Biobank

The Politics of Autism includes an extensive discussion of scientific research.

Lisa Fine reports at KQED:

Thousands of Northern California families of children with autism are being recruited to join a new project to help scientists understand how heredity and environmental factors determine where each youngster falls on the spectrum of the disorder.‘Teasing apart the [autism] spectrum, we might makes some leaps forward.’

Kaiser Permanente aims to sign up 5,000 children and young adults with autism — along with their biological parents — to contribute a blood or saliva sample to a “biobank” that will enable researchers to track and identify common factors in various types of autism.

Kaiser Permanente has 3.8 million members in Northern California, with 17,000 children and adults diagnosed with autism. Because participating children are Kaiser health plan members, researchers plan to evaluate their health records in conjunction with the genetic samples in an effort to unlock insights into autism causes, best treatments, medications and possible prevention strategies.

“We have a really incredible population to study,” said Lisa Croen, director of the Kaiser Permanente Autism Research Program and a senior research scientist at the Kaiser Permanente Northern California Division of Research. “We have lots of information for them like lab tests, medications taken –- a huge wealth of clinical information. We have the ability to re-contact these families and collect even more.”

...
Since recruitment began in July, Kaiser has enrolled 270 families, health plan officials said.

“This resource can’t exist without families participating,” Croen said. “Hopefully, together we can all make a difference.”

Restraint and Seclusion in Arkansas

In The Politics of Autism, I write:

No federal laws specifically restrict restraint and seclusion in public and private schools and there are widely divergent laws at the state level [i] Thirty-two states require parental notification when disabled students are subject to these measures, but 18 states and the District of Columbia have no such protection.[ii] And even where notification laws are in place, compliance may be spotty.[iii] A U.S. Senate report offers some disturbing examples of alleged abuse:

• In December 2011, a Kentucky school district restrained a nine year-old child with autism in a duffel bag as punishment. The child’s mother witnessed him struggling inside the bag while a teacher's aide stood by and did nothing.
• In North Carolina, the mother of a five-year-old girl with autism and other developmental disabilities agreed to the use of restraints only in the event that her daughter became aggressive. [S]he discovered that her daughter had been left alone and strapped to chair, even though she had shown no signs of aggressive behavior. Although the mother believed her daughter was restrained over ninety percent of the time she was at school, the school denied restraining the child on a regular basis. The school eventually released records showing that the IEPs of multiple special education students did not accurately discuss the types of interventions being used or were otherwise incomplete.
• A behavior analyst in Connecticut recommended brief time-outs for an eight-year-old girl with autism and other disabilities. However, when the girl’s mother realized that the time-outs had escalated to repeated seclusion in a small cinderblock room, she requested that the school discontinue their use. The behavior analyst opted to continue the seclusion and the school supported this decision. The mother said that she felt “powerless” to stop them.

[i] U.S. Government Accountability Office, “Seclusion and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers,” GAO-09-719T, May 19, 2009.  Online: http://www.gao.gov/new.items/d09719t.pdf.[ii] Jessica Butler, “How Safe Is the Schoolhouse? An Analysis of State Seclusion and Restraint Laws and Policies,” Autism National Committee, January 20, 2014. Online: http://www.autcom.org/pdf/HowSafeSchoolhouse.pdf.[iii] U.S. Senate, Health , Education, Labor, and Pensions Committee, “Dangerous Use of Seclusion and Restraints in Schools Remains Widespread and Difficult to Remedy: A Review of Ten Cases:  Majority Committee Staff Report,” February 12, 2014. Online: http://www.help.senate.gov/imo/media/doc/Seclusion%20and%20Restraints%20Final%20Report.pdf.

Brian Fanney writes at Arkansas Online:

Autistic children are injured in Arkansas public schools because there are no mandatory guidelines on the use of restraints on students, advocates said recently.

Two lawyers -- one from a disability advocacy group and the other with a practice focused on special-needs children -- said Arkansas schools ignore voluntary state guidelines and don't always tell parents when children are restrained.

That can lead to dangerous situations for autistic children, in particular, because their behavior can be more difficult to manage, the lawyers told the Task Force on Autism at its Nov. 20 meeting at the state Capitol.

In one study, the U.S. Department of Education's office of civil rights said students with disabilities represent 12 percent of students in its sample, but nearly 70 percent of the students who are physically restrained by adults in their schools.

"We're seeing injuries of spiral fracture, kids getting injured, kids getting manhandled," said Debra Poulin, legal director at Disability Rights Arkansas. "We see all sorts of crazy things that you just wouldn't really believe."

Theresa Caldwell, a lawyer who specializes in special education law, said parents may not be aware that their children are being restrained. There's no law or regulation that requires schools to inform them, she said.

"There's absolutely no oversight so that means we don't know the number of autistic kids that have been physically restrained," she said. "We don't know how much it's happening. The schools themselves do not have to keep track of it."

Autism and Two-Year Colleges

In The Politics of Autism, I discuss  higher education, and adults on the spectrum.

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, for every student receiving special services, there are one or two on that same campus who have not come forward.

At Autism Research and Treatment, Anne M. Roux, Paul T. Shattuck and colleagues have an article titled: "Characteristics of Two-Year College Students on the Autism Spectrum and Their Support Services Experiences.  The abstract:

Approximately 80% of college-going youth with autism in the US attend a 2-year college at some point. These community-based, universally accessible institutions offer both academic and vocational courses and have experience in teaching diverse learners. This study used nationally representative survey data from the National Longitudinal Transition Study-2 to describe the characteristics and services experiences of adults with autism who attended postsecondary education after high school, focusing on those who attended a 2-year college. Over 60% of those who attended 2-year colleges had little to no trouble conversing or performing functional skills like counting change during high school, and extracurricular participation was common (93.8%). Most 2-year college attenders (85.7%) were able to navigate to places outside the home versus 43.9% of those with no postsecondary education. Over half took vocational courses at 2-year colleges, while one-quarter pursued academic study. Less than half (48.6%) of those who disclosed their disability to the school reported receiving services, accommodations, or other help. Most (87.3%) felt they received enough help, but fewer (68.0%) felt the services they received were useful. Future research should delineate specific needs of students with autism in 2-year college settings and identify what supports are needed to improve persistence and completion rates.

Students with Disabilities and Higher Education

In The Politics of Autism, I discuss  higher education, and adults on the spectrum.

By most measures of economic well-being, young college graduates surpass their peers with less schooling. And this disparity is greater than in earlier generations. To some extent, then, the fate of autistic people hinges on their ability to get college degrees. About a third of autistic high school graduates eventually go on to some kind of postsecondary education, at least for a while. That rate is higher than one might have expected years ago, but lower than for all other disability groups except intellectual disabilities or multiple disabilities. The numbers are increasing, largely because early identification and intervention have enabled autistic students to advance farther than before. “Behavioral therapy at an early age has really opened doors,” said a Ventura College instructor who has worked with ASD students for many years. The ABLE Act will also reduce some of the economic barriers to college attendance. Unfortunately, we know very little about autistic students’ completion rates or the quality of their education.

A news release from Senator Bob Casey (D-PA):

I join the Obama Administration and many of my colleagues in celebrating the 40th anniversary of the Individuals with Disabilities Education Act (IDEA). Before 1970, over one million students with disabilities were excluded from public schools. Thanks to the tireless work of advocates, today over six million children are served through special education programs in public schools.

While we take this week to celebrate the progress of students with disabilities, we cannot slow down. Although students with disabilities are seeing greater success in K-12, there are still many barriers in terms of ensuring a smooth transition to inclusive postsecondary education and employment. This week I sent a letter to the Department of Education requesting increased access to information and improved data collection for students with disabilities so there are fewer obstacles to success in college.

While the current online federal resources to help students navigate the college decision process are helpful, none exist for students with disabilities. By making small changes to the existing surveys from the Department of Education, we can help students and families access more information about disability services on campus.

Honest Talk about Optimal Outcomes

In The Politics of Autism, I talk about outcomes.

At The Cleveland Clinic, Thomas Frazier offers some honest observations on optimal outcomes:

What about the kids who lose an autism diagnosis and don’t get a new diagnosis? Did their autism go away? Those are big questions for parents.

We do see very rare cases of what researchers call “optimal outcome.”

Usually these are high-functioning children. They are diagnosed because of mild behavioral signs and symptoms. For example, they may be developing language or social skills slowly but still have strong ability to organize their world.

Eventually, often after a few years of therapy, they no longer fit the diagnosis. The study found this in about 3 percent of cases.

I don’t want to downplay these success stories. Helping kids improve is exactly what we want to do every day.

But I do must stress that it’s not the norm. Based on you child’s case — especially if the diagnosis came from a specialist — work with your care team to set realistic goals.

Unlawful Trade Practice in Oregon

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

At The Lund Report, Chris Gray reports that autism dad Paul Terdal has filed an unlawful trade suit against Kaiser Foundation Health Plan of the Northwest, arguing that the company is  a “healthcare services contractor” -- and so does not have immunity to Oregon's Unlawful Trade Practices Act.

Terdal told The Lund Report that he’s suing Kaiser because, prior to 2011, he paid for his sons’ autism treatment -- applied behavior analysis -- with cash, when his insurance policy and a 2007 state autism law should have required the healthcare organization to pay those claims. “We couldn’t get him as much as he needed,” Terdal said. The Portland father also took time off work to assist with his sons’ therapy needs.

“When my boys were diagnosed with autism in 2008 and 2009, Kaiser recommended ABA therapy – but informed me (incorrectly) that it wouldn’t be covered,” Terdal wrote in a follow-up email. “I’m asserting that Kaiser should reimburse my actual expenses for ABA therapy – and also for the amount that Kaiser should have been spending all along, but for its failure to comply with Oregon law and the terms of the contract.”

He’s also suing Kaiser for breach of contract, and said he has been working with the Insurance Division to resolve the disagreement, but filed the tort before the statute of limitations would have expired on the oldest claims, since the Insurance Division informed him they would not make a decision until next year.

Whether Terdal’s unlawful trade case gets anywhere in the courts is hard to say -- as far as he could tell, nobody has ever gone after a health plan like this before, but he said he got the idea from previous autism lawsuits, including the landmark federal ruling against Providence Health Plan -- which argued in the proceedings that, like Kaiser, it also was a healthcare services contractor and not an insurer.

Obesity

In The Politics of Autism, I discuss the health problems of people on the spectrum.

At Pediatrics, Alison Presmanes Hill, Katharine E. Zuckerman, and Eric Fombonne have an article titled "Obesity and Autism."  The abstract:

OBJECTIVE: Overweight and obesity are increasingly prevalent in the general pediatric population. Evidence suggests that children with autism spectrum disorders (ASDs) may be at elevated risk for unhealthy weight. We identify the prevalence of overweight and obesity in a multisite clinical sample of children with ASDs and explore concurrent associations with variables identified as risk factors for unhealthy weight in the general population.

METHODS: Participants were 5053 children with confirmed diagnosis of ASD in the Autism Speaks Autism Treatment Network. Measured values for weight and height were used to calculate BMI percentiles; Centers for Disease Control and Prevention criteria for BMI for gender and age were used to define overweight and obesity (≥85th and ≥95th percentiles, respectively).

RESULTS: In children age 2 to 17 years, 33.6% were overweight and 18% were obese. Compared with a general US population sample, rates of unhealthy weight were significantly higher among children with ASDs ages 2 to 5 years and among those of non-Hispanic white origin. Multivariate analyses revealed that older age, Hispanic or Latino ethnicity, lower parent education levels, and sleep and affective problems were all significant predictors of obesity.

CONCLUSIONS: Our results indicate that the prevalence of unhealthy weight is significantly greater among children with ASD compared with the general population, with differences present as early as ages 2 to 5 years. Because obesity is more prevalent among older children in the general population, these findings raise the question of whether there are different trajectories of weight gain among children with ASDs, possibly beginning in early childhood.

At The Portland Business Journal, Elizabeth Hayes reports:

As to why children with autism may be at elevated risk, future studies will have to answer that, Hill said.

“I think there are a few interesting avenues for future research,” Hill said. “There are definitely some possibilities we weren’t able to explore.”

Hill said there could be a biological basis, or perhaps behaviors associated with the condition lead to weight problems.

“Some symptoms that might be manifested, like social withdrawal and increased sedentary behaviors, may be exacerbating weight gain among these kids,” Hill said. “It might be children with autism have fewer opportunities for active social play and behavioral challenges. They may have preferences for foods that are energy dense but not nutrient dense, and they may be picky eaters.

ASD and Psychiatric Disorders

In The Politics of Autism, I write:

Autism often involves a range of other co-occurring conditions: intellectual disabilities (e.g., low IQ); delays in gross motor skills (e.g., walking, throwing) and fine motor skills (e.g., writing); attention problems and hyperactivity; anxiety; self-injurious behavior; unusual sensitivity to certain sounds, smells, or feelings; extreme food selectivity; and sleep disorders. For autistic people and their families, the co-occurring conditions may cause as much anguish as the autism itself.

...
Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs.Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

At The Washington Post, Lauren Swick Jordan writes about her son's struggles:

I know that many kids on the autism spectrum are diagnosed with at least one psychiatric disorder, and most are usually diagnosed with more than one.

With one in 45 kids on the autism spectrum, are our medical facilities prepared to care for the huge number of kids on the spectrum that will most likely seek help? Are there enough psychiatrists out there to help our kids in an emergency?

I’m scared that the answer for these questions is “no.”

TJ is too. And that’s why I’m writing this today with his permission.

“Maybe it can help another kid, mom,” he said.

I hope so, TJ.

Again, the Autism-Violence Myth

In The Politics of Autism, I write:

There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had.Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”

At The Mankato Free Press, [Mankato, Minnesota], Jessica Bies reports on the sentencing of a youth for a plan to commit violence at a local high school.

When law enforcement announced in April 2014 that a plan to detonate bombs and shoot staff and students at Waseca Junior-Senior High School had been narrowly averted, the community was duly shocked.

But maybe not as shocked as 25-year-old Wes Huntington of Le Sueur was a month ago when would-be attacker John LaDue's autism took center stage as an explanation for his sinister plot.

On the autism spectrum himself, Huntington was suddenly afraid. It was like Sandy Hook all over again.
...
Worried that the recent Waseca court case could prompt fear and rejection of those on the autism spectrum, local advocates are speaking out about how the media and legal system sometimes link the disorder with violent behavior.

Last month LaDue, the 18-year-old behind the plot, was sentenced to up to 10 years of probation and treatment at a secured autism facility in Georgia.

During LaDue’s sentencing, Judge Joseph Chase lay blame for the teen's plan with autism spectrum disorder.

“Because of ASD John LaDue is unable to relate to other people the way the rest of us do,” he said. “It is not that he will not; it is that he cannot. ASD prevents him, the experts are telling us, because of the way he is wired, from having — from experiencing true emotional responses to others the way that most of us do.”

But autism specialists say that statement is false, at least in part.

Karen Eastman, a professor at Minnesota State University specializing in autism spectrum disorder, said one myth about the disorder is that it prevents them from experiencing emotion.

“Another myth is that they don't care or don't have feeling for other people or they lack empathy,” she said. “But I have found them to be very caring people.”

The Health of Autistic Adults

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Shaun Heasley reports at Disability Scoop:

Researchers are warning that more attention needs to be paid to the overall health of adults with autism, with a new study finding them at greater risk for a host of maladies.

Adults on the spectrum have higher rates of health conditions ranging from seizure disorders and depression to hypertension, high cholesterol, allergies and anxiety, according to findings published recently in the Journal of General Internal Medicine.

“Although it has been extensively studied in children, little is known about health conditions in adults with autism,” said Robert Fortuna, an assistant professor of medicine and pediatrics in primary care at the University of Rochester Medical Center, who led the study. “Greater awareness is needed to ensure that adults with autism are treated for conditions that are more prevalent with autism as well as conditions that are commonly encountered with advancing age.”

Also at Journal of General Internal Medicine., Clarissa Kripke offers a capsule commentary:

State and federal policy prioritizes serving people with disabilities in the community as opposed to in institutions. But there has been little investment in developing the health services and trained workforce to deliver effective medical care in this setting. Many studies have shown that overall, community-based services and small, fully-integrated housing is superior to institutions in a variety of domains, including community participation, contact with family and community, and quality of life. However, the research is more mixed in the areas of medication, health, risks, and mortality. Social determinants of health and problems with access to medical, dental and behavioral health care contribute to health disparities.1 Fortuna and colleagues’ study expands our understanding of the health care and support needs of adults on the autism spectrum as they and their parents age. Autistic adults have higher rates of chronic medical conditions that require ongoing, medical attention, as well as significant, support needs for activities of daily living.2 Furthermore, most autistic adults live on their own or with family rather than in supervised residential settings. Due to advancements in federal Medicaid policy, the trend towards people with complex disabilities living in fully integrated homes will likely accelerate. The new Home and Community Based Settings regulation requires states to provide recipients of Medicaid-funded, long-term care with community options. Options must include the ability to choose service providers, housing, roommates and other relationships, supported employment in regular workplaces, and the ability to direct their own lives.3

Effective health care services and professional training requires the collaboration and leadership of autistic adults. To assist health care providers to serve the population, tools developed in collaboration with autistic adults have been developed by the Office of Developmental Primary Care (http://​odpc.​ucsf.​edu) and the Academic-Autistic Spectrum Partnership in Research and Education (http://​www.​autismandhealth.​org/​). Also, review articles on primary care of transition age youth and adults are available to help clinicians and health systems provide culturally competent services to reduce health disparities and improve access to care.4,5

1.Mansell J, Beadle-Brown J, Special Interest Research Group. Deinstitutionalization and community living: position statement of the comparative policy and practice special interest research group of the international association for the scientific study of intellectual disabilities. J Intel Dis Res. 2010;54(2):104–12.CrossRef2.Fortuna RJ, Robinson L, Smith TH, Meccarello J, Bullen B, et al. Health conditions and functional status in adults with autism: a cross sectional evaluation. J Gen Intern Med. 2015. doi:10.​1007/​s11606-015-3509-x.
3.Autistic Self-Advocacy Network. ASAN Toolkit on Improving Home and Community-Based Services (HCBS). Available at: http://​autisticadvocacy​.​org/​policy-advocacy/​policy-advocacy-toolkits/​hcbs/​. Accessed 8/26/15.
4.Nicolaidis C, Kripke C, Raymaker D. Primary care for adults on the autism spectrum. Med Clin North Am. 2014;98(5):1169–91.CrossRefPubMed5.Kripke CC. Primary care for adolescents with developmental disabilities. Prim Care. 2014;41(3):507–18.CrossRefPubMed

Police and Autism in Virginia

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

At WTKR-TV, Margaret Kavanagh reports:

Virginia Beach Police Department Lt. Shannon Wichtendahl has been on many calls for service involving people with autism.

“The challenge of going to a call for service with someone with autism is that there is no physical indicator to give us an idea that someone has that,” said Wichtendahl.
...
Michelle Hascall with the group Mea’Alofa Autism Support Center works to help children with autism in the community.

Hascall explains how people with autism differ greatly.

“It is a spectrum disorder so it can be a huge range, low functioning, high functioning, just a wide variety people and how autism manifests within those people can be very different.”

Experts say if a person with autism is involved in a crime or the victim of one - certain behaviors could be easily misinterpreted like avoiding eye contact.
...
Basic training manuals for police academies in Virginia mention autism several times – part of the lesson that falls under the mental illness overview–according to state police.

But advocates stress autism is not a mental illness.

“In treating it just like a mental illness, they are not taking into account the specific behaviors that we often see in individuals with autism. For example, the lack of language, the concern about children wandering to water, those types of things are very specific to autism.”

There is no doubt police are under extreme pressures, dealing with people with all sorts of conditions on a daily basis.

“I think they are doing the best that they’ve been trained to do , but we would just like to offer additional support to make it more effective,” said Hascall.

In The Politics of Autism, I write:

In response to such concerns, many police departments have trained officers and other first responders how to spot signs of autism and respond accordingly.[i] Some organizations have also published identification cards that ASD adults can carry in order to defuse potential conflicts. Virginia provides for an autism designation on driver licenses and other state-issued identification cards. Once again, however, the dilemma of difference comes into play. One autistic Virginian worries: “Great, so if I get into an accident, who’s the cop going to believe, the guy with the autistic label or the guy without it?” Clinical psychologist Michael Oberschneider is concerned about the understanding level of first responders: “I think many people still think of Rain Man or, more recently, the Sandy Hook Shooter, when they think of autism even though very few people on the autistic spectrum are savants or are homicidal and dangerous.”[ii]

---

[i] Mary Ann Spoto, “Autism Training For Law Enforcement In NJ Often Leads to Better Outcomes, Expert Says,” Newark Star-Ledger, March 18, 2014. Online: http://www.nj.com/union/index.ssf/2014/03/post_26.html.[ii] Greg Hambrick, “Recent Special `Autism’ Code on Virginia Driver’s Licenses and ID Cards Goes into Law: Helpful or Discriminatory for Individuals on the Autistic Spectrum?” Ashburn Patch, July 14, 2014. Online: http://patch.com/virginia/ashburn/recent-special-autism-code-on-virginia-drivers-licenses-and-id-cards-goes-into-law-helpful-or-discriminatory-for-individuals-on-the-autistic-spectrum.

Medi-Cal Requirements

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

David Gorn writes at California Healthline:

State officials last week released a draft of criteria for Medi-Cal beneficiaries to get autism therapy and children's advocates called the proposed requirements onerous and a barrier to accessing care.

The Department of Health Care Services released for public review on Nov. 12 a letter to managed care health plans that serve Medi-Cal beneficiaries.

The letter outlines the process for autism diagnosis and rules that need to be met in treating it. According to Julie Kornack, senior public policy analyst at the Center for Autism and Related Disorders, based in Woodland Hills, those requirements are excessive and will impede access to care for many of the estimated 75,000 Medi-Cal kids in California with autism.

"These are the most onerous [conditions] I've seen in the country because of the multi-disciplinary requirements," Kornack said. "For them to create administrative and diagnostic barriers, that's just putting up barriers to people who need services."
...
Advocates criticized several specific parts of the guideline, including:

• A lengthy diagnostic assessment needs to be completed for every Medi-Cal beneficiary of autism therapy, even if a child has already been diagnosed;
• The state wants an assessment by a speech pathologist and occupational therapist before treatment can begin;
• Therapy cannot be conducted in a school setting;
• A cap of 40 hours has been proposed for autism services, and any hours spent in school count against those hours; and
• Participating providers need to file a status update every month to managed care plans.

"That's ridiculous," Kornack said, adding that she doesn't know of any other mental health therapy that requires monthly evaluations. "The plans can ask for that information anytime they want," she said. "For them to require monthly reporting, it's just onerous and limiting and it's going to make providers not participate."

IEPs and FAPE

In The Politics of Autism, I devote a chapter to schools.

Michelle Diament reports at Disability Scoop:

Beyond offering a free appropriate public education, individualized education programs for students with disabilities should meet grade-level requirements, federal education officials say. 

In guidance released Tuesday, the U.S. Department of Education said that all IEPs should conform to “the state’s academic content standards for the grade in which the child is enrolled.”

 ...

According to the guidance, IEP teams must ensure that programs feature grade-level academics, but that instruction and support services are tailored so children can learn the material and progress toward achieving their individual goals.

There are caveats, however, for the “very small number” of students with the most significant cognitive disabilities, write Michael K. Yudin and Melody Musgrove from the Education Department’s Office of Special Education and Rehabilitative Services in their seven-page “Dear Colleague” letter. States are allowed to establish “alternate academic achievement standards” for these students.

Tech Employment -- But Not Just Tech Employment

In The Politics of Autism, I discuss employment of people on the spectrum.  

At The Hechinger Report, Arianna Skibell writes:

It’s not a pretty picture at the moment,” said David Kearon, director of adult services at Autism Speaks. “People with autism are quite capable of lots of different types of work, but they’re not given the opportunities.”
...
Kearon of Autism Speaks said it makes sense that some people with autism thrive in tech environments, which tend to be predictable, systematic and rule-based. But he also stressed that everyone on the spectrum is an individual, with individual interests and skills.

“The autism spectrum is so wide. We know people with PhDs who are mechanical engineers and doctors and professors,” he said. “We also know that there are a lot of people with autism who struggle with daily activities, getting themselves up and out of the house and living in a safe way.”

And not everyone on the spectrum likes technology. One young girl at the podcast workshop said she was only there because her parents had signed her up.
“I just like to shop online,” she said.

Stephen Shore, a professor at Adelphi University in New York who studies autism, said encouraging children on the spectrum to follow their own passions can have a positive impact — as it did for him.

It is important to open tech opportunities for people on the spectrum.  But it is mistake to think of ASD people only as techies.  Contrary to stereotype, people on the spectrum may have skills in music, art, and social sciences, among many other things. 

More on Prevalence

The previous post discussed a new study of autism prevalence. In The Politics of Autism, I write:

For all of our 21st century technology, autism is roughly where polio was a century ago. Before reliable lab tests were available, physicians could diagnose polio only by looking at symptoms. Because paralysis has many other causes (infections, injuries, tumors, toxins), doctors often mislabeled polio as something else, or vice versa.[i] Autism presents a similar muddle. “To diagnose autism reliably, we need to better understand what goes awry in people with the disorder,” writes Harvard biostatistician Nicholas Lange. “Until its solid biological basis is found, any attempt to use brain imaging to diagnose autism will be futile.”[ii] As the previous chapter noted, psychologists have to rely on questionnaires and observations of behavior. Therein lies a problem. Says Thomas Insel, director of the National Institute of Mental Health (NIMH):

Unlike our definitions of ischemic heart disease, lymphoma, or AIDS, the DSM diagnoses are based on a consensus about clusters of clinical symptoms, not any objective laboratory measure. In the rest of medicine, this would be equivalent to creating diagnostic systems based on the nature of chest pain or the quality of fever. Indeed, symptom-based diagnosis, once common in other areas of medicine, has been largely replaced in the past half century as we have understood that symptoms alone rarely indicate the best choice of treatment.[iii]

[i] Gareth Williams, Paralysed with Fear: The Story of Polio (New York: Palgrave Macmillan, 2013), 36.[ii] Nicholas Lange, “Perspective: Imaging Autism,” Nature 491 (1 November 2012): S17. Online: http://www.nature.com/nature/journal/v491/n7422_supp/full/491S17a.html.[iii] Thomas Insel, “Transforming Diagnosis,” National Institute of Mental Health Director’s Blog, April 29, 20913. Online: http://www.nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml.

Jessica Firger reports at Newsweek:

The CDC has been tracking incidences of ASD for the past two decades in a number of ways. In addition to administering an annual survey to parents, government health officials also collect data through the National Survey of Children’s Health and the Autism and Developmental Disabilities Monitoring Network. The former is also a parent-reported survey conducted by telephone, while the latter—the largest source, involving a sample size of 360,000 families—is based on clinicians’ reviews of medical and educational records. However, the review by clinicians is only based on data from 14 communities across the U.S., while the two surveys look at a national sample.

Changing diagnostic criteria can also affect reported rates of ASD. Prior to 2013, a patient could be diagnosed with autistic disorder, Asperger’s syndrome, childhood disintegrative disorder or a pervasive developmental disorder not otherwise specified. But clinicians found criteria for various diagnoses were not used consistently across the country, so in 2013 the Diagnostic and Statistical Manual of Mental Disorders was updated; now a patient is diagnosed with ASD, along with a severity based on a given scale.

“It is difficult to interpret trends in prevalence over time because of the possibility of ‘diagnostic substitution,’” the researchers wrote, “whereby labeling practices might change and cause similar symptoms to be classified under different disabilities during different time periods.”

New Prevalence Estimate: 1 in 45

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."

Emily Willingham writes at Forbes:

Is it vaccines? Air pollution? Infections?

Nope. The reason that the latest numbers for autism prevalence among US children have climbed traces largely to a simple change in how interviewers asked a question.

The US Centers for Disease Control and Prevention last conducted the National Health Interview Survey (NHIS) for the years 2011 through 2013. The 2014 survey, though, included a tweak, and that tweak is the reason that autism prevalence climbed from 1.25% to 2.24% in 2014. Not even the most die-hard causation theorist could argue that in a single year or handful of years, something environmental, like vaccines, caused a near-doubling of autism prevalence in children ages 3 to 17 years.

So what underlies the increase?

For the 2011-2013 survey, parents answered a series of three questions. The first asked if their child had intellectual disability. The second asked if their child had any developmental delay. And the third question listed several conditions, from Down syndrome to sickle cell anemia to autism spectrum disorder (ASD), and parents were asked if their child had been diagnosed with any of them.

But 2014 brought some tweaks, and those tweaks made a difference.

At CDC,  Benjamin Zablotsky and colleagues have the article: "Estimated Prevalence of Autism and Other Developmental Disabilities Following Questionnaire Changes in the 2014 National Health Interview Survey."  The abstract:

Objectives --The developmental disabilities questions in the 2014 National Health Interview Survey (NHIS) were changed from previous years, including question reordering and a new approach to asking about autism spectrum disorder (ASD). This report examines survey-based estimates of the lfetime prevalence of ASD, intellectual disability (ID), and any other developmental delay (other DD) following the inclusion of a standalone ASD question, the inclusion of specific diagnoses in the ASD question, and the ASD question preceding the other DD question, and compares them with estimates from previous years.

Methods—In NHIS, one child is randomly selected from each family to be  the subject of detailed questions on health conditions, functional limitations, and health care utilization. Parents are asked if a doctor or health professional had ever told them that their child had each of a series of developmental disabilities. Prevalence estimates of ASD, ID, and other DD for children aged 3–17 years were calculated using data collected in 2011–2014.

Results—The estimated prevalence of ASD based on 2014 data was 2.24%, a significant increase from the estimated annualized prevalence of 1.25% based on 2011–2013 data. In contrast, the prevalence of other DD declined significantly from 4.84% based on 2011–2013 data to 3.57% based on 2014 data. The prevalence of ID did not significantly change from 2011–2013 (1.27%) to 2014 (1.10%). The prevalence of having any of the three conditions was constant across survey years.

Conclusions—The revised question ordering and new approach to asking about developmental disabilities in the 2014 NHIS likely affected the prevalence estimates of these conditions. In previous years, it is likely that some parents of children diagnosed with ASD reported this developmental disability as other DD instead of, or in addition to, ASD. Following these changes, the 2014 ASD estimate was more similar to ASD prevalence estimates from other sources.

Florida Blue Denies ABA Coverage

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

In Tampa, Adam Walser reports at WFTS-TV that a Florida family has found that its costly Obamacare policy does not cover ABA:

Zack Connolly may look like most 12 year olds, but he struggles daily with autism.

“He's more like a 5 or 6 year old when it comes to reasoning, or things like that,” said Zack’s mother Cory Mohammed.
...
Zack's mom thought her son would be covered when her family purchased a $1,600 a month Florida Blue plan through an Affordable Care Act exchange.

“I have in my mind when I was sending it to them that we were going to start services, we're gonna get all these therapies, everything's gonna get better,” Mohammed said.

But those plans don't cover ABA.

Twenty-nine states have mandated that the therapy not only be provided by private insurance, but also under their healthcare exchanges. Florida does not.

Florida Blue issued the following statement concerning their plans’ coverage:

Florida Blue health insurance plans provide coverage for several Autism Spectrum Disorder treatments such as physical therapy, occupational therapy and speech therapy. Applied Behavioral Analysis (ABA) therapy is not covered by individual plans because it is considered experimental or investigational in the treatment of Autism Spectrum Disorder, as there is a lack of scientific evidence to draw conclusions as to the safety, efficacy or effects on health outcomes.

Florida Statute 627.6686 regarding health insurance coverage of individuals with Autism Spectrum Disorder does not pertain to plans offered in the individual market or any health insurance plan provided to a small employer.

As consumers shop for insurance during Health Insurance Marketplace open enrollment, we encourage them to contact us to help them research specific services, providers or medication they may need so they are fully aware of what is covered by the plans they are considering.

Paperwork on the Other Side of the Pond

In The Politics of Autism, I discuss red tape.  I also discuss the need for more study of the issue in other countries.

Crawley is a community in West Sussex, UK.  At Crawley News, autism mom Maria Cook writes:

A WEEK before we left for our wedding/holimoon in Jersey, a large, brown envelope from the Department for Work and Pensions dropped onto our doormat. My heart sank as I knew what was inside - Ryan's Disability Living Allowance renewal forms. This dreaded paperwork sends shivers right through me and every parent/carer that I know.

The document is 42 pages long, with a lot of specialist questions requiring very in-depth answers. There was no way I was even going to look at it until we got back home because of all the final preparation needed for the wedding and holiday, so I filed it at the top of my very extensive 'to do' list. And there it stayed for the rest of the school holidays, staring at me and I'm sure I could hear it keep whispering to me "Fill me in, fill me in, time is ticking. You don't want to lose Ryan's entitlement do you?"

No, of course not, but it's very time consuming and actually extremely depressing to complete and you need to be in the right frame of mind to tackle it, never mind the fact that Ryan requires 1:1 adult supervision at all times so I physically couldn't do it either.I psyched myself up to tackle it once Ryan was back at school and tackle it I did. I had to gather lots of evidence in the form of reports from professionals he is under and his current statement of special educational needs in order to back up the essays I wrote for every single question.

A report was also needed from 'someone that knows the child, asking how their condition affects them. I sent two, one by Ryan's previous teacher who knows him inside out and all of his complexities and one by my husband Lee, which was four pages long.
My answers to the questions amounted to an extra 14 pages on top of the 42 in the official renewal form. It was a mammoth task to complete and it actually took me THREE WEEKS to get it all done to my satisfaction, whilst the ironing pile resembled the Leaning Tower of Pisa and the housework was well overlooked.

A Center at Rutgers

In The Politics of Autism, I discuss  higher education, and adults on the spectrum.

A press release from Rutgers:

Rutgers is launching an initiative to establish a center that will provide adults with autism a unique opportunity to live and work independently within a university setting.

The Rutgers Center for Adult Autism Services (RCAAS), to be located in two buildings on the university’s Douglass Campus in New Brunswick, will offer up to 60 adults with autism, who are living off campus, with university jobs supported by clinical staff and graduate students. A second phase of the center will offer a pilot residential program for 20 adults with autism who will work on campus and live alongside Rutgers graduate students in an integrated apartment-style residence.

Key leaders in the private fundraising project are former CEO of Viacom, CBS and Sirius XM Radio Mel Karmazin and his daughter Dina Karmazin, executive director of the Mel Karmazin Foundation, in partnership with the Rutgers University Foundation. Dina Karmazin’s son, Hunter, was diagnosed with autism at age 2, and the Karmazin Foundation has been active in autism causes.

“The Rutgers center will offer adults with autism a one-of-a-kind support program that makes independent living and a fulfilling life possible,” said Mel Karmazin. “It will rise to the challenge of giving program participants the tools they need to achieve their potential – from earning a living to navigating social interactions to building meaningful relationships.”

...
Rutgers President Robert Barchi said the university intends to demonstrate how educational institutions can become part of the answer by providing a model that integrates academic research, student training and community inclusion of adults with ASD.
,,,
The new center will be led by the Graduate School of Applied and Professional Psychology, which provides leading education and hands-on clinical training opportunities for students working with those challenged by ASD. The university is also home to leading autism research facilities, such as Rutgers University Cell and DNA Repository, which contains the world’s largest collection of autism biomaterials, and the Douglass Developmental Disabilities Center, which includes an on-campus K-12 day school for children with autism from across New Jersey.

The goal of the RCAAS initiative is to raise at least $35 million to fund two buildings that would establish a centralized location for customized vocational and residential programs, student training and interdisciplinary research collaborations.

The first building, for which 50 percent of the funds have been raised, will house the workday program as well as staff offices, professional kitchen equipment, state-of-the-art computers, conference rooms and life skills teaching areas. It is slated to open fall of 2018. A second building nearby will accommodate 20 adults with ASD and 20 Rutgers graduate students living side by side. The apartment-style building will consist of one-, two-, three- and four-bedroom residences, each equipped with its own kitchen as well as dining, living and laundry rooms.

...
For more information, visit rcaas.rutgers.edu or contact info.rcaas@rutgers.edu.

Click here to watch Mel Karmazin discuss the initiative on CNBC

Research on Autistic Adults

In The Politics of Autism, I discuss  adults on the spectrum.

At The Journal of Autism and Developmental Disorders, Susan W. White and Antoinette Sabatino DiCriscio introduce a special issue on ASD in adulthood:

The two articles in the third domain concern intervention and service delivery, a sorely under-researched area in adulthood ASD (e.g., Howlin and Taylor 2015). Laugeson and colleagues reported outcomes from a randomized controlled trial of the social intervention program, PEERS for Young Adults (Laugeson 2014). Significant improvement on multiple indices of social functioning were reported as well as evidence for sustained effects 16 weeks after treatment completion. These findings, though preliminary, are crucial to our growing understanding of the malleability of the core social disability domain in ASD. Schall and colleagues compared adults who had completed an organized program (Project SEARCH) to those in supported employment settings who had not received any programming. The results of this novel study are illuminating: adults with ASD have the ability to secure and maintain paid employment when provided with intensive and personalized support. The authors offered suggestions for future research on promoting successful employment outcomes, such as intensive internship experiences that help prepare adults for the challenges and novelty of first-time employment, such as completing assigned tasks and managing potential interruptions or suspending interactions with others until tasks have been successfully completed.

In the final article, Zerbo and colleagues present findings of a study that directly speaks to the need for clearer, action-oriented public policy and improved training of providers. They found that physicians treating adults with ASD report having insufficient training and skills on how to best care for adults with ASD. One of the biggest areas of concern for providers is in how to effectively communicate with their adult patients with ASD.

The Disclosure Dilemma

In The Politics of Autism, I discuss employment of people on the spectrum. A recent study (see post for November 3) confirms what has long been obvious:  they face discrimination in hiring.

Jake Austin writes at The Sentinel (Carlisle, PA):

“Children with autism grow up to be adults with autism,” said Leslie Long, Vice President of Adult Services at Autism Speaks. “Core symptoms do not change, but people have to learn how to compensate for environmental changes as they get older.”
Unique challenges

But deficits become more noticeable as autistic young adults begin to adapt to the unpredictable professional and social demands of the “real” world; they begin to face external challenges unique to their disorder.

“With autism, as the individual gets older, their characteristics such as preservations [sic, perseveration] difficulty reading social cues and interactions as well as the expression of emotion become more noticeable than when that individual was much younger,” said Dr. Bernadette Cachara, a local psychologist. “As a child, many of their peers are also learning the art of social interactions; therefore, it may be less noticeable unless very extreme.”

Adapting to new social environments with their own requirements and expectations can be a daunting task for anyone. But for an individual with autism, the process begins with a crucial choice that will likely define his or her experience.

“Unfortunately, it’s a double-edged sword when you have a disability that may not be obvious,” Long said. “Some employers will discriminate (against autistic individuals) whether they realize they are being biased or not. So it becomes difficult for (an autistic) individual to choose between disclosing (his or her condition) and getting the support they need or hiding it without people knowing. That becomes an individualized choice.”

In The Politics of Autism, I write:

When paraplegics seek ramps to accommodate their wheelchairs, they can often count on the understanding of judges and juries. Autistic people, by contrast, have an “invisible” disability and the accommodations that they seek may seem odd to people unfamiliar with the condition. One autistic worker at a rehabilitation center refused to drive a company van because she smelled deodorant in it, which she could not stand. A supervisor scolded her, and the resulting argument led to her firing. A court found that the altercation was a personality clash and that her sensory issues did not result in a substantial limitation under the Americans with Disabilities Act. Legal expert Daniela Caruso writes: “It is clear that autism advocacy has changed the judicial discourse on autism, but the reality of integrating this particular disability in the workforce remains plagued by the endemic fuzziness of ADA standards, exponentially complicated by the fuzziness of autism science itself.”

The Problem with the "Spectrum" Metaphor

Uncertainty is a major theme of The Politics of Autism.  Here is how I start chapter 3:

If we can land a man on the moon, why can’t we cure autism? Frustrated parents may ask that question, remembering that when John F. Kennedy committed the United States to go to the moon, NASA scientists and engineers figured out how to get there. Ever since Neil Armstrong stepped off the lunar module in 1969, politicians have held up the Apollo project as a model for solving all kinds of problems. But autism is not rocket science. Contrary to the usual meaning of that expression, I hardly suggest that autism science is simple; rather, it is more puzzling than rocket science.

When the moon program was getting under way, there was consensus about the fundamental terms and facts. Although the engineering details were challenging, the basic math and physics behind the mission dated back to Isaac Newton. Autism is different. As we have already seen, it is a contested concept with many uncertainties. Just picture an Apollo program in which experts saw different kinds of moons in different parts of the sky and were not quite sure about the laws of motion.

Rose Eveleth writes at The Atlantic:

Charting where an individual falls on the autism spectrum, though, is nearly impossible. I know because I recently tried to figure out how to do it. After talking to doctors, epidemiologists, self-advocates, and anthropologists, I learned that the more you try to pin down what the autism spectrum actually looks like, the looser your grasp on it will become.

The terms “high-functioning” and “low-functioning” have no medical meaning. Nearly every expert I talked to referenced a common mantra in autism: When you’ve met one person with autism, you’ve met one person with autism. Which sounds nice, but is not particularly helpful when looking for meaning.

“With the spectrum, there’s a wide range, we’re still trying to figure out what that wide range means,” said Stephen Edelson, the director of the Autism Research Institute. “I don’t have a great answer. Scientific understanding of autism certainly continues to evolve,” said Paul Wang, the head of medical research at Autism Speaks. “I think there’s no one continuum necessarily,” says Lisa Gilotty, the autism-spectrum-disorders program chief at the National Institute of Mental Health. “It’s hard because ... different people will break that up in very different ways, I’m not sure any of those ways are accurate.”

“It’s almost like if you look in the stars in the sky and say, ‘Oh, there’s Orion’s belt. And oh, there’s the Big Dipper.’ You could also look at the stars and say they cluster a different way. And I think that’s still where we are with autism,” said Jeffrey Broscoe, the director of the population health ethics department at the University of Miami.

Autism and College

In The Politics of Autism, I discuss the growing number of college students on the spectrum:

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, for every student receiving special services, there are one or two on that same campus who have not come forward.

Back in May, Noel Murray wrote at Vox about the challenges facing autistic college students and their families:

The exact number of men and women on the spectrum attending college today is hard to pin down, because there are few incentives at the moment for those students to register with disability services. Circa 2008, autism researchers estimated that anywhere from 1 to 2 percent of the university population had autism, Asperger's, or some pervasive developmental disorder. Autism spectrum diagnoses have only risen since then.

Jane Brown, co-director of the organization College Autism Spectrum, described the big problem with how students on the autism spectrum transition from high school to college: "Up through high school, parents are advocates and CEO of their child's education."

But not only are universities not inclined to allow parents to stay in that driver's seat, they're legally bound in some cases to shut parents out. Under the Family Educational Rights and Privacy Act, once students turn 18, they become the stewards of their own records, from grades to whatever special learning tools and accommodations they might request.

In high school, the laws are geared toward making sure that all children, regardless of any disability, have a right to "a free and appropriate education in the least restrictive environment." Colleges are under no such obligation to make sure students learn and thrive. They have to provide certain resources for people on the autistic spectrum, but it's not their responsibility to make sure those resources get used.

In Dubuque, KCRG-TV reports:

Loras College is starting to take student applications for next fall for the new Connections Academy Program. That’s a four year program that keeps students with autism in a college classroom with other students. But, the program helps these students to be able to handle the social and academic sides of college life.

Faculty at Loras say they wanted to start the program because there has been an increase in the number of children diagnosed with autism.

A 2010 report by the Centers for Disease Control shows that one in 68 children have autism. The number of children and teens with developmental disorders like autism is up 17 percent since the mid-1990s.

“Years ago students who have Autism were told they weren’t college material,” Lynn Gallagher, Connections Academy Director, said.

Starting next fall, students in the Connections Academy will be assigned a peer mentor and a faculty advisor.