Upcoming IACC Full Committee Meeting – December 14, 2010 – Bethesda, MD

8 Dec

The Interagency Autism Coordinating Committee will have a full committee meeting on December 14th. This meeting is to work on the update for the Strategic Plan.

Now is a good time to send the IACC your input. What would you like them to know as they make the Plan? What research should they focus upon? What should they not focus upon?

Want a quick way to send your thoughts? Click here to send an email with the subject “IACC public comment”.

Here are some links to send emails with various subject lines:

Please do more research involving issues concerning autistic adults

Please do more research on services

the current science doesn’t support spending money on the vaccine hypothesis

Here is the announcement. If you have the time, even for part of the day, it is worthwhile to listen in and hear how these decisions are made.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Tuesday, December 14, 2010 from 10:00 a.m. to 5:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

Meeting location:
The Bethesda Marriott – Google map imageMap and Directions
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and 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.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. 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.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service 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 above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

SafeMinds retaliates against skeptic blogger

7 Dec

SafeMinds is an organization with the stated purpose to “…to restore health and protect future generations by eradicating the devastation of autism and associated health disorders induced by mercury and other man made toxicants. ” SafeMinds has stayed with this purpose even as the years have gone by and the evidence has mounted that the SafeMinds hypothesis was incorrect (autism is not a form of mercury poisoning). Recently, SafeMinds produced an advertisement, framed as a public service announcement, focusing on mercury in the flu vaccine and tried to get these shown in movie theaters. As we discussed here recently, Elyse over at Skepchick started an effort to inform the movie theaters about SafeMinds. Her effort snowballed into a large petition and resulted in the movie theaters deciding to not show the SafeMinds advertisement.

Recently, SafeMinds has chosen to leave the discussion of ideas and take on Elyse in a personal attack, through their media effort at the Age of Autism. SafeMinds is not only a key sponsor of Age of Autism, but Mark Blaxill (SafeMinds board member) is one of the three principle editors of the Age of Autism blog.

Again, rather than discuss the issues, they pulled Elyse’s facebook photo


and posted this message

This is the woman who fought to pull the SafeMinds PSA’s from the theatres. It’s her FB profile page photo. She is anti-choice and wants to tell you that mercury is safe and that Thimeosal is good – according to her blog. She trolls AofA regularly. As do all the pro-vaccine-injury bloggers.

It was a call to mock and insult Elyse. A perfect example of cyber bullying. Amongst the comments to that FaceBook page was one extreme enough that one of the Age of Autism editors noted it and promised to remove it. “While I agree that the broken thermometer comment was out of order (the blog does not condone violent speech, so that comments is going.”

It took a while for them to make good on the promise. As in many hours later, after Elyse reported the abuse to the police. That comment does appear to be gone now. Many other abusive comments (but not all) also appear to be removed.

Rather than apologize for inciting the bullying effort, SafeMinds/AgeofAutism are defending themselves by claiming that Elyse was standing in the way of choice.

Stopping Americans unable to understand? What is she St. Skepchick? She interefered with medical choice and commerce. That’s her right to make the attempt. We dis not use her name. We pulled her public photo that she used here on FB. We ran it on FB, not the main site – our readers deserved to know who was behind (at the outer level anyway) the AMC campaign to stop the ads. We provide news. This was news.

No. It wasn’t news. And, no, Elyse was not interfering with medical choice or commerce. She was quite simply providing the theaters with information–allowing them to make informed consent about the SafeMinds advertisement.

The idea of SafeMinds being pro-choice on vaccines is rather ironic. Again a story from their outlet blog, the Age of Autism makes this clear. Two years ago, a theater in New Mexico was going to show the movie “Horton Hears a Who” combined with a free vaccination clinic. At that time, they had a connection to Horton star, Jim Carrey. Instead of allowing choice, providing information, they got Jim Carrey to force the cancellation of the event:

Following a long discussion with his representatives at Fox Entertainment – Who-ville – once again through Horton – was heard. The New Mexico test market of drive thru vaccines while at the movies with your children was stopped. Halted by Horton himself because he heard “we are here, we are here, we are here!” once again.

The bullying attack on Elyse wasn’t about choice, it was just a childish attempt at some sort of petty vengeance. Unfortunately it got out of control. I thank SafeMinds and the Age of Autism for editing the comments, but even what is left is unacceptable. It’s time for apologies, not excuses.

Shower used to severly burn autistic child

7 Dec

Just when you think you’ve heard everything about the pain non autistic people visit on autistic people, along comes a new scumbag with a new ‘method’ of hurting people:

An ex-con babysitter was sentenced to 50 years in prison Monday for using a shower to severely burn an 8-year-old autistic child after she soiled herself while in his care.

Incredibly, it seems that the victims mother sides with this person:

The defendant’s mother, Vivian Acosta, held up a poster board containing photos of him and the victim playing together as she testified on his behalf Monday.

“The children, he loves them,” she said. “I know he made a small error in leaving her alone, and I beg for mercy of the court. I know he knew better, but it was an accident.”

Yeah, the children, he loves them. Thats right up there with the stupid, it burns (pun intended).

During the trial, jurors heard testimony that the shower water reached up to 157 degrees and that human instinct would cause even those with severe autism to step away from such temperatures.

The pattern of the third-degree burns are consistent with the girl being held down, DeMartino said. The girl, whose autism prevents her from speaking, has undergone multiple surgeries and has almost died as a result of the burns, he said.

I don’t know who’s worse, the scumbag who held down this little girl and purposefully scalded her or the mother who’s excusing his actions.

Recording IEP meetings

7 Dec

I was in BestBuy (and another electronics store) this past weekend. As I wandered around I stumbled upon microphones. This reminded me that I want to upgrade my method for recording IEP (Individual Education Plan) meetings. For those who may be unaware, U.S. Law allows parents or districts to record IEP meetings. WrightsLaw points out that this is not a universal right in the U.S.: “State departments of education or school districts can require, prohibit, limit, or regulate the use of recording devices at IEP meetings.” California has state laws allowing recording of IEP meetings. From DisabilityRightsCa.org:

51. Can I tape record an IEP meeting?

Yes. Parents may tape record an IEP meeting, even without the school district’s permission, as long as the parents give the school district 24 hours notice of their intention to do so. Similarly, a school district may tape record a meeting with 24 hours notice to the parent. However, the district cannot tape record the meeting if the parent objects. If the parent objects to the district tape recording, then there can be no tape recording of the meeting by either the district or the parent. [Cal. Ed. Code Sec. 56341.1(f)(1).]

Under federal law, audio tape recordings made by the school district are governed by the Family Educational Rights and Privacy Act of 1974. [20 U.S.C. Sec. 1232(g).] In addition, you have the right:

(1) To inspect and review district-made tape recordings;

(2) To request that the tape recordings be amended if you believe that they contain information that is inaccurate, misleading, or in violation of the rights of privacy or other rights of the individual with exceptional needs; and

(3) To challenge, in a hearing, information that you believe is inaccurate, misleading, or in violation of the individual’s rights of privacy or other rights. [34 C.F.R. Sec. 99.10-99.22; Sec. 56341.1(f)(2)(A)&(B).]

Recording technology has changed a lot in the past few years. Only a few years ago, our district was still using tape recorders. Tapes are bulky and you might need a few tapes (and a lot of flipping of tapes) to get through a long meeting. You may find yourself transferring the tapes to a computer file anyway, adding more time and more chances to mess something up. Digital recorders are now ubiquitous. Smart (and not so smart) phones can serve as a digital recorder. Otherwise, there are a lot of options in the <$100 range (which wasn't the case a few years back). One can use a laptop, with the correct application (Microsoft windows includes an application that is limited to 60 second recordings).

IEP meetings are long and if you are recoding them, you should be prepared to listen to them. In addition, you may have to transcribe them. Room recordings from cheap microphones can be painful. Last think you want is the fatigue of listening for hours to an IEP meeting, with the fatigue of a bad recording, with the fatigue of having to transcribe, "And, on this very important point [garble]".

I'd be very interested in other people's experiences with somewhat more modern, yet portable equipment. Especially since now some digital recorders are packaged complete with speech-to-text software like Dragon Naturally Speaking. Software like that tends to be focused on dictation applications, where one person uses a microphone close up.

Girls less likely to be diagnosed with autism than boys

6 Dec

A recent study out in the Disability and Health Journal shows that girls are more likely than boys to remain undiagnosed. The study, by David Mandell‘s group at the University of Pennsylvania, evaluated data from the Autism and Developmental Monitoring Network (ADDM). This is the same group that collects and analyzes data for the CDC’s autism prevalence studies.

Each ADDM study concentrates on children from a specific birth year. In this case, children born in 1994. They review records (medical, educational or both as available) to determine which children meet the criteria for autism. Some children already have a diagnosis of autism in their records. Other children are determined to be autistic via the ADDM review.

Prof. Mandell’s group found that for those with existing diagnoses at the time of review, girls and boys were similar in terms of average age of diagnosis and first age of evaluation. However girls were more likely to be undiagnosed (medical or educational) at the time of the ADDM review.

Here is the abstract.

Sex differences in the evaluation and diagnosis of autism spectrum disorders among children.

Giarelli E, Wiggins LD, Rice CE, Levy SE, Kirby RS, Pinto-Martin J, Mandell D.

Division of Biobehavioral Health Systems, University of Pennsylvania School of Nursing, Philadelphia, PA 19104, USA.
Abstract

BACKGROUND: One of the most consistent features of the autism spectrum disorders (ASDs) is the predominance among males, with approximately four males to every female. We sought to examine sex differences among children who met case definition for ASD in a large, population-based cohort with respect to age at first developmental evaluation, age of diagnosis, influence of cognitive impairment on these outcomes, and sex-specific behavioral characteristics.

METHODS: We conducted a secondary analysis of data collected for a population-based study of the prevalence of ASD. The sample comprised 2,568 children born in 1994 who met the case definition of ASD as established by the Autism and Developmental Disabilities Monitoring (ADDM) Network for ASD surveillance. Children who had a history of developmental disability and behavioral features consistent with the DSM-IV-TR criteria for autistic disorder, Asperger’s disorder, and Pervasive Developmental Disorder-Not Otherwise Specified in existing evaluation records were classified as ASD cases via two paths: streamlined and nonstreamlined. Streamlined reviews were conducted if there was an ASD diagnosis documented in the records. Data were collected in 13 sites across the United States through the ADDM Network, funded by the Centers for Disease Control and Prevention.

RESULTS: Males constituted 81% of the sample. There were no differences by sex in average age at first evaluation or average age of diagnosis among those with an existing documented chart diagnosis of an ASD. Girls were less likely than boys to have a documented diagnosis (odds ratio [OR] = 0.76, p = .004). This analysis was adjusted for cognitive impairment status. In the logistic model, with the interaction term for sex and cognitive impairment, girls with IQ of 70 or less were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.70, 95% confidence interval [CI] = 0.50-0.97, p = .035). Boys with IQ greater than 70 were less likely than boys with IQ of 70 or less to have a documented diagnosis (OR = 0.60, 95% CI = 0.49-0.74, p < .001). This finding (less likely to have a documented diagnosis) was also true for girls with IQ greater than 70 (OR = 0.45, 95% CI = 0.32-0.66, p < .001). Girls were more likely to have notations of seizure-like behavior (p < .001). Boys were more likely to have notations of hyperactivity or a short attention span and aggressive behavior (p < .01).

CONCLUSIONS: Girls, especially those without cognitive impairment, may be formally identified at a later age than boys. This may delay referral for early intervention. Community education efforts should alert clinicians and parents to the potential of ASDs in boys and girls.

Alex Barton wins $350k

3 Dec

You may recall the case of Alex Barton the (then) five year old boy who was ‘voted‘ out of his class:

Melissa Barton said she is considering legal action after her son’s kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn’t like about Barton’s 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex — who is in the process of being diagnosed with autism — out of the class.

This was one of the few instances the whole autism community spoke as one to voice their outrage.

Anyway, time has moved on and today it has been announced that Alex Barton has won $350k damages. Good for him.

And I do believe that. It will be good for him. However, I wonder if it is good for the issue of wider autism advocacy. Whilst I believe it is right that he should win this award I notice that:

The teacher who held the vote, Wendy Portillo, was originally suspended a year without pay. The school board has reversed the decision and has reinstated her.

How does this help future autistic children coming through this teachers classroom and who will be exposed to her (to use a very kind word) strange ideas about what autism is and how best to deal with it?

It’s my opinion that she should’ve continued to be placed under suspension (with or without pay) until she had completed a course in autism awareness. That in fact should’ve been the very _least_ that should’ve happened.

Portillo is an educator. An educator at the prime point in a pupil’s life. The lessons and attitudes she shares with them will stay with them for the rest of their lives in some shape or form. At the point she decided to ridicule young Alex Barton she had an opportunity to teach her class the _right_ way to deal with the issue of behaviour in the wider world and also to provide a ‘teachable moment’ to her pupils about what autism was and the nature of autism. She elected to do neither and instead decided to make a mockery of Alex Barton.

The lesson of this incident must stay with the autism community. Autistics are prime targets for ridicule and bullying – even from adults who should know better. We must strive as a whole community to find ways to ensure this doesn’t become any more common than it already is.

IACC Subcommittee for Planning the Annual Strategic Plan Updating Process tomorrow (Dec. 3rd)

3 Dec

Tomorrow there will be a subcommittee meeting for the IACC to work on the Strategic Plan. You can listen in or watch via webinar. It is likely past time for any public comments to be accepted for this meeting, but if you have anything to suggest, they will keep it and distribute it after the meeting (possibly in a future meeting).

Reminder: Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process

Please join us for an IACC Subcommittee for Planning the Annual Strategic Plan Updating Process meeting that will take place on Friday, December 3, 2010 from 10:00 a.m. to 4:00 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: The subcommittee will discuss the updating of the IACC Strategic Plan for ASD Research.

Meeting location:
The Bethesda Marriott
5151 Pooks Hill Road
Bethesda, MD 20814

The meeting will be open to the public and 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.

The meeting will be remotely accessible through a webinar and conference call. 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.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service 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 above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com.

Webinar Access: https://www2.gotomeeting.com/register/687738010

If you experience any technical problems with the web presentation tool, please contact GoToWebinar at (800) 263-6317.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Blogger flex muscle–now how about for productive purposes?

2 Dec

Bloggers, largely from outside the autism communities, managed to halt plans to show a scary vaccine themed advertisement which SafeMinds was trying to place in movie theaters for the week of the US Thanksgiving holiday.

This is all well and good, but there has to be more that can be accomplished. More as in something that advances a good cause rather than obstructs a bad one. For the most part I don’t blog to advocate.

There have been some notable successes by bloggers adding to advocacy efforts, in my opinion. For example, stopping the NYU “Ransom Notes” campaign and getting Autism Speaks to back off of the “I am Autism” video. I can only stand back in awe at the efforts of Kathleen Seidel at Neurodiversity.com in depth of reporting on important subjects.

While I don’t plan on moving to making my position here into primarily calling for action, I do hope that with the waning of the vaccine/mercury movement, more effort can be made on directly improving the future my child will live in.

Unfortunately, while it is waning, the vaccine debate will not go away. The way it is waged is damaging, to society as a whole and to the autism communities in particular.

It may be my own personal bias, but I do believe that scientific research has a great benefit in that quest. I believe that the United States, as the leader in autism research funding, should be leading the way. I will continue to follow and encourage others to participate in the IACC process through stakeholder comments.

I also strongly believe in human rights. I believe that we as a people have a long way to go still to insure the rights of the disabled. It is unfortunate that there are so few autism organizations which put the dignity and rights of autistics as a prime focus. It is absolutely shameful that many so-called autism organizations willingly and purposefully act in ways which harm the dignity and rights of autistics.

If we could only harness half of the energy that has been applied to the vaccine-causation discussion, we could make huge gains. 2011 has at least one real goal to work for. If you read the text of the Combating Autism Act (CAA), you will find this phrase a number of times: “Sunset.–This section shall not apply after September 30, 2011.” Yes, the CAA is up for renewal in 2011. The CAA reinstituted the Interagency Autism Coordinating Committee (IACC). This group drafts the Strategic Plan for autism research funding in the United States. The Plan was instrumental in funneling a significant amount of the federal economic stimulus money into autism research–had there been no plan in place, that funding may have been less or zero. Moving forward, it is time to push for a greater amount of research funding to be applied to areas that can have a direct impact on the lives of autistics. Much of the funding is focused on causation and treatments aimed at young children. Much more focus needs to be applied to older children, adolescents and adults. Much more.

Advancing paternal age and risk of autism

2 Dec

This isn’t the first study to look at paternal age as a possible risk factor for autism but it is, I believe, the first meta-analysis of the subject. The conclusions of the study were:

Based on data from a birth cohort, a family-based study and a meta-analysis, we provide the strongest and most consistent evidence available that advancing paternal age at the time of birth of offspring increases the risk of autism. De novo germline mutations, epigenetic alterations and life course toxic exposure may partly explain the observed association. The evidence is substantial enough to justify a search for the underlying mechanisms in both human and animal models

An interesting conclusion for a few reasons. First and foremost the idea of paternal age being a definite risk factor for autism. Secondly the authors don’t shy away from the idea that ‘life course toxic exposure’ may explain the association. Its not exactly a new observation amongst science (despite what some observers think) but its good to see it placed so clearly amongst the other clear risk factors.

There will be those, I predict, who will have a go at this study for somehow ‘blaming’ fathers/parents. It has happened in the past and will no doubt have the same effect on those who’ll attack this study for their own reasons.

Another example of misdiagnosed autistic adults

2 Dec

I am very bothered by the strong possibility that a there exists a large group of autistic adults who are either undiagnosed or misdiagnosed. Demonstrations of this come up over and over in the research literature. Such is the case with Missed diagnosis of autism in an Australian Indigenous psychiatric population, which came out on Pubmed today.

This recent example is from a very specific group: Indigenous Australians hospitalized with schizophrenia diagnoses. This particular group was 215 patients. Of this group, 14 were selected (I haven’t read the paper so I don’t know how this subgroup was selected). Out of that particular subgroup, 13 were “considered” to have a diagnosis of autism.

Missed diagnosis of autism in an Australian Indigenous psychiatric population.

Roy M, Balaratnasingam S.

South Birmingham Primary Care Trust, Birmingham, UK.
Abstract

Objective: The aim of this paper is to review the diagnosis among adult Indigenous patients from the Kimberley region of Western Australia who had an existing diagnosis of schizophrenia. A visit from a psychiatrist specializing in intellectual disability provided the opportunity for conducting psychiatric assessments from a developmental perspective. Method: Selected patients with schizophrenia were assessed from an intellectual disability perspective from an active case load of 215 patients. Result: Thirteen out of 14 selected patients were considered to have a diagnosis of autism when a developmental history was undertaken. Case studies are presented to illustrate the overlap in symptoms and potential for the diagnosis of autism to be missed. Conclusions: Autism spectrum disorders may be missed in Indigenous population groups. This has implications for treatment and service provision. Clinicians need to be mindful of the diagnostic possibility that an autism spectrum disorder might be masquerading as schizophrenia in the context of intellectual disability and atypical presentation.

Misdiagnosis of autistics happens. It happens in the U.S., the U.K. and elsewhere. Again, this really bothers me. It bothers me that there seems to be little focus on this issue by autism advocacy organizations, even by the research funding agencies.

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