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Friday, November 30, 2012

The Hearing

The House Committee on Oversight and Government Reform held its autism hearing yesterday (video of full hearing is here).  Autism News Beat live-blogged it here and here.

Anti-vaccine activists packed the room, as Dan Olmsted suggests at The Age of Autism:
The questions were tough and bipartisan -- from Republicans like longtime thimerosal foe Dan Burton (above, with Mark Blaxill) to Chairman Darrell Issa, who said no topic would be out of bounds as the committee continues to probe. Democrat Carolyn Maloney, who has tried to get a vax-unvax study through the House for years, gave 'em the what-for once again. And while I have seen Democratic Congressman Elijah Cummings on TV, I wasn't prepared for the common-sense and deeply troubled approach he brought to the proceedings. The look on his expressive face was priceless. His comment, "There's something wrong with this picture," may go down in history with gems like Jim Carey's "The problem is the problem."
Cummings pointed out the animated, frustrated faces of the audience, many of whom I know quite well. Their collective eye-rolling served as a great backdrop for the in-credible defense of the federal response to autism and vaccine safety worries. And while CDC-types consider individuals as little more than walking anecdoctal evidence, to elected officials they are the voters who put them there and can kick 'em out.
The Thinking Person's Guide to Autism was more skeptical about the hearing:
During the first part of the hearing, outgoing Rep. Dan Burton let thoroughly debunked mercury-autism and vaccine-autism causation pseudoscience theories fly, despite CDC representative Coleen Boyle's calm reiteration of actual autism facts and figures, and reminders that the CDC's 1 in 88 autism numbers point to underdiagnosis of existing autism numbers rather than a rise in autism rates. Several congressional committee members could have benefitted from reading TPGA's Mission Statement's primer on critical autism thinking & pseudoscience checklist before the hearing.
GRASP executive director Michael John Carley testified:
 Tone, and language may seem like pc-nonsense semantics to many, but not to someone on the spectrum who grows up having to hear words like “cure,” “disease,” “defeat,” and “combat”—words that have no medical basis given the genetic component of autism (for though we may improve dramatically, we’re born with this and will die with this) and given the harm these words cause there is also no ethical basis for their usage. Especially when the words come from not just misguided ad campaigns, but coming from people who might genuinely love us, people who use these words because they learned them from experts on TV . . . Such negative self-imagery makes self-esteem so much harder to achieve for an individual who is at a psychological disadvantage enough as it is. We have to remember that the vast majority of this population can read what is being written about them, and hear what is being said about them. And as everyone of us grows, spectrum or not, we need to hear about what we can do, not just what we can’t.
ASAN's Ari Ne'eman questioned research priorities, citing the example of a nonverbal young man he had met:
Members of the Committee: Why can’t we do better for him? Why can’t we give him a chance to communicate more clearly, to not only sit here and testify before Congress someday but also be able to tell his supporters and friends what he wants for his life, to tell his parents that he loves them and how important they are in his life? Some people say that until we unravel the causation of autism, that is impossible. That is quite simply not the case – Augmentative and Alternative Communication technology has existed for many years now and can empower even those of us who cannot speak to make their voices heard.
If we invested a mere one-tenth of the amount of money that we currently pour into causation into empowering Autistic people to communicate, that young man and hundreds of thousands more like him would be able to communicate their needs to us today. I am not here today to speak for every Autistic person – that’s impossible. What I am here for is to argue for every Autistic person to have the same opportunity to communicate that I have come to enjoy thanks to the support that I have been lucky enough to receive in my life. 

Thursday, November 29, 2012

A Company That Focuses on Hiring ASD People

Previous posts have looked at the employment of ASD adults, and a couple have discussed the Danish company Specialisterne.  The New York Times reports on the company's founder, Thorkil Sonne, an autism dad who noticed that his son Lars had impressive powers of concentration.
Sonne did not consider himself an entrepreneurial type, but watching Lars — and hearing similar stories from parents he met volunteering with an autism organization — he slowly conceived a business plan: many companies struggle to find workers who can perform specific, often tedious tasks, like data entry or software testing; some autistic people would be exceptionally good at those tasks. So in 2003, Sonne quit his job, mortgaged the family’s home, took a two-day accounting course and started a company called Specialisterne, Danish for “the specialists,” on the theory that, given the right environment, an autistic adult could not just hold down a job but also be the best person for it.
For nearly a decade, the company has been modest in size — it employs 35 high-functioning autistic workers who are hired out as consultants, as they are called, to 19 companies in Denmark — but it has grand ambitions. In Europe, Sonne is a minor celebrity who has met with Danish and Belgian royalty, and at the World Economic Forum meeting in Tianjin in September, he was named one of 26 winners of a global social entrepreneurship award. Specialisterne has inspired start-ups and has five of its own, around the world. In the next few months, Sonne plans to move with his family to the United States, where the number of autistic adults — roughly 50,000 turn 18 every year — as well as a large technology sector suggests a good market for expansion.
 As Sonne tries to build up his business in the United States, though, he faces practical challenges. For one thing, in Denmark, the government helps cover some of the additional expense of managing autistic workers, and it pays Specialisterne so it can give its employees full-time salaries even though they only work part time. Specialisterne pays its consultants in Denmark between $22 and $39 an hour, a rate negotiated with unions, and in Delaware it plans to start with salaries between $20 and $30 an hour. And while two Delaware charitable foundations have pledged $800,000 to Specialisterne, Sonne estimates that it will take $1.36 million, and three years, for the business to become self-sustaining.
The title is "The Autism Advantage," which hints at the savant stereotype.  But writers do not choose the titles of newspaper articles, and the piece itself is pretty careful  on this point:
Another challenge involves expectations. A new stereotype of autistic people as brainiacs, endowed with quirky superminds, is just as misguided as the old assumption that autistic people are mentally disabled, Sonne says. Autistic people, like everyone else, have diverse abilities and interests, and Specialisterne can’t employ all of them. Most people Specialisterne evaluates in Denmark don’t have the right qualities to be a consultant — they are too troubled, too reluctant to work in an office or simply lack the particular skills Specialisterne requires. The company hires only about one in six of the men and women it assesses.

Wednesday, November 28, 2012

Dan Burton and the House Oversight Hearing

Roll Call  reports on tomorrow's House Oversight hearing.
With about a month left before he retires, [Dan] Burton will have one last chance to pursue the issue from his seat on the Oversight panel Thursday, when the panel holds a hearing on autism spectrum disorders. Burton said he plans to focus his questions on environmental factors — such as mercury or other contaminants in water — that have the potential to affect children’s neurological systems, as well as the vaccine issue.
“I’m very confident that the mercury in vaccinations is a contributing factor,” said Burton, whose teenage grandson has autism. “It may not be the only one — that’s why I talked about environmental issues as well — but certainly anything that you inject into your body that has mercury in it is a contaminant.”
But while Burton requested the hearing and expects to preside over part of it, the testimony lined up by the Oversight panel is expected to take a wider look at the autism spectrum rather than zeroing in on the controversy over vaccines. In an invitation to the National Institutes of Health, Chairman Darrell Issa, R-Calif., said the hearing would look at “the federal response to the recent rise in ASD diagnoses,” the distribution of government resources, and research and treatment options.
“Rising ASD diagnosis rates present a challenge to federal agencies charged with coordinating response efforts,” Oversight spokesman Ali Ahmad said. “The committee will hear testimony from a broad array of voices, including parent advocates, self advocates, educational specialists and scientists.”

Tuesday, November 27, 2012

Research and Prevlance

Geraldine Dawson writes at Archives of General Psychiatry:
This issue of the journal features 3 articles on autism.1- 3 A decade ago, the journal published about the same number of autism articles per year. This reflects a broad expansion in the number and diversity of research publications on autism spectrum disorder (ASD). A recent analysis conducted by the Interagency Autism Coordinating Committee4 reveals that ASD publication growth matched broader publication growth until the late 1990s. A dramatic increase in the growth of ASD-related publications began in 2000 and has continued, outpacing publications on similar health-related topics. Most publications focus on biology; in fact, 2 of the 3 articles on autism published in this issue1- 2 explore the neural basis of autism. The Interagency Autism Coordinating Committee analysis found that publications on treatments and risk factors tie for the second most frequent type of publication.
To what can we attribute this explosion of research on autism? As noted in the Interagency Autism Coordinating Committee report, the Children’s Health Act was passed in 2000, calling for increased research funding as well as establishment of autism centers of excellence and improved surveillance. At that time, the National Institutes of Health devoted about $50 million to autism research. In 2006, the Combating Autism Act called for continued autism research funding. Around that time, the Simons Foundation launched its autism research initiative, and Autism Speaks began to provide about $25 million in annual autism research funding. By 2010, federal funding for autism research reached approximately $334 million and private foundation funding exceeded $74 million.
The upsurge of research parallels a dramatic increase in autism prevalence during the same period. In the past 6 years alone, the prevalence of ASD has increased 78%5 and the estimated annual cost of autism has more than tripled.6 Although we have witnessed a significant infusion of autism research funding, the 78% increase in ASD prevalence has been met by only a 43% increase in federal funding. In other words, the per capita autism federal research funding has decreased from an estimated $62 per person in 2007 to $47.50 per person with ASD today. Thus, we continue to have a great need for more research funding, especially for neglected areas such as research on adults and treatment.
1. Ecker C, Ginestet C, Feng Y, Johnston P, Lombardo MV, Lai M-C, Suckling J, Palaniyappan L, Daly E, Murphy CM, Williams SC, Bullmore ET, Baron-Cohen S, Brammer M, Murphy DGM; MRC AIMS Consortium. Brain surface anatomy inadults with autism: the relationship between surface area, cortical thickness, and autistic symptoms [published online November 26, 2012]. Arch Gen Psychiatry. doi:10.1001/jamapsychiatry.2013.265.
2. Suzuki K, Sugihara G, Ouchi Y, Nakamura K, Futatsubashi M, Takebayashi K, Yoshihara Y, Omata K, Matsumoto K, Tsuchiya KJ, Iwata Y, Tsujii M, Sugiyama T,Mori N. Microglial activation in young adults with autism spectrum disorder [published online November 26, 2012]. Arch Gen Psychiatry. doi:10.1001/jamapsychiatry.2013.272.
3. Volk HE, Lurmann F, Penfold B, Hertz-Picciotto I, McConnell R. Traffic-related air pollution, particulate matter, and autism [published online November 26, 2012]. Arch Gen Psychiatry. doi:10.1001/jamapsychiatry.2013.266.
4. Interagency Autism Coordinating Committee, US Department of Health & Human Services. IACC/OARC autism spectrum disorder publications analysis: the global landscape of autism research, July 2012. Accessed September 2, 2012.
5. Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators; Centers for Disease Control and Prevention. Prevalence of autism spectrum disorders: Autism and Developmental Disabilities Monitoring Network, 14 sites, United States, 2008. MMWR Surveill Summ. 2012;61(3):1-19.
6. Knapp M, Mandell D, Buescher A, Cidav Z. Autism: economic impact and implications. Paper presented at: 2012 Autism Summit, Investing in Our Future: The Economic Costs of Autism; March 31, 2012; Hong Kong, China. 
Here is a post on the increase in studies.

See another post, however, about the way in which IACC classified treatment studies.

Air Pollution as a Possible Cause of Autism

A couple of years ago, a post mentioned a study of a possible link between autism and proximity to freeways.  The same team of researchers has a new study, as The Los Angeles Times reports:
In a finding that points to a link between environmental toxins and autism, a new study shows that children who were exposed to the highest levels of traffic-related air pollution during gestation and in early infancy were three times more likely to be diagnosed with the neurodevelopmental disorder than were those whose early exposure to such pollutants was very low.
The study, published Monday in the Archives of General Psychiatry, found that early exposure to high levels of air pollution in general was linked to an increased likelihood of autism in a group of more than 500 children followed for several years from birth. The researchers gathered regional air quality data and used detailed calculations to estimate the air quality around the residence in which a child's mother spent her pregnancy and the resulting child spent his or her first year.
Their findings suggest that the link between air pollution and autism is evident largely at the highest levels of exposure, and slightly higher when the exposure comes later in a woman's pregnancy. The strongest link was found between exposure to nitrogen dioxide -- a pollutant found plentifully around freeways -- and autism, while exposure to particulates was less strongly linked to autism.
Context Autism is a heterogeneous disorder with genetic and environmental factors likely contributing to its origins. Examination of hazardous pollutants has suggested the importance of air toxics in the etiology of autism, yet little research has examined its association with local levels of air pollution using residence-specific exposure assignments.
Objective To examine the relationship between traffic-related air pollution, air quality, and autism.
Design This population-based case-control study includes data obtained from children with autism and control children with typical development who were enrolled in the Childhood Autism Risks from Genetics and the Environment study in California. The mother's address from the birth certificate and addresses reported from a residential history questionnaire were used to estimate exposure for each trimester of pregnancy and first year of life. Traffic-related air pollution was assigned to each location using a line-source air-quality dispersion model. Regional air pollutant measures were based on the Environmental Protection Agency's Air Quality System data. Logistic regression models compared estimated and measured pollutant levels for children with autism and for control children with typical development.
Setting Case-control study from California.
Participants A total of 279 children with autism and a total of 245 control children with typical development.
Main Outcome Measures Crude and multivariable adjusted odds ratios (AORs) for autism.
Results Children with autism were more likely to live at residences that had the highest quartile of exposure to traffic-related air pollution, during gestation (AOR, 1.98 [95% CI, 1.20-3.31]) and during the first year of life (AOR, 3.10 [95% CI, 1.76-5.57]), compared with control children. Regional exposure measures of nitrogen dioxide and particulate matter less than 2.5 and 10 μm in diameter (PM2.5 and PM10) were also associated with autism during gestation (exposure to nitrogen dioxide: AOR, 1.81 [95% CI, 1.37-3.09]; exposure to PM2.5: AOR, 2.08 [95% CI, 1.93-2.25]; exposure to PM10: AOR, 2.17 [95% CI, 1.49-3.16) and during the first year of life (exposure to nitrogen dioxide: AOR, 2.06 [95% CI, 1.37-3.09]; exposure to PM2.5: AOR, 2.12 [95% CI, 1.45-3.10]; exposure to PM10: AOR, 2.14 [95% CI, 1.46-3.12]). All regional pollutant estimates were scaled to twice the standard deviation of the distribution for all pregnancy estimates.
Conclusions Exposure to traffic-related air pollution, nitrogen dioxide, PM2.5, and PM10 during pregnancy and during the first year of life was associated with autism. Further epidemiological and toxicological examinations of likely biological pathways will help determine whether these associations are causal.

Monday, November 26, 2012

Autistic Representation at the Hearing

Thursday's hearing at the House Committee on Oversight and Government Reform should have a robust attendance. Landon Bryce writes at thAutcast:
I just got confirmation that the House Oversight Committee has invited two leaders of the autistic self-advocacy community to be witnesses at the hearing they are holding this Thursday on the federal government's response to autism. The majority members have invited Michael John Carley, president of the Global and Regional Asperger's Syndrome Partnership, and the minority members have invited Ari Ne'eman, president of the Autistic Self Advocacy Network.
Mr. Carley told me, "My hope is to convey to the committee that how we proceed (with special regard to tone), is just as important as the question of 'in what direction do we proceed?'"
From ASAN:
On November 29th, the House Committee on Oversight and Government Reform will be holding a hearing on autism. Invited witnesses include people from government agencies, parent autism advocacy organizations, AND Autistic self-advocacy organizations. We are pleased to report that the House Committee on Oversight and Government Reform staff have just reached out to us to invite Autistic representation to this Thursday’s hearing.
Thanks to all of you for making your voices heard and to the House Committee for hearing the messageNothing About Us, Without Us! Whether you faxed letters of support for Autistic representation at the upcoming hearing or signed our petition, your voice has been heard. Now Autistic voices will be heard as well. ASAN President Ari Ne’eman has been invited as one of not one but TWO Autistic witnesses scheduled to testify at the hearing.
The journey doesn’t end there. Come join us in showing support to Autistic people speaking! We’ll be gathering together at the Rayburn House Office, Room 2154 on the day of the hearing. The hearing itself will begin at 2 PM, but as we anticipate a packed room ASAN will begin gathering besides the door to the hearing at 11 AM. RSVP via our Facebook event page.

Alan Guttmacher, M.D.
Director, Eunice Kennedy Shriver National Institute of Child Health and Human Development
National Institutes of Health

Coleen Boyle, Ph.D.
Director of the National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

Mr. Bob Wright
Autism Speaks

Mr. Scott Badesch
Autism Society

Mr. Mark Blaxill
Board Members

Mr. Bradley McGarry
Coordinator of the Asperger Initiative at Mercyhurst
Mercyhurst University

Mr. Michael John Carley
Executive Director
Global & Regional Asperger Syndrome Partnership

Mr. Ari Ne'eman
Autistic Self Advocacy Network

Sierra Madre Update

Previous posts have described an incident in Sierra Madre, California. An update in The Sierra Madre Tattler:
Armed with a newly cleaned and earth friendly eco-suds'd and air dried under a waxing crescent moon for two days Censure Honowitz shirt, we parked with our friends at the PUSD office to put up our recycled and green “Censure Honowitz”, and “Stop Bullying in Sierra Madre” signs on our SUVs and F150s, and then proceeded to directly challenge the status quo with our eighth on the street picket. We then attended the first part of the November 13 public board meeting.
Gone are the good old days when the PUSD administrative staff would call the police on us when we showed up with our signs. At some point they must have figured out that citizens have the right to peaceful assembly.
Don’t laugh. These are the very people in charge of teaching your children civics and teaching them the Constitution of the United States.
Ah, yes. The good old days. I still think my favorite visual picture was watching one of the lumbering unicorns scramble to make a cell phone call to report that someone posted a poster stating Inclusion Free Zone on the marquee of Sierra Madre Elementary School. I waved as I drove by. Toodles! Always the good neighbor, I am. That statement was almost as good as the truck parked across the street from the school the day the Gayle Bluemel Auditorium was christened. It had one bold four letter word emblazoned in red paint across it: LIAR.
And so. Back to the meeting. From the gate the questions were laid on the district. Our request some six weeks back for an investigation into Honowitz and claim that he and the PUSD had violated our son’s rights under FERPA (Family Educational Rights and Privacy Act) was investigated internally, and like every other PUSD investigation, the outcome was the same. No violation. Simply put, on with the usual business.
More here: 

Sunday, November 25, 2012

Autism in Australia

Previous posts have described the international battle over vaccinesIn Melbourne, The Herald Sun reports:
AUSTRALIA'S most distinguished scientists claim the anti-immunisation lobby is endangering children's lives as the number of parents refusing to vaccinate their children rises sixfold.

Amid increasing concern over the issue, and with statisitcs showing one in 12 Australian babies are not fully immunised, twelve top researchers will this week go into battle against those who warn of perceived health dangers from vaccinations.

Professor Ian Frazer, who invented the cervical cancer vaccine, says he fears immunisation levels for some diseases are falling below those required to prevent deadly outbreaks.

And eminent biologist Sir Gustav Nossal has accused the anti-vaccination lobby of preventing the eradication of measles through its false claim that the vaccine against the disease caused autism.
A 20-page booklet to be launched on Monday explains that many more children will die from diseases like measles, mumps, and diphtheria than will be harmed by the side effects of immunisation.
The same paper also reports that Australia is having funding problems:
 COLLEEN Osmond is the human face of the greatest revolution to hit NSW education in decades.
The school learning support officer (SLSO) was sacked from her job providing one-on-one support to students with autism as a result of the overhaul to disability funding at the state's public schools.
The Every Student, Every School policy removes individual funding for students with milder disabilities such as autism, reading and language difficulty and ADHD, giving principals one bucket of money based on factors such as school size, NAPLAN results and the prevalence of autism in the local community.

Saturday, November 24, 2012

Danger on the Bus

School buses can be dangerous places for kids on the spectrum. A previous post described a choking incident on a bus in Broward County, Florida.  The Sun-Sentinel reports:
Two Broward school transportation employees lost their jobs Tuesday because of an incident where a 13-year-old autistic student was allegedly choked by an attendant on a school bus.
The School Board, in its first meeting of a new term, fired bus attendant Darryl Blue, 48, of Fort Lauderdale, who was charged with aggravated child abuse on Nov. 7, and bus driver Chelsi Edwards, 24, who was not criminally charged. Blue was fired for "disciplinary termination," and Edwards was still on probation, allowing the district to fire her without cause. Neither could be reached for comment.
A couple of weeks ago, The Orange County Register reported on a case in Anaheim, California, in which a driver forgot about a severely disabled teen and left him alone on a bus for hours.
Anaheim Union High School District is investigating how an autistic 15-year-old student was left inside a school bus for about six hours.
The Savanna High student, who is unable to speak and has seizures, sat inside the vehicle parked at the district bus yard for most of the school day, said the teen's mother.
The incident occurred Sept. 11. Temperatures that day hit the mid-80s. The student, Patrick Hoang, appeared physically fine when he returned home that day, mother Lucie Hoang-Ngo said. But she worries her son may have been frightened or suffered other emotional harm from being left alone.
"I just don't know how something like this could have happened," Hoang-Ngo said. "I am angry because no one is giving us any answers."
A TV report from KCAL:

Friday, November 23, 2012

Reactions to the Upcoming House Hearing

At Left Brain/Right Brain, Matthew Carey has an open letter to the House Committee on Oversight and Government Reform.  It notes that the title of the hearing gives the impression that autism is primarily a children's issue.
I write to you in regards to your upcoming autism hearing. Much has happened in the decade since the Committee last met on autism.
“1 in 88 Children: A Look Into the Federal Response to Rising Rates of Autism”
We need to shift from seeing autism as primarily a discussion of children to being focused on the entire population. We need to shift from being primarily focused on viewing autism as primarily an epidemiological topic to focusing on improving the lives of our citizens. There are over three million American autistics. Improving the lives of autistics should be a top priority.
Consider this simple paragraph, the description of the hearing:
“The hearing will address the federal response to the recent rise in Autism Spectrum Disorders diagnoses, as well as the allocation of government resources for ASD. The hearing will also review research and treatment options for those diagnosed with ASDs.”
Research and treatment options are after allocation of government resources for ASD, as though these are an afterthought.
The Autistic Self-Advocacy Network has an online petition urging the committee to invite witnesses from organizations run by autistic adults. On Facebook, ASAN is also urging supporters to go to the hearing.

Autism Speaks also mentions the hearing on Facebook.

The Age of Autism notes that TACA families visited Chairman Issa's personal office to thank him for holding the hearing.

Thursday, November 22, 2012

More on the House Oversight Hearing

At Forbes, Emily Willingham expresses concern about next week's House hearing:
As the parent of an autistic child and as a scientist, I’m concerned that a meeting with an agenda not grounded in science will harm not only autistic people who have no voice in the proceedings but also general public health by again raising the specter of “vaccines cause autism” in the public consciousness. Given the stark evidence of how vaccines save lives, any hearing with a Congressional imprimatur should especially involve careful, science-based consideration of public health issues.
I also believe that support in the form of appropriate educational, employment, and therapeutic access for autistic people is important. The federal government devotes considerable resources to autism in the United States, including authorizing $1 billion for autism biomedical and treatment research in 2011. We also already have a federal committee to synthesize and publicize autism-related information and engage in strategic planning for addressing autism-related supports. Would more support be a boon to autistic people and their families, especially if it targeted existing needs? Yes. But I do not understand how a Congressional committee meeting not focused on those needs would suddenly generate any useful insights or practical effects in a hastily organized proceeding with invitees who don’t represent the entire spectrum of the autism community. Soon-to-retire Rep. Dan Burton, the man responsible for the ‘circus-like‘ vaccines-autism committee proceeding in 2000 that featured one Andrew J. Wakefield, remains on this Congressional committee. Given that in 2007, when the purported vaccines-autism link was already disintegrating, Burton argued that families of autistic children should be compensated for “vaccine injury” through the federal Vaccine Injury Compensation Program, I don’t have terribly high hopes that science will be in attendance at this latest meeting, either.

Wednesday, November 21, 2012

Talking Points for the Hearing

Left Brain/Right Brain suggests some talking points for the congressional hearing next week:
1) We need focus on improving the quality of life of Autistics
2) While not all Autistics can self-advocate, if we are going to have autism organizations represented, we need to have Autistic-run organizations represented.
3) Autism is a very broad spectrum, all with challenges of some sort. The government’s response needs to be broad (read-larger than it is now) in order to encompass all the needs of these communities.
4) The vaccine-epidemic hypothesis has been very damaging to the autism communities. Please don’t allow this meeting to be a way around the science in order to keep that idea alive.
5) There are faux therapies in common use for autism. Many are harmless. Some are dangerous and based on incredibly poor science. We need to get accurate information out about these practices.
The Thinking Person's Guide to Autism observes:
We at TPGA are concerned that no autistic-run organizations have been invited to the meeting as of this writing. We are also concerned about the track record of such congressional hearings: they have been used in the past to promote harmful misinformation about autism, and one of the past and current committee members is Rep. Dan Burton, who still firmly believes his grandchild's autism was caused by vaccines.

Tuesday, November 20, 2012

Upcoming Oversight Hearing

The House Oversight and Government Reform Committee has scheduled a Nov. 29 hearing on the federal response to autism, its first in a decade. The committee, chaired by Rep. Darrell Issa (R-CA), will hear from panels of government experts, as well as advocates, including Autism Speaks Co-founder Bob Wright.
According to the witness invitation, the committee "will address the federal response to the recent rise in ASD diagnoses, as well as the allocation of government resources for ASD. It will also review research and treatment options for those diagnosed with ASDs.
Since the committee's last hearing in 2002, the prevalence of autism has skyrocketed to 1 in 88, including 1 in 54 boys, according to the most recent estimate issued by the Centers for Disease Control and Prevention in March 2012. The lifetime cost of caring for a single individual with autism was recently estimated to be as high as $2.3 million. The annual cost to the nation has been pegged at $137 billion.
Congress has responded by approving the Combating Autism Act (CAA) in 2006 and then reauthorizing it for another three years in 2011. The CAA funds core federal autism research, treatment and service programs.
“Autism Speaks commends the House Oversight Committee for scheduling this much-needed hearing,” said Peter Bell, executive vice president for programs and services. “We look forward to sharing some of the concerns and policy goals of the autism community.”
Autism Speaks has raised increasing concerns over the federal government's commitment to addressing the nation's autism epidemic, such as in an Open Letter to the autism community by Bell. 
From thAutcast:
This looks bad.
This looks very bad and I think it will have very negative consequences and I feel powerless to do anything about it:
The House Oversight and Government Reform Committee has scheduled a Nov. 29 hearing on the federal response to autism, its first in a decade. The panel, chaired by Rep. Darrell Issa (R-CA), will hear from panels of government experts, as well as advocates, including Autism Speaks Co-founder Bob Wright.
Apparently, no autistic people, or at least none from organizations headed by autistic people, will be testifying. I have requested a list of witnesses, but haven not gotten it yet. GRASP was not invited. Neither was ASAN
ASAN President Ari Ne'eman gave me this statement:
We're profoundly disappointed that the House Majority has once again decided to convene a hearing without the voices of the community impacted. Less than a year after the famous contraceptive hearing without women, the House Committee on Oversight and Government Reform will be convening a hearing on autism without any Autistic witnesses. ASAN condemns this kind of exclusion and urges the House leadership to include the voices of the organized Autistic self-advocate community.
At Left Brain/Right Brain, Matt Carey expresses concern that anti-vaccine groups will use the hearing to promote their theories.

Monday, November 19, 2012

Autism and STEM Education

Previous posts have discussed autistic people who attend college. At The Journal of Autism and Developmental Disorders, Xin Wei and colleagues have an article titled:  "Science, Technology, Engineering, and Mathematics (STEM) Participation Among College Students with an Autism Spectrum Disorder."  Here is the abstract:
Little research has examined the popular belief that individuals with an autism spectrum disorder (ASD) are more likely than the general population to gravitate toward science, technology, engineering, and mathematics (STEM) fields. This study analyzed data from the National Longitudinal Transition Study-2, a nationally representative sample of students with an ASD in special education. Findings suggest that students with an ASD had the highest STEM participation rates although their college enrollment rate was the third lowest among 11 disability categories and students in the general population. Disproportionate postsecondary enrollment and STEM participation by gender, family income, and mental functioning skills were found for young adults with an ASD. Educational policy implications are discussed.
The article suggests that ASD education may pay dividends for the broader economy:
In an era where a world-class science and engineering workforce is needed to remain competitive in a technologically advancing global economy, it becomes imperative to discover previously untapped sources of STEM talent. This study confirms that individuals with an ASD may indeed have the potential to become such a resource. The implications from these findings also support previous research indicating that postsecondary educational institutions need to provide extra supports and services for students with autism to complete their college degrees and navigate toward STEM careers (Roberts 2010; Van-Bergeijk et al. 2008). Future studies in the area of ASD and STEM should continue to bridge the gap between education research and practice by informing stakeholders, such as parents, high school teachers and administrators, college deans, and counselors of resource centers, of the postsecondary educational environments that best support the enrollment, persistence, and completion of STEM degrees among college students with an ASD.

Sunday, November 18, 2012

Parity Cases

When it comes to health insurance, should autism and other neurodevelopmental disabilities be treated like a sprained back — or like diabetes?
In essence, that's the question at the heart of a pile of class-action lawsuits filed against insurers over the past two years by parents demanding equal treatment for mental-health conditions.
The parents say autism and other conditions affecting the brain should be covered like chronic medical conditions are now — with no limits on the number of visits for treatment.
Group Health Cooperative, one of several insurers targeted by the lawsuits, has announced that as it awaits clarification from a judge, it is suspending coverage limits. That will apply to neurodevelopmental therapies, behavior-modification programs and visits with mental-health practitioners and therapists for issues such as learning, communication and motor skills disorders.
With rehabilitation services, such as speech therapy, Group Health also agreed to stop requiring patients to have "significant, measurable improvement" within a 60-day period in order to continue therapy.
Group Health has also removed caps and limits on Applied Behavioral Analysis (ABA), a type of therapy of particular interest to families of those with autism-spectrum disorders, such as Asperger syndrome, said Group Health spokesman Mike Foley.
Other insurers, including Premera and the state's Uniform Medical Plan for state workers, still spell out limits for various therapies for neurodevelopmental conditions in coverage information. Ele Hamburger and Rick Spoonemore, the lawyers for the parents, say the others should follow Group Health's example.

Saturday, November 17, 2012

A Victory in Florida

An earlier post discussed Henry Frost, a Florida student waging an online fight to attend school.  State Impact reports:
After waiting 57 days since the school year began, Henry Frost will be able to cross the street and walk less than the length of two football fields to attend his neighborhood middle school.
Frost has been taking courses at home while engaged in a dispute with Hillsborough County schools over where he should attend. Frost took his cause to Facebook and other social media and has drawn world-wide attention.
Frost is autistic and has several physical impairments, including hearing loss.
After more than 14 hours of meetings to negotiate an education plan and services for Frost, Hillsborough school officials agreed Tuesday to let Frost attend the school of his choice.

Friday, November 16, 2012

Autism and Yemen

Previous posts have discussed international perspectives on autism.  Emily Willingham writes at Forbes:
In non-USian parts of the world, though, autism doesn’t necessarily get this level of attention, much less acceptance, despite the fact that autistic people are everywhere. One of the largest epidemiological studies of autism identified it in 2.64%% of South Korean schoolchildren, and anecdotal assertions to the contrary, autism does exist in countries like Cambodia. Autistic people also live in Yemen, where a lack of awareness can seriously affect outcomes. As Yemeni mother Fam Um Ahmed said in an interview with Sadeq Al-Wesabi, writing for the Yemen Times:
Although I’m educated, I had no idea about autism, and what I’d heard about it was that it’s a horrible and destroying thing. I didn’t realize at that time that my child was suffering from autism until the doctor told me,” she said.
Yemen doesn’t seem to have a large, well-funded national organization to litter the country with blue puzzle pieces and ask for your donation at a Toys ‘R’ Us checkout. Its media don’t appear to carry the obsession that the US media have with autism–in fact, a search on “autism” at the Yemen Times turned up three articles. A search at That gets you 721 hits. In the US, that level of coverage starts to become background noise. In Yemen, awareness–or a lack of it–really does matter.
It’s not a huge shock that we in the United States tend to be US-centric when we talk about anything–politics, religion, global climate change, autism. But as we spend our time and energy here arguing the finer points of autism causation, writing alarmist stories about every scientific study that mentions autism–whether it studied it or not–, and engaging in internecine battles in the autism community, autistic people walk around all parts of the globe, needing resources and support and useful interventions as much–or even more–than autistics in the United States. Perhaps it’s time more of us became aware of that.

ABLE Act Press Conference

A release from Rep. Ander Crenshaw:
Congressman Ander Crenshaw (R-FL) and Senator Robert Casey (D-PA) today (11/15) recognized the year anniversary of the introduction of the Achieving a Better Life Experience Act (ABLE Act – HR 3423/S 1872), citing growing support for creating tax-free savings accounts for the disabled and underscoring their continued fight to push the bipartisan bill to passage during the current lame duck session of Congress.
House and Senate bill co-sponsors and representatives from the National Down Syndrome Society, The Arc, and Autism Speaks joined them at a press conference at the House Triangle on the grounds of the United States Capitol on Thursday, Nov. 15. There, members of the group marked the anniversary of the bill’s introduction in the 112th Congress, outlined the road ahead for the bill, and described an improved quality of life for individuals with disabilities through the legislation.
The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill was introduced in the 112th Congress on November 15, 2011 and has earned the support of 234 House Members and 40 Senate Members.
Congresswoman McMorris Rodgers stated, “As the mom of a child with special needs and Co-Chair of the Congressional Down Syndrome Caucus, I know firsthand the importance of promoting policies that will help those with disabilities lead independent lives. The ABLE Act will allow parents to save for their children’s futures and give kids with disabilities an added layer of security. I’m proud to join a bipartisan group of House and Senate leaders in support of this legislation, and I will do all that I can to ensure that individuals with disabilities have better and brighter futures.”
Congressman Pete Sessions (R-TX) stated, “The support we’ve seen for the ABLE Act this year is encouraging, and I will continue to work with my colleagues on moving this common-sense legislation forward. As the father of a young man with Down syndrome, I am committed to finding ways to enhance the quality of life and maximize the potential for all individuals with disabilities. I strongly believe that allowing families to form tax-free savings accounts to cover certain expenses, like education and housing, will create a brighter future for our loved ones with disabilities.”
Peter Bell, Executive Vice President of Programs and Services for Autism Speaks, stated: “With the prevalence of autism on the rise and the lifetime cost of caring for a single individual now estimated at about $2 million, ABLE offers a fiscally responsible solution to address this public health crisis. We urge Congress to recognize the overwhelming bipartisan support for this measure and act for all families with disabilities this session.”

Congressman Ander Crenshaw
• Barbara Riley, Communications Director
Email:, Phone: 202.225.2501
Senator Robert Casey
• April Mellody, Communications Director/ John Rizzo, Press Secretary
Email: and
Phone: 202.224.6324
National Down Syndrome Society (NDSS)
• Chip Gerhardt, National Down Syndrome Society Board Chair
• NDSS Self Advocate Jenny Cunningham, Worthington, OH
• NDSS contact: Sara Hart Weir, Vice President, Advocacy & Affiliate Relations
Email:, Phone: 202.680.8867
• Joyce Lipman, Former Board Member of TheArc and her daughter Elise Lipman, Rockville, MD
• TheArc contact: Kristen McKiernan, Communications Director
Email:, Phone: 202.534.3712 | Toll free: 800.433.5255
Autism Speaks
• Peter Bell, Executive Vice President, Autism Speaks
• Autism Speaks Self Advocate Scott Gladstone, Bethesda, MD
• Autism Speaks contact: Rick Remington, Communications Director, Government Relations
Email:, Phone: 646.367.5334

Thursday, November 15, 2012

Disability Parents Get Top House Posts reports:
Rep. Cathy McMorris Rodgers a pro-life congresswoman from Washington state, was elected House Republican Conference chair, making her the highest-ranked Republican woman in the House of Representatives.
McMorris Rodgers occupies the fourth-highest leadership position in the party, which will again be headed by pro-life Speaker John Boehner and pro-life Majority Leader Eric Cantor. She defeated pro-life Georgia Rep. Tom Price for the position that essentially becomes the party’s chief messenger on issues, including abortion....
 She also has a son who has Down Syndrome and has spoken out eloquently about him
Because of Cole, I meet and work with so many individuals and organizations across the country that strive to make the lives of those with disabilities better: the National Down Syndrome Society, the National Down Syndrome Congress, Global Down Syndrome, Autism Speaks, Keep Infants with Down Syndrome (KIDS), the Evergreen Club and so many more. I work with the American Association of People with Disabilities (AAPD) to offer students with physical and intellectual disabilities internships in my office. I have become part of an extensive network of people who focus on the gifts — not the limitations — that those with disabilities bring to this world.... 
In fact, in this Congress alone, I’ve worked with my colleagues across the aisle to introduce the Achieve a Better Life Expectancy (ABLE) Act, which would empower individuals with disabilities by reforming the tax code and enabling them to have access to their benefits. When Cole was born, we were advised not to put any assets in his name because it would penalize him if he needed to qualify for a government program someday. Millions of others parents face the same impediment: they want to expand their children’s options without jeopardizing their access to benefits. We must get rid of federal policies that limit those with disabilities and make them dependent on the government. We need the ABLE Act so that children with special needs can have the opportunity for better and brighter futures.
Another Down Syndrome parent, Rep. Pete Sessions (R-TX), will chair the powerful House Rules Committee.

Wednesday, November 14, 2012

ABLE and TRICARE in the Lame Duck Session of Congress

At Autism Speaks, Stuart Spielman writes:
Congress returns today to Washington to tackle a weighty agenda of items that need to be addressed before the newly elected Congress takes office in January. The widely reported “fiscal cliff,” the mix of looming tax and spending issues, has dominated the headlines and affects federal funding for autism research and services. But there are other issues that Congress must not overlook:
  • TRICARE Reform – The House has already passed its version of the new defense budget, the National Defense Authorization Act, which strengthens the coverage of applied behavior analysis (ABA) and other behavioral health treatments under TRICARE, the health care program for military families. TRICARE currently provides only limited ABA coverage. Retirees, including wounded warriors, cannot get coverage for their children and those military families who can access ABA often bump up against dollar caps.
We can and should do better for the children of those who serve our country.The Senate and ultimately the full Congress should send President Obama a defense budget that removes TRICARE’s arbitrary limits on medically necessary autism care.
  • Disability Savings – The House and the Senate are both considering the Achieving a Better Life Experience (ABLE) Act, a bill that would authorize tax-advantaged savings accounts for the needs of people with disabilities. Current law encourages savings for future college costs. Whether or not they attend college people with autism need a way to save for medical care, employment support, housing, and other major expenses. ABLE accounts would meet this need and preserve a beneficiary’s eligibility for Medicaid and other means-tested federal programs.
ABLE enjoys broad bipartisan support in both the House (240 cosponsors) and the Senate (38 cosponsors), uniting legislators across the political spectrum. Many organizations throughout the disability community are working together on this effort. Any tax package that moves through Congress during the lameduck session should include ABLE
A release from Ander Crenshaw:
Congressman Ander Crenshaw (R-FL) and Senator Robert Casey (D-PA) will outline the road ahead for the Achieving a Better Life Experience Act (ABLE Act – HR 3423/S 1872) at a press conference at 2:45 p.m. at the House Triangle on Thursday, November 15.
The Achieving a Better Life Experience Act is bipartisan legislation that would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill was introduced in the 112th Congress on November 15, 2011 and to date has earned the support of 234 House members and 35 Senate Members.
Representatives from the National Down Syndrome Society, The Arc, and Autism Speaks will provide remarks at the press conference. Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), Chris Van Hollen (D-MD), and other co-sponsors in the House and Senate have been invited to attend.
WHAT: Crenshaw, Casey outline the road ahead for the ABLE Act which was introduced on November 15, 2011 and has earned the support of more than half the House and one quarter of the Senate.
WHO: Congressman Ander Crenshaw (R-FL), Senator Robert Casey, Jr. (D-PA), Congressman Chris Van Hollen (D-MD) confirmed. Other House and Senate co-sponsors invited.
WHEN: Thursday, November 15 at 2:45 p.m.
WHERE: House Triangle on the grounds of the United States Capitol.

Monday, November 12, 2012

A Federal Special Education Voucher?

In The Rutgers Law Record, Laura C. Hoffman has an article titled "Special Education for a Special Population: Why Federal Special Education Law Must Be Reformed for Autistic Children:"
This article attempts to examine the complicated question of how to provide special education services for children with autism in the wake of astronomically high rates of diagnosis. In  Part I, this article will introduce the federal Special Education Laws affecting children with disabilities through IDEA and how this system of education presently operates. Part II analyzes a 2005 report prepared by the federal government through the GAO examining how effective IDEA has been in providing special education services to autistic children. Part III considers a popular alternative that has been created to provide children with disabilities, especially those with autism, special education outside the public system through state school voucher programs. Part IV examines the creation of a tabled federal voucher program that was previously proposed in the reauthorization of IDEA. I will argue that despite the challenges a federal special education voucher program may create, it is a worthy and necessary policy consideration. On the one hand, it would be a practical effort to bring autistic children out of a failed federal special education system that has been far from beneficial. Additionally, the program would provide greater uniformity for voucher programs that currently exist at the state level but vary significantly in their substance.

Sunday, November 11, 2012

Parents and Stress

Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance." New studies confirm that parenting ASD children is stressful. This finding comes as no surprise to these parents -- trust me on that -- but as Alison Singer reminds us, it is important to have systematic published research on all aspects of the issue -- even when it merely documents what people know already. Stress levels are an important element in the politics of autism, too. Stressed-out parents may lack the time and energy to engage in legislative and regulatory advocacy outside their individual cases.


See here for a discussion of IEP-relevant literature.

Fatigue, Stress and Coping in Mothers of Children with an Autism Spectrum Disorder, by Monique Seymour, Catherine Wood, Rebecca Giallo and Rachel Jellett.  Abstract:
Raising a child with an autism spectrum disorder (ASD) can be exhausting, which has the potential to impact on parental health and wellbeing. The current study investigated the influence of maternal fatigue and coping on the relationship between children’s problematic behaviours and maternal stress for 65 mothers of young children (aged 2–5 years) with ASDs. Results showed that maternal fatigue but not maladaptive coping mediated the relationship between problematic child behaviours and maternal stress. These findings suggest child behaviour difficulties may contribute to parental fatigue, which in turn may influence use of ineffective coping strategies and increased stress. The significance of fatigue on maternal wellbeing was highlighted as an important area for consideration in families of children with an ASD.
The Association Between Mental Health, Stress, and Coping Supports in Mothers of Children with Autism Spectrum Disorders, by Benjamin Zablotsky, Catherine P. Bradshaw and Elizabeth A. Stuart.  Abstract:
Raising a child with an autism spectrum disorder (ASD) can be a stressful experience for parents. When left unmanaged, high stress levels can lead to the development of depressive symptomatology, highlighting the importance of coping supports. The current paper examined the stress level and psychological wellbeing of mothers with a child with ASD in a national survey. After adjusting for child, mother and family level characteristics, it was determined that mothers of children with ASDs were at greater risk for poor mental health and high stress levels compared to mothers of children without ASDs. The presence of maternal coping strategies, in the form of emotional and neighborhood social supports, as well as strong coping skills, reduced these risks between models.

Autism Speaks Priorities

Autism Speaks lists several priorities for President Obama's second term:


Saturday, November 10, 2012

A Choking Incident

The Miami Herald reports:

After a 13-year-old autistic child wet his pants while riding on a Broward school bus, the bus attendant — whose job is to assist special-needs students — responded by choking the boy.
The incident, which lasted roughly 45 minutes, was captured by the school bus surveillance camera. Broward Sheriff’s Office deputies this week arrested bus attendant Darryl Blue, 48, on one count of aggravated child abuse. The bus driver who nonchalantly continued on her route, even as the boy screamed in pain, had not been charged Friday.
Neither Blue nor the bus driver have been fired by the school district, though both have been reassigned to “a position away from students,” said Broward school district spokeswoman Marsy Smith. The district is conducting an internal investigation before taking further action.
Blue has worked for the district on and off since 2000, while the driver is a recent hire still in the probationary phase of her employment.
BSO released the surveillance video Friday afternoon.
Unfortunately, there have been similar cases, which is why parents of special-needs kids support video surveillance.

Read more here:

Utah Medicaid Update

The Salt Lake Tribune updates the story on Utah's Medicaid pilot program:
Before they even start, tutors in a state autism pilot project may be getting a raise.
Utah’s Medicaid department is looking into increasing how much it will pay tutors who will provide free applied behavior analysis (ABA) therapy to children with the social and communication disorder. Authorized by the Utah Legislature, the pilot program will cover 250 children ages 2 through 6, through June 2014.
Few existing ABA therapists were interested in applying, saying the pay was too little for their experienced employees and wasn’t enough to train less-qualified applicants. The rate is also lower than other two state-funded pilots through the Public Employees’ Benefit and Insurance Program and the Autism Treatment Account.Medicaid set the rate for the tutors, who would provide 20 hours of in-home therapy a week, at $21.52 an hour. But they could make as little as $14.42 an hour because of insurance and other training costs.
Supporters hope the pilot projects will show good results and lead to broader autism therapy coverage.

Friday, November 9, 2012

Audio and IEP

Previous posts have discussed the issues associated with recording devices. In Maine, the Lewiston-Auburn Sun-Journal reports:
The parents of a 13-year-old Mt. Ararat Middle School student who has autism and intellectual disabilities are challenging the school district's decision to block them from sending their son to school with an audio recording device.
The school district is fighting the parents' proposal, saying it's not conducive to providing educational services and poses a threat to the privacy of other students and school staff.
A hearing made public by the parents started last week and is scheduled to continue Monday.
Jane Quirion had notified SAD 75's attorney in March that she intended to send her son, Ben, a seventh-grader who is nonverbal, to school with an audio recorder in an effort to keep him safe and to ensure that school staff were complying with the terms of Ben's individualized educational plan, known as an IEP.
Ben's father, Matthew Pollack, who is a lawyer, said the response from the school's attorney was jolting.
The attorney threatened to bar Ben from school if he were equipped with a live audio recorder, Pollack said.
"They claimed it wasn't discipline. He just wouldn't be allowed in," he said.
The school's attorney said it would have constituted a crime, as well as a violation of school policy, Pollack said. The attorney added that it would have violated the school's collective bargaining agreement with the teaching staff, Pollack said.

Thursday, November 8, 2012

Testimony and ASD

Previous posts have discussed the role of people with ASD in the legal system. reports:
To test the theory of whether people with ASD make good eyewitnesses, Katie L. Maras of the Department of Psychology at City University London recently conducted a series of experiments involving people with and without ASD. Maras used slide depictions and video presentations of emotionally neutral events and emotionally arousing events. Participants were asked to recall the details of the events immediately after they viewed them and again several days later. During this time, unsolicited recall was documented as well.
Contrary to existing theories, the results of Maras’ study showed that individuals with ASD were able to recall the emotionally arousing events nearly as well as those without ASD. Although they exhibited general deficits, such as remembering more slowly and making more mistakes, they did process the arousing events as more memorable than the neutral events, which is similar to the way those without ASD process these types of events. Maras notes that even though the experiments in her study narrowed the variability of recollection cues and influences, they open the door for additional questions. “The type of material, mode of presentation, and delay between study and test varies considerably across the few relevant studies to date, and future studies should seek to vary these factors systematically,” Maras said. She added that the existing data is still unclear, and efforts should continue in order to better understand what factors contribute to memory recall in those with emotional deficits.
Maras, Katie L., Sebastian B. Gaigg, and Dermot M. Bowler. Memory for emotionally arousing events over time in Autism Spectrum Disorder. Em 12.5 (2012): 1118-128. Print. 
 The abstract is here:
Emotionally arousing events are typically better remembered and more resistant to forgetting than neutral events. Findings from word list paradigms suggest that this may not hold for individuals with Autism Spectrum Disorder (ASD), who also tend to be less accurate as eyewitnesses under some circumstances. To test whether attenuated effects of arousal on memory may be responsible for poorer eyewitness testimonies in ASD, we asked adults with and without the disorder to view either arousing or neutral versions of a narrated slide sequence (Experiment 1) or video clip (Experiment 2) before assessing their memory for the material. Both groups exhibited increases in psychophysiological arousal during the arousing compared with the neutral version of the narratives, and both groups also demonstrated a memory advantage for the arousing events. Contrary to predictions, these observations indicate that stimulus induced arousal modulates memory for naturalistic events relatively typically in ASD

Wednesday, November 7, 2012

Election Results

The Los Angeles Times reports on an unsurprising result in California:
Democrat Dianne Feinstein, California's senior U.S. senator, won an easy reelection victory over nonprofit executive Elizabeth Emken, her underfunded, little-known Republican challenger.
Feinstein, 78, was running for her fourth full term against Emken, 49, an autism activist from Danville whose only previous run was a failed primary bid for a congressional seat.
Emken had support, but received little financial help, from the California Republican Party.
She raised just $677,000 to Feinstein's more than $9.1 million, filings with the federal government show.
An autism dad went down in Minnesota.  A report from Minnesota Public Radio:
In one of the most hotly contested Congressional races in the nation, former U.S. Rep. Rick Nolan, a Democrat, defeated incumbent Republican U.S. Rep. Chip Cravaack.
With 94 percent of the precincts reporting by early morning, Nolan led Cravaack by a margin of 55 percent to 45 percent.
In choosing Nolan, voters in Minnesota's 8th District ended Cravaack's bid for a second term, and returned its seat in to Democratic control. Cravaack won the seat two years ago by defeating longtime U.S. Rep. Jim Oberstar in a wave of voter discontent that gave Republicans control of the House of Representatives.
Last year, Cravaack's wife and children moved to New Hampshire. Cravaack said his wife left for a job in Boston, and that his autistic son left so he could be closer to her. That sparked a complaint by one autism advocate that Cravaack was trying to win sympathy points.

Tuesday, November 6, 2012

Financial Planning for ASD Family Members

The Wall Street Journal has a story about a financial adviser Michael Duckworth, who helps affluent clients who have disabled family members.  In one case, he found that the clients' existing plans would exclude their autistic daughter from adult programs.
The reason: The very best programs in her community were only available to people on Medicaid. To qualify for Medicaid, an individual's assets cannot exceed $2,000. Yet the family's outside advisers had put together a financial strategy that, while perfectly suitable for a typical family, would permanently put the girl's income over that limit and thereby effectively eject her from the public system.
"Advisers who don't practice in this area can inadvertently create extraordinary problems that they just can't see," explains Mr. Duckworth, who leads a private-banking team that manages $550 million on a fee basis for about 80 clients with net worths of between $10 million and $50 million.
The potential cost to the girl's quality of life was incalculable. "Fifty, 60 or 70 years of access to the best programs were about ready to evaporate as an option," says Mr. Duckworth.

Special-needs trusts are designed for severely disabled individuals who can demonstrate that they need to qualify for medical assistance, but whose income and assets exceed eligibility requirements. The terms typically allow the person to qualify for Medicaid and use the assets of the trust for all of their supplemental needs specific to their disability.
Anyone can set up a special-needs trust for a severely disabled family member. But to insert special-needs language into this girl's existing trust, her family would need to convince a judge that receiving Medicaid was critical for her quality of life.
So on Mr. Duckworth's advice, the family enlisted a lawyer who succeeded in making the case to the courts that the girl needed Medicaid in order access the best assisted-living, adult-daycare and occupational-therapy programs in her community. As part of the condition of this new language, Medicaid will keep a running tab on the girl's use of Medicaid over the course of her lifetime. When she dies, the trust must pay back the cost of those benefits to the government.

Monday, November 5, 2012

The Autism Channel

Previous posts have discussed portrayals of autism in the mass mediaIn Orlando, The Sun-Sentinel reports on The Autism Channel:
The comedic commentator has Asperger's. So does the talk show host. The daily news segment spotlights developments in the world of autism. And the families at the heart of the "At Home" reality show? All have kids with an autism spectrum disorder.
This is The Autism Channel, beamed from South Florida and offering news, entertainment, expert advice and real-world analysis, aimed at a unique audience: families living with autism.
Produced by Flying Pig Ranch Studios in West Palm Beach, the free programming is available 24 hours a day through a Roku video-streaming box connected to your television, and its creators say it's coming soon to smart TVs and Blu-ray devices.
"It can be informative, it can be entertaining, it can be a just a little bit of empathy to say, 'Hey, this is what we're going through. You're not alone,'" said Daniel Heinlein, an articulate Chicago-area 25-year-old with Asperger's and host of the channel's flagship show, "I Am Autistic."
Many of those featured hail from South Florida — including hosts like Coconut Creek pediatrician Dr. Judith Aronson-Ramos and comedian/singer Michael Garvin of Boca Raton, and guests like the Palm Beach School for Autism.
But since autism has no borders, all the programming is intended for a global audience, to help guide families through the joys, struggles, challenges and possibilities that come with an autism diagnosis, those involved say.
All you need is a Roku box (available from $49 and up) to choose from a menu of about 10 taped Autism Channel programs and watch them any time you choose.