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IACC Services Workshop: Enhancing Supports for People with Autism and Their Families: Community Integration and the Changing Delivery System

12 Sep

The Interagency Autism Coordinating Committe with hold a workshop on services: Enhancing Supports for People with Autism and Their Families: Community Integration and the Changing Delivery System. This workshop will be held this week, September 15th. The announcement is below.

Date:
Thursday, September 15, 2011

Time:
8:30 a.m. to 6:00 p.m. Eastern

Agenda:
The workshop will focus discussion in a public forum innovative and best practices that are being developed and implemented around the country to address the services needs of people with autism and other disabilities and to help them integrate into their communities.

To view the agenda, click here.

Place:
The Bethesda Marriott
5151 Pooks Hill Road
Bethesda, Maryland 20814
Map and Directions

Webcast Live:
http://nih.granicus.com/ViewPublisher.php?view_id=5

Conference Call Access:
Dial: 888-390-1050
Access code: 1840636

Cost:
The meeting is free and open to the public.

Pre-Registration:
http://www.acclaroresearch.com/oarc/9-15-11/
Pre-registration is strongly recommended, but PRE-REGISTRATION DOES NOT GUARANTEE YOU A SEAT. Seating is first come, first served, with expedited check-in for those pre-registered. Seating is limited to room capacity.

Access:
On-site parking available with validation

Contact Person:
Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8185a
Rockville, Maryland 20892-9669
Phone: 301-443-6040
Email: IACCPublicInquiries@mail.nih.gov

Please Note:
This workshop will also be open to the public through a conference call. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard. If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting.

As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please note: Online pre-registration will close by 5:00 p.m. the day before the meeting. After that time, registration will have to be done onsite the day of the meeting.

Schedule for meeting is subject to change.

Autism Phenome Project announces first results at the Asia Pacific Autism Conference

8 Sep

The Asia Pacific Autism Conference is ongoing in Perth Australia. Prof. David Amaral of the Mind Institute at U.C. Davis (California) will speak and present the first results from the Autism Phenome Project. This is a study to separate autism into various groups, or phenomes.

Here is a blurb from the press announcement for the conference:

The announcement of the first results of the Autism Phenome Project, the largest and most comprehensive assessment of children with Autism ever attempted. The project started in 2006 and is being conducted at the MIND Institute at the University of California, Davis (UC Davis). It is headed by Dr David Amaral and involves 52 scientists across eight fields. Dr Amaral is the President of the International Society of Autism Research. He is Distinguished Professor of Psychiatry and Behavioural Sciences at the Centre for Neuroscience at UC Davis. He is also Research Director and Beneto Foundation Chair of the MIND Institute. Dr Amaral will announce the results.

An Australian news outlet carried the story as US researchers’ discovery promises answers on autism.

Researchers from the University of California Davis’s MIND Institute in Sacramento began the Autism Phenome Project in 2006. They have been studying the brain growth, environmental exposure and genetic make-up of 350 children aged between 2 and 3 1/2 years, and have so far found two biologically distinct subtypes of autistic brain development.

One group of children – all boys – had enlarged brains and most had regressed into autism after 18 months of age; another group appeared to have immune systems that were not functioning properly.

Prof. Amaral’s slides have been made available.

They show, amongst other findings

Total cerebral volume is highly variable in ASD, but appears to be on average higher in ASD boys than controls.

There are various onset types: early onset, plateau, and regression.

Those who exhibit loss of skills have enlarged brains. But, interestingly, the head circumferences start to diverge at about 4-6 months. I.e. there are signs even before the regression occurs.

However, he has a talk “Neurobiological and neuro-immune features of Autism” with the following abstract:

The slides do not appear to discuss the immune phenotype mentioned in the press. However, Autism now affects 1:110 children in the United States. It is a complex disorder that likely has many variants and various etiologies. The first half of this presentation evaluates the hypothesis that the amygdala plays an important role in the pathophysiology of autism. First, MRI studies of the amygdala in children with autism are presented. Then, postmortem data on the morphology of the amygdala in autism are described. Observations are presented both on neurons and glia in the amygdala. Taken together these data confirm that the amygdala is clearly pathological in autism. Given that the amygdala is pathological, what might this pathology contribute to the behavioural impairments of autism? To address this issue, research on the nonhuman primate is discussed. These studies highlight a role for the amygdala in fear regulation and perhaps in mediating the co?morbid anxiety in autism. In the second part of the talk, data demonstrating abnormalities of the immune system of children with autism and a subset of mothers of children with autism are discussed. I also review findings of a nonhuman primate model of autism based on a neuroimmune intervention.

Autism and SSRI’s: preliminary data but good enough for attorneys

8 Sep

Recently, an article in the Archives of General Psychiatry raised the question of whether SSRI’s (selective seratonin reuptake inhibitors) might increase the risk of autism. The paper, Antidepressant Use During Pregnancy and Childhood Autism Spectrum Disorders, came from the Kaiser Permanente research group.

The study was relatively small, as you can see from the results (20 case children and 50 controls):

Results Prenatal exposure to antidepressant medications was reported for 20 case children (6.7%) and 50 control children (3.3%). In adjusted logistic regression models, we found a 2-fold increased risk of ASD associated with treatment with selective serotonin reuptake inhibitors by the mother during the year before delivery (adjusted odds ratio, 2.2 [95% confidence interval, 1.2-4.3]), with the strongest effect associated with treatment during the first trimester (adjusted odds ratio, 3.8 [95% confidence interval, 1.8-7.8]). No increase in risk was found for mothers with a history of mental health treatment in the absence of prenatal exposure to selective serotonin reuptake inhibitors.

But it indicated the possibility of a higher risk. Here’s the conclusion from the abstract of that paper:

Conclusion Although the number of children exposed prenatally to selective serotonin reuptake inhibitors in this population was low, results suggest that exposure, especially during the first trimester, may modestly increase the risk of ASD. The potential risk associated with exposure must be balanced with the risk to the mother or fetus of untreated mental health disorders. Further studies are needed to replicate and extend these findings.

It is a rather guarded conclusion, with “further studies are needed…”

When CNN covered the story, they interviewed the lead author:

“This is the first study of its kind to look at the association, and the findings have to be interpreted with a lot of caution,” she says. “We can’t detect causality from one study.”

This paper came out July 4th.

Here we are, two months later, and what do I find in a recent google search? A nice big ad for attorney’s looking to build a class action lawsuit. I won’t link to the site, but here are some paragraphs from their page:

New research demonstrates that mothers who take SSRI (selective serotonin reuptake inhibitor) antidepressants while pregnant have a greatly increased risk of having a child with an Autism Spectrum Disorder.

“Greatly increased” risk. No guarded language here. No “further studies”. No “modestly increase”.

And, there is the pain…to the parent…that should be compensated:

Having a child with an Autism Spectrum Disorder can be stressful, both emotionally and financially. An autistic child may require expensive treatments, therapy, and special education. This can put a high emotional and financial toll on a family with an autistic child.

America. Land of the lawsuit.

Senate Health Committee Unanimously Approves Menendez, Enzi Bill to Combat Autism

7 Sep

The Combating Autism Re-authorization Act (CARA) has passed the Senate Health Committee. Here is the press release from Senator Menendez, who is sponsoring the bill.

Senate Health Committee Unanimously Approves Menendez, Enzi Bill to Combat Autism

September 7, 2011

WASHINGTON – U.S. Senator Robert Menendez (D-NJ) today announced that his bill to combat Autism took a key step forward, being unanimously approved by the Senate Health, Education, Labor and Pensions (HELP) Committee. The Combating Autism Reauthorization Act (S. 1094) is a critical piece of bipartisan legislation will extend the programs authorized under the original Combating Autism Act (CAA) to continue for an additional three years.

The CAA provides for autism surveillance programs at the Centers for Disease Control and Prevention, as well as intervention and training programs at the Health Resources and Services Administration. Additionally, this legislation allows for the continuation of the Interagency Autism Coordinating Committee (IACC), which is responsible for advising the Secretary of Health and Human Services (HHS) on autism polices, coordinating the federal response to autism and developing the annual strategic plan for autism research. These programs have been critical in advancing research on the causes, diagnosis and treatments of autism. The CAA sunsets on September 30. Next the bill will move to the full Senate for consideration and then be sent to the U.S. House of Representatives.

“Passage of this bill is essential in continuing our efforts toward understanding autism and ensuring individuals living with developmental disabilities and their families have the support they need,” said Sen. Menendez. “I want to thank Chairman Harkin for his leadership and commitment to moving this important legislation and Ranking Member Enzi for his continued support of it. As the lead cosponsor of this bill, his leadership helps to ensure the ongoing efforts originally set forth in the CAA can continue for at least another three years,” said Senator Menendez. “As this legislation moves to the full Senate, I look forward to continuing to work with New Jersey families, advocates, and my colleagues in the Senate on this bipartisan effort.”

Autism is the fastest-growing serious developmental disability in the country, affecting on average 1 in 110 children and 1 in 70 boys. In New Jersey, 1 in 94 children are affected with autism spectrum disorders, one of the highest rates in the nation. This year more children will be diagnosed with autism than with AIDS, diabetes and cancer combined.

Mark Geier: vaccine lover

7 Sep

Sometimes reality is just stranger than fiction. Consider Mark Geier. He’s the doctor whose license has been suspended in Maryland for his treatment of autistic children with Lupron. He’s been a regular expert witness in the vaccine court for something like 20 years. He’s got multiple papers out on the dangers of mercury in vaccines.

Think that’s enough to please the vaccines-cause-autism crowd? Think again.

Stroll over to Facebook where a heated discussion is ongoing.

…you’re wrong on that one…. from personal experience having dinner with Dr. Geier….he has no problem with the vaccines other than mercury. He told me to my face at dinner that he gave his patients the H1N1 vaccine last year (Hg free of course). Sorry, but that is from personal experience….he’s a hack in my book.

Yep. Giving vaccines makes one a hack. Treating faux precocious puberty, not so much.

the response?

…thanks for saying that…I detected he was a vaccine lover.

Yep, he’s a “vaccine lover”. Mark Geier. That’s his failing.

… I know I’ll probably make some enemies over this but I call em’ as I see em’ and this was NOT hearsay. He told me that to my face at dinner…I got up, called him a moron and didn’t come back to finish my dinner. I fumed all night!

Well, there you have it. Tell the wrong people you gave vaccinations and you are a hack, a “moron” and you make people lose their appetite.

The world never ceases to amaze.

MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science

6 Sep

In a commentary for the Mayo Clinic Proceedings, Gregory A. Poland, MD writes about MMR and autism. In case you don’t get the idea of his stance from the title of the article, MMR Vaccine and Autism: Vaccine Nihilism and Postmodern Science, it starts out with a quote:

Nothing is more terrible than to see ignorance in action.

Johann Wolfgang von Goethe

I’m sure people will counter that they are very “smart” and “well educated” and, therefore, not ignorant when they promote the MMR/autism notion. Is it ignorance, willful ignorance, bias, dishonesty, some mix or something else entirely that is behind the perpetuation of the idea? I don’t know. On a very real level, it doesn’t matter. What matters is the fact that the MMR hypothesis was wrong and that those who continue to promote it are causing a very real danger to society.

That said, here are Dr. Poland’s views in the introduction to his paper:

It is a truism that acting in one’s perceived self-interest is not always in one’s self-interest. Perhaps nowhere is this truer in contemporary public health than for the issue of the measles-mumps-rubella (MMR) immunization and persistent fears about a possible connection with autism. Although each of these 3 diseases had been controlled in the United States with the widespread use of the MMR vaccine, in the past decade those gains have been slipping. Even though the United States has had fewer than 50 measles cases per year during the past decade (mostly imported from other countries), 156 cases have already been identified in the first 6 months of 2011. 1 European countries such as England, Wales, Italy, France, Spain, and Germany are also experiencing substantial increases in measles outbreaks.

Why should we be concerned? Measles is the most transmissible human disease known. Even with modern medical care, approximately 1 of every 3000 infected persons die, and many more are hospitalized or otherwise harmed as a result. Population coverage (herd immunity) needs to be in excess of 96% to prevent outbreaks. In addition, measles is a disease for which eradication is both possible and planned, a goal that obviously cannot be met given current vaccine coverage levels.

This predictable sequence of falling coverage levels, followed by outbreaks of disease, has occurred because of decreased public confidence in the safety of the MMR vaccine. In large part, this has resulted from incorrect assertions that the vaccine plays a role in the development of autism, an idea promoted by Andrew Wakefield. No credible scientific evidence, however, supports the claim that the MMR vaccine causes autism, and indeed, national medical authorities and scientific professional societies have unanimously …

This article is commentary (i.e. not a research article), but there are some good points and questions made:

Why in the face of nearly 2 dozen studies and every scientific committee rejecting such an MMR-autism connection does this myth persist?

As expected, he notes the celebrity aspect of the vaccine-causation notion. He also discusses the recent paper in the PACE Law Review.

Under “Moving Forward”, Dr. Poland writes:

At some point, a point I believe we have well passed, the small group of people who claim such connections, who have no new or credible data, and for which their assumptions and hypotheses have been discredited must simply be ignored by scientists and the public and, most importantly, by the media, no matter how passionate their beliefs to the contrary. Such individuals are denialists at best, and dangerous at worst. Unfortunately, the media has given celebrities who comment on an autism-MMR link far more attention than they deserve, and the public, unfamiliar with the background science, has confused celebrity status with authority. Such a phenomenon has not been lost on those wishing to continue the discussion. As an example, J. Hanlon, cofounder of Generation Rescue (an organization that advocates for an autism-MMR vaccine link) commented, in regard to the finding that both Andrew Wakefield and his assertion of a connection between autism and MMR vaccine had been discredited, that to those who believe vaccines cause autism “Andrew Wakefield was Nelson Mandela and Jesus Christ all wrapped in one.”

Prediction: we will hear all about how this commentary is obviously worthless because the author didn’t correctly cite J.B. Handley. If you are wondering what I mean, read again, Mr. Handley is referred to as J. Hanlon. I wish the author hadn’t made that mistake as such small errors are exploited in exactly this way. But, at the same time, this puts some perspective on the situation regarding Mr. Handley. He is a well known name in a very small community. He has become one of the go-to people for comments critical of vaccination (as in the Jesus Christ/Nelson Mandella article).

Prediction 2: Dr. Poland’s article will be called an attempt at censorship (see the conclusion below). Probably with no sense of irony by the same people who recently stated that Autism Speaks should “Shut up, shut down and go away.”

Prediction 3: People will still refuse to see how strange the “Nelson Mandela and Jesus Christ” comment read to the majority of readers. OK, I am predicting the past here, but I expect this to go forward too. Dr. Poland didn’t pick this quote to place Andrew Wakefield in good light.

That all said, I agree with Dr. Poland. It is well past time for the MMR story to be set aside. Just because there are adherents to the idea doesn’t mean that news organizations need to give it false balance.

Dr. Poland concludes his article with a simple summary: the MMR/autism question has been investigated closely and no link is found. The decision to forgo immunization based on this fear is not without danger. Those who promote the MMR/autism link in the face of all the evidence are not working for the public good:

For anyone adhering to the scientific model of discovery, experimentation, and evidence, the trial is over and the jury back—there is no known scientific association between receipt of MMR vaccine and the subsequent development of autism. Making the decision to not immunize children with the MMR vaccine because of fear of such an association —rather than credible scientific evidence—places children and others at great risk as current measles outbreaks in the United States and Europe illustrate. Vaccine nihilists who continue to claim such associations are simply wrong, and they pedal an agenda other than for the public good. At this point, the antivaccine groups and conspiracy proponents promoting such an association should be ignored, much as thinking people simply ignore those who continue to insist that the earth is flat or that the US moon landing in 1969 did not really occur

He concludes simply but strongly:

There is no law against being foolish, nor any vaccine against ignorance; however, in the meantime the health of millions of children in the United States and worldwide is being placed at unnecessary and real risk through continued deliberate misinformation and discredited unscientific beliefs, and that should be a crime.

Sacramento County Schools “See” The Invisible Epidemic

5 Sep

At the end of this past week, California’s Sacramento Bee reports that “Autism rates quadruple in local schools over last decade“. The article, written by Phillip Reese, seems largely unremarkable. Even though headline is suggestive, there are no claims of “autism epidemic” that follow. In fact, Reese points out that:

Whether autism is actually more prevalent — as opposed to just more frequently diagnosed — is a matter of controversy.

From a scientific perspective, Reese definitely could have dug a lot deeper, but to a casual reader, the relevant facts seem pretty accurate, and a clear chart is provided.

The problem with an article like this, is that to a casual reader it may appear that there doesn’t seem to be any explanation in sight. “Autism is on the increase in Sacramento County Schools for the past decade”, and that’s that – “Why” is some sort of “controversy”, “some districts have more autistic students than others”, “here’s a chart”, and the article ends.

Did the Sacramento Bee miss an opportunity to carry their headline further, and expose an acutal “autism epidemic” in northern California schools?

Not surprisingly, Age Of Autism (always on the lookout for support of the notion that there’s been an autism “epidemic”) thought so. As it turns out, AoA resisted the urge to dig much deeper too. They were apparently satisfied to present a simple retort to the indication that whether or autism is actually more prevalent or more frequently diagnosed is “controversial”.

Seems the SacBee hasn’t read the study from their own state U that said, A study by researchers at the UC Davis M.I.N.D. Institute has found that the seven- to eight-fold increase in the number children born in California with autism since 1990 cannot be explained by either changes in how the condition is diagnosed or counted – and the trend shows no sign of abating.

Emphasis AoA’s.

If you think the emapahsized quote above sounds more like a press release than an acutal study, you’d be correct. Does the quoted press release overstate the actual conclusions of the study?

I’ll let readers be the judge of that, here’s the actual study’s conclusion:

Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changesin diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases. Other artifacts have yet to be quantified, and as a result, the extent to which the continued rise represents a true increase in the occurrence of autism remains unclear.

Emphasis mine.

As foreshadowed for us in the conclusion of the actual study, what other artifacts might there be, that have “yet to be quantified”? Big ones like changes in awareness or diagnostic substitution?

Let’s quantify one of those potential artifacts (diagnostic substitution) for the Sacramento County Schools data, shall we?

Here’s the data (available online to the public):

To sum things up, I think Reese’s article/blurb would have been more interesting, only requiring a few extra minutes (the data is already there, presented on the same page when looking up the autism numbers), if it had included information about other changes like the “more than offsetting decrease” of Specific Learning Disabilities over the same time period.

Tell us what you think? Could newspapers do better when reporting on autism data, or do they simply present what their readers are really looking for?

Additional reading on this subject:

California’s Invisible Autism Epidemic (Jan 2009)

California’s Invisible Autism Epidemic Continues (Feb 2010)

California’s Specific Learning Disabilities Counter Epidemic (Feb 2011)

Lessons from the MMR scare by Fiona Godlee

2 Sep

Fiona Godlee, editor of the British Medical Journal, will address the National Institutes of Health (NIH) on Tuesday, Sept. 6th. Her talk, Lessons from the MMR scare, will take place at 11am eastern time, and is scheduled for 90 minutes.

It will also be videocast.

Please join BMJ Editor Fiona Godlee for a discussion of the stunning investigation she published earlier this year that revealed the MMR scare was based not on bad science but on deliberate fraud. The three-part series was produced by journalist Brian Deer, who spent seven years investigating Andrew Wakefield’s infamous study linking the MMR vaccine with autism, discovering Wakefield had been paid by a lawyer to influence his results and had blatantly manipulated the study data.

In an editorial accompanying Deer’s report, Godlee and colleagues noted, “Science is based on trust. Without trust, research cannot function and evidence based medicine becomes a folly. Journal editors, peer reviewers, readers, and critics have all based their responses to Wakefield’s small case series on the assumption that the facts had at least been honestly documented. Such a breach of trust is deeply shocking. And even though almost certainly rare on this scale, it raises important questions about how this could happen, what could have been done to uncover it earlier, what further inquiry is now needed, and what can be done to prevent something like this happening again.”

For more information, read the BMJ articles:

The fraud behind the MMR scare, Fiona Godlee, et al
Wakefield’s article linking MMR vaccine and autism was fraudulent
Institutional and editorial misconduct in the MMR scare

Secrets of the MMR scare: Brian Deer

Part 1: How the case against the MMR vaccine was fixed
Part 2: How the vaccine crisis was meant to make money
Part 3: The Lancet’s two days to bury bad news

The NIH website gives a brief biographical blurb on Ms. Godlee:

About Fiona Godlee

Fiona Godlee has been Editor in Chief of the BMJ since 2005. She qualified as a doctor in 1985, trained as a general physician in Cambridge and London, and is a Fellow of the Royal College of Physicians. Since joining the BMJ in 1990 she has written on a broad range of issues, including the impact of environmental degradation on health, the future of the World Health Organisation, the ethics of academic publication, and the problems of editorial peer review. In 1994 she spent a year at Harvard University as a Harkness Fellow evaluating efforts to bridge the gap between medical research and practice. On returning to the UK, she led the development of BMJ Clinical Evidence, which evaluates the best available evidence on the benefits and harms of treatments and is now provided worldwide to over a million clinicians in 9 languages. In 2000 she moved to Current Science Group to establish the open access online publisher BioMed Central as Editorial Director for Medicine. In 2003 she returned to the BMJ Group to head up its new Knowledge division. She has served as President of the World Association of Medical Editors (WAME) and Chair of the Committee on Publication Ethics (COPE) and is co-editor of Peer Review in Health Sciences. She lives in Cambridge with her husband and two children.

hat tip to a commenter at Respectful Insolence for this information.

Prof. Paul Shattuck: ASD outcomes in adulthood

2 Sep

Below is a presentation given at the last IACC (Interagency Autism Coordinating Committee) meeting. Prof. Shattuck has done some excellent work in recent years. He’s one of the people looking into the areas I find critical and underserved. If you want to hear about research which can have a real impact on the life of this generation of autistic youth, you should set aside the time to listen to this talk.

Prof. Shattuck is looking at the critical transition from school to adulthood. How well are autistic students making that transition (largely, not so well as it turns out). What are the factors that help make that transition successful? If we don’t look into these questions today the problems will only continue unresolved.


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Autism Talk TV – Ep. 16 – What’s the Deal With Women, Fatherhood, and Executive Functioning?

2 Sep

Alex Plank, Kristen and Jack Robison went to the ASA conference in Florida and have a lot of video in the can. This is their first finalized video from that trip.

Kristen speaks to Dena Gassner (subject: Women), Alex and Jack speak with Claire Dumke (subject: executive functioning), and Alex speaks with Robert Naseef (subject: Fatherhood).

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