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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.’

White House Remains Steadfast In Support Of Disability Council Nominee

30 Mar

Disability Scoop has a new article about the nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman’s appointment has been on hold in the Senate, as noted in a New York Times article and on this blog (and others).

“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.

The appointment has the support of multiple disability advocacy groups. Again, from Disability Scoop:

Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.

Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

Social Security to run a deficit this year

27 Mar

The U.S. social security system is predicted to run a deficit this year. The government will pay out more money in benefits than they will take in taxes.

Social Security has two main functions: a retirement system for the elderly and a support system for the disabled. Throughout my adult life two things have been ongoing. First, social security has been taking in extra money. Second, people have been predicting a time when the number of “baby boomers” retiring would put the system into a deficit sometime in the future. The problem arises that the extra money taken in hasn’t really been saved. It has been “borrowed” by the rest of the government.

So, again with the two things theme: for parents of disabled children, we have two things to look forward to. First, a retirement when our social security benefits will likely be dramatically reduced. Second, a retirement where we get to watch the social security support for our children be dramatically reduced.

The Atlantic Online has a story Social Security is Not in Crisis, and We Don’t Need to ‘Fix’ It. The crisis is years away, we don’t need to do anything now:

In any case, there is really no reason to do anything about Social Security this year, for at least three reasons. First, this deficit isn’t even projected to last five years. Second, Social Security is an entitlement, but it’s also a ‘stimulus.’ It is money paid to retired folks who are likely to spend because the old have a lower savings rate and many of their savings have been gutted by the downturn. Third, fixing Social Security will always be tough politics, but delaying, cutting or reforming benefits the same year you’ve announced half a trillion in Medicare cuts is downright crazy.

We are not in a crisis yet, you see. That’s because the current deficit is due to the bad economy. No, the real red ink won’t start to flow until 2016, according to Atlantic Online writer Derek Thompson.

Some of us are looking a bit farther down the road than 2016. Try 2080, for example. Somehow I’d like to think that my disabled kid will have support well after I am gone.

The Autism Mom’s Survival Guide – A Susan Senator Interview

25 Mar

Blogger and autism mom Shannon Des Roches Rosa has an interview up with author and Autism-Hub blogger, Susan Senator.

Did you know that autism parents can choose an identity other than Avenging Warrior or Martyr? That it is reasonable to aim for happy lives for us and our children, despite our kids’ challenges? If this is news to you, then you need to read Susan Senator’s forthcoming The Autism Mom’s Survival Guide, A.S.A.P.

Des Roches Rosa shares a little bit with readers about her own autism mom experience reading Susan’s first book, Making Peace With Autism, and then explores the makings of the new book, The Autism Mom’s Survival Book.

On the question of how to decide which, of a variety topics, to include in her new book, Susan answers:

I looked through my own blog and at many other autism blogs to figure out what was on people’s minds. What were the basic parts of adult life and how were autism parents dealing with those parts? Did they feel successful?  If so, what could they pinpoint that had helped them? What became clear to me was that autism moms and dads did, in fact, find joy and satisfaction in their lives but that they had learned a new way to see their lives, to see success.

From the interview, it’s apparent that the book will touch on many topics in family life, and likely include perspective from dads. I’ll be interested to read more about “parents taking time for themselves”. It seems so important, yet so hard to really put into practice a lot of the time. Des Roches Rosa also points out her own interest in Susan’s honest discussion of residential placements, but there’s a lot more to be learned about Susan and her forthcoming book in the interview.

Please don’t take my short note as coverage of the topic, go read the interview and enjoy another round of apt blogging from Squidalicious.

Interview: Susan Senator and The Autism Mom’s Survival Guide

Clinical trial on Clinical and Immunological Investigations of Subtypes of Autism

24 Mar

The National Institutes of Health (NIH) have recently updated their webpage of featured clinical trials for autism. Many of the clinical trial recently discussed here at LeftBrainRightBrain are on that list. One that is on the featured list that I caught my eye is Clinical and Immunological Investigations of Subtypes of Autism. It is an old trial (started in 2006), but I thought it worth bringing up again.

The description is quoted below:

The purpose of this study is to learn more about autism and its subtypes. Autism is a developmental disorder in which children have problems with communication and social skills and display restricted interests and repetitive behaviors.

This study has several goals. One aim is to look at types of autism that are known, such as the regressive subtype, (where skills are lost). We will explore whether there is a unique change in immune functioning related to this subtype. Another aim is to serve as one of the sites that will pilot a larger natural history study, entitled Autism Phenome Project. The goal is to further understand autism by identifying other subtypes.

We will look at several types of medical issues that may be related to autism, including immunologic problems. Children will be followed over the course of several years. We aim to capture medical problems that may be related to autism as they develop, and study outcomes in areas such as behavior and language, in order to explore known and new subtypes of autism.

Normally developing children (aged 1) with autism (age 1, and developmental delays other than autism (age 1), may be eligible for this study.

Depending on each child’s study group and age, participants may undergo the following tests and procedures:

Baseline Visit

* Medical and developmental history, physical examination, psychological, cognitive and medical tests to assess symptoms of autism or other developmental disorders, photographs of the child’s face, collection of hair, urine and baby teeth samples. If available, hair samples from the baby’s first haircut and from the biological mother’s hair are also collected.
* Overnight electroencephalogram (EEG): A special cap with electrodes is placed on the child’s head to measure brain waves (brain electrical activity) while the child sleeps in the hospital overnight. Healthy volunteers do not undergo this procedure.
* Magnetic resonance imaging (MRI) scan: The child stays in the scanner, lying still for 10 to 15 minutes at a time. Since it may be difficult for the child to lie still, the test may be scheduled for a time when the child is likely to be sleepy, or the child may be sedated.
* Lumbar puncture (for children in the autism). This test and the MRI may be done under sedation.

Follow-Up Visits

Follow-up visits are scheduled at different intervals, depending on study group, age and aspect of the study the child is enrolled in. The visits include a short interview session with the child’s caregiver and assessment of the child’s development and behavior. Some of the assessment measures used during the baseline examination are repeated, including symptoms ratings, behavioral tests and a blood test. For some children, the final visit will include repeats of the medical procedures.

The section that jumps out to my eye: We will explore whether there is a unique change in immune functioning related to this subtype. Another aim is to serve as one of the sites that will pilot a larger natural history study, entitled Autism Phenome Project. The goal is to further understand autism by identifying other subtypes.

Yes, the NIH is looking at whether regression and immune functioning might be linked. As noted above, this study has been ongoing for some time: the trial was first listed in 2006. But, hey, I figure if I forgot about this one and found it interesting, others might be interested in this as well.

Senate Committee approves nominations for National Council on Disability

17 Mar

I received this from Meg Evans of the Autistic Self Advocacy Network (ASAN) on the 12th. Sorry for the delay in posting it. Ari Ne’eman (of ASAN) has been nominated by President Obama to serve on the National Council on Disability. This nomination was approved by a Senate committee and will now go on to the full senate for a final vote.

Nominees for Disability Council, Other Federal Boards Approved by Committee

The following seven nominations for members of the National Council on Disability were approved by committee and will go on to the full senate for vote:

o) Gary Blumenthal, the executive director for the Associated of Developmental Disabilities Providers. Blumenthal previously served as director of the President’s Committee on Mental Retardation under President Clinton.

o) Chester Alonzo Finn, a special assistant with the New York State Office of Mental Retardation and Developmental Disabilities. Finn is blind and developmentally disabled and is president of the national board of Self-Advocates Becoming Empowered, according to the White House.

o) Sara A. Gesler, a state representative in the Oregon State House of Representatives and the youngest woman in the Oregon State Legislature. She founded the non-profit FG Syndrome Family Alliance, which serves families dealing with the rare developmental disability FG Syndrome.

o) Ari Ne’eman, the founding president of the Autistic Self-Advocacy Network. He also serves as vice chairman of the New Jersey Adults with Autism Task Force.

o) Dongwoo Joseph Pak, vice president and loan officer of the Farmers & Merchants Bank and board member of Acacia Adult Day Health Care Services. He has also serviced on the Special Needs Advisory Board for the Orange County Transit Authority and on the California State Rehabilitation Council.

o) Carol Jean Reynolds, the executive director of the Disability Center for Independent Living. She is also a member of the governing board of the National Council on Independent Living. She has faced several mental health and substance abuse issues and has been in recovery for 26 years, according to the White House.

o) Fernando Torres-Gill, the associate dean for academic affairs at the UCLA School of Public Affairs. He was the first assistant secretary for aging in the Department of Health and Human Services, and is a polio survivor, according to the White House.

Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

5 Mar

There is a bill in congress to ban seclusion and restraints in schools. It has been passed by the House (as bill 4247)and will go on to the Senate and, hopefully, the President. Below is a press release from the Autistic Self Advocacy Network (ASAN).

    Disability Coalition applauds passage of Preventing Harmful Restraint and Seclusion Legislation

Legislation that protects students with disabilities a key item on Coalition Agenda

(Washington D.C.) — The Justice for All Action Network (JFAAN), a coalition of disability-led organizations, applauds the U.S. House of Representatives for passage of HR 4247, the Preventing Harmful Restraint and Seclusion in Schools Act. The legislation, which equips students with disabilities with federal protection from abuse in the schools, was approved in the House March 3 by a vote of 262-153.

The legislation approved today is the first of its kind. It goes far beyond previous efforts to protect students with disabilities, said Paula Durbin-Westby of the Autistic Self Advocacy Network, a member of the JFAAN Steering Committee.

The Preventing Harmful Restraint and Seclusion in Schools Act will put significant restrictions on schools restraining children, confining them in seclusion rooms, and using aversive interventions to harm them. A Government Accountability Office study found hundreds of cases over the last two decades of alleged abuse and death from restraint and seclusion in public and private schools. The majority of students in the study were students with disabilities.

When passed by the Senate and signed by President Obama, this legislation will be the first step in putting an end to the long history of students with disabilities being subjected to inappropriate and abusive restraint and seclusion, said Durbin-Westby. We urge the Senate to vote on the legislation soon in order to equip students with critically needed protections from abusive restraint and seclusion.”

Currently, 23 states have laws with weak or no protections. HR 4247 will create a minimum level of protection for schoolchildren that all states must meet or exceed. Unlike previous attempts to protect students with disabilities, this legislation applies to all students and bans the worst practices, including mechanical restraint, chemical restraint and physical restraint.

Legislation that protects people with disabilities from unwarranted restraints and seclusions is a key component of a campaign agenda developed by JFAAN. The JFAAN Joint Campaign Agenda addresses major policy issues of people with intellectual, physical, psychiatric, developmental and sensory disabilities.

Created in an effort to build a strong and unified cross-disability movement, the Justice for All Action Network is organized into a steering committee of 13 national consumer-led disability organizations and more than 20 organizational and individual members. The group was formed in the wake of the 2008 Presidential Election.

About the Justice for All Action Network

Mission: The Justice for All Action Network is a national cross-disability coalition, led by disability groups run by persons with disabilities with support from allies, committed to building a strong and unified cross-disability movement so that individuals with disabilities have the power to shape national policies, politics, media, and culture.

Working as a coalition, JFAAN is committed to accomplishing each item on the coalition’s agenda by July 2010, the 20th anniversary of the Americans with Disabilities Act.

Steering Committee Members: ADAPT, American Association of People with Disabilities, American Council of the Blind, Autistic Self Advocacy Network, Hearing Loss Association of America, Little People of America, National Association of the Deaf, National Coalition of Mental Health Consumer Survivor Organizations, National Council on Independent Living, National Federation of the Blind, Not Dead Yet, Self Advocates Becoming Empowered, United Spinal Association.

For more information, contact Paula Durbin-Westby, Autistic Self Advocacy Network, (540)-223-6145, pdurbinwestby@autisticadvocacy.org; Andrew Imparato, American Association of People with Disabilities, (202) 521-4301, aimparato@aapd.com.

My congressperson voted yes.

I note that Dan Burton, congressman from Illinois and vaccine critic, voted against the bill. Mr. Burton has been called “one of the foremost champions of autistic causes in Congress.” I find this nay vote very troubling. On the other hand, Congresswoman Maloney, also a vaccine critic, voted yea. The vote was very much a democrat vs. republican divide, which may explain the two congresspeople above.

U.S. Department of Justice opens investigation on Judge Rotenberg Center

23 Feb

The Judge Rotenberg Center (JRC) is probably the best known and most controversial special education school in the world. The JRC describes itself as:

The JUDGE ROTENBERG CENTER (JRC) is a special needs school in Canton, Massachusetts serving ages 3-adult. For 38 years JRC has provided very effective education and treatment to both emotionally disturbed students with conduct, behavior, emotional, and/or psychiatric problems and developmentally delayed students with autistic-like behaviors.

If you haven’t heard of them, you are probably wondering how they could be controversial. From the JRC website:

If positive and educational procedures alone are not effective, then after trying them for an average of 11 months, we approach the parents to suggest supplementing the rewards with a corrective (aversive) consequence for the problem behavior. If the parent approves, and if we obtain an individualized authorization from a Massachusetts Probate Court, we apply an aversive in the form of a 2-second shock to the surface of the skin, usually on the arm or leg, as a consequence each time the problem behavior occurs.

Yes. The JRC uses aversives. Not just any aversives, they use electric shocks. When I first read that it sounded like they get parental and Court approval for each shock. Not so. Children are fitted with backpacks or “fanny packs” which have control units. Children are monitored 24/7. If a staff member believes an aversive is called for, the JRC staff can remotely signal the control unit to apply a shock to the child. Children can be shocked 30 times–or more–in a single day.

A coalition of disability organizations have filed a complaint against the Judge Rotenberg Center with the United States Department of Justice.

The Department of Justice responded with a letter stating they have opened a “routine investigation”.

A letter from Nancy Weiss informing people of the investigation is below. Ms. Weiss is from the National Leadership Consortium on Developmental Disabilities and the University of Delaware.The Complaint letter, signed by 31 disability organizations, is quoted below that.

Disability advocates have cause for celebration today. In response to the September 30th letter signed by 31 disability organizations, the U.S. Department of Justice, Civil Rights Division has announced that they have initiated an official investigation of the Judge Rotenberg Center (JRC); see the Department of Justice letter attached.

I’ve been waiting to receive the official notice before announcing this exciting news for the 31 disability organizations that signed the September 30th letter and for all of the disability advocates who have been fighting for over twenty-five years to put an end to the use of electric shock, other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation as methods of behavior control. Our September 30th letter was sent to seven government agencies and three human rights organizations (see list of letter’s recipients below and the letter and addendum, attached).

The initial response of the Department of Justice was that they didn’t believe that they could take action because they didn’t believe they had jurisdiction over privately operated facilities (like the Judge Rotenberg Center) since CRIPA, the Civil Rights of Institutionalized Persons Act (http://www.justice.gov/crt/split/cripa.php) applies only to state-run (not state-funded or -licensed) institutions. I suggested to them that they consider jurisdiction under the ADA on the basis that people with disabilities are being treated in ways that are neither legal nor would be tolerated if applied to people who do not have disabilities (see my email to them below). Their letter states that they are pursuing this investigation under Title III of the ADA which prohibits discrimination against people with disabilities.

None of the other government or human rights organizations that were recipients of the letter have so far been able or willing to take action – Human Rights Watch and Physicians for Human Rights had other priorities; Amnesty International is seeking guidance through their international headquarters in London but, as has been our experience in the past, they have shown little interest. The U.S. Department of Education referred us to their efforts with regard to seclusion and restraint, which, while related and important issues, do not address the concerns about electric shock and other aversive procedures described in the letter. The Office on Disability suggested that advocates should “think about finding a way to connect this issue to regulatory compliance,” though clearly we have pursued this approach with limited success for over twenty-five years.

While it is not possible to say how long the Department of Justice investigation will take (they just chuckled when I asked this) or what the impact of this investigation will be, we know that Department of Justice investigations are customarily thorough and rigorous. I will certainly keep the 31 signing organizations and others who have expressed interest in this effort informed along the way. If you are not sure you are on that list and would like to be kept posted, just send a reply email.

If you have first hand knowledge of JRC/BRI related issues and would like to be interviewed by the Department of Justice investigators, please let me know and I will pass this on to them.

To each of you who has maintained energy for this issue over a long, frustrating and mostly unproductive battle, I am most appreciative of your continued commitment. When you think about how long these abuses have been known and generally ignored, I know you share my sense that we must have fallen down the rabbit hole. We can only keep our fingers crossed that this is the first step in righting a long history of wrongs.

With renewed hope,

Nancy

This is the complaint letter.

September 30, 2009

We are writing to ask the above Government agencies and human rights organizations to take action to put an end to the use of electric shock, other painful and aversive procedures, seclusion, unnecessary restraint, and food deprivation – all inhumane and unnecessary methods of behavior modification used in some schools and residential facilities for children and adults with disabilities in the United States. This letter is signed by 31 disability organizations concerned with the humane treatment of people with disabilities.

The attached information focuses on the practices of the Judge Rotenberg Center in Canton, Massachusetts. While there are examples of the use of prolonged seclusion and unnecessary restraint in schools and residential facilities across the country, studies prepared by government agencies and investigative reports that have appeared in the media suggest that the Judge Rotenberg Center uses these procedures as well as painful electric shock and food deprivation. According to public sources, residents of the Judge Rotenberg Center receive painful electric shocks for behaviors as innocuous as stopping work for more than ten seconds, getting out of their seats, interrupting others, or whispering1. In the view of the undersigned, the use of painful and dehumanizing behavioral techniques violates all principles of human rights. We are sending this letter to a number of government and human rights organizations. We ask that you show leadership in protecting the rights of all people in the United States by acting to put an end to these inhumane practices wherever they occur.

The type of practices against which we ask you to take action have been documented in numerous government reports and other public documents. One of the best documentations of these practices is the June, 2006 New York State Education Department report2 that noted the following concerns about the Judge Rotenberg Center (JRC):

“Students wear the GED device [the device that delivers the electric shock] for the majority of their sleeping and waking hours, and some students are required to wear it during shower/bath time. The GED receivers range in size and are placed in either “fanny” packs or knapsacks. Staff carry the GED transmitters in a plastic box. Students may have multiple GED devices (electrodes) on their bodies. For example, one NYS student’s behavior program states, “C will wear two GED devices. C will wear 3 spread, GED electrodes at all times and take a GED shower for her full self care.” (p.7)

“A combination of mechanical restraint and GED skin shock is also used to administer a consequence to students that attempt to remove the GED from their bodies. In instances where this combined aversive approach is used, the student, over a period of time specified on his or her behavior program, is mechanically restrained on a platform and GED shocks are applied at varying intervals. … An example of this is found on one NYS student’s behavior program; a consequence for pulling a fire alarm is to receive 5 GED [shocks], over a 10-minute period, while being restrained on a four-point board.” (p. 9)

Another example of these inhumane practices was documented by NPR Health Reporter Joseph Shapiro, in his book No Pity. His observations of The Judge Rotenberg Center include the following:

” … one young man got tired of picking out matching shapes on a computer screen. But his teacher demanded that he continue and pinched him on the palm for disobeying. The young man …made a guttural noise of protest and tried to get up. In a second, two staffers had thrown him face down on the floor. This only made him more agitated. Then came a squirt in the face with ammonia water. The man spent a minute on the floor, trying to move and protest, but was restrained by one staffer’s knee in his back and another’s grip on his arm.”3

The JRC website describes these practices as “intensive treatment procedures”4 but almost every national disability organization agrees that the use of painful procedures to change a person’s behavior is unnecessary, inhumane, and should be banned.5

With this letter, we ask The House Committee on Education and Labor to take legislative action to end the use of these practices. In our view the practices described in the New York State Education Department report on JRC meet the definition of torture in the United Nations’ Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment that is, “any act by which severe pain or suffering, whether physical or mental; is intentionally inflicted on a person; for such purposes as:

* obtaining from him/her or a third person information or a confession;
* punishing him/her for an act s/he or a third person has committed or is suspected of having committed;
* intimidating or coercing him/her or a third person;
* or for any reason based on discrimination of any kind;

when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity.”6

We the undersigned urge you to review the attached information which documents extensive instances of inhumane practices and take legislative and regulatory action to halt the continued abuse of children, adolescents and adults with disabilities. Through numerous pleas and campaigns, advocates have seen little action from federal, state or local regulatory agencies or the criminal justice system. These entities have been aware of the documented abuses for over thirty years. Even though there is broad professional agreement that a wide range of positive interventions are available which are at least as effective in managing dangerous behaviors, and which do not inflict pain on or dehumanize individuals with disabilities, no regulatory agency has been able or willing to act to eliminate these practices.

As a group of advocates concerned with the support of persons with disabilities, we call on these Government agencies and human rights organizations to work with us to expose and condemn these behavioral techniques, take the legislative and other necessary steps to protect the rights of people with disabilities, and bring an end to these practices.

For additional information, to discuss proposed action, or to contact the organizations below, please contact Nancy Weiss by phone: 410-323-6646 or e-mail: nweiss@udel.edu

Signed:

Alaska Youth and Family Network and YouthMOVE

Anchorage, AL

American Association on Intellectual and Developmental Disabilities

Washington, DC

Association of University Centers on Disabilities

Silver Spring, MD

The Arc of the U.S.

Silver Spring, MD

Autism National Committee (AutCom)

Forest Knolls, CA

The Autistic Self Advocacy Network

Washington, DC

Center on Human Policy, Law, and Disability Studies, Syracuse University

Syracuse, NY

The Coalition for the Legal Rights of People with Disabilities

Boston, MA

Cobb and Douglas Counties Community Service Boards

Smyrna, GA

Connecticut Council on Developmental Disabilities

Hartford, CT

Disability Rights Education and Defense Fund

Berkley, CA

Easter Seals

Chicago, IL

Exceptional Parent Magazine

Johnstown, PA

Hope House Foundation

Norfolk, VA

The Learning Community for Person Centered Practices

Annapolis, MD

The Maine Independent Media Center

Waterville, ME

Maryland Coalition for Inclusive Education

Hanover, MD

National Association of County Behavioral Health and Developmental Disability Directors

Washington, DC

National Association of Councils on Developmental Disabilities

Washington, DC

National Association for the Dually Diagnosed (NADD)

Kingston, NY

National Disability Rights Network

Washington, DC

The National Leadership Consortium on Developmental Disabilities, University of Delaware

Newark, DE

Respect ABILITY Law Center

Royal Oak, Michigan

RHA Howell, Inc.

Raleigh, NC

Self Advocates Becoming Empowered

Kansas City, MO

TASH

Washington, DC

United Cerebral Palsy

Washington, DC

Values Into Action

Media, PA

University of Medicine and Dentistry of New Jersey, School of Nursing

Newark, NJ

University of San Diego Autism Institute

San Diego, CA

The Voices and Choices of Autism

Lakewood, CO

Here is an addendum letter.

Addendum to Sept ’09 Letter from Disability Advocates – End Inhumane Practices.doc

If you can stand reading more about JRC, Mother Jones ran a story on JRC in 2007, School of Shock.

The disability advocates say it much better than I ever could. Picking but one sentence: We cannot condone treating persons with disabilities in a manner that would not be tolerated if applied to other segments of the population.

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