IACC Full Committee Meeting Tuesday, January 29, 2013

24 Jan

There will be a meeting of the U.S. Interagency Autism Coordinating Committee (IACC) next Tuesday. Full details can be found on the IACC website. The meeting will be from 10am to 5pm.

The agenda is:

The committee will discuss updates on ASD research and services activities, discuss plans for the 2012 IACC Summary of Advances and plans for the update of the IACC Strategic Plan for ASD Research.

And will be held at:

William H. Natcher Conference Center
45 Center Drive, Conference Rooms E1/E2
Bethesda, Maryland 20892
Map and Directions</blockquote>

One can attend in person or watch via videocast

One can submit comments. The deadline to be included for this meeting is today:

Notification of intent to present oral comments: January 24th by 5:00 p.m. Eastern
Submission of written/electronic statement for oral comments: January 25th by 5:00 p.m. Eastern
Submission of written comments: January 24th by 5:00 p.m. Eastern

One can always submit written comments (IACCPublicInquiries@mail.nih.gov), they will be held for the next meeting.

The meeting website has a long “please note”:

Any member of the public interested in presenting oral comments to the Committee must notify the Contact Person listed on this notice by 5:00 p.m. Eastern on Thursday, January 24, 2013, with their request to present oral comments at the meeting. Interested individuals and representatives of organizations must submit a written/electronic copy of the oral presentation/statement including a brief description of the organization represented by 5:00 p.m. Eastern on Friday, January 25, 2013. Statements submitted will become a part of the public record. Only one representative of an organization will be allowed to present oral comments and presentations will be limited to three to five minutes per speaker, depending on number of speakers to be accommodated within the allotted time. Speakers will be assigned a time to speak in the order of the date and time when their request to speak is received, along with the required submission of the written/electronic statement by the specified deadline.

In addition, any interested person may submit written comments to the IACC prior to the meeting by sending the comments to the Contact Person listed on this notice by 5:00 p.m. Eastern on Thursday, January 24, 2013. The comments should include the name, address, telephone number and when applicable, the business or professional affiliation of the interested person. All written statements received by the deadlines for both oral and written public comments will be provided to the IACC for their consideration and will become part of the public record.

The meeting will be open to the public through a conference call phone number and webcast live on the Internet. Members of the public who participate using the conference call phone number will be able to listen to the meeting but will not be heard. If you experience any technical problems with the webcast or conference call, please send an e-mail to IACCHelpDesk2012@gmail.com or by phone at (301) 339-3840.

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 5 days prior to the meeting.

To access the webcast live on the Internet the following computer capabilities are required: A) Internet Explorer 5.0 or later, Netscape Navigator 6.0 or later or Mozilla Firefox 1.0 or later; B) Windows® 2000, XP Home, XP Pro, 2003 Server or Vista; C) Stable 56k, cable modem, ISDN, DSL or better Internet connection; D) Minimum of Pentium 400 with 256 MB of RAM (Recommended); E) Java Virtual Machine enabled (Recommended).

NIH has instituted stringent security procedures for entrance onto the NIH campus. All visitors must enter through the NIH Gateway Center. This center combines visitor parking, non-commercial vehicle inspection and visitor ID processing, all in one location. The NIH will process all visitors in vehicles or as pedestrians. You will be asked to submit to a vehicle or personal inspection and will be asked to state the purpose of your visit. Visitors over 15 years of age must provide a form of government-issued ID such as a driver’s license or passport. All visitors should be prepared to have their personal belongings inspected and to go through metal detection inspection.

When driving to NIH, plan some extra time to get through the security checkpoints. Be aware that visitor parking lots on the NIH campus can fill up quickly. The NIH campus is also accessible via the metro Red Line, Medical Center Station. The Natcher Conference Center is a 5-minute walk from the Medical Center Metro Station.

Additional NIH campus visitor information is available at: http://www.nih.gov/about/visitor/index.htm

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.

Schedule is subject to change.

—
By Matt Carey

Note: I serve as a public member to the IACC, but I do not represent the IACC here or anywhere else. All comments and opinions are my own.

Optimal Outcomes for Autism

24 Jan

A recent study discussed people who were given autism diagnoses but later did not qualify for the diagnosis.  The study is Optimal outcome in individuals with a history of autism (full text online) and Emily Willingham has a discussion of it as Can People Really Grow Out of Autism? Since she’s discussed the study, I’ll focus on “optimal outcome”. At least my take on it.

The authors of the study refer to Optimal Outcome as

we require that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.

Other authors have considered individuals who “lose” autism diagnoses but remain intellectually disabled.

There is an additional group of children who lose the diagnosis, but still have significant intellectual or language disability (see for example Turner & Stone, 2007, and Sutera et al., 2007) and this is certainly another kind of good outcome for these children.

I have a different definition of “optimal outcome”. Happiness. Most parents want to see their kids happy. I don’t know why I should change my definition just because I have an autistic kid. And, yes, one can be autistic and happy. And, no, being non autistic is not the same thing as being happy.

It’s not a good definition for research. My guess is that there are reasonable “happiness” measures researchers can use, but it will likely be more difficult to reliably quantify than “not autistic”. But for this discussion I’m not a researcher.

I’ll take happy and autistic over non-autistic and unhappy as an optimal outcome for my kid any day.

Which is a good place to segue into the cure debate. I don’t spend a lot of time on the cure discussion. Partly this is because like optimal outcome, different people have different definitions of “cure”. Is a cessation of self injurious behaviors a cure of autism? Is the ability to mask one’s autism behaviors for long periods of time a “cure”? Is a complete change in the way in which one thinks a cure? The answer is yes–each of these is a definition some people chose. And there are more.

Where the cure discussion goes really wrong, in my opinion, is when people assert that “not autistic” is better than “autistic”. Often to the point of basically trashing autistics in the process by using terms like “train wrecks”, “tsunamis”, “burdens” or worse (yes, it gets worse). A lot of harmful language is used in promoting the idea of a cure.

When told that I am against an autism cure (strangely, I am rarely asked my opinion, I am told it) I sometimes respond, “which cure is that, exactly?” Makes people pause. If the conversation continues, I ask, “tell me the exact steps I need to take which you can guarantee will cure my child of autism”. The cure debate is a hypothetical topic. One which I wish more people would really engage in, but hypothetical. I wish people would engage in it to get to the point of at least accepting as valid the idea of “let’s make a world where if a person is offered a cure, she will be equally accepted either way, and will be offered the support she needs either way.” I guess that’s my idea for an “optimal outcome” for society.

—
By Matt Carey

Minamata Convention Agreed by Nations: thimerosal containing vaccines exempt from mercury ban

23 Jan

Shot of Prevention are reporting Decision Made: No Global Ban on Thimerosal. A worldwide treaty has been finalized involving reducing mercury in the environment. Much discussion of late focused on whether thimerosal containing vaccines (thimerosal being a mercury compound) would be included in the mercury ban.

According to the United Nations Enviromntal Programme (UNEP) press release on the Minamata Convention:

Governments approved exceptions for some large measuring devices where currently there are no mercury-free alternatives.

–Vaccines where mercury is used as a preservative have been excluded from the treaty as have products used in religious or traditional activities

–Delegates agreed to a phase-down of the use of dental fillings using mercury amalgam.

From my perspective I would be happy to see thimerosal replaced with another safe preservative. There is no tested alternative method–either through preservatives or improved cold-chain control of vaccine distribution. And this U.N. body, people highly focused on the need to reduce the worldwide emissions of mercury, has determined that the use of mercury containing vaccines can continue. In other words–the arguments made that thimerosal containing vaccines were potentially unsafe were not convincing to a body whose sole purpose is limiting exposure to mercury. This includes the argument that thimerosal containing vaccines increase the risk of autism. And for this site, that is the important take-away: the notion of a mercury induced autism epidemic really isn’t well supported. Yet another example of how unconvincing the argument is.

—
By Matt Carey

Is Slate misrepresenting the Neurodiversity movement?

22 Jan

In a word, yes. In, Is the Neurodiversity Movement Misrepresenting Autism?, Slate.com author and autism parent Amy Lutz argues that the neurodiversity movement is essentially dividing the autism community between “high-functioning” adults and parents of “low-functioning” children. Shannon Rosa clarifies this point for Ms. Lutz in Why Did Amy S.F. Lutz Attack the Neurodiversity Movement? That is a more full discussion of the article than here, and I encourage readers to read Ms. Rosa’s account.

I’ll consider two segments of Ms. Lutz’ article. First, what is essentially her conclusion:

What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed.

The author doesn’t see neurodiversity as a “real” rights movement because, in her view, neurodiversity implies that “we are all the same, with ‘intact minds’ that just need to be accessed.”

To anyone who has spent any time seriously considering the neurodiversity movement, the above statement is an obvious misconception. A straw-man argument, if you will. Just start with the name: neurodiversity. How one gets from a diversity movement to “we are all the same” is beyond me. Even after reading the article. Yes, I see the argument the author tried to make. I also know that her argument is full of misconceptions and, frankly, attacks.

I am more moved by ideas than movements, so I don’t use the term neurodiversity much. However, I can put my view simply: you and I think differently, but we are equals. You can derive a lot from that, but it’s one way of seeing “neurodiversity”.

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world.

Let’s take this in two pieces. First, her “overwhelming” evidence is basically arguments that some of the more known names of significantly challenged adult autistics are not what they present themselves to be. An easy argument to make if you misrepresent how these adults have represented themselves. Claiming that Amanda Baggs presents herself as typical of autistic development, for example, is plainly false. It is a rehash of old, tired attacks.

Now to the more important part the supposed division “between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world”.

First off, didn’t she say in the quote above that Neurodiversity proponents see people as being “all the same” and that if they were a “real” diversity movement, they would acknowledge that there are differences? But in this quote neurodiversity proponents believe autism is a “different” way of thinking.

Leaving aside the logical inconsistencies of the article, this line is an old false-dichotomy argument. Who says there is a division between disability and difference? A disability is a difference. Another way to say it is that autism is a disability and a difference. It’s redundant in my opinion, but sometimes redundancy is needed. Would I say “not worse”? Yes. Does that mean I deny the disability? That I don’t acknowledge the challenges posed by autism? That I don’t believe life is more difficult for autistics than non-autistics? No, no and no.

As I read it, Ms. Lutz’ comment implicitly states that disability is worse than not being disabled. From one online dictionary, I get this as the number one definition for “worse”: of more inferior quality, value, or condition. I have no reservations saying that my child has huge challenges, many of which will not be overcome even with great effort. Is any part of my child of “inferior quality, value, or condition”? No. I see different, not less. Not inferior. In need of great support, yes. But as an equal, not out of pity and without taking away rights and dignity.

Ms. Lutz finishes her article by positing that neurodiversity propenents act out of some level of ignorance, fed by what she asserts is misinformation about what autism really is. I believe Ms. Lutz has some ignorance to overcome on her own. She closes with a statement about “kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors” and how “any portrayal of autism that glosses over their profound disability closes the door on them all over again.” I would say that first we need to acknowledge that (a) this is not confined to children and (b) autism and dangerous behaviors can come without intellectual disability, and that segment of the population should not be glossed over either. But that aside, consider the basic question of how do we move forward with a very diverse population and see that all are served appropriately? The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population. But the way forward is not to claim some schism between “high-functioning” autistics and parents of those with different challenges. My experience is that once a person sees a strong civil rights aspect to autism–and disability in general–one sees the need to work for all in the population.

—
By Matt Carey

Dr. Bob’s Facebook delusions

21 Jan

Dr. Bob Sears is best known for his 2007 work, The Vaccine Book, ostensibly written “to give parents a balanced look at pros and cons of vaccination so that they can make an educated decision.” In reality, the book has only added to the unnecessary fear, uncertainty and doubt about vaccines that have driven thousands of parents to leave their children vulnerable to preventable diseases. And while America’s medical establishment has caught on to Sears, he still enjoys a following. His book has sold about 50,000 copies, and Sear’s Facebook page lists over 6,000 followers.

Last week Sears told his FB followers that we can only truly know that vaccines are safer than the diseases they protect us from if the CDC studies health outcomes of vaccinated and unvaccinated children. Sears no doubt includes autism in those “health outcomes”, since he has advised parents to avoid vaccinating their autistic children until they are “recovered” from the disorder.  Anti-vaccine activists have been agitating for such a study for years, most recently at the shameful Congressional anti-vaccine hearing last November 29. Jenny McCarthy’s Generation Rescue even attempted such a survey by telephone in 2007. It found that autism was more common among unvaccinated children than vaccinated.

Epidemiologists tell us such a study, done well, would be unethical, since it would mean leaving many thousands of children vulnerable to disease, just to prove what medical science already knows – that vaccines don’t cause autism. Sears says there are enough totally unvaccinated children around to conduct such a study, and on Facebook he cited a paper that supposedly shows that 5-10 percent of American children have never been vaccinated.

 The IOM and the CDC continue to hide behind the claim that to do a comparative study of unvaccinated versus vaccinated children would be unethical. But as long as they neglect to do this research, many parents will continue to decline vaccines over the concern about lack of safety research.

The IOM states that one challenge of an unvaccinated study is that there is an inadequate number of study subjects, as less than 1% of children are completely unvaccinated. I don’t agree with this statistic. It’s more like 5%, and could even be 10%. One brand new international study revealed that 10% of households surveyed had children who were completely unvaccinated. 10%!!! And it was the more educated and wealthier families that were more likely to be unvaccinated. The IOM’s claim that there aren’t enough unvaccinated children to study simply isn’t true. With over 4 million babies being born in the U.S. every year, they would have their pick of about 400,000 unvaccinated children to study each year.

Sears links to a meta-analysis of vaccine surveys published last summer in the journal Tropical Medicine and International Health. Xavier Bosch-Capblanch from the University of Basel, Switzerland, and his team reviewed 241 nationally representative household vaccination surveys in 96 low and medium income countries. The percentage of unvaccinated children (ages 12-59 months) was 9.9% across all surveys, but ranged from zero percent (Albania,Peru, and Uzbekistan) to 28.5% (Ethiopia). Sears’s claim that ten percent of American children are completely unvaccinated puts the country on par with Namibia (9.2% in 2007), Haiti (10.3% in 2006), and Yemen (10.9% in 2006). It also means that scores of developing countries, including Vietnam (1%) Tajikistan (.9%), and Sierra Leone (1.9%), should think twice before issuing visas for American children.

If Sears was truly serious about helping parents make an educated decision, he could have cited Allison Kennedy, a CDC epidemiologist, who  surveyed parents to examine intentions, behaviors and concerns about vaccines. In Confidence about vaccines in the United States: Understanding Patient Perceptions (2011), her team found  about two percent of US children aged six or younger were totally unvaccinated. Those numbers are in line with Smith et.al. (2004), which reported a minuscule .3% unvaccinated of children 19-35 months old. The CDC’s 2010 National Immunization Survey found that 1 percent of toddlers were completely unvaccinated.

Despite Sears’s best efforts, the percent of fully vaccinated children has increased over the past decade. That’s discouraging news for Sears and others who have doubled down on a vaxed v. unvaxed study. But overall rates should not mask the real harm of anti-vaccine propaganda  – encouraging community clusters of vaccine rejectionism that have led to unnecessary suffering. One such cluster incubated a measles outbreak in San Diego in 2008. The index patient was a boy who had just returned from a trip to Switzerland. By the time the virus was contained, four others came down with a disease that can lead to pneumonia, encephalitis, and even death. His family’s pediatrician? Dr. Bob Sears.

What kind of doctor, you might ask, would encourage parents to withhold an important vaccine? The kind who aligns himself with the worst elements of the antivaccine movement. The kind who misrepresents published science so as to fuel the anti-vaccine movement’s push for an unethical study. The kind to fabricate his own, untested vaccine schedule, then package it in The Vaccine Book.

—
By Autism News Beat

MMS, yeah, it’s bleach

11 Jan

Last year the AutismOne parent convention hosted a talk by someone promoting MMS as a treatment for autism. MMS is a bleach. But MMS supporters and defenders rush to discussions of MMS with claims that it is not a bleach and calling it a bleach is fear mongering.

Only, it is a bleach. As in, apply it to cloth and the color goes away. Don’t believe me? Check out MMS: Yes, It Is Bleach, an article by Emily Willingham at The Thinking Person’s Guide to Autism.

Comment on National prevalence rates of bully victimization among students with disabilities in the United States

10 Jan

Bullying is a major issue. This is especially true among the disabled. A recent study focused on bullying within the school aged autistic population, and I discussed that at the Autism Science Foundation blog. Another study has just come out recently in School Psychology Quarterly, National prevalence rates of bully victimization among students with disabilities in the United States. I hope to obtain the full paper and review the methods, but for now here is the abstract:

This study examined the prevalence rates of bully victimization and risk for repeated victimization among students with disabilities using the Special Education Elementary Longitudinal Study and the National Longitudinal Transition Study-2 longitudinal datasets. Results revealed that a prevalence rate ranging from 24.5% in elementary school to 34.1% in middle school. This is one to one and a half times the national average for students without disabilities. The rate of bully victimization was highest for students with emotional disturbance across school levels. Findings from this study also indicated that students with disabilities who were bullied once were at high risk of being bullied repeatedly. Elementary and middle school students with autism and high school students with orthopedic impairments were at the greatest risk of experiencing repeated victimization. Implications of the findings are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)

Students with disabilities are victims of bullying as much as 1.5 times more often than their non-disabled peers. The authors also found Elementary and middle school students with autism and high school students with orthopedic impairments were at the greatest risk of experiencing repeated victimization.

The fact that the disabled are victims of bullying at a high rate is not surprising. The fact that this includes autistics is not surprising. It is valuable, though, to get this documented. It does beg the question of what will happen to change this?

—
By Matt Carey

Comment on: The association between bullying and the psychological functioning of children with autism spectrum disorders

10 Jan

A study published recently addressed the issues of bullying among school age autistics: The association between bullying and the psychological functioning of children with autism spectrum disorders. The abstract is below. I wrote a discussion of this for the Autism Science Foundation’s blog:

Comment on The association between bullying and the psychological functioning of children with autism spectrum disorders.

OBJECTIVE: : Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs).

METHODS: : A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child’s psychological well-being and any psychiatric comorbidity. Multivariate logistic regressions were performed to determine whether specific psychiatric comorbidities were associated with an increased risk of involvement as victim, bully, or bully-victim. Analyses of variance determined the relationship between bullying frequency and psychological functioning. All models adjusted for child and school covariates.

RESULTS: : Children who were frequently victimized were more likely to present with internalizing symptoms, whereas children who frequently bullied others were more likely to exhibit emotion regulation problems. Children who were identified as frequent bully-victims presented with both internalizing symptoms and emotion regulation problems. Children with attention-deficit hyperactivity disorder (ADHD) and depression were more likely to have been victimized, whereas children with conduct disorder (CD) or oppositional defiant disorder (ODD) were more likely to have bullied other children. Children identified as bully-victims were more likely to have ADHD, CD, or ODD.

CONCLUSIONS: : Children with ASDs who had displayed bullying behaviors in the past month exhibited psychological impairments, including psychiatric comorbidity. The frequency of bullying behaviors was significantly associated with the level of impairment.

A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.

—
By Matt Carey

Last chance to participate: UJA Adults with Autism Survey

29 Dec

IAN, the Interactive Autism Network, the UJA Federation of New York and the Autism Science Foundation have teamed up to sponsor the Adult with ASD Survey.

The survey closes on December 31, so time is short to participate.  You can take the survey here.

Here is a description of the effort from the ASF:

As many of you know, there is little information about the changing needs of adults with autism spectrum disorders (ASD) to guide those planning programs and services. That is why the UJA Federation of New York and the Autism Science Foundation are asking adults with ASD (and their parents or guardians) to complete a survey addressing what is going well in daily life, and what is a challenge. The results of this survey will inform decision making with regard to which programs should be expanded and which may no longer be of value.

We invite you to take this survey by joining the Interactive Autism Network (IAN)—the world’s largest online autism research project—and then completing the UJA Adult with ASD Survey. As a member of IAN, you’ll be informed about future surveys and studies, with a chance to provide ongoing input regarding the experience of adults with ASD over time.

Your participation is critical, and will inform those planning programs about which resources and services adults with ASD and their families need most.

Eligibility for Study Participation:

You are eligible to participate in IAN and the UJA Adult with ASD Survey if you are:

An 18-35 year old adult with ASD who is independent (that is, you are not under anyone’s legal guardianship)
The parent of an independent 18-35 year old adult with ASD (that is, your adult son or daughter with ASD is not under legal guardianship and maintains the right to make their own medical and legal decisions)
The legally authorized representative of a dependent 18-35 year old adult with ASD (For example, you may have legal guardianship or medical power of attorney for the adult with ASD)
Participation Details:

IAN registration and this survey can be completed entirely online and will take approximately 20 minutes.

If you’d like to read the IAN Research study consent form, including privacy policies, before continuing, click here:

https://www.ianresearch.org/pdfs/ian_consent.pdf

Principal Investigator: Dr. Paul A. Law

Contact Information: If you have any questions, the IAN team is happy to answer them for you. You can contact them at 1-866-348-3440 or ian@kennedykrieger.org.

To begin registration and the survey, click on the link below:
http://bit.ly/ORf7d5

—
By Matt Carey

← Older Entries
Newer Entries →