ABLE 2.0

The Politics of Autism includes a discussion of the ABLE Act.

Autism dad Eli Lehrer writes at The Hill:

Many families (mine included) have put money into conventional 529 college savings plans and would now like to move it into the more flexible ABLE Accounts. Under current law, that’s not possible without paying massive tax penalties. Moreover, while one of the law's goals was to help the disabled take jobs and lead more typical lives, the law doesn't raise limits to allow beneficiaries to deposit their own earnings into the accounts. Finally, people who develop severe disabilities later in life from accidents, adult-onset mental illness or conditions like Lou Gehrig’s disease can’t benefit from the ABLE Act at all.

A bipartisan legislative package—styled "ABLE 2.0" and spearheaded by House Republican Conference Chair Cathy McMorris-Rodgers (R-Wash.)—would address each of these flaws. It would allow rollovers of 529 plan balances into ABLE accounts; raise the limits for working disabled people with ABLE accounts to deposit more of their own earnings; and increase the eligible age to open an ABLE account to 45. It’s a package of commonsense measures that will make it easier for special-needs families to save for their children and for special-needs adults to have the resources they need to live better and more independent lives.

Autism: Disorder or Disability?

In The Politics of Autism, I write about pushback against the disease frame:

Another signal was a 2013 public apology by Easter Seals after it sent out a mass email using the disease frame:  “On Tuesday, we sent you an email about autism and we owe you an apology. We called autism an epidemic and some of you called us out on our language. You're right. Autism is not an epidemic. Autism is not a public health crisis.”  In the same vein, Los Angeles Times journalist Michael Hiltzik walked back from language that he used in a 2014 story.   “I have been taken to task, properly, for referring to autism above as `a terrible condition for its sufferers and their families.’ That's a narrow and ill-informed way of looking at a condition that many people on the autism spectrum feel has benefited their lives.” 

Simon Baron-Cohen weighs in at The Journal of Child Psychology and Psychiatry.  The abstract:

Should we continue to refer to autism as a ‘disease’ or ‘disorder’, or is the framework of ‘neurodiversity’ a more humane and accurate lens through which to view people with autism? Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment. These are very different frameworks. It will be important to see how the concept of neurodiversity is applied to the 300 diagnoses in DSM-5, and if it revolutionizes both the science and the practice of psychiatry.

Measles, Antivax, and Prejudice

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  One consequence has been a measles outbreak within Minnesota's Somali community.

Saad Omer writes at STAT:

My colleagues and I assessed the risk of large measles outbreaks in the US. In a paper published in the American Journal of Epidemiology, we reported that approximately 12.5 percent of US children and adolescents are susceptible to measles. Moreover, we found that even a modest drop in the vaccination rate could result in the breach of the “herd immunity threshold” — that could result in breakdown of community level protection against measles.

When such outbreaks happen, it is often minority groups that get blamed for bringing disease into the country. For example during the so-called Disneyland outbreak of 2014-2015, multiple politicians expressed unfounded concerns about illegal immigrants bringing measles into the US. Then there is the not so proud history of blaming infectious disease importation and spread on ethnic and sexual minorities.

It is in this context that many of us in public health, who also believe in civil and human rights, worry about the Minnesota Somali-American community being blamed for something bigger than the current outbreak — even though the community itself has been a victim of an onslaught of propaganda and misinformation disguised as empathy.

Alabama Governor Signs Autism Insurance Mandate

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

Andrew J. Yawn reports at The Montgomery Advertiser:

Gov. Kay Ivey signed the autism insurance bill into law Friday at the Capitol, and afterward she was embraced by a few of the thousands of children the law will support.

Despite a late session effort to stymie the autism bill, it unanimously pushed through the House about 2 a.m. Thursday. Some concessions were made including an age cap and an exemption for business employing 50 people or fewer, but the law will make access to care easier for children on the spectrum whose applied behavior analysis (ABA) therapy will be covered by health insurance until the age of 18.

"The bill is real important," Ivey said. "This bill is about the quality of life of wonderful children, and I'm proud to sign this bill."

State Finance Director Clinton Carter's daughter Libby, 5, was one of the children on the spectrum to embrace Ivey after the signing.

Restraint and Seclusion: Statistics and Law

In The Politics of Autism, I discuss the use of restraint and seclusion.  I also note the uncertainty of many of the statistics that the issue involves.

Christina A. Samuels reports at Education Week:

One out of every 100 special education students was restrained by school personnel or secluded in school from his or her peers in the 2013-14 school year, presumably to quell behavior that teachers considered disruptive or dangerous.

That means nearly 70,000 special education students were restrained or secluded in that school year, the most recent for which data are available. For most students, this happened more than once: States reported more than 200,000 such incidents, so on average, a special education student was restrained or secluded about three times.

These statistics, based on an analysis by the Education Week Research Center of data collected by the U.S. Department of Education's office for civil rights, represent the best national snapshot of these controversial practices.

The numbers are also, almost surely, dramatically understated.

...
[Michigan] Lt. Gov. Brian Calley, a Republican, led a commission that was asked to recommend reforms to the state's special education program. For that work, he traveled around the state to hear parents' concerns about restraint and seclusion.

"It's really unbelievable, some of the things I've heard," said Calley, who has a daughter with autism spectrum disorder. "The anecdotal evidence was just piling up that it was much more common than anyone cared to admit.

Lanette Suarez writes at The University of Miami Law Review:

Students with disabilities, especially students of color with disabilities, are disproportionately subjected to restraints and seclusion, impeding their access to an inclusive education. Further, “[s]tudents with disabilities make up 19 percent of those who receive corporal punishment, yet just 14 percent of the nationwide student population.” According to the Department of Education Office for Civil Rights, students with disabilities are 12% of the student population, but 58% of those subjected to seclusion or involuntary confinement.Further, even though they constitute only 12% of
the student population across the United States, students with disabilities represent 75% of those who are subjected to physical restraints at school to immobilize them or reduce their ability to move freely.

Similarly, disabled African-American students represent 19% of students with  isabilities, but 36% of the students who are restrained at school by mechanical restraints or equipment designed to restrict freedom of movement. These numbers show the significantly disparate use of excessive force, restraints, and punishment skewed toward
disabled children and disabled children of color in particular.

Significantly, these numbers may be inaccurate because of a fundamental problem: lack of reporting. In 2012, there were 163,000 instances where students were restrained (physically held down) according to federal data. Also, in 2012, students were placed
roughly 104,000 times in scream rooms and there were 7,600 reports of students being placed in mechanical restraints like handcuffs or straps. However, there is reason to believe even more cases exist especially for children with autism or those experiencing emotional and behavioral issues. These students are either too young, distressed, or too limited in their ability to communicate what goes on in school. Children with disabilities are especially vulnerable because they often have a history of behavioral problems, which may undermine their credibility when reporting abuse. In other situations, the child’s increased agitation can cause a “more forceful and longer application of restraint until the child succumbs and sometimes stops breathing.”Furthermore, many school systems fail to report all incidents to the federal government: “Fewer than one-third of the nation’s school districts reported using restraints or seclusions even once during the school year.” Thus, the number of students with disabilities that are subjected to restraints and seclusion as punishment could be significantly higher. Reporting the incidents could be a way to have the essential information to ascertain the problems and attempt to find a meaningful solution.

Final Passage of Alabama Mandate

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

Brian Lyman reports at The Montgomery Advertiser:

The Alabama House of Representatives voted 103 to 0 early Thursday morning for a an amended version of legislation that would require insurers to provide the therapies for children 18 and younger. The final version was somewhat less than what supporters initially sought, and includes an exemption from the mandate for businesses that employ 50 people or less.

But Rep. Jim Patterson, R-Merdianville, the bill's sponsor, said after the 2:08 a.m. vote Thursday that it was an important first step in allowing families with autistic children access to critical treatment.

"It's hard to be against children who need help," he said. "103 votes, that's pretty strong."

The bill goes to Gov. Kay Ivey.

At oanow.com, Cynthia Williford reports that the legislation could help keep behavior analysts in the state:

For years, John Rapp, Auburn University’s applied behavior analysis program director, has seen students who get their masters leave Alabama for better, higher-paying or simply available, jobs. And those jobs are often in the 45 other states where insurance reform bills have passed.

“We like to try to recruit people outside Alabama to come to our program with the hope that they’ll stay, but, without gainful employment, they will gravitate to wherever the jobs are,” Rapp said, the director of one of the highest rated programs in the country. “Suffice it to say that Alabama has not been one of the higher paying regions. That has contributed to it, and again, where there’s a lot of demand, there’s an opportunity to pay better salaries.”

Odessa Luna, a board certified behavior analyst (BCBA) and doctoral candidate at Auburn, said she has trained and knows several who have found better jobs elsewhere. If the bill were to pass, Luna said it would be a “huge appeal” to BCBAs.

Alabama Senate Passes Autism Insurance Mandate

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

At The Alabama Media Group, Mike Cason reports that the Alabama Senate has passed an autism insurance mandate.

The Senate passed the bill by a vote of 33-1. That sends it back to the House, which had passed it 100-0 earlier.

If the House accepts changes made by the Senate, it could send the bill to Gov. Kay Ivey.
Rep. Jim Patterson, R-Meridianville, the sponsor of the bill, said he will ask the House to accept the Senate changes. Patterson said he expects that to happen on Wednesday.

Key Senate changes include making the mandate apply only to companies with at least 51 employees, making the mandate apply only to services for patients up to age 18 and delaying the mandate on public insurance plans until Dec. 31, 2018.

Patterson said he was disappointed in the delay for those plans but said overall the bill was a "victory." He said the advocacy group Autism Speaks, which has lobbied for the bill, urged him to accept the Senate changes.

Parents and advocates say applied behavior analysis can be a life-changing therapy for children with autism. But it's expensive and can be out of reach for parents if not covered by insurance.

Sen. Cam Ward, R-Alabaster, said the insurance mandate would mean that more families would be able to receive the therapy, which benefited his daughter, Riley.

A Fox Apology

In The Politics of Autism, I discuss depictions of ASD in popular culture.   

Fox News has had a lot to apologize for lately.  The latest, as Brad Reed reports at Raw Story:

Fox News contributor Tammy Bruce on Tuesday issued a formal apology for mocking an 8-year-old autistic child by calling him a “snowflake.”

“I am so sorry to the family,” Bruce began. “My intention was never to hurt a kid and his mom. We had absolutely no idea Michael was on the autism spectrum, and as a gay woman and feminist, I’ve spent most of my adult life working to improve the lives of woman and children, and those who are disenfranchised.”

Bruce also pledged in the future to stop attacking children for political purposes, regardless of whether or not they have autism.

Bruce first criticized the autistic boy after he approached Vice President Mike Pence and demanded an apology after Pence accidentally hit him in the face. At the time, Bruce mocked the boy because video seemed to show that Pence had barely made physical contact with him while he was attending an event at the White House.

“I guess we’re giving birth to snowflakes now, because that looked like that kid needed a safe space in that room,” she said during a segment with Fox host Bill Hemmer. “It is a bit, the eight year-old pretty much stalked the vice president afterwards. He wasn’t even — the headlines said he was ‘hit, he was struck, he was smashed, he was bumped.’ The fabric on his sleeve touched his nose maybe. He stalks the vice president, says, ‘you owe me an apology.'”

Snake Oil

In The Politics of Autism, I discuss autism quackery. 

 David Robert Grimes, an Oxford physicist, writes at The Irish Times:

For as long as people have fallen ill, there are those who hawk dubious elixirs bereft of efficacy. In the late 1800s, Clark Stanley amassed a fortune with such an ointment, allegedly drained from the skin of rattlesnakes – which, in reality, consisted primarily of mineral oil.

Since then, “snake-oil” has become a catch-all term for ostensibly medical but utterly ineffectual concoctions. Yet even now snake-oil treatments remain resolutely popular, ranging from the merely useless to the actively harmful. The single contemptible trait uniting these diverse cure-alls is that they are inevitably pushed most aggressively upon the desperate and vulnerable, such as those diagnosed with incurable diseases, chronic conditions or terminal illness.

Children with developmental disorders are frequently targeted with unorthodox wares. In particular, families of autistic children are mercilessly pursued by purveyors of snake-oil, with potentially deadly results.

Miracle Mineral Solution is but one example of this. The innocuously named MMS is a product created by Jim Humble, a one-time Scientologist who more recently styles himself as archbishop of the Genesis II Church of Health & Healing.

Mandate Bill Advances in Alabama

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

Ben Bullard reports at The Cullman Times:

The Alabama Senate will vote this week on a mandate for insurers to offer coverage for intensive applied behavioral analysis (ABA) therapy, Senate President Pro Tem Del Marsh (R-Anniston) has pledged.

“We will have all day Wednesday to have debate on that bill,” Marsh said last week. “Our intent is to get an autism bill to the governor.”

The bill would require some insurers to cover ABA therapy, an intensive treatment that can cost $100 per hour — out of financial reach for many families. Business and insurance groups have voiced opposition to the proposed mandate, citing cost concerns.

...
Hostilities erupted among senators last Wednesday, shortly after the Senate budget committee approved the bill on a 14-2 vote. Committee Chairman Sen. Trip Pittman (R-Montrose) — who says he’s worried about costs to Medicaid and other state insurance programs — said afterward that he might hold the bill in committee by not reporting it to the floor in order to negotiate for changes.

After pushback from other lawmakers, he relented, but criticized the idea of mandating new, yet-to-be-tallied expenses.

“At the end of the day, we have to be able to pay for the costs of this, and there are a lot of unknown costs,” he said.

Antivax Activists, Somali Minnesotans and Measles

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Helen Branswell reports at STAT:

As of Monday, there were 48 confirmed cases of the highly contagious — and potentially deadly — infection, all but two in children under the age of 10. Of the sick, 45 had not been vaccinated against measles. And 41 of the patients are Somali Minnesotans.

[Fatuma] Ishtar, a community outreach worker in Minneapolis, blames the anti-vaccination lobby. “They are everywhere. Like, every event, every forum,” she said. “They continue to push the community. I feel offended by this group.”

Michael Osterholm, former state epidemiologist, goes further. Actually, he uses the verb “exploit.”

“What they say is, ‘Remember, measles is just a five-to-seven-day disease. Autism is forever,'” he said. Osterholm, however, knows the dangers of measles. He was the state epidemiologist in 1990, when Minnesota had a large measles outbreak — 460 cases in Minneapolis and St. Paul.

Three children died.

Christopher Mele reports at The New York Times:

Mohamud Noor, executive director of the Confederation of Somali Community in Minnesota, said anti-vaccine activists had met one-on-one with families and had been more aggressive than public health educators in getting their message out.

Though the medical research has debunked the connection of vaccines to autism, the notion is deeply rooted in the community, Mr. Noor said on Friday, adding that the “main fight” was combating that perception.

The Washington Post reported Friday that the fear was so entrenched that parents in the community believe the risk of measles is preferable. The Post reported that one of the anti-vaccine movement’s founders, Andrew Wakefield, was among those who had met with the parents. Asked if he felt at fault for the outbreak, he replied: “I don’t feel responsible at all,” according to The Post.

In 2014, the United States had a record number of measles cases — 667 — since the disease was thought to have been eliminated in 2000. Nearly 400 of them occurred in unvaccinated Amish communities in Ohio.

"Ask an Autistic Person"

In The Politics of Autism, I write:

Arguing that autistic people themselves are the main stakeholders, groups such as ASAN have called for increasing this representation.[on IACC] They also argue that too much autism research spending goes to the “disease frame” and that no enough goes into improvement of services and the quality of life. In 2010, for instance, only 16 percent went to services and only 2 percent went to “lifespan issues” (e.g., the needs of adults on the spectrum).

John Elder Robison writes at STAT:

There’s a widespread view that autistic people need to “get scientists to listen to us,” and that “scientists need to stop ignoring autistic people.” That hasn’t been my experience at all. I first got involved with autism science when researchers from Harvard and the University of Washington tracked me down following the release of my first book and asked for my perspective on proposed work. Since then, autism scientists have welcomed me into their groups, answered my questions, sought my advice and paid attention to it.

Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.

A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.

Autism and Health

In The Politics of Autism, I discuss health care issues and state Medicaid services for people with intellectual and developmental disabilities.

A release from Autism Speaks:

Autism Speaks today issued the first in a series of annual, in-depth reports on special topics in autism. Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism gathers into one comprehensive report the most authoritative research and the latest guidelines on treatment and support of children and adults with autism spectrum disorder.

The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that often go hand-in-hand with autism. Those conditions include epilepsy, gastrointestinal distress (GI), sleep disturbances, eating and feeding challenges, attention deficit and hyperactivity disorder (ADHD), anxiety, depression, schizophrenia and bipolar disorder. These issues can extend across the life span.

While each new piece of high-quality research adds to our understanding of autism, it also adds to the complexity of developing the best practices to address the diverse needs of the autism community.

Health problems attributed to autism may instead be symptoms of a different condition - one that is treatable. For example:

• Children with autism are almost 8 times more likely than typical kids to have chronic GI distress. The report includes expert guidance on when to seek help for "picky eating," which could be a sign of GI problems.

• More than half of people with autism have sleep disturbances, which may contribute to daytime behavioral problems. A model parent-education program teaches autism-specific sleep guidelines.

• 30 to 60 percent of people with autism have symptoms of ADHD. Research shows that personalized treatment with cognitive-behavioral techniques adapted for autism may help.

The special report's Facts and Figures Supplement provides data on prevalence, screening and diagnosis, the cost of services and treatment, adult needs, and funding for research, among other categories.

"We now know more about autism than ever before, but each new piece of research paints an even more complex picture of the disorder," said Thomas Frazier, PhD, Autism Speaks chief science officer. "For the first time, our report pulls together the most up-to-date research on autism, and presents it in easy-to-understand terms. We hope people with autism, parents, communities, and health care providers will use this information to make the best possible decisions for their particular needs and to enhance the quality of life, now and in the future."

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Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism is available at http://www.autismspeaks.org/specialreport.