Letter on Speech Therapy

In The Politics of Autism, I discuss the Individuals with Disabilities Education Act.

Michelle Diament reports at Disability Scoop:

In a letter to states, officials from the U.S. Department of Education say they’ve heard that an increasing number of kids on the spectrum may not be receiving services from speech-language pathologists at school. Moreover, such professionals are frequently left out of the evaluation process and are often not present at meetings to determine what services a child should receive under the Individuals with Disabilities Education Act, the department said. 

“Some IDEA programs may be including applied behavior analysis (ABA) therapists exclusively without including, or considering input from, speech-language pathologists and other professionals who provide different types of specific therapies that may be appropriate for children with ASD when identifying IDEA services for children with ASD,” wrote Melody Musgrove, director of the Education Department’s Office of Special Education Programs, in the guidance sent this month.

"Economic Burden"

At the Journal of Autism and Developmental Disorders, J. Paul Leigh, Juan Du have an article titled "Forecasting the Economic Burden of Autism in 2015 and 2025 in the United States."  The abstract:

Few US estimates of the economic burden of autism spectrum disorders (ASD) are available and none provide estimates for 2015 and 2025. We forecast annual direct medical, direct non-medical, and productivity costs combined will be $268 billion (range $162–$367 billion; 0.884–2.009 % of GDP) for 2015 and $461 billion (range $276–$1011 billion; 0.982–3.600 % of GDP) for 2025. These 2015 figures are on a par with recent estimates for diabetes and attention deficit and hyperactivity disorder (ADHD) and exceed the costs of stroke and hypertension. If the prevalence of ASD continues to grow as it has in recent years, ASD costs will likely far exceed those of diabetes and ADHD by 2025.

Effort to Recall Pan

In The Politics of Autism, I discuss the anti-vaccine movement.

Sharon Bernstein reports at Reuters:

The California lawmaker who made it harder for parents to opt out of vaccinating their children, a stance that earned him death threats, is now launching a campaign to save his job, days after the state certified a recall effort against him.

Democratic State Senator Richard Pan, a Sacramento pediatrician who introduced a measure eliminating California's personal beliefs exemption to vaccination requirements for schoolchildren in response to a measles outbreak at Disneyland, plans to go public on Wednesday with a website and social media campaign aimed at fighting off the recall drive, a spokeswoman said.
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The measure generated vociferous opposition from some parents, many who feared a now debunked link between childhood vaccinations and autism and others who feared intrusion on their freedom of religion.
...

Katherine Duran, who filed the recall request along with 49 others, did not immediately respond to a request for comment from Reuters. 

But she earlier told the Sacramento Bee that the effort was "about the defense of liberty." 

“The government, as a creature of the people, doesn’t have the right to tell the people what they can and can’t put into their bodies,” she told the newspaper.

More on Prevalence

In The Politics of Autism, I discuss the likelihood that the increase in autism diagnoses and educational determinations at least partially the result of increased awareness and changes in diagnostic criteria. At Education Week, Christina Samuels writes:

Using federal special education data to judge autism's true prevalence is problematic, however. Schools and districts are not staffed by medical professionals. While one district may evaluate a child as having an autism spectrum disorder, another district could see the same child, with the same set of behaviors, and come up with a different disability—or find no disability at all. 

However, those special education figures were the best we had until 2000, when the CDC started its monitoring program and attempted to bring some rigor to the diagnosis. 

... 

The time it takes to examine all this data is the reason the latest report was released last year but uses information gathered in 2010, said Jon Baio, an epidemiologist for the CDC and principal investigator for the Autism and Developmental Disabilities Monitoring Network. The next report will use data collected in 2012, he said.  

Baio agreed that relabeling could have played a role in some of the autism rate increases. But CDC data show that the fastest-growing group of children with autism are those with normal to above-average intelligence. These are children who presumably would not have been misidentified as having an intellectual disability, he said.  

"When you peel away all that has changed over time, what has changed to put children today at an increased risk of having autism? We really don't know what that may be at this point," Baio said.

Autism and Euthanasia

In The Politics of Autism, I discuss the dangers to the lives of autistic people. Alex Schadenberg writes at LifeNews:

The British Medical Journal (BMJ) will publish a “study” on July 27, 2015 examining 100 requests for euthanasia for psychiatric reasons in Belgium. Link to the early release of the study. 

Four of the six authors of the study are connected to the euthanasia clinic in Belgium.
...
The “study” examines 100 consecutive requests for euthanasia at a psychiatric out-patient clinic between October 2007 and December 2011. The analysis of the data closed in December 2012. The data states:

• 77 euthanasia requests were woman, 23 were men,
• 48 of the requests were approved and 35 died by euthanasia,
• 1 died by palliative sedation (sedation with withdrawal of water),
• the average age was 47,
• 58 were depressed, 50 had a personality disorder,
• 12 were autistic, (I have an autistic son), 13 had post traumatic stress, 11 had anxiety disorder, 10 had an eating disorder, etc

Disability Studies

Scott Jaschik writes at Inside Higher Ed:

The University of Toledo is starting the nation's first full undergraduate major in disability studies, an interdisciplinary field that already has considerable scholarly interest and graduate options.
...
The disability studies major at Toledo will be based on a 21-credit set of required courses. They include an introduction to the field, courses on disability culture and a course on the history of disability in the United States. Students will then select electives from options that include deaf studies, gender and disability, and autism and culture.

The program at Toledo will join minors at such colleges asOhio State University, Pennsylvania State University and theUniversity of California at Berkeley. Toledo will also continue to offer a minor. City University of New York offers an online bachelor's in disability studies for those who have already completed some course work elsewhere.

The creation of a full major at Toledo is "a big deal," said Lennard J. Davis, a leader in the field of disability studies and a distinguished professor at the University of Illinois at Chicago, which offers a doctorate in disability studies.

Is Genetic Information Useful?

Jessica Wright writes at SFARI:

At a conference in March, I heard one perspective from a scientist who has a son with autism. Having spent her career searching for answers, she instinctively wanted to know as much as she could about her son. In a spectacular coincidence, she learned that her son has a mutation in the same gene she had studied for years. The findings didn’t guide treatment decisions, but she said knowing the origin of her son’s autism was hugely gratifying.

Another researcher, Thomas Bourgeron, once told me about a mother who learned years after her son was diagnosed with autism that he has a mutation known to cause a severe form of the disorder. Before getting this information, she had succeeded in teaching her son to talk, which is unusual for people with this mutation. Had she known this earlier, she told Bourgeron, “I would not have fought like this. I wouldn’t have thought I could fight the genome.”

...
As with the scientist I met, parents who have a child with a risk factor were relieved to have some understanding of the disorder's origins. One parent, for example, used the result to refute a teacher who believed her son was “just arrogant.” Another regretted having looked for easy solutions in alternative treatments: “I would have never considered doing half the stuff to [the] poor [child] that we did,” she said, citing chelation treatments, purported to rid a child of toxins.

Transition Youth

A release from Michigan State University:

As autism becomes more prevalent, the need grows for services that help young people with the disorder to find and keep jobs, indicates new research led by Michigan State University education scholars.

Some 50,000 people with autism spectrum disorder turn 18 years old every year in the United States, and these “transition youth” – shifting from high school to adulthood – represent the largest group seeking vocational employment services in the growing autism population.

Yet transition youth are the least likely to get jobs, said Connie Sung, an MSU assistant professor who co-authored two studies on the subject in the Journal of Autism and Developmental Disorders.

“More focus should be put on the transition population with autism spectrum disorder, in addition to children and the adult population,” said Sung. “There’s a huge need for both vocational services and better coordination between the high schools and the vocational rehabilitation system to bridge the gaps.”

Transition youth with autism who don’t find work, she added, face an increased possibility of sitting at home and developing secondary issues such as low self-esteem and depression.

For one study, Sung and colleagues looked at 5,681 people with autism who used vocational employment services. While transition youth, or those aged 18 and younger, represented the largest group, only 47 percent of them secured employment after receiving services (compared to 55 percent for those aged 19-25 and 61 percent for those 26 and older). This held true despite all participants having previous work experience.

According to the Centers for Disease Control and Prevention’s latest estimate, 1 in 68 children are identified with autism spectrum disorder – which is 120 percent higher than the estimate in 2002 (1 in 150 children). Males are almost five times more likely to be diagnosed with autism.

“These children will grow and become adults, and what we realize is that more and more adults with autism spectrum disorder are facing significant issues with employment,” Sung said.

The other study looked at gender differences among 1,696 transition youth with autism when it came to finding employment. Males in particular had a difficult time finding a job when they also had anxiety or depression. Not surprisingly, they benefited more from guidance and counseling.

“When working with males, special attention should be paid to the unique gender differences and their effects on employment,” the study says. “Specifically, providing vocational counseling and guidance to teach interpersonal and behavioral skills are especially important.”

Sung said it’s also important to help young people secure internships or jobs before they leave high school – and to emphasize that work experience when looking for work in the transition phase.

Sung’s co-authors include MSU researchers Michael Leahy, June Chen, Sukyeong Pi and Hung-Jen Kuo; Jennifer Sanchez from the University of Texas at El Paso; and Chia-Chiang Wang from the University at Buffalo, State University of New York.
Leahy and Sung are affiliated with MSU’s Institute for Research in Autism, Intellectual and Neurodevelopmental Disorders, which Leahy co-directs.

Intellectual Disability Down, Autism Up: Reclassification

In The Politics of Autism, I discuss the likelihood that the increase in autism diagnoses and educational determinations at least partially the result of increased awareness and changes in diagnostic criteria.

A press release from Penn State:

The greater than three-fold increase in autism diagnoses among students in special education programs in the United States between 2000 and 2010 may be due in large part to the reclassification of individuals who previously would have been diagnosed with other intellectual disability disorders, according to new research. In a paper to be published online in the American Journal of Medical Genetics on July 22, 2015, scientists at Penn State University report their analysis of 11 years of special-education enrollment data on an average of 6.2 million children per year. The researchers found no overall increase in the number of students enrolled in special education. They also found that the increase in students diagnosed with autism was offset by a nearly equal decrease in students diagnosed with other intellectual disabilities that often co-occur with autism. The researchers conclude that the large increase in the prevalence of autism is likely the result of shifting patterns of diagnosis that are complicated by the variability of autism and its overlap with other related disorders.

 

"For quite some time, researchers have been struggling to sort disorders into categories based on observable clinical features, but it gets complicated with autism because every individual can show a different combination of features" said Santhosh Girirajan, assistant professor of biochemistry and molecular biology and of anthropology at Penn State and the leader of the research team. "The tricky part is how to deal with individuals who have multiple diagnoses because, the set of features that define autism is commonly found in individuals with other cognitive or neurological deficits."

Recent reports from the United States Centers for Disease Control and Prevention (CDC) suggest that there has been an increase in the prevalence of autism from 1 in 5000 in 1975 to 1 in 150 in 2002, then to 1 in 68 in 2012. Much of this increase has been attributed to increased awareness and a broadening of the diagnostic criteria for autism. But this new research provides the first direct evidence that much of the increase may be attributable merely to a reclassification of individuals with related neurological disorders rather than to an actual increase in the rate of new cases of autism.

The researchers used data from the United States Individuals with Disabilities Education Act (IDEA) for students enrolled in special-education programs. Under IDEA, individuals are classified into one of thirteen disability categories including autism spectrum disorders, intellectual disability, emotional disturbance, other health impairment, and specific learning disabilities. Although many of the categories can co-occur in individuals with autism and show some of the same diagnostic features, children can be classified only under one category.

The research team noted more than three times the number of cases of autism in 2010 as compared to 2000; however, nearly 65 percent of this increase could be accounted for by a reduction in the number of individuals classified in the intellectual disability category in the IDEA data. The diagnostic reclassification of individuals from the category of intellectual disability to the category of autism accounts for a large proportion of the change, which varied depending on the age of the children. The researchers estimate that, for 8 year-olds, approximately 59 percent of the observed increase in autism is accounted for by reclassification, but by age 15 reclassification accounts for as much as 97 percent of the increase in autism.

"The high rate of co-occurrence of other intellectual disabilities with autism, which leads to diagnostic reclassification, is likely due to shared genetic factors in many neurodevelopmental disorders," said Girirajan. "When individuals carrying classically defined genetic syndromes were evaluated for features of autism, a high frequency of autism was observed, even among disorders not previously associated with autism, suggesting that the tools for diagnosing autism lose specificity when applied to individuals severely affected by other genetic syndromes."

The researchers also noted that the relationship between autism cases and other intellectual disabilities varied state-by-state. When assessed individually, states such as California, New Mexico, and Texas showed no relationship between the prevalence of autism and that of intellectual disability, suggesting that state-specific health policy may be a significant factor in estimates of autism prevalence.

"Because features of neurodevelopmental disorders co-occur at such a high rate and there is so much individual variation in autism, diagnosis is greatly complicated, which affects the perceived prevalence of autism and related disorders," said Girirajan. "Every patient is different and must be treated as such. Standardized diagnostic measures incorporating detailed genetic analysis and periodic follow up should be taken into account in future studies of autism prevalence."

In addition to Girirajan, other members of the research team are Andrew Polyak, an undergraduate student in Girirajan's lab, and Richard Kubina, professor of educational psychology, counseling, and special education at Penn State. This work was funded by the Penn State Huck Institutes of the Life Sciences and the Penn State Department of Biochemistry and Molecular Biology.

Looking for Biomarkers

Uncertainty is the major theme of The Politics of Autism.  A new research initiative aims to reduce it. A release from NIH:

Government, non-profit and other private partners will fund a multi-year project to develop and improve clinical research tools for studying autism spectrum disorder (ASD). The project will receive a total of $28 million over the next four years to test and refine clinical measures of social impairment in ASD in order to better evaluate potential behavioral and drug therapies. It is supported by the National Institutes of Health (NIH), the Foundation for the NIH (FNIH), the Simons Foundation Autism Research Initiative (SFARI), and others. NIH funding comes from the National Institute of Mental Health (NIMH), the National Institute of Neurological Disorders and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

The effort is the latest addition to the prestigious list of projects supported by the Biomarkers Consortium , a large public-private partnership that aims to accelerate biomedical research progress. James McPartland Ph.D. of Yale School of Medicine, New Haven, Connecticut, serves as principal investigator. The Consortium supports research to identify disease-specific biomarkers and develop targeted technologies and treatments. Its ultimate goal is precision medicine — an emerging approach to prevention and treatment that takes into account an individual’s disease-related variations in genes, environment, and lifestyle.
...
“The heterogeneity in people with an ASD makes it imperative that we find more precisely diagnosed groups of research subjects so that we can objectively evaluate the clinical effects of an intervention,” said NIMH Director Thomas R. Insel, M.D. “This consortium project will develop reliable tools and measures that clinical researchers can use to assess potential treatments.”

McPartland and his team will conduct a multi-site study of preschool (3-5 years) and school aged (6-11 years) children, both with and without ASD, over the course of several months. Research sites include Yale University, Duke University, Durham, North Carolina, the University of California, Los Angeles, the University of Washington, Seattle, and Boston Children’s Hospital.

The research team will begin by comparing lab-based measures of domains of social impairment to commonly used, standardized clinician and caregiver assessments of social function. Specifically, they will investigate the sensitivity and reliability of these unique measures in terms of how well they indicate changes in a participant’s core social impairment symptoms over time.

The researchers will then evaluate the potential utility of eye tracking responses and measures of brain activity via electroencephalogram (EEG) as biomarkers for future clinical trials. They will investigate how these two noninvasive and relatively inexpensive biomarker measures relate to their recently validated lab-based measures of social function. Together, these findings will lay the groundwork for ASD researchers to objectively select meaningful subgroups of children and reliably measure the clinical effects of interventions.

In addition to the behavioral measures and biomarker data, this community resource will also include blood samples from subjects and their parents for use in future genetic studies. Data and resource sharing are key components of this Consortium project. All data generated in the project will be made available for other researchers to view and analyze through the NIH-funded National Database for Autism Research and the NIMH Repository and Genomics Resource .

Self-Diagnosis and Neurodiversity

In The Politics of Autism, I discuss the neurodiversity movement. At The Washington Post,  Sandhya Somashekhar writes:

Because receiving a formal diagnosis as an adult can involve an expensive battery of tests not covered by health insurance, many autistic people who do not need to qualify for special services ­self-diagnose using information they find online and other places.

Recently, the movement has logged some policy victories. A Washington-based nonprofit called the Autistic Self Advocacy Network successfully pushed Congress last year to rename the reauthorization bill for autism funding. Instead of the “Combating Autism Act” it was dubbed the “Autism CARES Act,” or Autism Collaboration, Accountability, Research, Education and Support Act. The group also led a successful campaign to increase the minimum wage for disabled workers at firms that receive federal contracts.

One open question:  how many of the self-diagnosed adults would actually qualify for a diagnosis from a trained professional?  Jerry Seinfeld took heat when he casually suggested that he might be on the spectrum.

Hawaii Governor Signs Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Autism Speaks reports:

Hawaii Governor David Ige has signed a landmark autism insurance reform bill, making Hawaii the 42nd state to require certain health insurance plans to cover treatment for autism spectrum disorders.

SB 791, sponsored by Senator Josh Green (D-Kohala/Kona), requires state-regulated insurance plans to cover medically necessary treatment for autism including behavioral health treatment, psychiatric, psychological, pharmaceutical and therapeutic care. The legislation also requires plans to cover applied behavior analysis (ABA) with a maximum of $25,000 per year through 13 years of age.
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"Luke's Law will have a more positive and direct impact on people's lives in Hawaii than any other bill that we passed this year. The thousands of people in Hawaii with autism have better lives, and their families and friends will get to watch them thrive,” said State Senator Josh Green, M.D.

Earlier this month, Governor Ige enacted SB 40, which requires licensure of behavior analysts and funds the implementation of a Behavior Analyst board. Applied behavior analysis (ABA) is the leading treatment to bring about meaningful and positive change in behavior for individuals with autism.

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Families impacted by autism in Hawaii also recently celebrated the enactment of, HB 119, ABLE Savings programs to allow families the opportunity to set up tax-exempt 529A savings accounts for disability-related expenses. Read more here.

Training for Law Enforcement

In The Politics of Autism, I discuss encounters between law enforcement and people on the spectrum.

A news release from Pennsylvania state representative Thomas Caltagirone:

State Rep. Thomas Caltagirone, D-Berks, said the governor has signed his legislation into law that will provide training for law enforcement officials and members of the judicial system on identifying and interacting with people suffering from mental illness, intellectual disabilities and autism.

Caltagirone said the House passed the legislation in February and it was passed by the Senate in June.

"It is a privilege to see this reach Governor Tom Wolf's desk," Caltagirone said.

The law (Act 25 of 2015) requires police officers and the minor judiciary, such as magisterial district judges, to receive training on the recognition and proper de-escalation techniques to be used when interacting with people with mental illness, intellectual disabilities or autism.

"We aren't reinventing the wheel, but we are enhancing law enforcement training," Caltagirone said.

Municipal police officers will be required to receive training though the Municipal Police Officers' Education and Training Commission. Training for magisterial district judges will be done through continuing education requirements and would need to take place every six years.

"Step one is getting the appropriate training. Step two is putting it to work," Caltagirone said. "I cannot stress enough the importance of de-escalation techniques that will be part of the trainings. If a police officer can quickly identify a person experiencing a mental breakdown and use proven crisis intervention techniques to de-escalate a situation, we have a public safety victory."

Additionally, the training will include instruction on diversionary options. It will include information on services available for people with mental illness, intellectual disabilities or autism.

"Moral of the story: incarceration should not be the go-to solution," Caltagirone said.

The Scranton Times-Tribune reports:

The training legislation was first introduced in the late 1990s after a well-publicized incident in which a young Harrisburg man with autism had an encounter with city police. He was looking in the window of his own home at the time.

The case spurred the Autism Society of America Harrisburg Chapter to produce a training video to raise awareness about autism for police departments. The video was produced and widely distributed with the help of a grant from the Pennsylvania Developmental Disabilities Council. This was a voluntary effort, however, and various lawmakers took up the cause of having a mandatory training requirement in state law.

The training legislation has appeared in nearly every session since then, but never made it to the finish line.

This time things were different, with the House approving the bill 197-1 shortly after the new session began in January. The Senate approved the bill unanimously last month without any amendments, so it went straight to the governor for action.

Age Three: The Little Cliff

In The Politics of Autism, I discuss "the cliff," an autistic person's 22nd birthday, when IDEA services suddenly stop.  There is also a "little cliff," the third birthday, when relatively generous early intervention services give way to not-always-adequate school services.

At The Worcester Telegram, Susan Spencer begins a series on autism, using the case of three-year-old Teresa Lackey:

Grafton Special Education Administrator Arnold Lundwall said children coming to preschool at age 3 from early intervention programs are evaluated and the team determines what services the school will provide. "If a child needs it, you get it," he said.

Therein lies a big problem: Children younger than age 3 who are diagnosed with autism are eligible for extensive services, including ABA, based on a licensed developmental specialist's evaluation. But as of the third birthday, the child's development and education become the province of the local school district.

"There's a blurred line between the medical issue and education because this is where education is really health care," said Jacob Lackey, Teresa's father and a network engineer. "The problem I see with the situation is, you can have a health care practitioner say the child needs this and the teacher overrules it."

Special Ed Vouchers in Wisconsin

Christina Samuels reports at Education Week:

Wisconsin Gov. (and recently announced Republican presidential candidate) Scott Walker signed a budget bill Sunday that will allow certain students with disabilities to use public dollars to pay for private school.

The provision will start in the 2016-17 school year and will be worth $12,000 in that first year. It can be used by students who attended a Wisconsin public school for at least one year and who had been rejected from enrolling as a nonresident in another school district under Wisconsin's open-enrollment policy.

Nonresident students can be denied a transfer for several reasons, including a lack of space, a history of habitual truancy or expulsion, or requirement of special education services that aren't currently offered by the district they want to transfer into. (The state's education department is facing a lawsuit that says the Wisconsin students with disabilities have been denied open-enrollment placements solely because of their need for special services.)

In the new voucher program, private schools would have to agree to implement the child's individualized education program, as modified by agreement between the student's parents and the private school. Also, the child's district of residence will be required to evaluate the child every three years, unless the parent and the district agree otherwise. The Wisconsin Legislative Fiscal Bureau, a nonpartisan agency that provides fiscal analysis to state lawmakers, has a document that spells out all of the provisions of the Wisconsin special education voucher program.

The Fall of Dr. Bradstreet

At The Washington Post, Michael E. Miller does a deep dive on the late Dr. Jeffrey Bradstreet. The moral is that although the Internet allows misinformation and dubious "cures" to spread worldwide, it also opens the way for worldwide pushback, too.

Fiona O’Leary is a far cry from a fearsome detective. She is a thin, pale Irish woman with dyed crimson hair and Asperger’s.

But she also has two sons with autism.

So like Bradstreet’s patients, O’Leary began scouring the Internet for ways to help her kids. Instead, she found GcMAF, which she calls a “dangerous and unethical scam.”

“GcMAF is another dangerous unauthorized, unproven and very expensive treatment being used in the Autism field,” O’Leary told The Post in an e-mail. She is the founder of Autistic Rights Together, an organization that exposes bogus autism magic bullets. “Those offering this treatment are untrained and not medical Doctors,” she said of GcMAF. (Bradstreet, it should be noted, was licensed to practice medicine in Georgia at the time of his death.)

O’Leary began investigating Bradstreet, Noakes, Immuno Biotech and their GcMAF solution, First Immune, in 2014. She began with First Immune’s headquarters in Guernsey, one of the Channel Islands.

Her complaints led regulators on the island to raise concerns in December with the Medicine and Healthcare Products Regulatory Agency (MHRA), the United Kingdom’s version of the FDA.

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 But the GcMAF saga didn’t end there. O’Leary was hounding American officials as well. After spotting Bradstreet’s videos and blog posts mentioning his connections to Noakes and First Immune, O’Leary complained to the FDA about the American doctor.

Four months after First Immune was shut down, the feds came knocking on Bradstreet’s Buford, Ga., clinic.

Ranking Medicaid in the States

In The Politics of Autism, I discuss state Medicaid services for people with intellectual and developmental disabilities.  United Cerebral Palsy is out with its annual ranking:

Arizona 1
Maryland 2
Missouri 3
New York 4
Hawaii 5
Colorado 6
Minnesota 7
Dist. of Columbia 8
South Carolina 9
Ohio 10
Georgia 11
Maine 12
Alabama 13
Massachusetts 14
Utah 15
California 16
Connecticut 17
Oregon 18
Kentucky 19
Kansas 20
Vermont 21
Pennsylvania 22
Indiana 23
Louisiana 24
New Hampshire 25
Washington 26
Florida 27
New Jersey 28
Michigan 29
West Virginia 30
Nevada 31
Tennessee 32
Wisconsin 33
North Carolina 34
Delaware 35
New Mexico 36
Nebraska 37
South Dakota 38
Rhode Island 39
Alaska 40
Virginia 41
North Dakota 42
Oklahoma 43
Iowa 44
Wyoming 45
Idaho 46
Illinois 47
Montana 48
Arkansas 49
Texas 50
Mississippi 51

Possible Antivax Referendum in California

In The Politics of Autism, I explain how the discredited idea that vaccines cause autism has fueled opposition to mandatory immunization.  At The Los Angeles Times, Patrick McGreevy reports:

Opponents of a new California law mandating vaccinations for more children were cleared by the state Tuesday to begin collecting signatures on a ballot referendum on the measure.

Led by former assemblyman and Republican gubernatorial candidate Tim Donnelly of Twin Peaks, the opponents must collect the signatures of 365,880 registered voters on petitions by Sept. 28 for the referendum to qualify for the ballot.

A majority of voters would then have to vote yes on the referendum, in favor of the new law, during a November 2016 election, or it would not go into effect.

...
 Allan Hoffenblum, a Republican consultant and chief author of the California Target Book, predicted the opponents would qualify the measure for the ballot.

“It’s a minority of people but it’s a sizeable minority of people,” Hoffenblum said. “I would be surprised if it didn’t quality. There is a lot of intensity.”

He said the opponents have a “sizeable advantage” because the signatures required for the referendum are based on 5% of the total votes cast for governor in the last general election, and November’s election had a record-low turnout.

Cop Autism Response Education

In The Politics of Autism, I discuss interactions between police and autistic people.

James Walsh reports at The Minneapolis Star-Tribune:

The day is going to come, Charlene Wilford knows, when one of her 12-year-old son’s frequent “meltdowns” will bring the police to her door. When that time comes, she says, she hopes St. Paul police officer Rob Zink answers the call.

Chances are, he will.

Zink, 45, recently created the Cop Autism Response Education (CARE) Project, as part of a groundbreaking effort to ensure that police calls involving people with autism end safely. His first priority has been getting to know St. Paul families with autistic children and explaining how police respond to domestic violence calls — a not uncommon scenario involving those with an autism spectrum disorder. His second is helping police find quieter and gentler ways to defuse those calls.
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For more information about the St. Paul Police Department’s work to reach out to families of those with autism spectrum disorder, e-mail: SPPD-Autism@ci.stpaul.mn.us

Mixed Housing

At The Pittsburgh Post-Gazette, Mark Roth writes that local developers are building a complex that will house autistic adults along with non-autistic residents.

The Dave Wright Apartments will feature 42 one- and two-bedroom apartments, including six for physically disabled people, on the site of the former Wright’s Seafood restaurant in Heidelberg. About half the units are expected to go to higher functioning autistic adults who can live independently and hold a job, said Elliot Frank, president of the Autism Housing Development Corp. of Pittsburgh, which is building the complex along with ACTION-Housing Inc.

Mr. Frank said he expects the apartments, which received an innovation design award from the Pennsylvania Housing Finance Agency, to open in the fall of 2016. Financed under a federal law that provides affordable housing, the rents will range from $575 to $800 a month, and a single resident will not be able to earn more than $28,000 a year, he said.

While this project may be the first that mixes autistic and non-autistic adults, it is part of a recent movement to create affordable housing projects that put various special needs groups alongside typical renters. One ACTION-Housing project being developed in Bloomfield will house disabled veterans alongside regular renters, and another in Uptown combines typical renters with residents with hearing and vision disabilities, said Larry Swanson, executive director of ACTION-Housing.

The Heidelberg project grew out of a conversation a few years ago between Mr. Frank and Roy Diamond, an affordable housing developer in Philadelphia. Both of them have sons with autism, Mr. Frank recalled, and “we said to ourselves, once they’re grown up, where do they live? So we said, ‘Let’s do affordable housing for them so we can complete the puzzle for them on how to live independent, affordable lives.’ ”

Financing for the $13 million project is coming through the Pennsylvania Housing Finance Agency. Under the IRS code used for such projects, banks get $1 in direct tax credits for every dollar provided, and PNC is contributing $11.5 million of the financing. The rest is coming from Allegheny County.

Parental Experience of the Diagnostic Process

In The Politics of Autism, I explain that pediatricians often dismiss early parental concerns about possible autism and that  many diagnoses come relatively.

At Focus on Autism and Other Developmental Disabilities, Donald P. Oswald and colleagues have an article titled "Parental Report of the Diagnostic Process and Outcome: ASD Compared With Other Developmental Disabilities." The abstract:

Parents report that the process of getting an autism spectrum disorder (ASD) diagnosis is arduous, lengthy, and fraught with difficulties. This analysis of the Pathways survey data set examined the experiences of parents who said, at the time of the survey, that their child currently had ASD compared with parents who said, at the time of the survey, that their child currently had some other developmental disability. Despite substantially earlier parental concerns about their child’s development, the ASD group (n = 1,420) received their current diagnosis about 7 months later (M age at diagnosis = 62.8 months, SE = 1.62) on average, than did children in the group diagnosed with other developmental delay (n = 2,098, M age at diagnosis = 55.4 months, SE = 2.13). Parents in the “Current ASD” group were more likely to report that the health professional said nothing was wrong or that the child might “grow out of it,” emphasizing a common parental complaint. Continued efforts to improve parents’ experience of the diagnostic process are warranted.

From the article:

The fact that higher income families were more likely to have a child in the “Current ASD” group should not be considered evidence for prevalence differences based on socioeconomic status (SES); Kanner’s (1943) original hypothesis that autism was associated with parental intelligence (and education) has been dismissed based on abundant epidemiological data (beginning with Schain & Yannet, 1960, but demonstrated most conclusively in Schopler, Andrews, & Strupp, 1979). However, the finding does raise questions about differential access to adequate diagnostic assessment services, based on family income or parent education. Although this finding is somewhat peripheral to the primary questions of interest in the present study, it may serve notice that such differential access issues have not been eliminated.

Perhaps One Risk Factor to Remove from the Long List

Rachel Zamzow reports at SFARI:

Women who are overweight during pregnancy have an increased risk of having a child with autism. But genetics, not the obesity per se, may underlie the association, according to a study published 4 June in the International Journal of Epidemiology 1.

The study is the largest to date to point to maternal weight as a factor in autism 2,3.
It found that being overweight during pregnancy does not track with autism when researchers analyze pregnancies in only women who have both affected and unaffected children. The researchers defined ‘overweight’ as having a body mass index (BMI) between 25 and 30.

“When we looked at our data we were actually very, very surprised to see that the association with the maternal BMI had completely gone away,” says lead researcher Renee Gardner, assistant professor of public health sciences at the Karolinska Institute in Sweden. “It was a surprise that really forced a change of perspective.”

More likely, she says, maternal weight is a marker for a genetic contributor to autism.

GcMAF

Many posts have discussed dubious "cures" for autism.  Emily Willingham writes at Forbes:

According to a federal government warrant, the offices of controversial autism doctor Jeff Bradstreet were the target in June of a search related to an experimental drug for autism. The compound, globulin component macrophage-activating factor, known as GcMAF, is one that Bradstreet reportedly used in “over 2000 children” with autism. Bradstreet, according to authorities in Rutherford County, NC, committed suicide there on June 19, after the search warrant was executed in late June.

According to the copy of the warrant provided to me by the United States Attorney’s Office of the Northern District of Georgia, the search warrant was executed at Bradstreet’s Buford, GA, ‘wellness center’ because authorities were seeking information related to “evidence of a crime and contraband, fruits of crime, or items illegally possessed” associated with violations of interstate commerce statutes covering food, drug, or other products that are “adulterated or misbranded” and with “frauds and swindles” by “wire, radio, or television.” Punishments for those convicted of these crimes can include fines and up to 20 years in prison.

Marijuana for Autism?

A number of posts have discussed marijuana as a possible treatment for autism. Emily Willingham writes at Forbes:

And what about marijuana for autism? Compared to the studies done for schizophrenia, which number more than 1,000, autism and marijuana has gottenalmost no research attention. That hasn’t stopped a grassroots movement from growing up around using pot as an autism therapeutic, with one Facebook group,MAMMAS (Mothers Advocating Medical Marijuana for Autism), boasting almost 5,000 followers, and one writer and autism parent advocating for its use from a public pulpit.

But as the authors of a recent review note—and PubMed searches bear out—no studies exist suggesting clinical benefit for autism. Indeed, in a news release publicizing the review, the first author, Scott Hadland of Boston Children’s Hospital, is quoted as saying:

in using medicinal marijuana (parents) may be trading away their child’s future for short-term symptom control.

These authors also call for more research into cannibidiol’s effects and more emphasis on developing high-cannabidiol/low-THC products. Perhaps these compounds, rather than the plant, should be what we mention when we talk about these neurological therapeutics. After all, no one brings up using willow trees for pain or blood thinners, even though they originated the active compound in aspirin, and no one says they take ’foxglove’ as a heart medication–they take digoxin instead.

States and Special Ed

Christina Samuels reports at Education Week:

Nineteen states earned a "meets requirement" rating from the U.S. Department of Education's office of special education programs for the 2013-14 school year, according the department's latest report, which reflects the second year of a new, tougher evaluation system.

That was up from 15 states that earned that rating from the U.S. Department of Education last year, the first year the department evaluated states under a new "results-driven accountability" matrix. The states were evaluated last year on 2012-13 data. The system was designed to measure states on special education student performance as well as compliance issues, such as whether states meet various deadlines mandated under the Individuals with Disabilities Education Act.

States have also been asked to create a "state-identified measurable result," which is intended to be the foundation of a multiyear, comprehensive plan to improve student performance in special education. For example, a state could choose to focus on a goal to improve student literacy, and develop a multilayered plan of how to accomplish that goal.

In addition to meets requirements, states can be rated in three additional categories—needs assistance, needs intervention, and needs substantial intervention. No state has fallen into the lowest category, though the District of Columbia has been in the needs intervention category for nine consecutive years. Each level triggers a different action from the office of special education programs, from referring states to technical assistance to requiring states to use some of their federal special education money to address the areas of deficiency.

This year, 30 states were found to need assistance in the report provided to states June 30, which is down from 32 in the report issued last year. In addition to the District of Columbia, Texas was found to need intervention, for the second year in a row.

"A Foot in the Door"

Lauren Mc Donald of the Morris News Service reports that Ava's Law has gone into effect.

Due to a new state law that took effect July 1, private insurance companies must provide coverage for the best therapeutic treatment for children with autism ages 6 and under.

Ava’s Law, passed unanimously this year by the Georgia General Assembly, requires private insurance companies to cover Applied Behavior Analysis therapy for the first time in the state’s history. Georgia became the 41st state to require coverage.
...
Over the past eight years, the Georgia General Assembly has continually increased the amount of state funds appropriated for nonprofit organizations that provide diagnosis, care and treatment. The state provides $4.2 million to nonprofit organizations, such as the Matthew Reardon School, a year-round school for autistic children.

It costs $40,000 per year for the school to educate each student, said Patti Victor, the school’s president and CEO. State and private funding allows the tuition to remain low enough for families to afford.
...
And even though Ava’s Law has been passed, she said a lot of families still do not have private insurance and will not be covered because the law only applies to insurance companies selling policies. It doesn’t include large employers who insure themselves. However, the state’s insurance for government workers and teachers began including the coverage last year, before the law required it.

Victor said the law provides a “foot in the door” for future legislation.

“What’s happens when the child turns 7?” she said. “From a long-term standpoint, an important part of Ava’s Law is that it has put autism on the minds of people who have the ability to pass laws and to offer assistance.”

"In the Autism World, We Fight"

In The Politics of Autism, I explain that conflict pervades the issue.  At The Huffington Post, Michael John Carley makes a similar point:

Unlike the worlds of Cystic Fibrosis, or Down Syndrome; the autism world also does not have one, primarily-unifying non-profit that everyone rallies around, goes on fundraising walks for, or volunteers for in the consensus-filled spirit of shared goals. In the autism world, we have a gajillion such organizations, almost never representing the entirety of the spectrum, and founded partly in the rejection of existing orgs. And with all those non-profits, no centralized guiding entity exists, or can exist. Sadly unable to coalition, they then compete for limited funds and press attention...by screaming. Whether it's spectrum folk like myself going after one another to jockey for attention,1,2, stating that Autism Speaks is complicit in murders, or destroying chat group relationships over semantic issues; OR whether it's the pro-cure folks producing the infamous "I Am Autism" video, the declaration that all 3 million of us can't use the toilet (uh, last I checked...?), the b.s. statistic of an 80% divorce rate, or the anti-vaxxers' insinuation that people like myself are simply poisoned, chemical accidents...we get comedy worthy of Vonnegut.

The present leadership of major players in the world of autism politics--rather than trying to soothe or steer the emotions of its overwhelmed members towards healthier perspectives--often willingly, in that battle for recognition, pours figurative gasoline on the fires consuming their constituents (whereas in other fields, competitions are resolved by comparing the results of their programs). Instead of healing, big-picture perspective, they douse those who trust and need them with alarmist, often misinformative rhetoric.

In the autism world, we fight. We fight over words, vaccines, aversives, behavioral strategies, and what research is ethical or that which is not. Most of the consequences for winners and losers of these fights surround our attitudes towards what constitutes a happy life, and this is rather big stuff; while other battles--vaccines and aversives--can determine whether people live or die. There is cause for anger, especially when services are the opposite of satisfactory, yet the majority of funding goes towardsgenetic studies having no impact on families living today.

Measles, Death, and Immunization

Kim Christensen reports at The Los Angeles Times:

Three days after Gov. Jerry Brown signed one of the nation's strictest mandatory vaccination bills, several hundred opponents rallied in Santa Monica on Friday and vowed to repeal it.
...

Speakers at the rally included Andrew Wakefield, whose 1998 study in the medical journal Lancet claimed a possible link between the measles vaccine and autism. The study was later debunked as fraudulent and retracted, but Wakefield remains a hero in the anti-vaccination movement.

"I have been in this for 20 years and I will fight this battle until I die, because your children are worth fighting for," he told the crowd, which gave him a rousing ovation.

Tony Muhammad, student Western regional minister in the nation of Islam, invited the audience to join in a multicultural, multi-religious effort to repeal the vaccination bill.

"I will be damned if I'll let anyone come into my house and tell me what to do with my children," he said.

Frank Bruni writes at The New York Times:

The anti-vaccine agitators can always find a renegade researcher or random “study” to back them up. This is erudition in the age of cyberspace: You surf until you reach the conclusion you’re after. You click your way to validation, confusing the presence of a website with the plausibility of an argument.

Although the Internet could be making all of us smarter, it makes many of us stupider, because it’s not just a magnet for the curious. It’s a sinkhole for the gullible.

It renders everyone an instant expert. You have a degree? Well, I did a Google search!
Vaccine opponents are climate-change deniers with less gluten and more Prada, chalking up the fact that they’re in a minority to the gutless groupthink of the majority.

They’ve learned that as soon as you allege collusion and conspiracy, you’ve come up with a unified theory that explains away all opposition and turns your lonely stance into a courageous one.

AP reports:

A woman killed by measles in Washington state had been vaccinated against the disease as a child but succumbed because she had a compromised immune system, a local health official told a TV station.

The woman's death was the first from measles in the U.S. in 12 years and the first in the state in 25 years.

The case wasn't related to a recent outbreak that started at Disneyland and triggered a national debate about vaccinations, according to the Washington State Department of Health. Officials said it was a different strain.

The Washington woman lacked some of the measles' common symptoms, such as a rash, so the infection wasn't discovered until an autopsy, department spokesman Donn Moyer said Thursday.

Dr. Jeanette Stehr-Green, the Clallam County health officer, told KOMO-TV in Seattle that the woman had been vaccinated as a child, but because she had other health problems and was taking medications that interfered with her response to an infection, she was not protected.

What Terms to Use?

From the preface to The Politics of Autism.

A major theme of this book is that just about everything concerning autism is subject to argument. There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.[i] Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.[ii] For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side. I can only say that I mean no offense.

[i] Lydia Brown, “The Significance of Semantics: Person-First Language: Why It Matters,” Autistic Hoya, August 4, 2001. Online: http://autisticadvocacy.org/identity-first-language/

[ii] Kathie Snow, “A Few Words about People-First Language,” Disability Is Natural. Online: http://www.disabilityisnatural.com/images/PDF/pfl-sh09.pdf 

At Autism, Lorcan Kenney and colleagues have an article titled, "Which Terms Should Be Used To Describe Autism? Perspectives From The UK Autism Community."  The abstract:

Recent public discussions suggest that there is much disagreement about the way autism is and should be described. This study sought to elicit the views and preferences of UK autism community members – autistic people, parents and their broader support network – about the terms they use to describe autism. In all, 3470 UK residents responded to an
online survey on their preferred ways of describing autism and their rationale for such preferences. The results clearly show that people use many terms to describe autism. The most highly endorsed terms were ‘autism’ and ‘on the autism spectrum’, and to a lesser extent, ‘autism spectrum disorder’, for which there was consensus across community groups. The groups disagreed, however, on the use of several terms. The term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents. Qualitative analysis of an openended question revealed the reasons underlying respondents’ preferences. These findings demonstrate that there is no single way of describing autism that is universally accepted and preferred by the UK’s autism community and that some
disagreements appear deeply entrenched.

Smell Test for Autism? Maybe, Maybe Not

Like many other outlets, The International Business Times is reporting on a possible "smell test" for autism:

It may be possible to diagnose autism in children by measuring their reaction to smells, according to a new study that found a marked difference in the reaction to odors from children with the disorder, compared to those without it.

While most people automatically inhale a pleasant smell deeply, and seek to limit their breathing in order to avoid unpleasant ones, autistic children do not make this distinction, the study, published in the journal Current Biology, found.

In The Politics of Autism, I discuss media coverage. Journalists frequently over-interpret or misinterpret research findings, and sometimes the stories rest on mere anecdote.  So we have had pieces about "miracle cures," medical tests, diets, multiple risk factors,

In this case, the study looked at 36 subjects, 18 of whom have autism.  If other researchers replicate the study -- a big if -- perhaps the findings will hold up.  Perhaps they will not.  But it is extremely premature to speculate on changes in diagnostic procedure on this basis of this one article.

Carrey, Autism, and Tuberous Sclerosis

Buzzfeed reports that Jim Carrey is digging himself a deeper Twitter hole:

On Wednesday, Carrey continued this message with a series of tweets that included photos of children with autism. One, showing an unnamed boy crying with his arms behind his head, read: “TOXIN FREE VACCINES, A REASONABLE REQUEST.”

The boy is 14-year-old Alex Echols of Eugene, Oregon. And his family is pretty annoyed with Carrey’s tweet.

“Jim Carrey has a huge platform — a huge following — and is misrepresenting my son’s image by attaching it to his anti-vax rant,” Alex’s mother, Karen Echols, told BuzzFeed News by email.

Alex was born with a genetic syndrome called tuberous sclerosis, or TSC, which causes benign tumors to grow all over the body, including the brain. Many children with TSC have autism, including Alex.

Alex lives in a group home. Echols and her husband, Jeremy, are open about his condition, maintaining a website, alexneedshelp.com, and a Facebook page to try toadvocate for the use of medical marijuana to calm his seizures, self-injurious behaviors, and anxiety.

At Forbes, Emily Willingham writes:

The condition gets its name from the potato (tuber)-like growths that develop in the brain, as visible on MRI, that eventually harden, or sclerose. It traces to two gene variants that result in the development of these benign growths in many tissues. ‘Benign’ references only the fact that they aren’t cancer—their effects are not benign, particularly in the central nervous system. While the effects can be mild, often the condition is associated with epilepsy, developmental delay, and … autism.

In fact, about a third to half of children who have tuberous sclerosis could also be diagnosed with autism. Each condition is associated with seizures, and there are hints that disrupted connections among brain regions might be responsible for both the seizures and the social communication deficits of autism.

It’s ironic that Jim Carrey, in his effort to argue a debunked link between vaccines and autism, accidentally drew attention to one of the few factors that have been strongly linked to autism. Some celebrities, however, such as Julianne Moore, were way ahead of the curve and have been working a little more deliberately to draw attention to tuberous sclerosis.

Carrey Tweets

In The Politics of Autism, I discuss a prominent anti-vaccine group:

The group gained a key supporter in actress Jenny McCarthy, who believed that vaccines had caused her own son’s autism. McCarthy, who had already gained a great deal of publicity for the vaccine theory by discussing it on the Oprah Winfrey show, became the group’s president. (It briefly called itself “Jenny McCarthy and Jim Carrey’s autism organization,” but the celebrity couple split in 2010.[i])

---

[i] John J. Pitney, Jr., “Gossip and Autism,” April 6, 2010.  Online: http://www.autismpolicyblog.com/2010/04/gossip-and-autism.html.

Alexander Smith reports at NBC:

Jim Carrey left his 14 million Twitter followers in no doubt about his feelings on California's tough new vaccination law on Tuesday.

The actor believes there is a link between vaccines and autism. He branded California Gov. Jerry Brown a "corporate fascist" after he signed into law one of the strictest immunization programs in the country earlier in the day.

In a series of more than half a dozen tweets that ended in a flurry of capital letters, the Golden Globe winner insisted he was "pro-vaccine." He was only "anti-neutrotoxin," he said, repeating his claim that ingredients such as thimerosal and mercury carry a risk to children.

The FDA explains:

Thimerosal has been removed from or reduced to trace amounts in all vaccines routinely recommended for children 6 years of age and younger, with the exception of inactivated influenza vaccine (see Table 1). A preservative-free version of the inactivated influenza vaccine (contains trace amounts of thimerosal) is available in limited supply at this time for use in infants, children and pregnant women. Some vaccines such as Td, which is indicated for older children (≥ 7 years of age) and adults, are also now available in formulations that are free of thimerosal or contain only trace amounts. Vaccines with trace amounts of thimerosal contain 1 microgram or less of mercury per dose.