask the same question. We want 1000,s of people to ask this question by Thursday Night and if we can achieve this then maybe someone will listen to us and will talk about autism.

Question to submit to the BBC

A recent study by researchers at King’s College London estimated that autism costs the UK economy around £28.2 billion per year, and yet thousands of autistic/Asperger syndrome children and adults do not meet the criteria for any provision or services. Autism/Asperger syndrome requires services from the cradle to the grave. The only money attached to the newly published Autism Strategy will be half a million pounds for increasing awareness and understanding of autism among frontline professionals with nothing for service provision.

In the first debate there seemed to be recognition from all three parties that there is a huge social care agenda to be addressed in the future, but will it include autistic/Asperger syndrome and disabled people and what guarantee can you give that it will include them? How are you going to make sure that EVERY autistic child and adult is not left until crisis point before they are given the provision that they need? Many of us would like to know how much of the £28.2 billion is being spent on crisis management.<?b>

Here is where you post the question – you do have to give your name and where you live. You do not have to add a telephone number if you do not want to. If you do want to add this number 07960875526 this phone will be deactivated after Thursday night.

http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm

Here are some facts and figures produced about Autism last year by the National Audit Office – This might help you to understand how important it is for the Leaders to ‘Talk about Autism’ on Thursday night.
http://www.youtube.com/watch?v=eEKMsO9t0pU

Tags: , ,

Mum rejects autistic daughter

26 Apr

A terribly sad story from Romania involving a teen autistic girl adopted at a young age and now seemingly rejected by the adopting family.

Mihaela Popa adopted the girl aged 18 months in 1999 but claims doctors failed to tell her she was suffering from the developmental disability. She has now asked a court to overturn the adoption so she can get rid of the teenager.

This poor young girl has also been abandoned by her own parents at birth and now faces a massively uncertain future.

Of course the reversal must happen – who would want that poor girl to be saddled with a parent who didn’t want her? – but this adopting ‘parent’ should not, in my opinion, escape this sordid episode without some form of censure. At the absolute least, one would hope she would be banned from ever being allowed to adopt again.

Some people simply don’t deserve to be parents.

Plan and Prepare: Transition to Adulthood Conference

22 Apr

I’m not a big fan of the Autism Society of America. Their position on the vaccine issue is weak, to be kind. Their webpage on that issue is out of date and not really helpful. Their discussion of mercury is, well, ill-informed.

That said, I saw this announcement for a conference by the Autism Society-Los Angeles chapter: Plan and Prepare: Transition to
Adulthood Conference.

Topics include navigating services, legal considerations, self advocacy and work options.

“Touch” the lives of autistic students

22 Apr

Pepsi has an interesting promotion ongoing. They have taken the money they would have spent on commercials during the Superbowl, and instead they are spending it on charity. They determine the charities by votes.

One idea that stands out is:

“Touch” the lives of my students with Autism.

The idea is to use the money from Pepsi (should they win) to purchase iPod touch’s and install Proloquo2Go software on them. Proloquo2Go is an Augmentative and Alternative Communication (AAC) program for the touch.

I first heard about this program on Change.Org, in a post by Dora Raymaker, New iPhone and iTouch AAC Solution. I’ve seen it and it looks very good.

Here is the proposal from Jennifer Luckart, a special ed teacher trying to obtain the Pepsi grant money:

Goals

* To start a 10 unit iPod Touch Communication Lab.
* To increase the communication skills of my students with Autism.

Overview

An iPod Touch Communication Lab will provide the technology to change the lives of 25 amazing students with Autism. These students are currently challenged to communicate with others and understand the world around them. An iPod Touch Communication Lab will build functional communication skills. The Proloquo2Go application has over 7,000 symbols and text to speech capabilities, turning an iTouch into a communication device. The students will learn to use this device and it will:

Help them effectively express themselves across many different learning environments. (classroom, cafeteria, playground)

Provide visual cues to help the students successfully transition throughout the school day.

Foster independence through instruction on how to access functional information on the web. (directions, schedules, phone numbers)

Be a tool used to promote relationships between students with Autism and their typical peers.

This idea is currently ranked 16th. The top 10 ideas get funded in this category.

If you are curious about this software, here is a YouTube video on Proloquo2Go.

Frontline excerpt: Ashland Oregon

22 Apr

The PBS show Frontline has an upcoming episode called “The Vaccine War”. They recently posted a video excerpt of the episode. In this segment they follow a public health worker in Ashland Oregon, a community with one of the highest vaccine refusal rates in the US.

So, how is that vaccine refusal working out in Ashland? That’s in Jackson County, Oregon. I’m not alone in asking that question. One of the founders of Generation Rescue asked the same question recently

The Centers for Disease Control reports that 15 percent of children in Jackson County, Ore., are unvaccinated, Handley said. Someone needs to find out how these kids look comparatively. “It’s in the pockets of the unvaccinated kids where the first truths may be found,” he said.

Ashland appears to have an even higher vaccine refusal rate than the rest of Jacknson County. From the Frontline press release:

With an estimated quarter of the town’s children entering kindergarten not fully immunized, Ashland is one of the least vaccinated places in America.

So, Jackson County has a refusal rate of about 15% and Ashland about 25%. Let’s see what the Ashland City Council has to say. Here is a proclamation from the City of Ashland proclaiming Autism Awareness month

PROCLAMATION

“AUTISM AWARENESS MONTH”

• Autism is a complex neurobiological condition that appears at birth or typically before age three and occurs in one out of every 150 births each year in the United States.
• Autism affects the areas in the brain that regulate pragmatics of speech and perceptions of others, affecting how people with autism assimilate and express verbal and non-verbal communication, and sensory processing.
• Oregon has one of the highest rates of autism in the United States, with the Oregon Department of Education reporting 1 in 98 students on the autism spectrum, and in Ashland, 1.1 percent of students have been diagnosed which is the highest rate in Jackson County.
• While there is no precisely identified cause and cure for autism, Autism Centers of Excellence and institutions for education such as Oregon Health & Science University, and the Southern Oregon University Masters in Special Education program offer hope for recovery, and treatments to lead a rich and fulfilling life.
• Early Intervention services such as those provided by Asante Early Childhood Development can alter the course for children living with autism and their families in their ability to interact and communicate not only wants and needs, but dreams and aspirations.
• Adults living with Autism and Asperger’s Syndrome can find a warm and welcoming home and community in Ashland.

NOW THEREFORE, the City Council and Mayor, on behalf of the citizens of Ashland, hereby proclaim the month of April 2008 as:

“AUTISM AWARENESS MONTH”

and call upon the citizens of the City of Ashland to observe the month by learning about people with autism, their strengths, abilities, and the programs which serve their needs.

Dated this 4th day of March, 2008.

Barbara Christensen, City Recorder
John W. Morrison, Mayor

Keep in mind that the above proclamation involves educational data, which are not the same as real autism prevalence. That is especially problematic in Oregon, which has a very vague criterion for an educational diagnosis. But, that said, Ashland (with a vaccine refusal rate of 25%) had 1.1% of their students with educational diagnoses of autism, the highest in Jackson County and higher than the Statewide average.

Again, education data are fairly weak to begin with, and Oregon has a very loose definition of “autism”. But, that said, there isn’t evidence in the educational data that vaccine refusal is helping Ashland avoid autism.
In other words it looks like vaccine refusal is not protecting Ashland from autism.

Professor Peter Bearman on vaccines and autism revisited

21 Apr

I’ve posted a few pieces on the work of Prof. Peter Bearman recently. I mentioned his work on vaccines and autism in one post but the lecture was not one that could be embedded and the part on vaccines is only a relatively short bit towards the end of the lecture.

So I took that section of the lecture out and put it on YouTube so I could embed it. This is discussing data from what I assume is an upcoming paper by Prof. Bearman’s group.

Prof. Bearman notes that vaccine refusal rates in California are higher in areas where autism organizations have a presence. However, vaccine refusal rates are *not* higher in areas with high autism prevalence.

In other words: autism isn’t scaring people away from vaccination. But, autism organizations are.

can be as much as 7 times higher if there are autism organizations in a given area. The baseline refusal rate in California is about 1.6% (in 2003). In other words, there are pockets of vaccine refusal of 10% or more in California, correlated with autism organization presence.

There are those who gloat about increasing fear of vaccines. It is too bad that time, money and effort didn’t go into something valuable to the autism communities. Let’s hope it doesn’t backfire on us in the form of infectious disease outbreaks blamed on the autism community.

Prof. Peter Bearman interviewd by Tom Insel

21 Apr

Prof. Peter Bearman is a sociologist at Columbia University who has undertaken a monumental task: figure out what is behind the increase in autism prevalence. He has chosen (at least so far) to work with California Department of Developmental Services data. This dataset is no where near the “gold standard of autism epidemiological data” that some have touted it to be. But it remains as one of, if not the best, dataset in the US.

I wrote about his most recent paper in Social influences on the rise in autism prevalence and Diagnostic change and the increased prevalence of autism.

Given the importance of this work, I thought it worthwhile to present this short interview of Prof. Bearman by the NIMH Director and IACC chair, Dr. Tom Insel. It is significantly shorter than the full lecture I linked to, and it is possible to embed it:

Prof. Bearman’s team is working on analyzing the California Department of Developmental Services (CDDS) dataset to see what trends can be identified.

Ascertainment, change in diagnostic criteria, increases in parental age, socio-demographic changes are factors in the increase in prevalence.

For example, in the past, it was wealthy families who were more likely to obtain an autism diagnosis for their child. Now that socio-economic divide is disappearing. This is a sign that ascertainment has been an effect.

Professor Bearman notes that some effects have been quantified:

25% of the increase is diagnostic change on the border between autism and mental retardation
16% of the increase is diagnostic change on the other border–between autism and other disorders
3% spacial clustering
11% increased parental age

Prof. Bearman suggests that the increased parental age factor is likely genetic in origin. Increased parental age leads to more copy number variations (CNV), leading to more autism.

I don’t expect this to change the “there can’t be a genetic epidemic” slogan. At this point it isn’t proven that this large factor is genetic. But it is possible.

There is still a large fraction of the increase which is unaccounted for. Prof. Bearman warns at the end that a search for a “quick and dirty” answer may not be advancing science.

I take “quick and dirty answer” to mean vaccines.

The problem is highly complex. The next steps in this study will be very difficult. The social influences on increasing autism prevalence can amplify other factors. Finding possible causes for a real increase in autism incidence will be complicated by other factors. But unless someone quantifies and understands those factors, the likelihood is very low of ever finding causes of autism which might drive part of the increase in prevalence.

Major fail by medical regulators: Dr. Rashid Buttar given slap on the wrist

21 Apr

Beware, North Carolina. Beware. Dr. Rashid Buttar is free to practice medicine.

So goes the title of a blog post by Orac at Respectful Insolence.

Background, Dr. Rashid Buttar is an alternative medical practitioner who has, amongst other things, “therapies” to treat autism. He has been a major proponent of chelation. He is also notorious for his urine injections. Yes, urine.

Dr. Buttar was investigated by his state’s medical examiners. Again, from Orac: Rashid Buttar’s going down: The North Carolina Board of Medical Examiners finally acts

From a news report at that time:

The panel also found that Buttar exploited patients by charging exorbitant fees for unproven therapies that didn’t work. The panel recommended that his license be suspended indefinitely, but that the suspension be immediately stayed. Until the board decides, Buttar may practice without restrictions.

from a recent news story:

In that Michigan case, Buttar treated the child without having first performed an exam, a violation of the state’s medical practice act.

Did he “go down”? No. Dr. Buttar was able to benefit from laws he, himself, pushed through his State’s legislature:

Dr. Rashid Buttar, whose alternative medical practice in Huntersville has been under scrutiny by the N.C. Medical Board for a decade, has accepted a reprimand from the licensing agency.

But Buttar, who was facing potential restrictions to his license, instead can continue offering unconventional treatments as long as he asks patients to sign a form acknowledging his practice is outside the mainstream.

“This was a witch hunt from the beginning,” said Buttar, 44, whose practice attracts patients from 42 states and 37 countries. “They were trying to discredit me … but I didn’t do anything wrong.”

The consent order, signed Friday, marks the end of a battle that Buttar had vowed to take to the U.S. Supreme Court. He said he has spent “hundreds of thousands of dollars” defending himself against the board’s allegations that he exploited patients by charging exorbitant fees for unproven therapies that didn’t work and by arbitrarily ordering expensive tests to make more money.

In recent years, Buttar led a successful effort by the N.C. Integrative Medical Society to get legislators to change state law to make it friendlier to practitioners of alternative medicine.

Again, quoting Orac:

But back to why Dr. Buttar might have agreed to this consent decree. The answer becomes obvious if you peruse the actual consent order. All it does is to reprimand Buttar and order him (1) to provide informed consent to his patients dictated by the board; (2) to obey all laws, as well as rules and regulations governing the practice of medicine; (3) notify the board if he changes his address; and (4) meet with the board periodically. In other words, Buttar got a slap on the wrist.

“A slap on the wrist”.

Wow.

The top treatment listed on Dr. Buttar’s website is IV treatements which, as we know, include chelation. These have been “pioneered by Dr. Buttar” and the fact that the vast majority of the medical establishment rejects his ideas is a selling point:

However, the use of these highly effective treatments, suspiciously unpopular among traditional medicine regulators, is only determined by the medical providers in the clinic (ie, the Doctors, Nurse Practioners or PA’s).

Yes, your young child could sit with 7 other people in a room and stare at pictures of Pooh Bear (I wonder about the copyright issue on that?) while having an IV needle inserted to deliver “suspiciously unpopular” treatments. Here is the picture of his IV suite:

The main change between before the consent agreement and now is that all you have to do is sign a paper noting that you accept the fact that you accept the fact that these treatments have not been proven effective…

Do you think this “consent order” is anything more than a slap on the wrist? Here is a quote from it:

I understand and have been advised that the treatments and therapies that are to be provided by Dr. Buttar have not been proven effective by traditional research studies or conventional clinical trials and may not have been approved by the FDA for my diagnosis. Dr. Buttar makes no specific claims or representations that the treatments and therapies that he will be providing will be effective or cure the condition or diagnosis that I have.

Take a look at Dr. Buttar’s website (or the quote above) again.

However, the use of these highly effective treatments…

Yes, he’s still claiming that his treatments are “highly effective”, even though they “have not been proven effective by traditional research studies…”

Dr. Buttar was a part of the team involved with Desiree Jennings, the Redskins spokesperson who claimed the flu shot caused dystonia.

Dr. Buttar still has his supporters. From a recent story on this case:

Many of Buttar’s patients came to his defense in 2008. Among them was Elrene Thomas of Lexington. When contacted Tuesday, she was pleased to hear that Buttar can continue to practice. A retired nurse, she went to him for treatment seven years ago when she learned her breast cancer had spread to her spine. Instead of going through chemotherapy and radiation again, she tried IV infusions five days a week for months and had hyperbaric oxygen therapy twice a day for several weeks. She paid Buttar’s center $100,000 and said it was worth it.

“I really feel like he saved my life,” said Thomas, 77. “I’m not healthy in that I have stage 4 (cancer), but I’m surviving and I’m doing all these things that he taught me to do. I believe in his treatment.”

Yes, this is one of his success stories.

What do you call therapies a doctor makes up on his own, untested by “traditional” means? I would call that experimental. I think that is being generous.

Medical regulation exists for a reason. Slapping doctors on the wrist is not the reason.

Kathleen Sebelius and Francis Collins to speak at next IACC meeting

21 Apr

The Interagency Autism Coordinating Committee (IACC) will hold its next meeting on Friday, April 30. I checked the agenda for this meeting and found that Kathleen Sebelius, Secretary of Health and Human Services, and Francis Collins, Director of the NIH will be speaking.

The meeting will be videocast and available via telephone.

Here is the agenda for the next IACC meeting:

IACC Full Committee Meeting Agenda

Friday, April 30, 2010
9:00 a.m. – 5:00 p.m. Eastern

The Ronald Reagan Building and International Trade Center
Rotunda Room
1300 Pennsylvania Avenue, N.W.
Washington, DC 20004

Time Event
9:00 a.m. Registration

10:00 Call to Order and Opening Remarks

Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
10:05 Kathleen Sebelius
Secretary, Department of Health and Human Services

10:20 Welcome and Introductions of IACC Members

10:55 Francis Collins, M.D., Ph.D.
Director, National Institutes of Health

11:10 Break

11:25 Research Update: Autism Treatment Network
Geraldine Dawson, M.D.
Chief Science Officer, Autism Speaks

11:50 Research Update: Autism in the DSM-V
Susan E. Swedo, M.D.
Senior Investigator, Behavioral Pediatrics Section
Pediatrics and Developmental Neurospsychiatry Branch, NIMH

12:15 Lunch

1:30 Public Comments

2:00 Research Update: Stem Cell Talk

James Battey, M.D.
Director, National Institute on Deafness and Other Communication Disorders

2:25 Research Update: NIH Nonverbal ASD Workshop
Helen Tager-Flusberg, Ph.D.
Director, Laboratory of Developmental Cognitive Neuroscience, Boston University

Ann Wagner, Ph.D.
Chief, Neurobehavioral Mechanisms and Mental Disorders Branch, NIMH

2:50 Research Update: Building the Infrastructure for Comparative Effectiveness Research on Disability Issues
Rosaly Correa-de-Araujo, M.D., MSc, Ph.D.
Deputy Director, Office on Disability, Office of the Secretary

3:15 Approval of January 19, 2010 IACC Committee Minutes

3:20 Update: Planning Subcommittee
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

3:50 Break

4:00 OARC Update

* 2009 Summary of Advances
* IMFAR Update

4:20 Public Comments Discussion Period
4:50 Closing Comments
5:00 Adjournment

Does autistic enterocolitis exist?

20 Apr

The piece below is from the blog justthevax, where it ran as “Independent” the Wakefield way (really something for the fail blog). I like this piece because, frankly, I wish I had done it. Catherina takes a look at the exact claims made by Dr. Wakefield’s supporters and shows that they are clearly false.

“Independent” the Wakefield way (really something for the fail blog).

One of the claims that keeps reappearing in the comments sections under articles covering the GMC ruling on Andrew Wakefield and colleagues is that

The key finding (chronic colitis found in ASD children) of Dr. Wakefield’s early case report published in The Lancet in 1998 HAS been independently confirmed by medical researchers in five different countries.

That is a very significant claim. After all, independent confirmation of a recent finding, would make the validity of a finding more likely, and if 6 independent laboratories found the same gut changes in autistic children, then then likelihood that this was a) a fluke or b) made up by Andrew Wakefield would be drastically reduced.

Finally, one of those commenters has posted those ‘independent confirmations’ – so I thought it might be worth having a look at them.

Krigsman, A. (Assistant Professor of Pediatrics, New York University School of Medicine Director of Gastroenterology Services), et al.,Ileocolonoscopy in Children with Autistic spectrum Disorder and Chronic Gastrointestinal symptoms. Autism Insights 2010:2 1-11.

Gonzalez, L., et al., Endoscopic and Histological Characteristics of the Digestive Mucosa in Autistic Children with gastro-Intestinal Symptoms. Arch Venez Pueric Pediatr, 2005;69:19-25.

Balzola, F., et al., Panenteric IBD-like disease in a patient with regressive autism shown for the first time by wireless capsule enteroscopy: Another piece in the jig-saw of the gut-brain syndrome? American Journal of Gastroenterology, 2005. 100(4): p. 979-981.

Balzola, F., et al., Autistic enterocolitis: Confirmation of a new infammatory bowel disease in an Italian cohort of patients. Gastroenterology 2005;128(Suppl. 2);A-303.

Galiatsatos, P., et al., Autistic enterocolitis: Fact or fiction. Canadian Journal of Gastroenterology. 2009;23:95-98.

Let’s look at number 1, Krigsman et al. The name sounds vaguely familiar. In fact, anyone who has read a little about the MMR-autism affair will know Arthur Krigsman as the clinical director of Thoughtful House, which happens to be the same Texas Clinic out of which Andrew Wakefield practises. One editor of “Autism Insight”, the journal in which this “independent confirmation” was published, is Andrew Wakefield (another one the senior author of the study, Carol Stott). Gosh, I bet peer review was harsh for this one.

Gonzales et al, number 2, has been published in “Arch Venez Pueric Pediatr” which stands for Archivos Venezolanos de Puericultura y Pediatría. It was a bit tricky to get my hands on the paper, especially since the citation was not quite right, but I did manage and was not surprised to find that indeed the authors cannot replicate Wakefield’s 1998 “findings” of a distinct autistic enterocolitis, although they do report a higher incidence of gastrointestinal problems in their autistic group.

Balzola et al, number 3, is a case report of one adult autistic patient with inflammed bowel.

Similarly, Balzola et al, number 4, is a meeting abstract (if anyone has access, could they email me that abstract, please) that never saw the light of day as a peer reviewed study.

Finally, number 5, Galiatsatos et al., is a case report, featuring two adult patients with gastrointestinal problems and an ASD diagnosis. The authors call for “more investigations” in their discussion.

So what do we have here? Three (3) genuinely published cases of autistic adults who had consulted a doctor for gastrointestinal problems and were found to have gastrointestinal problems. One conference report from April 2005 that has not gone through peer review and has not appeared in a real journal in the 5 years since the conference. One real study looking at over 50 autistic children which does not confirm Wakefield’s findings. And finally, one study by Wakefield’s buddies in a freshly founded journal run by Andrew Wakefield and his buddies, to say that their buddy Andy was really right all along – how is that for “independent” confirmation?!

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