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Illini with Asperger Syndrome wins slot in U.S. geography bee.

10 Apr

An article in the Chicago Tribune, Palatine student qualifies for National Geographic Bee in Washington, D.C., describes how a 13 year old won the slot for Illinois in the National Geographic Bee:

At night, 13-year-old Anton Karpovich curls up with a good atlas.

“Geography gives me a way to get away from the world,” said Anton, who has Asperger’s syndrome, a mild form of autism.

On Friday, he didn’t want to get away. Anton, an eighth-grader from Walter R. Sundling Middle School in Palatine, won the state qualifier for the National Geographic Bee.

The rest is on the Tribune’s website.

He gets a paid trip to DC for the national competition. I wish him good luck.

Jenny McCarthy asking for grant from Pepsi for Generation Rescue

9 Apr

Pepsi has a grant program, the Pepsi Refresh Project. The idea is simple, organizations and people can apply for grants in different categories ($5K, $25K, $50K and $250K). Those projects that get the most votes each month get funded.

Jenny McCarthy is asking people to vote for Generation Rescue’s plea: Help children with Autism throughout the USA. The stated purpose is:

– Provide biomedical treatment grants for families who can not afford it. Each grant provides two visits with a physician specifically trained to treat autism and diagnose the child’s needs. The grant also provides essential vitamins and minerals that scientific studies have shown are deficient in children with autism, as well as science-based laboratory testing.

– Each grant costs $2,500. The support of $250,000 will allow us to provide treatment for 100 families.

Here is what Generation Rescue had to say about their program on their website:

Generations Rescue’s Rescue Family grants are designed to provide support to individuals and families affected by Autism Spectrum Disorders. Each grant recipient will receive 2-doctor visits with a specially trained physician who treats autism; vitamins, minerals and supplements for 90 days, a Generation Rescue Rescue Mentor and dietary intervention training.

$2,500 buys $90 worth of supplements and two doctor visits?

The Pepsi idea is pretty cool. Here’s my suggestion: go to the website, search under the term disability, and vote for some cool projects.

What changes are in store for Generation Rescue?

9 Apr

If you haven’t read the celebrity gossip news you may have missed it (and good for you!). Jenny McCarthy and Jim Carrey have split. As an aside, in classic Hollywood fashion, news also just came out that her ex husband is in a new celebrity relationship. I’ll never understand the way Hollywood uses relationships for image promotion.

That said, this is not an easy thing to blog about. First, there is the fluff component. This isn’t a celebrity gossip blog. Second, Jenny McCarthy’s kid is only seven. He doesn’t deserve to lose another father figure. I wish him well.

One question this poses is whether Jim Carrey will continue with Generation Rescue?

It appears not. Generation Rescue has revamped their website. The picture of Jim Carrey, Jenny McCarthy and Evan McCarthy is gone. GR is now just “Jenny McCarthy’s autism organization”. Jim Carrey is no longer on the page of the Board of Directors.

Jenny McCarthy and Jim Carrey were the wealthy celebrity couple that revitalized Generation Rescue. And, let’s face it, Jim Carrey is the part of the couple with most of the celebrity and wealth.

The Generation Rescue website is probably in flux so we shouldn’t jump to any conclusions about what is missing as of now. That said, consider this:

Not only is Jim Carrey missing, but Dr. Jill James is no longer listed as a part of their science advisory board.

Mention of Desiree Jennings is gone. (She is the person who claimed that a flu vaccination caused dystonia, a claim that didn’t appear to hold up to scrutiny ). I don’t think this signals anything other than it was a convenient time to quietly pull support for someone who was, well, a liability.

On the main page for Generation Rescue, Jenny McCarthy is pushing hard to get a $250,000 grant from Pepsi. Is this prompted by the loss of Jim Carrey’s financial support? If you haven’t seen the plea from Ms. McCarthy, consider it. At least the first 20 seconds. That way you can hear her state that Generation Rescue “…helps and Treats thousands, millions of children with autism”

Yes, millions of children are supposedly helped by Generation Rescue. That would be more autistic kids than in the entire U.S..

I remember when Jim Carrey first hit the scene. He paid for a full page ad for Generation Rescue in USA Today. Just up and paid for it. Those ads cost over $200,000 as I recall. Now GR is pushing hard for a grant of that size.

Jim Carrey was a bit of a lightweight when it came to autism and disability issues. He demonstrated that clearly at the Green Our Vaccines rally. But, he was an asset to Generation Rescue. His leaving can’t be helping GR.

IACC conference call on the Strategic Plan

8 Apr

I just received this announcement from the IACC:

A Conference Call and Webinar of the Interagency Autism Coordinating Committee (IACC) Subcommittee for Planning the Annual Strategic Plan Updating Process

Please join us for a conference call and webinar of the IACC Subcommittee for Planning the Annual Strategic Plan Updating Process that will take place on Monday, April 19, 2009 from 10:00 a.m. to 12:00 p.m. ET.

No registration is required

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

Webinar Access https://www2.gotomeeting.com/register/455522202

The agenda for this conference call is to discuss plans for updating the 2010 IACC Strategic Plan for Autism Spectrum Disorder Research.

Please visit the IACC Events page for the latest information about the conference call, including access information, as well as all other IACC events.

For more information about the IACC, please visit www.iacc.hhs.gov.

Now follow the IACC on Twitter (www.twitter.com/IACC_Autism).

The Contact Person for this conference call 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
IACCpublicinquiries@mail.nih.gov
Please Note: This conference call may end before 12:00 PM if the discussion is completed ahead of schedule.

Young Autistic and Stage Struck

8 Apr

Channel 4 in the UK has this show: Young Autistic and Stage Struck. I have to see if I can download it from iTunes, as it looks like it may be very cool.

This landmark series follows nine autistic youngsters as they attempt to produce their very own stage show, under the guidance of theatre professionals who’ve never worked with an autistic cast before

The synopsis for Episode 1 looks good:

The first episode of the series introduces the first five youngsters. Twelve-year-old Ben has high functioning autism: he’s exceptionally bright but experiences acute loneliness. But as the project develops he starts to bond successfully with the other youngsters.

Andrew, 17, is classically autistic, and despite limited social skills, he is very keen to have his first proper relationship with a girl. From day one he starts getting closer to Claire, 19, and takes her on the first date of his life: a night at the cinema. Claire is a talented singer and pianist who also struggles socially.

Mollie, 11, is prone to tantrums and lengthy sulks, which test her mother’s considerable patience. She suffers from PDA – Pathological Demand Avoidance – a pervasive developmental disorder with symptoms including mood swings, language delay and obsessive behaviour. A talented singer, Mollie was diagnosed with autism at four.

Eleven-year-old Jozsef is more challenged by his autism, but his playfulness makes him endearing to others and soon turns him into the group joker.

Basically, it looks like a reality show where they recruit a group of autistic kids, working with the National Autistic Society, and together with Lyric Hammersmith help the kids workshop a show.

What a cool idea.

A clarification

7 Apr

The following post was written by a group of LBRB authors

LBRB is produced by team of writers who do not always agree on everything. But we each expect the others to ensure that statements of fact can be corroborated. Mostly this works. But once in while these expectations are not met and one of us is so certain of their opinion that it is presented as fact. This happened recently with a story about Danish scientist Poul Thorsen, who is at the centre of investigations into the disappearance of $2 million in research grants. Because he was one of the authors on two studies that showed no evidence of a vaccine autism link anti-vaccine campaigners at The Age of Autism blog seized on this story as soon as it emerged and argued that Thorsen’s alleged dishonesty regarding the missing funds meant that these studies were tainted.

At the time, coming soon after Wakefield’s disgrace at the GMC and the withdrawal of his now discredited Lancet paper, this seemed a little too convenient. Was the story a fabrication? Were Age of Autism the willing victims of an elaborate hoax? One of our authors thought so and wrote a post which proved to his satisfaction that it was so. A second post by him compounded the error. Both posts were removed (as they were incorrect) and this one https://leftbrainrightbrain.co.uk/2010/03/autism-study-doctor-facing-grant-probe/ stands in their place.

Age of Autism is now trying to use this to attack LBRB founder Kev Leitch, saying he is to blame for allowing the now withdrawn posts to appear in the first place. And the rest of us are guilty by association. We are in good company.

Age of Autism regularly lies about those it sees as opponents. It famously exaggerated Paul Offit’s earnings from the vaccine, Rotateq, stated that he voted for its inclusion in the vaccine schedule and was reprimanded by a congressional committee. All false. None withdrawn.

Another bete noir for AoA is Richard Roy Grinker, whom they regard as an “epidemic denialist.” GRINKER’S STINKER: HIS WIFE RUNS THE IACC was their response to the news that Joyce Chung was the new executive secretary of the Interagency Autism Coordinating Committee. Apparently being married to someone AoA disagrees with makes you open to corruption.

They accused Simon Baron-Cohen of lacking humanity because he wrote about the positive aspects of autism. Eric Fombonne, Catherine Lord and Bennet Leventhal were called parasites because they gave evidence against the vaccine autism connection. They have campaigned against Julie Geberding when she was director of the CDC because, like Simon Baron-Cohen she “lacked humanity” for failing to agree that there was a vaccine induced autism epidemic.

None of these posts have been taken down. No corrections have been published. No apologies have been made. LBRB will continue to make mistakes and when they are pointed out we will correct them. We will continue to allow open debate in the comments to our posts. But we will not be lectured by the anti-vaccine fanatics and autism haters that infest The Age of Autism.

Polly Tommey poses as advocate for autistic adults

7 Apr

Polly Tommey is in the news again with this piece in the Guardian, Attention-grabbing antics for autism. It concerns her latest poster campaign, timed to coincide with the start of the General Election.
Hello boys polle tommey poster

I have left the following comment.

I have followed Ms Tommey’s attempts to present herself as a mainstream autism advocate for some time now on my blog, Action for Autism, and your headline,”Attention Grabbing Antics” is apt. If Ms Tommey wants us “to move away from the discussion about vaccines because she knows how divisive it is” she could make a start by removing her current Face Book campaign, “Mothers Supporting Andrew Wakefield’s Work.”

Ms Tommey complains about “bickering.” But other organizations have no problem working together. The Autism Act came about with the support of 15 autism organizations working together. Many of their members served on the External Reference Group for the Autism Adult Strategy for England which reported to the government. They mobilized their members to submit over a thousand responses to help shape government strategy. This will be reflected in the statutory guidance that will be published later this year. Ms Tommey’s contribution to all this was nil.

She states that “we haven’t a clue what to do with adults with autism.” That is because she and her supporters have spent the last 10 years arguing that autism is a biomedical disorder of childhood that is treatable with the untested and unproven interventions marketed by her husband. The National Autistic Society has taken a different stance with its Don’t write Me Off campaign Most of us are not interested in what to do with autistic adults. But we we are trying to find out what we can do for them and what they want for themselves.

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U.S. Government calls for proposals in autism research

7 Apr

Do you want to know what sort of research the U.S. government is considering funding? Well, here is the announcement This call for grant proposals is based directly on the Interagency Autism Coordinating Committee’s (IACC) Strategic Plan.

Last amongst the list, and likely in terms of funding, is “services”. This is the one are where adults are specifically mentioned.

Here are a few lines pulled out for those who may not want to read the entire call. Emphases are added by me:

Under epidemiology:

Studies of the genetic and environmental epidemiology of autism to determine risk and protective processes in the etiology of autism…

So, yes, environmental causation is being funded. Also under epidemiology:

studies of their developmental course across the life-span

This is good and much needed: an understanding of how autistics develop across the lifespan. This is not, after all, a childhood disorder.

Yes, there is funding for treatments, specifically “Pharmacological/Biological Interventions”. These include the opportunity for the alternative medical community to prove itself:

studies aimed at developing and testing the efficacy and safety of botanical and dietary supplemental CAM agents that specifically target symptom management

Here is a more full version of the announcement:

Purpose

The purpose of this Funding Opportunity Announcement (FOA) is to encourage research grant applications to support research designed to elucidate the etiology, epidemiology, diagnosis, treatment, and optimal means of service delivery in relation to autism spectrum disorders (ASD).

In response to the urgent public health significance of Autism Spectrum Disorders (ASD), Congress passed the Combating Autism Act (CAA) of 2006. Through this Act, Congress intends to accelerate the pace, and improve coordination of scientific discovery in ASD research. The Strategic Plan for ASD Research, a requirement of the CAA, was developed with the input of the scientific community, as well as advocates and advocacy organizations, including parents, providers, and individuals with ASD. The plan consists of short and long term research objectives across a range of topics, including those relevant to the heterogeneity of ASD. This FOA is intended to support the broad research goals of the Strategic Plan for ASD Research. (http://iacc.hhs.gov/reports/2009/iacc-strategic-plan-for-autism-spectrum-disorder-research-jan26.shtml),

Research Objectives

Autism Spectrum Disorders share a cluster of impairments in reciprocal social interaction, communication, and the presence of stereotyped behavior, interests, or activities. These complex disorders are usually of lifelong duration and affect multiple aspects of development, learning, and adaptation at home, in school, and in the community, thus representing a pressing public health need. The etiologies of these disorders are not yet understood, but may include a combination of genetic, metabolic, immunologic, or infectious or other environmental influences.

Clinical research involving these disorders requires well-integrated, multi-disciplinary, methodologically-rigorous scientific approaches and access to a sufficient number of well-characterized patients with these disorders. Basic research into the pathophysiology of autism and autism spectrum disorders, including research on brain mechanisms and genetics, is of special interest. Also of high priority are clinical and applied investigations that may lead to the development of diagnostic research instruments, treatments, and interventions, including complementary and alternative medicine [CAM] strategies. Specific areas of interest thus include epidemiology, early identification and diagnosis, genetic studies, brain mechanisms, communication skills, cognitive neuroscience, psychosocial (behavioral) interventions, pharmacological and other biological interventions, and support and rehabilitative services across the life-span, including adulthood and the transition to adulthood.

Areas of interest include, but are not limited to, the following:

Epidemiology: Studies of the genetic and environmental epidemiology of autism to determine risk and protective processes in the etiology of autism, including environmental exposures during pregnancy and early childhood; longitudinal studies of high-risk populations; epidemiologic research on interactive genetic and environmental factors or processes that increase or decrease risk for autism; research on the expression of the full range of autism spectrum disorders; studies of their developmental course across the life-span; studies that characterize the range of expression within families; and research on co-occurring features, especially research that characterizes and quantifies risk and protective processes associated with co-occurrence. Also of interest are clinical epidemiologic studies of autism spectrum disorders in clinical settings, including studies of clinical decision-making in personal-encounter care for individuals and families.

Screening, Early Identification, and Diagnosis: Key diagnostic and phenotypic features associated with various stages of development; development of new screening tools for use in a variety of settings; assessment of comorbid features including hyperactivity, attentional or executive dysfunctions, and epilepsy; the creation of new measures to be used in longitudinal studies, and measures that further differentiate the subtypes of autism spectrum disorders; and, developmental factors relevant to reliable and valid diagnosis.

Genetic Studies: Family-based or population-based genetic analyses that aim to 1) Identify specific susceptibility genes using candidate gene/region based approaches, whole exome as well as whole genome sequence approaches; 2) Investigate epigenetic mechanisms and long range control of gene expression; 3) Conduct high-resolution mapping and positional cloning studies; 4) Detect locus heterogeneity; and 5) Analyze the interaction of autism susceptibility genes with environmental exposures and/or genes responsive to environmental insult. An area of particular interest is the effect of genetic factors on therapeutic drug response in individuals with ASD (see Pharmacogenomic Studies, below).

Brain Mechanisms: Studies of brain mechanisms underlying the development, regulation, and modulation of behaviors characterizing autism and autism spectrum disorders, particularly those mechanisms involving communication and social interaction; studies of brain mechanisms and biological factors underlying autistic regression, or the loss of previously acquired skills; studies of brain mechanisms involved in the development of abnormal electroencephalograms and epilepsy and studies to clarify the subtypes of seizures and seizure disorders in autism; studies to define the neurobiological basis of neurological abnormalities and neuropsychiatric symptoms and the exacerbation of these symptoms, including the role of neuroimmune/autoimmune factors and mitochondrial dysfunction; studies that seek to define basic processing deficits using neuropsychological and cognitive neuroscience techniques; studies using animal models to examine brain dysfunction related to autism and autism spectrum disorders, based on either genetic or environmental factors or their interaction; studies using novel reagents and tools to identify molecular, cellular, or developmental mechanisms distinguishing autism spectrum and control subjects.

Shared Neurobiology of Autism with Fragile X, Rett Syndrome, and Related Disorders: Studies of developmental and functional processes, pathways, and brain mechanisms that will lead to an understanding of shared etiology or pathophysiology among these disorders. Analysis of autism-related neurobiological and behavioral phenotypes in related “single gene” disorders. Of particular interest are projects that focus on basic research and/or preclinical testing in model systems to develop and assess the safety and biological activity of novel therapeutic compounds that could be used to treat autism and related disorders. There is also significant interest in analyses that would identify useful and specific clinical endpoints that would register measurable improvements in response to treatment interventions in clinical populations as well as studies that would facilitate future development of clinical trials in these populations.

Cognitive Science: Developmental studies of relevant behaviors during infancy including attention to social and nonsocial stimuli, affective behavior, gaze, vocalization, imitation, initiative, reciprocity, attachment, play, compliance, and self-recognition and their emergence in children with autism and autistic spectrum disorders; research on the delays and deviations in social behavior and cognition during preschool and middle school, including empathy, receptive social cognitive deficits (i.e., difficulties understanding others), and expressive difficulties; studies leading to more sophisticated tests of higher cognitive functioning, especially in social, communicative, reasoning, and problem-solving areas, as well as tests of basic attentional, emotional and cognitive deficits that may underlie these deficits or their precursors; studies of theory of mind, of unconventional verbal behaviors, and of the sensory-motor factors involved in relevant social cognition; and the development, validation, and refinement of interventions designed to address deficits in complex social and cognitive abilities or their developmental precursors; interventions designed to lessen or remediate cognitive deficits.

Communication Skills: Longitudinal, developmental studies of behaviors that are precursors to later communication and their emergence in children with autism and autistic spectrum disorders; sensory, motor, and social-cognitive impairments that impact interaction and communication; predictors of loss of or regression in expressive language abilities; interventions designed to remediate communication and related deficits across the life-span.

Pharmacological/Biological Interventions: In addition to pharmacological agents that specifically target the core features of autism and autism spectrum disorders: studies of the efficacy and safety of pharmacological and combined treatments for the most common and impairing psychopathology associated with autism (e.g., hyperactivity, impulsivity, aggression, self-injury); studies that relate characteristics of individuals (or diagnostic subtypes) to therapeutic response and treatment outcomes (also see Pharmacogenomic Studies, below); new approaches to treatment that build on advances in neuroscience, genetics, immunology, and other neurobiologic fields; identification and validation of novel treatment targets and molecular screening approaches or biomarkers that assess effects on key biological, neurodevelopmental and/or behavioral endpoints disrupted in ASD; focused interventions that test specific theories or hypotheses regarding possible neuropathogenesis; studies that address the benefits of combined drug and cognitive, behavioral, or psychosocial interventions; studies aimed at developing and testing the efficacy and safety of botanical and dietary supplemental CAM agents that specifically target symptom management; development of innovative methodologies and outcome measures.

Pharmacogenomic Studies: Analysis of SNP and DNA sequence data that 1) Predict therapeutic response or adverse reactions to drugs; 2) correlate drug response profiles with intermediate phenotypes (e.g., brain imaging, neurophysiology, learning and memory, sustained attention); 3) identify biomarkers to resolve clinical heterogeneity and heterogeneity of therapeutic drug response; 4) apply high-throughput approaches to screen for drug candidates metabolized by or inhibitors of polymorphic drug-metabolizing enzymes, e.g., CYP2D6; 5) studies of genetically determined functional changes in nuclear and cell surface receptors to explain the ineffectiveness of therapeutic agents and adverse or paradoxical drug responses; 6) studies of allelic variation occurring in individual transporter genes that are associated with a functional consequence.

Psychosocial Interventions: Studies to develop new treatments (e.g., behavioral, cognitive-behavioral, mind/body and manipulative therapies) and that validate, refine, and compare approaches to the treatment of persons with autism and autism spectrum disorders and their families, as well as studies that analyze and define the critical features of effective intervention; studies that relate characteristics of individuals (or diagnostic subtypes) to treatment outcomes; research on relevant contextual factors including physical and community environments, parent-child and sibling-child relationship factors, and peer-child interactions; studies addressing generalization or the transfer of learning from one setting to another; studies that develop and test interventions for infants and toddlers who are at-risk for autism spectrum disorders; studies that develop and test interventions to outcome in school and community settings throughout the lifespan; development of innovative methodologies and outcome measures.

Services Research: Research on the organization, delivery, coordination, and financing of services for persons with autism spectrum disorders, and their families, within or across service settings; studies aimed at better identifying and addressing changes in service and rehabilitative needs across the life-span, including during transitions from childhood to adolescence, and adolescence to adulthood; interventions to improve the quality and outcomes of treatment and rehabilitation services; studies to develop improved measures of adaptive capabilities for children, adolescents, and adults with autism spectrum disorders; studies of ways to coordinate or integrate services across settings including specialty mental health, general health, and other settings such as educational, vocational, and housing services, in order to maximize receipt of appropriate services; and research on the economic factors effecting the delivery of needed services and treatments including cost-benefit, cost-effectiveness, and cost utility analyses of service interventions.

General Election called in the UK

6 Apr

The leaders speak about autism:

Gordon Brown

Too often people with autism don’t reach their full potential because those around them do not understand the condition. On United Nations World Autism Awareness Day, everyone should challenge their perceptions. I don’t find it acceptable that many want to work but only 15 per cent of people with autism are in paid employment. Or that many want to live independently but almost 50 per cent. of adults with autism live with their parents.Recognition and awareness in frontline public services is critical to giving those with autism the support they need. That’s why our recently published national autism strategy Rewarding and Fulfilling lives, is backed by legislation and sets a clear framework for creating that support.

David Cameron

United Nations World Autism Awareness Day is an important opportunity to raise awareness of the challenges that people with autism and Asperger Syndrome can face especially during times of economic difficulty. At present too many people with autism are being held back from fulfilling their potential. We need to break down the barriers which stop them doing so, including barriers to work. As a compassionate society we need to provide for those who cannot work, so we support moves towards providing personal budgets for those who require constant care to make sure they get the support they need. People with autism or Asperger Syndrome who are looking to work or training to help them into employment, need the right kind of help at the right time. Tapping the expertise of the private and voluntary sectors is one way we can make sure the assistance we provide is tailored to people’s individual services, helping lift people out of poverty and promoting greater independence.

Nick Clegg

‘It’s deeply, deeply alarming that families are more likely to live in poverty if they have a child or adult who suffers from autism or Asperger’s Syndrome. More needs to be done to change this. There is a challenge facing politicians of all parties to ensure that these families are not forgotten. It is so important on UN World Autism Awareness Day we highlight the difficulties facing those who live with autism and Asperger’s Syndrome and look for a way forward. It is vital that every adult and child with autism and the parents, carers and family who look after them with such passion and dedication receive all the support they need. From targeting extra cash to schools helping the children who need it most to giving carers a full week off every year, Liberal Democrats are fully committed to ensuring that those living with autism or Asperger’s Syndrome get a fair deal.’

Did a teacher try to sicken an autistic student?

6 Apr

That is the question posed by a lawsuit, discussed in Lawsuit: Ind. teacher tried to sicken autistic boy. The student is autistic. He is also allergic to peanuts. The allegation is that the teacher offered the child a candy bar with peanuts in order to sicken the child enough that he wouldn’t go on a field trip. The teacher was allegedly afraid that the child would likely misbehave on the trip:

The mother of an 8-year-old autistic boy with severe peanut allergies said Friday that an Indianapolis teacher gave her son a peanut-filled candy bar in hopes of making him sick so he wouldn’t go on a field trip.

A lawsuit filed by the boy’s mother, Anita Young, alleges that special education teacher Trinda Barocas told a classroom aide that the boy would likely misbehave and “maybe he could be sick enough not to attend and we won’t have to deal with it.” Young said her son, Jacob, who is mostly nonverbal, gets hives and experiences swelling if he merely touches peanuts.

The child is a picky eater and didn’t recognize the candy, so he didn’t eat it.

The parent found out when classroom aides brought it to her attention:

Officials at Mary Bryan Elementary School in Indianapolis contacted Young in March after classroom aides reported that Barocas mistreated the boy, who was 7 at the time, and another child.

The teacher is no longer employed at the school.

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