Autism and Intelligence

Rose Eveleth writes at Scientific American:

Researchers have long considered the majority of those affected by autism to be mentally retarded. Although the numbers cited vary, they generally fall between 70 to 80 percent of the affected population. But when Meredyth Edelson, a researcher at Willamette University, went looking for the source of those statistics, she was surprised that she could not find anything conclusive. Many of the conclusions were based on intelligence tests that tend to overestimate disability in autistic people. "Our knowledge is based on pretty bad data," she says.

This hidden potential was recently acknowledged by Laurent Mottron, a psychologist at the University of Montreal. In an article in the November 3 issue of Nature, he recounts his own experience working with high-functioning autistic people in his lab, which showed him the power of the autistic brain rather than its limitations. Mottron concludes that perhaps autism is not really a disease at all—that it is perhaps just a different way of looking at the world that should be celebrated rather than viewed as pathology.

See Edelson article here.

See 2008 Wired article here.

Autism Mom Runs for Senate

Elizabeth Emken, who ran unsuccessfully for Congress in 2010, is seeking the Republican nomination to face California Senator Dianne Feinstein. Torey van Oot writes in The Sacramento Bee:

With less than a year to go until the November 2012 election, a GOP challenger to Democratic U.S. Sen. Dianne Feinstein has emerged.

Elizabeth Emken, a longtime advocate for children with autism and 2010 congressional candidate, has decided to run against the incumbent Democrat next year, announcing her candidacy on her campaign website and the conservative blog Flashreport.org.

"She's definitely in and we're putting together the campaign now," campaign consultant Tim Clark said in an interview Monday.

Emken, 48, most recently served as vice president of governmental relations for Autism Speaks, a national nonprofit organization that bills itself as the cause's largest U.S. advocacy group. The Danville Republican, whose 19-year-old son is autistic, previously worked as a legislative consultant and board member for Cure Autism Now, another nonprofit advocacy group that merged with Autism Speaks in 2007. Clark said she also worked in what he called an "efficiency manager" role for IBM Corporation.

At The Flash Report, Jon Fleischman adds some detail:

One unique aspect to Elizabeth’s is her life’s passion — which is about helping children with disabilities such as autism. She and her husband of 25 years, Craig, make their home in Danville, California, where they are raising their 2 daughters and 19 year old son, Alex, who has autism. Like most families of children with autism, Elizabeth found the lack of available information and research frustrating. Most who have studied autism believe that some sort of environmental “trigger” was the catalyst for the current spike in autism in the United States. For over a decade, Elizabeth has fought to bring a greater awareness and commitment to identifying the causes of autism. During that time, she has made some impressive gains for autism research and advocacy, including securing, for the first time ever, placement of autism as a Presidential campaign issue. In 2008, both major political parties included autism solutions in their national convention platforms and presidential debates.

She also conceived and created the www.AutismVotes.org website which now boasts over 100,000 qualified registrants, and is a central advocacy portal for information, media, legislation tracking and action alerts. Autism Speaks’ Facebook page has over 1 million followers.

In the 2010 primary campaign, David Harmer used her activism against her, calling her a "former Washington, D.C., lobbyist who spent much of her career fighting for government health care mandates and government health care funding.” She finished fourth, with just under 17 percent of the primary vote.

ABA in Saskatchewan

The StarPhoenix carries a story about Canadian autism families finding a roadblock to ABA funding in Saskatchewan:

Linda Restau, director of continuing care and rehabilitation with the Saskatchewan health ministry, says no evidence has been presented stating ABA is actually the best kind of therapy. Instead, she says, treatment in this province uses a variety of techniques - including some parts of ABA.

"We have the Canadian Agency of Drug and Technology provide unbiased evidence to us to support decision making in all areas of health care, and their research concluded that there isn't sufficient evidence for the superiority of any particular evidence-support intervention strategy," she says.

The problem, say Lisa and the Tetlocks, is that evidence actually does support the use of ABA and, if it wasn't an accepted standard of care for autistic children, other provinces and states in the U.S. would not have embraced it the way they have.

In British Columbia, for instance, there is $22,000 available per year for each child under six, and $6,000 per year for ages six to 18.

In Ontario, ABA is offered to children and youth up to their 18th birthday, depending on their level of need. In Alberta, the Family Support for Children with Disabilities program provides funding which can be used for ABA or other therapies. Funding ranges between families depending on their assessed need and what supports and resources they may already have available to them. Manitoba also has a comprehensive program, offering training for new practitioners and three streams of ABA support for children with autism, as well as other supports such as respite or home tutoring support.

Disabled Adults in New Jersey

The Record has a series on the care of disabled adults in New Jersey.

Today's report focuses on the state's reliance on big institutions instead of community care.

There’s a lot of evidence backing up that assessment:

• Nearly 8,000 disabled adults are on a waiting list for services ranging from training to group homes; they live at home, often cared for by aged parents.
• It costs on average $100,000 more a year to care for someone at a developmental center than it does to care for people with the same level of disability in the community, the state estimates.
• New Jersey’s rate of institutionalization is higher than all but two other states: Mississippi and Arkansas. Nearly one in five of the more than 14,000 individuals who are provided with residences live in large state institutions.
• The Division of Developmental Disabilities spends just about a third of its $1.5 billion operating budget on those institutions, even though they are home to just 6 percent of disabled adults in New Jersey. Only Texas, Mississippi and Louisiana spend a smaller share of their disability services budgets on community programs.

...

The state has perhaps a more fundamental reason to expand its community services: In 1999, the U.S. Supreme Court ruled that the federal Americans With Disabilities Act requires states to provide the disabled with the most appropriate services possible in the least restrictive setting. Disability Rights New Jersey, a Trenton advocacy group, has filed two federal lawsuits against the state, arguing that both the waiting list and the large number of disabled individuals still institutionalized violate the Supreme Court ruling.

...

Caring for more of the disabled in the community would almost unquestionably reduce costs for the Division of Developmental Disabilities. But some question how much savings will actually be realized.

One researcher who analyzed a series of national studies [the 2003 literature review is here] on the costs of serving the developmentally disabled pointed out that a community system just shifts some expenses from one arm of government to another.

Instead of seeing a doctor who’s on the institution’s staff, for example, clients will go to physicians in the community.

“You’re just flopping the cost over to Medicaid,” noted Kevin Walsh, director of quality and management at the Developmental Disabilities Health Alliance in Gloucester.

But there is one area of real savings for the state, Walsh noted: Direct-care workers in the community are paid significantly lower salaries and pensions than their unionized counterparts at the state developmental centers.

Restraint in New Mexico

The Albuquerque Journal reports:

When an Albuquerque Public Schools police officer used handcuffs to restrain a 7-year-old boy with autism, Superintendent Winston Brooks condemned her actions and Bernalillo County Sheriff Dan Houston revoked her law enforcement commission.

Brooks made it clear to APS staff that “absolutely under no circumstances” would it be OK to handcuff an elementary school student.

...

APS policies also emphasize prevention, and both state and district policies say restraint should be used as a last resort – when students are in danger of hurting themselves or others.

Only people certified in de-escalation techniques can physically restrain a student, under state policy. When a child does need to be restrained, proper techniques may involve as many as two adults immobilizing the child’s arms, legs and head. Staff members are taught never to sit on a child or to hold him or her face down on the ground.

Liz Thomson, who is past president of the New Mexico Autism Society and whose son has autism, said the training is a good start, but parents would like to see training specific to autism. While students with autism are not the only ones who act out, she said they have particular needs that can be counterintuitive.

“Many of the things teachers do that they think are good will exacerbate the situation,” Thomson said. “Holding (students) still or touching them can escalate rather than calm them down.”

While children with autism may be in classes with other special education students, they are often integrated into regular classrooms, depending on how well they function.

Thomson said teachers without specific knowledge of autism might try to reason with an autistic child, when verbal stimulation will actually just amp the child up further. She said often – but not always – the best solution is to back away and reduce stimuli until a student calms down.

“It has to be looked at through the autism lens,” Thomson said. “What might be comforting to a neurotypical child might be painful to a child with autism.”

ASAN Anniversary

Jean Winegardner writes at The Washington Times:

Last week, Ari Ne'eman stood at a dais in front of a room full of people celebrating the five-year anniversary of the Autistic Self Advocacy Network (ASAN), an organization he co-founded shortly after he graduated from high school.

"Then, the national conversation on autism was very different than it is today," he said. He and co-founder Scott Robertson were driven to start ASAN, Ne'eman said, because, "Good intentions and love were not enough. You cannot help people through pity and fear." Indeed, ASAN, with its slogan, "Nothing about us, without us" has helped bring the concept of neurodiversity and awareness of autistic adults to the autism community, although not always without controversy.

Attendee Chad Carson, who is a staffer at the American Association of People with Disabilities, one of the celebration's sponsors, says that as an autistic person, he wanted to attend to see how far the organization has come. "It's definitely something that's needed," he said. "With all the attitudes in regards to autism, they are pity-based."

A PSA from at ASAN's YouTube channel:

Teacher Training in California

Courtney Vaughn writes in the Hi-Desert Star:

A spike in the number of students diagnosed with autism is prompting changes in California schools. New requirements of special education teachers are sending some educators back to school.

In 2009, the California Commission on Teacher Credentialing added an autism spectrum disorder authorization, meaning teachers who are credentialed to instruct students with mild to moderate disabilities must now undergo additional training before teaching autistic students. The added credential authorizations address a variety of disabilities aside from autism, like orthapedic impairement, emotional disturbance, traumatic brain injury and other conditions.

Teachers with credentials for moderate to severe disabilities were not asked to complete additional training.

While autism advocacy groups applaud the measure, some teachers say the added requirement is burdensome.

“It is very unmanagable; we do two jobs, but they’ve taken away our time, and now they’ve given me another class to teach and required me to go back to college,” Cora Heiser, a Twentynine Palms High School special education teacher, said Monday. “I’m gaining absolutely nothing from this except for keeping my same job.”

Autism Speaks for the ABLE Act

Autism Votes, a project of Autism Speaks, is supporting the ABLE Act.

As we celebrate Thanksgiving, have your United States Senators and House Representative signed on yet to co-sponsor the Achieving a Better Life Experience (ABLE) Act of 2011 creating tax-free savings accounts for Americans with disabilities, including autism? Thank those who have. Tell those who have yet to become co-sponsors how thankful you will be when they do sign on. The ABLE Act would enable contributions to tax-free savings accounts, similar to 529 funds for college savings, for people with autism and other disabilities. The ABLE Act was introduced with bi-partisan support in the House as HR.3423 and in the Senate as S.1872. It would amend Section 529 of the Internal Revenue Service Code to allow individuals with disabilities and their families to deposit earnings in tax-exempt savings accounts. The funds could be used to pay for qualified expenses, including education, housing and transportation, and would supplement, not replace, benefits provided through private insurance, employment or public programs. In addition to Autism Speaks, the bill has been endorsed by the National Down Syndrome Society, The Arc, Collaborations to Promote Self Determination, the National Disability Institute and The National Fragile X Foundation.

Click here for more information on contacting lawmakers

Special Education Costs

The Virginia Gazette reports on special education in the Williamsburg-James City County (Virginia) schools :

Among routine bills approved by the WJC School Board recently, one stood out: $63,500. That’s what it cost to send one local student to a special school for autism.

That’s high, but necessary for students with special needs. David Gaston, senior director for specialized educational services for WJC, explained the process.

Certain students with disabilities are eligible for special ed services under federal law. Their placement in school is determined by an IEP team, for Individualized Educational Program. Gaston said, “The team develops a program that will educate each student in the least-restrictive environment.”

IEPs have grown exponentially over the years to the point that some critics deride them as a crutch for parents. Today, 1 in every 7 students has such a plan in WJC — 1,529.

Some IEPs are easy: a student who needs to sit up front to better hear the teacher, or special considerations to ensure that school work is done.

Others are subtle, such as allowing a student to take exams orally as opposed to written. Other IEPs help the extremely disabled with a full-time nurse at school.

Still others leave the campus.

See an earlier post on special education finance.

Disabilities and the Supercommittee Failure

From Autism Speaks:

Autism Speaks is a member of the Consortium for Citizens with Disabilities, which released the following statement on the deadlock of the Super Committee from Donna Meltzer, CCD Board Chair:

The Consortium for Citizens with Disabilities (CCD), a coalition of approximately 100 national disability organizations, shares its disappointment today that the Joint Select Committee on Deficit Reduction has failed to come up with a deficit reduction package that addresses the nation’s debt in a manner that is balanced and fair. While the CCD is very pleased that members of the Super Committee worked to protect entitlement programs that are critically necessary for people with disabilities such as Medicaid and Social Security, the failure to complete a comprehensive package leaves consortium member organizations very concerned about how sequestration will impact the nation’s 54 million Americans who live with disabilities and their families.

CCD knows that people with disabilities and their families depend on a safety net of programs that include both entitlement and discretionary spending. Because the Committee was unable to enact a thoughtful, balanced and collaboratively developed deficit reduction package, we now face devastating mandatory cuts to many critical programs serving people with disabilities in sequestration. The nation’s budget cannot be balanced on the backs of those with disabilities and chronic health conditions.

Colorado Mandate Falls Short

Katie Kerwin McCrimmon writes at Solutions:

Jacoby Peel turned 3 on Sunday and no longer qualifies for therapy to help him learn to communicate and cope with autism.

His birthday was a celebration, but for his family, it also felt like falling off a cliff.

Until now, Jacoby qualified for intensive therapy through a Denver County early intervention program. Now that he’s 3, the family is on their own to pay for his therapy and eventually find care through the public school system.

“It’s scary,” said Jacoby’s mom, Jordan Peel.

...

Colorado passed an insurance reform law in 2009 and is one of 29 states that now require insurance companies to cover “evidence-based, medically necessary autism therapies.”

Despite that law, Peel’s insurance carrier, UnitedHealthcare, has deemed Jacoby’s therapy to be “experimental” and won’t pay for it. That leaves the Peels on their own.

“I’ve met parents in my position who feel the exact same way. You have a limited window of time in which therapy is most effective. Between the ages of 2 and 5, you can make the biggest impact. You want to do everything you can. I’ve known children who have done really, really well,” Peel said.

Peel testified last week at a public hearing called by the U.S. Department of Health and Human Services. Officials there are in the process of defining what health benefits are deemed “essential” under the Affordable Care Act. Peel was one of several autism advocates who pleaded with federal officials to invest in speech, occupational and behavioral therapy for young children with autism. The advocates are convinced that early intervention can dramatically improve the outlook for children with autism.

“Why should a child who is born with something have less coverage than someone who gets in an accident? There’s so much research that shows that intensive therapies can help children with autism,” Peel said.

“In the end, it will be so much less expensive for the system if kids can get in there and get coverage while they’re young…versus not being able to live independently some day. This is in everyone’s best interest,” Peel said.

Autism, Schools, and Lawsuits

The Individuals with Disabilities Education Act has resulted in a great deal of legal action over the years. At Education Week, Nirvi Shah reports:

As the number of children diagnosed with autism has increased over the last few years, new research finds these students are disproportionately involved in lawsuits about whether they are getting a free appropriate public education in the least restrictive setting as required by federal law.

A new study by Lehigh University education and law professor Perry A. Zirkel, recently published in the Journal of Special Education Leadership explores this issue.

Professor Zirkel found that children with autism were involved in nearly a third of a comprehensive sample of published court decisions concerning the basic tenets of federal special education law. He also found that when comparing this litigation percentage with the percentage of students with autism from 1993 to 2006, the ratio was approximately 10 to 1. In other words, Zirkel writes, "special education court cases are over 10 times more likely to concern a child with autism than the proportion of these children in the special education population."

Does that mean children with autism are more often being denied services they're entitled to compared with other children with disabilities? Not necessarily, though it's hard to say for sure.

Professor Zirkel's report says advocacy groups may be part of the reason behind the high number of cases involving children with autism. "As a result of the disparity between interest groups' prescriptions and school districts' prevailing practices, with the underlying mutual motives of high costs and methodological controversy, it is not surprising that the parents of children with autism would be more prone to litigation than the parents of children with other disabilities."

Screening of the Young and Old

In The Journal of Autism and Developmental Disorders, Gudrun Nygren et al report:

Autism Spectrum Disorder (ASD) is more common than previously believed. ASD is increasingly diagnosed at very young ages. We report estimated ASD prevalence rates from a population study of 2-year-old children conducted in 2010 in Gothenburg, Sweden. Screening for ASD had been introduced at all child health centers at child age 21/2 years. All children with suspected ASD were referred for evaluation to one center, serving the whole city of Gothenburg. The prevalence for all 2-year-olds referred in 2010 and diagnosed with ASD was 0.80%. Corresponding rates for 2-year-olds referred to the center in 2000 and 2005 (when no population screening occurred) were 0.18 and 0.04%. Results suggest that early screening contributes to a large increase in diagnosed ASD cases.

In The Journal of the American Geriatrics Society, Joseph Piven and Peter Rabins write:

Autism spectrum disorders (ASDs) are among the most common of the severe developmental disabilities, yet little is known about older adults with ASDs—in particular, how the disabilities and dependencies that result from aging interact with those resulting from ASDs. The aging of the population in Western countries, the increasing rate of diagnosis of ASDs, and the burgeoning use of services for ASDs are converging to create a large, growing influx of older adults with ASDs that could impose tremendous humanistic and economic burdens on the healthcare system and society. An understanding of the epidemiological, biological, psychological, and social aspects of ASDs in older adults is essential for preparing to meet their needs, but studies on ASDs in these individuals are practically nonexistent. This article outlines observations and recommendations of a multidisciplinary expert group convened in March 2010 to characterize gaps in knowledge regarding ASDs in older adults and defines research directions to help individuals, the healthcare system, and society prepare for meeting the needs of this population. The proposed research agenda could help improve the lives of older adults with ASDs and inform research and clinical practice involving younger individuals with ASDs.

Among their recommendations:

• Develop diagnostic criteria and instruments for diagnosis and assessment of the needs of older adults with ASDs. Current diagnostic practice relies on early life history, which is less likely to be available in older adults suspected of having an ASD. Diagnostic criteria will therefore need to take into account adult manifestations of autistic symptoms and the specificity of adult symptom profiles for the diagnosis of an ASD. The development of reliable and valid diagnostic and assessment tools is a prerequisite for conducting descriptive studies of individual and convenience samples and epidemiological population-based samples (#2 and #3 below). Based on recent findings suggesting stable rates of ASD across the life span, it seems likely that there exists a large population of older adults with ASD who have not been identified. No instruments are currently available to geriatricians for screening or diagnosis of this population.
• Conduct cross-sectional descriptive studies in adults of phenomenology, including current symptoms and behaviors, neuropsychiatric features, associated medical conditions, and descriptions of available service and support networks. These studies will be critical in elucidating the magnitude and specificity of problems and suggest potential interventions at individual (e.g., specific behavioral or medical strategies, the importance of screening for selected conditions) and societal (e.g., new approaches to vocational training, development of skilled long term care facilities) levels.

Autism, Popular Culture, and Stereotypes

In a blog about autism politics, it is important to keep an eye on popular culture, which influences public perceptions. Books, television shows and movies can raise awareness but they can also spread misinformation and stereotypes.

At The Huffington Post, Greg Olear writes about Mark Haddon's The Curious Incident of the Dog in the Night-time and Rain Main:

Although there are those on the autistic spectrum who found Haddon's portrayal of Asperger's on base -- William Schofield, then a student at a London college for aspies, wrote in The Guardian that "the similarities are very convincing between Chris and me especially, in my opinion" -- it is telling that many of Curious Incident's 73 one-star Amazon reviews (there are a staggering 1,720 reviews in all, most fours and fives) were submitted by aspies. Here's a smattering:

"Stereotyped, inaccurate, horribly offensive... this isn't how it is." "Haddon does not understand Asperger." "Stereotypical view of an autistic child." "I find it hard to believe that Mark Haddon is an autism expert, because Christopher Boone isn't like any other child with Asperger's that I've ever met." "A major disservice to the Autistic Community." "An excellent portrayal of autism...NOT!"

The aspie reviewers, as it happens, were onto something. Haddon, by his own admission, is clueless about Asperger's. "I know very little about the subject," he confessed on his website, in an blog posted on July 16, 2009. "I did no research for Curious Incident... I'd read Oliver Sacks's essay about Temple Grandin and a handful of newspaper and magazine articles about, or by, people with Asperger's and autism. I deliberately didn't add to this list."

As for Rain Man, savant skills, and Kim Peek:

The character of Raymond Babbitt is based on Kim Peek, a man capable of astounding feats of mathematics and memory. Posthumously diagnosed with Opitz-Kaveggia syndrome, Peek had no corpus callosum connecting the two halves of his brain.

In the film, Babbitt is called an autistic savant...but the real Kim Peek was not autistic. Nevertheless, Rain Man became the popular culture's introduction to autism.

Thirty years later, the belief persists that autistics can reliably count a pile of toothpicks at a glance. This is a powerful negative stereotype that autistic children (and their parents) must overcome.

Help from HUD

A release from the US Department of Housing and Urban Development:

Thousands more very low-income senior citizens and persons with disabilities will have access to affordable supportive housing thanks to $749 million in housing assistance announced today by the U.S. Department of Housing and Urban Development (HUD). These grants will help non-profit organizations produce accessible housing, offer rental assistance, and facilitate supportive services for the elderly and persons with disabilities.

The grant funding awarded under HUD’s Sections 202 and 811 Supportive Housing programs will kick start construction or major rehabilitation on more than 189 housing developments in 42 different states and Puerto Rico. When complete, more than 4,800 elderly households and persons with disabilities will be affordably housed with access to needed services. Read a detailed summary of each grant.

...

Section 811 Capital Advances will provide $137 million nationwide to assist very low-income persons with disabilities through 92 projects in 34 states. An additional $12.6 million will be available for project rental assistance contracts (see attached funding chart). Most of the housing supported through the Section 811 Program will be newly constructed, typically small apartment buildings, group homes for three to four persons, or condominium units that are integrated into the larger community. Residents will pay 30 percent of their adjusted income for rent and the federal government will pay the rest.

HUD’s Section 811 program provides housing for households with one or more very low-income individuals with a disability. Under this program at least one person must be 18 years or older and have a physical or developmental disability or chronic mental illness. The program provides persons with disabilities the opportunity to live independently in their communities by increasing the supply of rental housing with the availability of supportive services.

The Transition Took Kit from Autism Speaks discusses Section 811.

School-Age Disability Data from the Census

The Census Bureau has a new report on school-aged Americans with disabilities. (The report does not break out separate data for autism.)

This brief, based on 2010 American Community Survey estimates, examines disability type, school enrollment and geographic distribution for school-age children in the United States. The brief compares disability rates of children among states and metropolitan vs. nonmetropolitan areas.

Highlights:

• Of the 53.9 million school-age children 5 to 17, about 2.8 million were reported as having a disability in 2010.
• Across the states, the percentage of metro area children with disabilities who were enrolled in public schools ranged from 76.5 percent to nearly 100 percent.
• Florida, Hawaii, Illinois, Louisiana, Maryland, Ohio and the District of Columbia had public school enrollment rates for children with a disability that was less than the national estimate, while Arkansas, California, Connecticut, Kansas, Minnesota, Montana, North Dakota, Oklahoma, Rhode Island, Texas, Virginia and Wyoming had enrollment rates above the national estimate.
• Rates of disability among school-age children for metropolitan statistical areas ranged from 1.2 to 13.0 percent, while the disability rates for those enrolled in public schools ranged from 1.4 percent to 14.6 percent.
• About 89.4 percent of school-age children with a disability living in metro areas were enrolled in public schools, 7.3 percent were enrolled in private schools and 3.3 percent were not enrolled in school.

Internet address: <http://www.census.gov/prod/2011pubs/acsbr10-12.pdf>.

Vaccine Controversy on Delta Airlines

The issue of vaccination continues to make the news. Amina Khan writes at The Los Angeles Times:

The vaccine wars have moved to higher ground: the cabins of Delta airplanes.

A leading group of pediatricians has warned Delta Air Lines that an ad being aired on some of its flights is "putting the lives of children at risk, leaving them unprotected from vaccine-preventable diseases."

The ad, sponsored by the National Vaccine Information Center, focuses on such preventive measures as handwashing and tells viewers to question "vaccines your doctor may recommend" -- with some serious emphasis on the "may." Never mind that federal guidelines do recommend a host of vaccines for children -- including influenza -- within months of being born.

In a letter to Delta's chief executive, the president of the American Academy of Pediatrics wrote, "While hand washing and covering sneezes are parts of a larger strategy to prevent the spread of influenza, influenza vaccine continues to be the best way to protect against the disease."

...

As for those who resist vaccinations because of autism fears,another Health article points out: "The link between autism and vaccines — famously put forth in a 1998 article by Dr. Andrew Wakefield in the British medical journal Lancet that was later found to be fraudulent — has been debunked by a variety of medical studies."

"Why would you delay vaccines?" said Dr. Paul Offit, director of the Vaccine Education Center at Children's Hospital of Philadelphia. "You have diseases like pneumococcus,whooping cough, Hib and chickenpox which can severely, and fatally, infect young children. Why would you ever take the chance?"

The Age of Autism is carrying a response:

NVIC co-founder and president Barbara Loe Fisher responded, “Without cause, the AAP has used their considerable financial resources and political influence to intimidate Delta for simply showing a video that offers accurate information about ways to stay healthy during the flu season, including talking with doctors about getting a flu shot. Censorship and attacks on consumer advocacy groups working to institute informed consent protections in public health policies should not be tolerated in this or any society that cherishes free speech and the right to self determination.”

Transitions

The Naperville Sun reports on Ryan Wall, an 18-year-old with ASD facing the transition to adulthood:

However, Jama Wall said finding programs for him has not been easy, and even fewer opportunities exist for older individuals with autism.

To figure out the next steps, she turned to the “Transition Tool Kit” provided by advocacy group Autism Speaks. Launched in February, the tool kit address issues such as housing, post-secondary education, employment, legal matters and public benefits.

Liz Klug, executive director of the Chicagoland Chapter of Autism Speaks, said there is no consistent solution yet for families like the Walls.

“Once a person ages out of the public school system it’s a matter of then finding opportunities for that person to live a dignified life, earn a wage, enjoy life, live a life that’s safe, live in a community,” Klug said. “By and large every family’s blazing their own trail.”

Jama Wall first connected with Autism Speaks in 2004 by participating in the organization’s annual walk. Her family formed a team called “Ryan’s Hope.” The team has grown to include 50 to 60 people, she said, and last year raised about $9,000 for Autism Speaks.

At The San Francisco Chronicle, Laura Shumaker reports on an employment initiative:

You know how there are some people who say ” Somebody should do X” and there are other people who say, “Let’s do X. Here’s how.”?

Attorney Michael Bernick of San Francisco is in the “Here’s how.” category.He’s the former head of the California Employment Development Department (and and all around great guy), and will lead a brainstorming session on developing employment opportunities (jobs!) for adults on the autism spectrum at the AASCEND meeting this coming Saturday, November 19.

The brainstorming session continues the dialogue from AASCEND’S wildly successful and inspiringSUCCESS ON THE SPECTRUM conference last month.You are invited to bring your best ideas, positive energy, contacts, and friends who could help. I will be there and look forward to meeting you!

WHEN: November 19 10:00-noonWHERE : The downtown campus of City College of SF, Mission St and 4th St, Room 618

Dogs in a Michigan School

WEYI-TV in Clio, Michigan, reports on the use of therapy dogs in the classroom:

ABLE Act

A release from Rep. Ander Crenshaw:

Congressman Ander Crenshaw (R-FL) led a bipartisan, bicameral group of Members of Congress and officials from disability advocacy groups in outlining the ABLE Act at a Capitol Hill news conference on Tuesday afternoon (11/15). The legislation, to create tax free-savings accounts for individuals with disabilities, was introduced in the House Tuesday afternoon and was expected to be introduced in the Senate later Tuesday afternoon.

Crenshaw, Congressman Cathy McMorris Rodgers (R-WA), Congressman Chris Van Hollen (D-MD), Congressman Pete Sesssions (R-TX), Senator Robert Casey, Jr., (D-Pa), Peter V. Berns, CEO of The Arc, Peter Bell, Executive Vice President for programs and services for Autism Speaks, Sara Wolff, Member of National Down Syndrome Society Board of Directors, and officials from other disability advocacy groups spoke at the House Triangle press conference where a large group of supporters had gathered. Twenty-eight Members of the House and two Members of the Senate have to date signed on as original co-sponsors.

“Our tax code currently provides advantages to help Americans save for college and retirement, yet people with disabilities do not enjoy those same financial planning tools. These individuals and their families face enormous financial struggles that most of us cannot imagine,” said Crenshaw, a member of the House Appropriation Committee. “The ABLE Act helps ease those strains by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. No longer would individuals with disabilities have to stand aside and watch others use IRS-sanctioned tools to lay the groundwork for a brighter future. They would be able to as well, and that’s an accomplishment we all can be proud of.”

In July of last year, Rep. Crenshaw spoke of the idea:

An Insurance Catch-22 in Illinois

Yuji Fukunaga writes at The Highland Park Patch:

In Illinois, a law was enacted about three years ago that requires health insurance companies to provide coverage for the treatment of autism spectrum disorders, and specifically includes coverage for speech therapy.

When the law was passed, it gave hope to many families that insurance would cover more of the therapy that so many of our kids need. But it has not worked out that way for us.

And that is because my son’s insurance plan is exempt from this state law.

My wife and I do not have access to a group insurance plan. So we are on our own when it comes to health insurance. And with our son’s autism diagnosis, no insurance company would accept coverage for him.

That meant that we had to take coverage through the Illinois Comprehensive Insurance Plan (ICHIP), a program partially funded by the state that is intended for people whose pre-existing conditions prevent them from getting any other insurance. ICHIP is not welfare or a charity; I’d wager that the premiums charged for Kai are much higher than what most of you pay for your kids’ insurance.

Yet those covered under ICHIP are not protected by the Illinois Autism Insurance Law.

Does that make sense? Kai can’t get insurance through normal channels because of his autism. But because of that, he doesn’t qualify for protection under a law designed to help those with autism. Sounds like the worst kind of Catch-22 to me.

A Pioneer in Developmental Behavioral Pediatrics

At the Raleigh News-Observer, Elizabeth Shestak remembers a pediatric pioneer who recently passed away at the age of 70.

Thanks to the work of Dr. Sudesh Kataria, children who struggled with academics, taking direction or both have gone on to be doctors, lawyers and engineers.

Kataria was on the forefront of establishing a subspecialty in medicine called development behavior pediatrics - an area of study that focuses on how conditions such as autism and attention deficit disorder are diagnosed and treated.

...
Early in her career, Sudesh Kataria's interest was met with skepticism by her colleagues. Her husband, Dr. Yash Kataria, a pulmonologist, said she was told it was a "voodoo" science and not worth establishing a career around.

"I remember her having to convince people there was this developmental pediatrics area," her daughter said.

She had the chance to study with world-renowned cardiologists, "but that didn't inspire her," Yash Kataria said.

She persisted, studying children with then-undiagnosed learning disabilities and a host of other amorphous medical conditions that would not necessarily respond to prescriptions, but often required a lot more than just patience from parents.

• See a CDC page
• See the field's relationship to the Combating Autism Act (and an update here)
• See the relevant section of the American Academy of Pediatrics

Causation: Take Your Pick

One reason why there is so much debate and confusion about autism is that research on causation seems to point in multiple directions. In the past week alone, news accounts have mentioned findings on air pollution, brain overgrowth, antidepressants, and low birth weight.

From The Wall Street Journal:

"The evidence is growing that air pollution can affect the brain," says medical epidemiologist Heather Volk at USC's Keck School of Medicine. "We may be starting to realize the effects are broader than we realized."

Reviewing birth records, Dr. Volk and her colleagues calculated that children born to mothers living within 1,000 feet of a major road or freeway in Los Angeles, San Francisco or Sacramento were twice as likely to have autism, independent of gender, ethnicity and education level, as well as maternal age, exposure to tobacco smoke or other factors. The findings were published this year in the journal Environmental Health Perspectives.

"Based on our data, it looks like air pollution might be a risk factor for autism," Dr. Volk says. Still, there are so many possible genetic and environmental influences that "it is too soon for alarm," she says.

From AFP:

A post-mortem analysis of half a dozen autistic boys showed that their brains were heavier and contained many more neurons than counterparts without the disorder, US researchers said Tuesday.

The study, while small, suggests that brain overgrowth may be occurring in the womb, according to the findings published in the November 9 issue of the Journal of the American Medical Association.

From Cox Newspapers:

As scientists strive to find what's behind a spike in autism, especially in boys, a new study has raised the possibility that antidepressants taken by their mothers may be a culprit, a finding that has set off concern for women and their doctors.

Rodents exposed to the antidepressant Celexa displayed autismlike changes in their brain structure and their pups' behavior, especially the males, according to the study, published last month in Proceedings of the National Academies of Sciences.

Celexa is a commonly prescribed antidepressant in a class that includes Lexapro, Zoloft and Prozac.

Another study, published in July in Archives of General Psychiatry, found that autistic children were twice as likely as other children to have been exposed to antidepressants before birth. First-trimester exposure created nearly four times the risk.

From The Washington Post:

THE QUESTION Might the tiniest of newborns face a bigger chance of developing autism?

THIS STUDY involved 623 children who were born in the mid-1980s weighing 4.4 pounds or less. Their health was assessed periodically, including screening for autism spectrum disorders at age 16 and evaluations to confirm the diagnosis, using standardized measures, at age 21. Overall, 5 percent of the youths had autism spectrum disorder diagnoses, a rate described as five times that found in the general U.S. population. The lower the birth weight, the higher the likelihood of an autism diagnosis, with a 10.6 percent prevalence among those who weighed 3.3 pounds at birth and a 3.7 percent prevalence at 4.4 pounds.

Autism, Passion, and Politics

Why is the field of autism so political and contentious? A few months ago, David H. Skuse wrote in a review essay in Brain:

A couple of years ago, I was asked about autism by a journalist from the New York Times. The reporter had been travelling the world, discussing the subject with many people who had contributed to our understanding of this fascinating and complex disorder. Why, she asked, was it that this subject aroused such passions? Never before had she come across a group of scientists who criticized each other quite so much as those working in the field of autism. She was astonished, dismayed and perplexed in equal measures.

...

The origins of the term autism are therefore mired in controversy,with some claiming that Kanner plagiarized Asperger’s work. Certainly, he was better known in English-speaking countries for years before the latter’s papers were translated. The term ‘Asperger syndrome’ has since acquired a connotation that is far-removed from what Asperger himself described. It has become a sort of ‘autism for the middle classes’ and is about to be consigned to history. In the 5th revision of the American Psychiatric Association’s Diagnostic and Statistical Manual, the eponym will be abolished. Lorna Wing, who was responsible for introducing Asperger’s work to the English-speaking world (Wing, 1981), will not be sad to hear this. She has described its current usage as a ‘political diagnosis’ (personal communication).

...

Virtually all the key assumptions that were held by the earliest generation of autism researchers, of whom many were interviewed for this book, are now being questioned. No wonder there is tension in the autism community. First, there is no qualitatively distinct symptom complex associated with autism that is not found in other children who lack any serious neurodevelopmental impairment (Happé et al., 2006). Second, there is no strong association with generalized learning difficulties; the proportion of identified cases with autism and low IQ is falling steadily (Baron-Cohen et al., 2009). Third, there is no inevitable delay in the onset of language, and the criterion will be dropped from the revised diagnostic framework currently being considered (DSM-5 Neurodevelopmental Disorders Working Party, 2011). Finally, comorbidity appears to be the rule rather than the exception, and it has become inevitable that separate diagnostic recording of other disorders such as attention-deficit hyperactivity disorder is introduced, because it makes clinical sense.

NASCAR and Autism Awareness

A NASCAR champion does a PSA for Autism Speaks:

A Scandal in New York

New York State's services to people with developmental disabilities have become a major scandal. Danny Hakim writes in The New York Times:

For years, New York State has assured its employees who care for the developmentally disabled that there was a way they could confidentially report any concerns they had about the treatment of those in their care.

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And for years the state has been routinely breaking its promise.

The Office for People With Developmental Disabilities, the state agency that oversees thousands of group homes, has long employed a small number of ombudsmen around the state who, by law, are instructed to “receive and keep confidential any complaint” from parents, advocates and anyone else, including state employees.

The state advertises to its own employees that they can be assured their reports to ombudsmen are kept confidential. The promises appear in pamphlets, posters and even on refrigerator magnets, like one displayed inside a group home near Albany. A call to one of the ombudsman’s voice mails also promised confidentiality, without exception.

But despite these reassuring messages, agency officials conceded that their internal policy has for years been to encourage ombudsmen to turn over the names of whistle-blower employees to agency officials when they report abuse or neglect. It is the latest example of a system that appears to be set up to discourage and even punish reporting of abuse by state employees.

A First-Hand Account of Life on the Spectrum

The Rochester Democrat and Chronicle carries a short essay by Aimee O'Connell, a licensed school psychologist who has an ASD child and a diagnosis of Asperger's. In this passage, she neatly disposes of the "Rain Man" stereotype:

Can most people name some of the strengths of individuals with autism, besides parlor tricks like counting cards or remembering dates? Although some individuals with autism do have pronounced talents, we're not always newsworthy.

We might remember phone numbers without writing them down, but don't usually memorize the phone book, nor do we find that particularly interesting.

We do have extraordinary emotional and sensory depth. We hear, feel, taste and experience life more intensely than the average person.

If you think persons with autism are logical, robotic and emotionless, it's true that we like to think before acting, but I should note that our emotional sincerity gets squelched early on as "abnormal," "foolish" or "over-dramatic." We learn to keep quiet when the rest of the world doesn't relate to our sensitivity.

Taxes and Disability

Laura Saunders writes at The Wall Street Journal:

More than six million children in the U.S. fall into the "special needs" category, and their ranks are expanding. The number of those affected by one developmental disability alone—autism—grew more than 70% between 2005 and 2010.

The tax code can help—if you know where to look.

There are numerous tax breaks for education, but the most important one for many special-needs students isn't an education break per se. Instead, it falls under the medical-expense category.

Although students with disabilities have a right to a "free and appropriate" public education by law, some families opt out and others pay for a range of supplemental therapies.

Such families can use Uncle Sam's medical-expense deduction for help coping with costs, say experts. But many parents and tax advisers overlook it.

"Parents are busy helping their children, and tax preparers often don't ask about medical expenses unless the taxpayer is old or ill," says Bernard Krooks, a New York attorney who is past president of the Special Needs Alliance, a nonprofit group with members specializing in disability law.

In fact, tax rules allow medical deductions for "diagnosis, cure, mitigation, or treatment…primarily to alleviate or prevent a physical or mental defect or illness" (IRS publication 502).

Autism, Police, and Crime

The Glendale News-Press reports on Don Short and Tamara Mark, who once had to restrain their nonverbal 10-year-old at an airport because he was acting up and was prone to self-injurious behavior. Someone called the police, who told Short to let go. Only after the child bit an officer on the knee did the police learn that he was autistic.

Short and his wife were one of four speakers who participated in the Autism Speaks’ training program aimed at providing police with a better understanding of people with autism and how to deal with them.

The organization’s Los Angeles Chapter, which funds research for autism and resources for parents, held four sessions at the Police Department for officers.

Nearly all of a group of about 20 officers who attended Tuesday’s meeting said they had responded to a call involving an autistic person.

Police are most often called to deal with a person with autism in escape and runaways incidents, said Kate Movius, project manager at Autism Speaks for the Autism Safety Program.

Law enforcement, she said, are seven times more likely to run into a person with autism than anyone else.

Movius advised officers responding to calls with an autistic person to speak slowly and assume a non-threatening stance. She also warned officers to be prepared for resistance because people with autism are often sensitive to touching.

People with autism can be crime victims, as this story from the Daily News Journal (Murfreesboro, TN) illustrates:

Three rape charges were filed against a Clarksville man accused of having sexual relations with a 14-year-old autistic girl after he picked her up outside a Rutherford County high school Oct. 28, according to a sheriff's office news release.

Suspect William Gilbert Barnett Jr., 36, was charged also with three counts of aggravated sexual battery by Detective Lisa McCallum, the release reads.

Detective Sgt. Mickey McCullough said Barnett picked up the girl when she got off the school bus about 8 a.m. the morning of Oct. 28, allegedly raped her in his truck and returned her about 4 p.m. to her bus stop after school.

The girl's form of autism "makes her gullible, naïve, innocent and willing to please others," McCullough said.

Personality Tests

Employment discrimination is a concern for ASD adults. A new item from the Autistic Self-Advocacy Network:

The Autistic Self Advocacy Network is investigating employers' use of personality tests to screen job applicants as part of applications for employment and the broader hiring process. These tests may unfairly screen out qualified Autistic applicants and those with other hidden disabilities through the use of subjective questions unrelated to job performance

If you live in the United States and have recently been turned down for a job that used personality tests as part of the application process, please contact Samantha Crane at samanthac@bazelon.org and Melody Latimer at mlatimer@autisticadvocacy.org. Please include the name of the employer, the approximate date on which you applied for the job and any additional information you feel may be relevant.

Thank you,
The Autistic Self Advocacy Network

See an EEOC fact sheet on employment procedures.

Gingrich on Brain Research

The Rick Perry gaffe has overshadowed a moment in last night's debate where Newt Gingrich stressed the need for research into neurological disorders:

Let me just say it very straight. One, you go back to a doctor-patient relationship and you involve the family in those periods where the patient by themselves can't make key decisions. But you re-localize it.

Two, as several people said, including Governor Perry, you put Medicaid back at the state level and allow the states to really experiment because it's clear we don't know what we are doing nationally.

Three, you focus very intensely on a brand-new program on brain science because the fact is the largest single out-year set of costs we are faced with are Alzheimer's, autism, Parkinson's, mental health, and things which come directly from the brain.

And I am for fixing our health rather than fixing our health bureaucracy because the iron lung is the perfect model of saving people so you don't need to pay for federal program of iron lung centers because the polio vaccine eliminated the problem.

Autism on Staten Island

The Staten Island Advance profiles an ASD youth named Nick D'Amora and his mother Barbara. The article notes the limits of New York's insurance mandate:

It doesn’t apply to the services Mrs. D’Amora is most worried about — respite and community rehabilitation for families, day or quality residential programs for autistic adults, who often do not have private insurance.

“It does nothing for the lifespan of services that people need and deserve,” she said.

And as the population of children diagnosed with autism continues to balloon, wait lists for those programs grow longer and longer for families on Staten Island. Nationally, at least 1 million people with intellectual or developmental disabilities nationwide are on waiting lists for services they may never get, according to The Arc’s 2011 Family and Individual Needs for Disability Supports (FINDS) survey.

Nick won’t be entitled to the services he gets now once he turns 21. Mrs. D’Amora has already started putting him on wait lists for adult day programs so he will have something to do each day when he is grown.

“Without these services, there’s no quality of life,” she said. “How would you like to be home with your parents your whole adult life?”

Easter Seals Report on Early Intervention

Easter Seals yesterday issued news release detailing a new report on early intervention:

Easter Seals this morning released a new report Our Nation’s Children at Risk: A State-by-State Report on Early Intervention during its 2011 International Convention currently being held in Washington, D.C. In meetings with Members of Congress on The Hill today, more than 300 Easter Seals volunteers, staff and families with disabilities will share both the report’s findings and a petition with nearly 40,000 signatures urging legislators to invest in young children.

The new report details how well each state takes care of its youngest children with disabilities and delays. The unfortunate news: infants and toddlers in nearly every state continue to fall behind, many will never catch up.

“With the right investment in treatment and therapy before the age of five, we can ensure every child in America can enter school ready to learn,” says Katy Neas, senior vice president, government relations, Easter Seals and Make the First Five Count spokesperson.

...

The Easter Seals report highlights some bright spots. States including Massachusetts, Rhode Island, New Mexico, Wyoming, New York and New Hampshire serve more than 4 percent of their population through the Part C program of IDEA. These six states reach far more children with disabilities and delays than other states, with more young children able to access the critical services and supports they need early in life.

“These states are on the right track, and should serve as an example to others, but we know it’s just the beginning. We have to convince state and federal policy makers about the value of investing in the Part C program,” adds Neas.

This is especially true in states that serve fewer than 2 percent of their population including Georgia, Alabama, Tennessee, Mississippi, Montana, Missouri, Arkansas and the District of Columbia.