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Friday, November 27, 2015

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.

Thursday, November 26, 2015

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.

Wednesday, November 25, 2015

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.

Tuesday, November 24, 2015


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.

Monday, November 23, 2015

ASD and Psychiatric Disorders

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.
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.

Sunday, November 22, 2015

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.”

Saturday, November 21, 2015

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