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Preliminary program for IMFAR

20 Apr

IMFAR, the International Meeting For Autism Research will be held next month (May 12-14). The full scientific program is not up yet (with all the details about who is talking and when), but the preliminary program is online. You can see what sessions are focusing on and see who the keynote speakers are.

Here are some sessions which caught my eye:

Characterizing Cognition in Nonverbal Individuals with Autism: Innocation Assessment and Treatment (an invited symposium–i.e. the conference felt this was an important topic and specifically invited speakers to present their research)

Sex Differences and Females with Autism Spectrum Disorders

Interventions: Behavioral CAM and Psychopharmacology Treatments

In addition, a number of sessions have full or partial focus on adults:

Adults with Autism Spectrum Disorders: Challenges for Epidemiological and Outcome Research (another invited symposium)

Epidemiology: ASD Prevalence, Trends, and Adults with ASD

a poster session on Adults with Autism

Structural and Functional Brain Imaging in Older Children, Adolescents and Adults with ASD

If you missed it, let me draw your attention: there is a session that includes CAM–Complementary and Alternative Medicine

Joint Letter to CDC on Wandering

6 Apr

Below is a letter signed by a number of disability groups, including the Autistic Self Advocacy Network (ASAN) on the issue of the proposed ICD-9 code for wandering. These organizations oppose the addition of the code, for the reasons given below.

This letter was sent to the CDC’s National Center for Health Statistics on Friday, April 1st.

Dear Ms. Pickett:

We are writing as a coalition of organizations representing a wide variety of different constituents in the disabilities field. The constituencies that we collectively represent number in the hundreds of thousands from every stakeholder group in the disability field. We include organizations run by people with disabilities as well as those run by parents, other family members, professionals, providers and many others. Our coalition also includes groups representing a wide array of different kinds of disability categories, including developmental disabilities, mental health conditions, physical disabilities and sensory disabilities. We are writing to express our profound concern about the proposed ICD-9-CM code for wandering discussed at the last meeting of the ICD Coordination and Maintenance Committee on March 9th-10th.

While wandering behavior leading to injury and death represents an important and legitimate safety issue for the disability community, we are concerned that the proposal put forward by CDC’s National Center for Birth Defects and Developmental Disabilities (NCBDDD) is not rooted in high quality research and has significant potential unintended consequences for people with disabilities and family members. We encourage the National Center for Health Statistics to reject an ICD-9-CM coding for wandering behavior as ill-advised and inappropriate.

First, a code for wandering behavior could limit the self-determination rights of adults with disabilities. The wandering coding has no clear operational definition and thus no limits to its application. The proposal makes no distinction between wandering behavior that would qualify for the coding and a rational and willful effort by an individual with a disability to remove oneself from a dangerous or uncomfortable situation. For individuals with significant communication challenges, attempting to leave a situation may be one of the only ways of communicating abuse, a sensorily overwhelming situation or simple boredom. We are concerned that if this coding enters the ICD-9-CM such attempts at communication will be disregarded as medical symptoms.

Second, a code for wandering behavior could lead to serious unintended consequences in professional practice for schools and residential service-provision settings for adults with disabilities. Restraint and seclusion in schools and in residential service-provision settings is already a persistent problem. The application of this coding may result in increased restraint and seclusion as a way of preventing wandering behavior, supplanting required active support, person-centered planning and appropriate supervision. In addition, we are concerned that this coding may enable other forms of overly restrictive interventions and settings. For example, individuals with disabilities who are labeled with a wandering coding may be less likely to be included in the general education classroom, more likely to be placed in large group homes or institutions and more likely to experience chemical restraint. Each of these issues already represents a critical problem for people with intellectual and developmental disabilities that this coding may exacerbate. For example, while only 18% of adults on the autism spectrum receiving developmental disability services have a diagnosis of mental illness, 41% of such individuals are receiving psychotropic medications, suggesting a high incidence of chemical restraint.

Third, the proposed ICD-9-CM code for wandering behavior lacks research support and is not based on evidence or a controlled examination of the issues involved. No research exists to look at wandering as a medical rather than behavioral issue. The research which CDC relies on to make the case for this coding is weak. For example, one of the statistics that CDC cites (that 92% of families of children on the autism spectrum report at least one or more incidents of wandering) comes not from a high quality research study, but instead from an online poll on the website of an advocacy organization. This is not in line with the high standards for research and evidence that the CDC bases its other decision-making on.

While we respect the good intentions behind the creation of this coding, we firmly believe that there are other ways of accomplishing the positive objectives of this coding without placing people with disabilities and our families at risk of the same unintended consequences. Other methods of data collection around wandering can and are being pursued by both public and private funders. In addition, a wide variety of human services and educational approaches hold significant promise in addressing the issue of dangerous wandering behavior outside of a medical context. As a result, we strongly urge you to consider and reject the proposed ICD-9-CM coding for wandering behavior.

Regards,

Access Living
ADAPT
American Association of People with Disabilities
American Association on Intellectual and Developmental Disabilities
Autistic Self Advocacy Network (ASAN)
The Arc of the United States
Brooklyn Center for the Independence of the Disabled (BCID)
Center for Self-Determination
Coalition for Community Integration
Collaboration for the Promotion of Self-Determination
Council of Parent Attorneys and Advocates (COPAA)
Disability Rights Education and Defense Fund (DREDF)
Disabled in Action of Greater Syracuse
Disabled in Action of Metropolitan New York
Disabled Queers in Action
Disability Network of Michigan
Disabilities Network of New York City
Hearing Loss Association of America (HLAA)
Independent Living Center of the Hudson Valley
Independent Living Council of Wisconsin
Independent Living Coalition of Wisconsin
Little People of America (LPA)
Kansas ADAPT
Montana ADAPT
National Association of the Deaf (NAD)
National Association of State Directors of Developmental Disability Services (NASDDDS)
National Association of the Physically Handicapped
National Council on Independent Living (NCIL)
National Organization of Nurses with Disabilities
New York Association of Psychiatric Rehabilitation Services
Options for Independence, Inc.
Pineda Foundation for Youth
Self Advocates Becoming Empowered (SABE)
Silicon Valley Independent Living Center
Statewide Parent Advocacy Network of New Jersey (SPAN)
SKIL Resource Center of Kansas
TASH
Topeka Independent Living Center
United Spinal Association
Wisconsin Board for People with Developmental Disabilities

Autism and Wandering

6 Apr

One issue which has been getting much discussion lately is that of wandering. Elopement. Autistics (and others) who get up and leave the home, classroom, or other place and wander. Anecdotally, it is more common amongst autistics. It is one of the first behaviors I was told about after hearing a diagnosis for my kid. One the one hand it is dangerous. A person can get lost or get into traffic or another unsafe situation. On the other hand, wandering can be an attempt to escape an inappropriate or harmful setting. While I hate presenting topics as unresolved “on the one hand/on the other hand” situations, there is a time critical discussion going on: should a new diagnostic code be implemented (ICD-9 code) for wandering. So I am presenting two pieces today: one by ASAN and other groups presenting their arguments against the ICD-9 code, and one by the Autism Science Foundation and others calling for participation in an IAN survey and support for the ICD-9 code.

My view so far is this:

As a means to collect data on wandering, I doubt this will be of much use, especially in the short term. Unless the code is a means to some end (some supports to address the cause of wandering), I don’t think the code will be used by physicians. If autism itself gives us any experience, we will see a multi-year increase in wandering. A wandering “epidemic” if you will. However, and more importantly to me, without this code, will there be funding from insurance and other sources to provide those supports?

There is much discussion of how prevalent wandering is amongst autistics. I don’t know if that is really the point. If wandering “only” occurs in, say, 10% of the population, does that mean there is no need for the code and for, hopefully, improved supports? No. If wandering is a major problem, one which puts some people at great risk of harm or death, that is where the focus should lie.

As I said, I am still forming my views on this and I welcome a good discussion.

Loving Lampposts video clips

1 Apr

Loving Lampposts is a new documentary film by filmaker and autism parent Todd Drezner. Here’s a blurb from their website to give you an idea about the film:

What would you call a four year old who caresses all the lampposts in the park? Quirky? Unusual? Or sick?

Such labels are at the center of the debate about autism: is it a disease or a different way of being—or both? In Loving Lampposts, we witness this debate and meet the parents, doctors, therapists, and autistic people who are redefining autism at a moment when it’s better known than ever before. Motivated by his son’s diagnosis, filmmaker Todd Drezner explores the changing world of autism and learns the truth of the saying, “if you’ve met one autistic person, you’ve met one autistic person.”

I put it on my Netflix list (you can too: link) right after reading the review on The Thinking Person’s Guide to Autism and the interview with the director on Neurotribes. Netflix doesn’t carry it yet, but with luck I may have a copy soon. One can purchase a copy as well.

If you are interested in what Todd Drezner has to say, he has the first in a series of articles up on the Huffington Post: Learning to Embrace Autism.

For more on what the film is about, here are a series of video clips the produces have made available:

Opening sequence with director Todd Drezner introducing autism spectrum disorder through his son, Sam

Loving Lampposts Clip#1 from Cinema Libre Studio on Vimeo.

Understanding autism through “Rain Man” and as described by author of “Unstrange Minds” Roy Richard Grinker

Loving Lampposts Clip #2 from Cinema Libre Studio on Vimeo.

Sharisa Kochmeister, autistic adult with a genius level IQ, and her father, Jay – “I don’t have a disease. I have a disability that causes unease…”

Loving Lampposts Clip #3 from Cinema Libre Studio on Vimeo.

Mothers Kristina Chew and Nadine Antonelli initially hoping to find a “fix” for their autistic children

Loving Lampposts Clip #4 from Cinema Libre Studio on Vimeo.

Simon Baron-Cohen, Director of the Autism Research Centre, explains definitions of autism and Asperger’s

Loving Lampposts Clip #5 from Cinema Libre Studio on Vimeo.

About the anti-childhood vaccination movement featuring actress and mother, Jenny McCarthy

Loving Lampposts Clip #6 from Cinema Libre Studio on Vimeo.

Blogger, mother, and activist Kristina Chew shares the joy of watching her son ride a bike

Loving Lampposts Clip #7 from Cinema Libre Studio on Vimeo.

Autistic adult, Dora Raymaker, using a computer to talk, explains how autism affects her ability to communicate

Loving Lampposts Clip #8 from Cinema Libre Studio on Vimeo.

Dr. Paul Offit discusses his involvement in the vaccine industry and the MMR vaccination

Loving Lampposts Clip #9 from Cinema Libre Studio on Vimeo.

Loving Lampposts: synopsis and director’s statement

31 Mar

Loving Lampposts, the new documentary by filmaker Todd Drezner, takes a look at autism and parts of the autism communities in America today. After my initial piece on the documentary, I read the press kit again and thought that the synopsis and director’s statements really should be up here on LeftBrainRightBrain.

Synopsis:

As autism has exploded into the public consciousness over the last 20 years, two opposing questions have been asked about the condition: is it a devastating sickness to be cured? Or is it a variation of the human brain — just a different way to be human?

After his son’s diagnosis, filmmaker Todd Drezner visits the front lines of the autism wars. We meet the “recovery movement,” which views autism as a tragic epidemic brought on by environmental toxins. Operating outside the boundaries of mainstream medicine, these parents, doctors, and therapists search for unconventional treatments that can “reverse” autism and restore their children to normal lives.

We meet the ‘neurodiversity’ movement, which argues that autism should be accepted and autistic people supported. This group argues that the focus on treatments and cures causes the wider society to view autistic people as damaged and sick. Acceptance is the better way, but how do you practice acceptance of autism in a world where the very word can terrify parents? And we meet a too often ignored group: autistic adults. It’s these adults who show just how tricky it is to judge an autistic person’s life. Is an autistic woman who directs academic research about autism recovered? What if the same woman has trouble speaking and uses text-to-speech software to communicate? Is an autistic man who lives in his own apartment recovered? What if his mother must hire people to do his laundry and take him out in the evenings?

This wide angle view of autism makes clear what’s at stake in the autism wars. Will we live in a world dominated by autism conferences where vendors hawk vitamins and hyperbaric chambers to parents desperate for a cure? Or will we provide the support that autistic adults need to lead the best lives they can? And can these two worlds possibly co-exist?

Director’s Statement:

One afternoon in August of 2007, I was pondering possible documentary subjects as I brought my son Sam home. We had just finished walking the circuit of lampposts that Sam liked to visit in Prospect Park.

At the time, Sam’s diagnosis of autism was a few months old, and he was about to start at a special needs school in Brooklyn. His diagnosis still felt strange to my wife and me, especially because we didn’t seem to be reacting like many autism families that are depicted in the media. We didn’t feel like Sam had been “stolen” from us. He wasn’t sick. He hadn’t lost any skills. We didn’t think his life was doomed to be a tragedy. Certainly, we were concerned about how best to support Sam, but he was very much as he had always been. It was just that his differences from typical children now had a name attached to them.

My wife had been exploring the autism community on the Internet and had come across a group of autistic adults and parents of autistic children who supported “neurodiversity”–the idea that autism is both a disability and a difference, a natural variation of the human brain. This idea felt right to us, and yet I wondered: Sam did not have many of the most difficult behaviors associated with autism. Would we still believe in neurodiversity if Sam was banging his head on the wall or rocking endlessly in a corner? Was a parent’s view of autism simply a function of how difficult his child was? On that August afternoon, I realized that such questions would be a perfect subject for a documentary, and Loving Lampposts was born.

In the more than two years since, I’ve immersed myself in the world of autism at the same time that the world at large has paid more attention to autism than ever before. Never has a community been less ready for its cultural moment than the autism community. Indeed, there is disagreement about whether autism is a disease, about how to treat it, about whether it is an epidemic, about whether it can be cured, and even about what it is.

These disagreements are on full display in Loving Lampposts. And yet, at the end of the process, I can’t help but be optimistic. I’ve met parents of severely autistic children whose patience, acceptance, and support of their kids are truly inspiring. I’ve met autistic adults–whose voices are too often ignored in the autism debate–who lead rich, full lives even as they struggle with the challenges of their disability. And I’ve seen Sam progress in ways I couldn’t have imagined two years ago.

He’s still profoundly different from other children. But in making the film, I’ve seen that there may be a place in the world for Sam and those like him. I hope that audiences that view Loving Lampposts will see that, too.

Loving Lampposts can be purchased here.

Social-sexual education in adolescents with behavioral neurogenetic syndromes

30 Mar

A recent paper abstract I read brought up a very important topic which I don’t see discussed much: sex education for adolescents with developmental disabilities. I don’t know how good the paper itself is, but I agree with the conclusion: “Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. ” On one level I don’t want to think about sex and my kid. But I also have run into a belief that sex isn’t a topic to consider for people with developmental disability and autistics in particular. Perhaps I am naive, but I don’t see this as a good approach. I think sexuality is too important a topic to leave unaddressed. The discussion is going on. Just rarely in the parent-oriented online world.

Isr J Psychiatry Relat Sci. 2010;47(2):118-24.
Social-sexual education in adolescents with behavioral neurogenetic syndromes.

Plaks M, Argaman R, Stawski M, Qwiat T, Polak D, Gothelf D.
The Behavioral Neurogenetics Center, Feinberg Department of Child Psychiatry, Schneider Children’s Medical Center of Israel, Petah Tikwa, Israel.

Abstract
BACKGROUND: Adolescents with developmental disabilities have unmet needs in their sexual and social knowledge and skills. We conducted a sexual social group intervention in adolescents with neurogenetic syndromes, mainly with Williams and velocardiofacial syndromes and their parents.
METHOD: Ten adolescents with neurogenetic syndromes and 14 parents participated in a Social Sexual Group Education Program. The program was delivered in 10 biweekly sessions to the adolescents and their parents separately.
RESULTS: The focus of psychoeducation in both groups was the adolescents’ self-identification, acceptance of the developmental disability, independence, establishment of friendship and intimate relationship, sexual knowledge and sexual development, and safety skills. Change in independent activities of adolescents and in their concept of “Friend” was measured.
CONCLUSIONS: Social and sexual education programs are of the utmost importance for adolescents with neurogenetic developmental disabilities. These programs should start already before adolescence and follow the children into young adulthood.

At State-Run Homes, Abuse and Impunity

14 Mar

So reads the title of a very disturbing piece in the New York Times. At State-Run Homes, Abuse and Impunity discusses problems with the group homes in New York.

Nearly 40 years after New York emptied its scandal-ridden warehouses for the developmentally disabled, the far-flung network of small group homes that replaced them operates with scant oversight and few consequences for employees who abuse the vulnerable population.

Not only is there abuse, but perpetrators are often not charged.

A New York Times investigation over the past year has found widespread problems in the more than 2,000 state-run homes. In hundreds of cases reviewed by The Times, employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state.

Sounds like the stories of abuse by Priests in the Catholic Church in a way, doesn’t it? Abuser is uncovered and moved rather than fired or prosecuted.

The Times puts a good share of the blame for protecting the perpretrators on the uniion:

The state initiated termination proceedings in 129 of the cases reviewed but succeeded in just 30 of them, in large part because the workers’ union, the Civil Service Employees Association, aggressively resisted firings in almost every case. A few employees resigned, even though the state sought only suspensions.

The story is fairly long, and very saddening to say the least. While a difficult read, it is an important one.

US proposes $154M in new autism research projects

1 Mar

The Interagency Autism Coordinating Committee (IACC) is charged with creating the “Strategic Plan“. This document lays out research priorities for the US government to pursue in the upcoming years.

The full plan is available ether by html or pdf.

If you’ve watched IACC meetings, you know that a lot of time goes into word smithing. They work out the wording that will go into the document and convey the messages with the best balance of the various viewpoints represented by the committee. Not to belittle that effort, but when the rubber hits the road, what gets into the budget is what matters most to me.

With that in mind, I’ve summarized the new objectives (long-term and short-term) that were added in 2011.

I also went through and quickly summed up the new item budget amounts. Forgive me if I missed anything, but here is what I got. First as a brief summary:

Question 1: When Should I Be Concerned?:
2 new objectives. $9,635,000

Question 2: How Can I Understand What Is Happening?:
no new objectives. $0

Question 3: What Caused This To Happen And Can This Be Prevented?:
6 new objectives. $90,570,000

Question 4: Which Treatments and Interventions will Help?:
3 new objectives. $45,500,000

Question 5: Where Can I Turn for Services?: 3 new objectives.
$3,800,000

Question 6: What Does the Future Hold, Particularly for Adults?:
no new objectives. $0

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?:
3 new objectives. $4,950,000

Total: 17 new objectives. $154,455,000

And as a more detailed summary:

Question 1: When Should I Be Concerned?
Aspirational Goal: Children at Risk for ASD Will Be Identified Through Reliable Methods Before ASD Behavioral Characteristics Fully Manifest.

New Short-Term Objectives:

2011 E. Conduct at least one study to determine the positive predictive value and clinical utility (e.g., prediction of co-occurring conditions, family planning) of chromosomal microarray genetic testing for detecting genetic diagnoses for ASD in a clinical setting by 2012. IACC Recommended Budget: $9,600,000 over 5 years.

2011 F. Convene a workshop to examine the ethical, legal, and social implications of ASD research by 2011. The workshop should define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.IACC Recommended Budget: $35,000 over 1 year.

New Long-Term Objectives: None.

Question 2: How Can I Understand What Is Happening?
Aspirational Goal: Discover How ASD Affects Development, Which Will Lead To Targeted And Personalized Interventions.

New Short-Term Objectives: none.

New Long-Term Objectives: None.

Question 3: What Caused This To Happen And Can This Be Prevented?
Aspirational Goal: Causes Of ASD Will Be Discovered That Inform Prognosis And Treatments And Lead To Prevention/Preemption Of The Challenges And Disabilities Of ASD.

New Short Term Objectives:

2011 F. Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” This link exits the Interagency Autism Coordinating Committee Web site as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

2011 G. Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

2011 H. Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:

* Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and

* Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.

Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

2011 I. Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012. IACC Recommended Budget: $1,000,000 over 2 years.

2011 J. Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

2011 K. Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

New Long Term Objectives: None.

Question 4: Which Treatments and Interventions will Help?
Aspirational Goal: Interventions Will Be Developed That Are Effective For Reducing Both Core And Associated Symptoms, For Building Adaptive Skills, And For Maximizing Quality Of Life And Health For People With ASD.

New Short Term Objectives:

2011 G. Support at least five studies on interventions for nonverbal individuals with ASD by 2012. Such studies may include:

* Projects examining service-provision models that enhance access to augmentative and alternative communication (AAC) supports in both classroom and adult service-provision settings, such as residential service-provision and the impact of such access on quality of life, communication, and behavior;

* Studies of novel treatment approaches that facilitate communication skills in individuals who are nonverbal, including the components of effective AAC approaches for specific subpopulations of people with ASD; and

* Studies assessing access and use of AAC for children and adults with ASD who have limited or partially limited speech and the impact on functional outcomes and quality of life.

IACC Recommended Budget: $3,000,000 over 2 years.

2011 H. Support at least two studies that focus on research on health promotion and prevention of secondary conditions in people with ASD by 2012. Secondary conditions of interest include weight issues and obesity, injury, and co-occurring psychiatric and medical conditions. IACC Recommended Budget: $5,000,000 over 3 years.

New Long Term Objectives:

2011 D. Support at least five community-based studies that assess the effectiveness of interventions and services in broader community settings by 2015. Such studies may include comparative effectiveness research studies that assess the relative effectiveness of:

* Different and/or combined medical, pharmacological, nutritional, behavioral, service-provision, and parent- or caregiver-implemented treatments;

* Scalable early intervention programs for implementation in underserved, low-resource, and low-literacy populations; and

* Studies of widely used community intervention models for which extensive published data are not available.

Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes. IACC Recommended Budget: $37,500,000 over 5 years.

Question 5: Where Can I Turn for Services?
Aspirational Goal: Communities Will Access And Implement Necessary High-Quality, Evidence-Based Services And Supports That Maximize Quality Of Life And Health Across The Lifespan For All People With ASD.

New Short Term Objectives:

2011 D. Support two studies to examine health, safety, and mortality issues for people with ASD by 2012. IACC Recommended Budget: $4,500,000 over 3 years.

New Long Term Objectives:

2011 D. Evaluate at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and personal autonomy by 2015. IACC Recommended Budget: $2,000,000 over 2 years.

2011 E. Support three studies of dental health issues for people with ASD by 2015. This should include:

* One study on the cost-benefit of providing comprehensive dental services, including routine, non-emergency medical and surgical dental services, denture coverage, and sedation dentistry to adults with ASD as compared to emergency and/or no treatment. IACC Recommended Budget: $900,000 over 3 years.

* One study focusing on the provision of accessible, person-centered, equitable, effective, safe, and efficient dental services to people with ASD. IACC Recommended Budget: $900,000 over 3 years.

* One study evaluating pre-service and in-service training program to increase skill levels in oral health professionals to benefit people with ASD and promote interdisciplinary practice. IACC Recommended Budget: $900,000 over 3 years.

Question 6: What Does the Future Hold, Particularly for Adults?
Aspirational Goal: All People With ASD Will Have The Opportunity To Lead Self-Determined Lives In The Community Of Their Choice Through School, Work, Community Participation, Meaningful Relationships, And Access To Necessary And Individualized Services And Supports.

New Short-Term Objectives: none
New Long-Term Objectives: none

Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?
Aspirational Goal: Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research.

New Short- and Long-Term Objectives

2011 N. Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012. IACC Recommended Budget: $1,850,000 over 1 year.

2011 O. Create an information resource for ASD researchers (e.g., PhenX Project This link exits the Interagency Autism Coordinating Committee Web site) to share information to facilitate data sharing and standardization of methods across projects by 2013.

* This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.

* This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.

IACC Recommended Budget: $2,000,000 over 2 years.

2011 P. Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. IACC Recommended Budget: $1,100,000 over 2 years.

US plan for autism research: focus on environmental causation re-emphasized

28 Feb

The Interagency Autism Coordinating Committee has released the 2011 Strategic Plan. This maps out the proposed directions that government funded research should take in regards to autism in the coming years.

The area that gets the most scrutiny is causation research, so I am blogging it first. Once again, the IACC has put forth a program with the major emphasis on environmental causation projects, with over 70% of funding going towards environmental causation:

Under short term objectives for “Question 3: What Caused This to Happen and Can It Be Prevented?” there are 6 new objectives for 2011. No new “long term” objectives.

Initiate studies on at least 10 environmental factors identified in the recommendations from the 2007 IOM report “Autism and the Environment: Challenges and Opportunities for Research” as potential causes of ASD by 2012. IACC Recommended Budget: $56,000,000 over 2 years.

Convene a workshop that explores the usefulness of bioinformatic approaches to identify environmental risks for ASD by 2011. IACC Recommended Budget: $35,000 over 1 year.

Support at least three studies of special populations or use existing databases to inform our understanding of environmental risk factors for ASD in pregnancy and the early postnatal period by 2012. Such studies could include:
o Comparisons of populations differing in geography, gender, ethnic background, exposure history (e.g., prematurity, maternal infection, nutritional deficiencies, toxins), and migration patterns; and
o Comparisons of phenotype (e.g., cytokine profiles), in children with and without a history of autistic regression, adverse events following immunization (such as fever and seizures), and mitochondrial impairment. These studies may also include comparisons of phenotype between children with regressive ASD and their siblings.
Emphasis on environmental factors that influence prenatal and early postnatal development is particularly of high priority. Epidemiological studies should pay special attention to include racially and ethnically diverse populations. IACC Recommended Budget: $12,000,000 over 5 years.

Support at least two studies that examine potential differences in the microbiome of individuals with ASD versus comparison groups by 2012.
IACC Recommended Budget: $1,000,000 over 2 years.

Support at least three studies that focus on the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes via epigenetic mechanisms to alter gene expression, by 2012. IACC Recommended Budget: $20,000,000 over 5 years.

Support two studies and a workshop that facilitate the development of vertebrate and invertebrate model systems for the exploration of environmental risks and their interaction with gender and genetic susceptibilities for ASD by 2012. IACC Recommended Budget: $1,535,000 over 3 years.

Many have claimed in the past that the IACC has not supported environmental causation. This is just not true, and it is not true going forward. Causation research in the past few Strategic Plans has focused the majority of funding on environmental and gene-environment causation.

Many have claimed that this blog is somehow against environmental causation research. Again, this is clearly not true.

I doubt either argument will go away. But, those are minor issues. What is important is what gets done. Causation research is important.

I would, and have, argued that research into supporting autistics alive today is also highly important. Research involving issues concerning autistic adults is vastly underfunded in my view. Total budget for new projects in the “WHAT DOES THE FUTURE HOLD, PARTICULARLY FOR ADULTS?” is zero. That’s right. No new projects in this area.

Besides neglecting the needs of a large number of adults today, this is poor planning for the future of today’s children. A person will spend about 75% of his/her life as an adult. Much, if not most, of that time without the support of parents.

The Arc Action Alert – Do You Want “Congregate Care”?

25 Feb

The Arc sends out periodic Action Alerts. I just got this one in my email inbox. Do you think the government should go back to segregated living and institutions for people with intellectual and developmental disabilities? Now is your chance to add your comments and be heard.

Do You Want “Congregate Care”?
Then now is the time to counter calls for institutions and other segregated settings

institution for people with intellectual and developmental disabilities. The Administration on Developmental Disabilities (ADD) has just extended the deadline for submitting testimony for its national listening sessions. And people who support institutions are wasting no time in letting ADD know what they want. In fact, VOR is calling on its membership to “Tell ADD to support Choice” in residential settings for people with intellectual and developmental disabilities.

Please take a minute to provide your comments to ADD and let them know that segregated, congregate living for people with disabilities should NOT be a choice. We know all too well that abuse, neglect and other forms of denigration are far more likely to occur in large congregate settings. Integrated, community based housing is the only policy the federal government should be supporting.

It’s critical that ADD hear from many people with intellectual and developmental disabilities or their family members. Please submit your comments before March 4 at:
http://www.envision2010.net/comment_submit.php

Thank you in advance for your advocacy.

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