Mandate Limits

In The Politics of Autism, I write about the limits of insurance mandates:

There are no exact figures available, but suppose that we take the total number of autistic people and subtract the following:

• Those in states without mandates;
• Those who live in states with mandates but are under exempt, self-funded plans;
• Those with individual and small group policies to which post-2011 mandates do not apply, and
• Those who have already gone over the various limits and caps.

The remainder surely makes up a minority of the autistic population.  

Sarah Ovaska-Few writes at North Carolina Health News:

When North Carolina passed a 2015 law requiring health insurance companies to cover specialized therapies for children with autism, families with affected children rejoiced at the news.

But more than two years after the mandate became law, some families are no closer to getting access to the intense treatments that can cost upwards of $40,000 a year.osed with autism several years ago. Since then, her parents have been trying to get their insurance to pay for applied behavioral analysis, or ABA therapy for her without success.

“I haven’t met anybody who is actually affected by the law,” said Abegail McGrew, a Huntersville mother whose 5-year-old daughter was diagnosed two years ago with autism. “I don’t know what they wrote it for.”
...
The mandate, as passed, would require insurance plans regulated in North Carolina to provide up to $40,000 annually of adaptive behavior therapies for those under 18 and on the autism spectrum. Co-pays and deductibles would still apply, so those with a $5,000 deductible or co-pays for individual sessions would still be on the hook for all those costs.

The plans that fall under the ABA mandate include companies with 50 or more employees, and who have health plans that operate only in the state of North Carolina, said Jennifer Mahan, public policy director for the Autism Society of North Carolina, one of the advocacy groups that pushed for the 2015 law.

But those make up only about 10 to 15 percent of the health care plans operating in the state, with large employers often utilizing different types of health care plans, Mahan said.

The state “doesn’t control a lot of the health plans out there, the federal government does,” she said.

Not included in the mandate are plans adopted by out-of-state companies or those with fewer than 50 employees. Also exempted are self-funded plans, where a company pays all the health care costs of their employees, while the insurance company only administers the plan as instructed. Self-funded plans are preferred by many employers because they have more control over what is offered, and in the long run, it can cost less or provide better coverage for employees

.

Outcomes-Based Financing

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Christina Samuels at Education Week:

Many school-focused "pay for success" funding models—a term for private investment in public programs with the prospect of financial gains—have to date focused on reducing a school district's special education costs.

For example, investors may pay for preschool programs aimed at children from low-income families, who have a higher likelihood of being identified with disabilities. The fewer children who are identified, the more a district "saves"—and a portion of those unspent funds is returned to investors.

But is holding down special education enrollment the only goal that pay-for-success programs, also called social impact bonds, should aim for?

Rather than envisioning special education solely as a placement to avoid, pay-for-success models offer an opportunity to support special education in other ways, says a brief from the Institute for Child Success, a South Carolina-based research and policy organization.

From Megan Carolan and Bryan Boroughs, "Opportunities for Special Education and Early Intervention in Pay for Success," Institute for Child Success, March 2018:

For example, Learning Experiences and Alternative Program for Preschoolers and Their Parents (LEAP) has been found to have positive impacts for students with autism as well as their peers who do not have autism. This model, which enrolls preschoolers with autism in inclusive classrooms, utilizes several unique adjustments to meet the needs of its students. Typically-developing peers receive training on communicating and interacting with their classrooms who are on the autism spectrum. Teachers receive written materials and in-person training to collect data on children’s generalized behavioral changes, adjusting the intervention based on what is indicated. Families of children who are on the autism spectrum receive training in strategies to teach behaviors.40 The rigorous research conducted on this intervention makes it an intriguing candidate for consideration in a PFS project. When compared to “business as usual” classrooms, LEAP is linked with a reduction in autistic symptoms after two years of the intervention, as well as progress on intellectual and language measures; typically  developing children also benefit in terms of improved social skills and reduced disruptive behaviors, and experience no negative outcomes from the program.41 Maintaining a student’s enrollment in an inclusive classroom may itself be worth considering as an outcome, as it is less expensive than separate classrooms and it is linked to academic and social benefits for students who may otherwise be placed in separate classrooms. Participating families also benefit, as adults show fewer signs of significant stress and depression following the program. While the program has not currently been considered for feasibility as a PFS project, it is one promising example of how outcomes-based financing can be used to expand programs that work for children with disabilities – not just to look at outcomes.

40. U.S. Department of Education, Institute of Education Sciences, What Works Clearinghouse. (2012). WWC review of the report: Randomized, controlled trial of the LEAP model of early intervention for young children with autism spectrum disorders. Retrieved from http://whatworks.ed.gov.
41. Strain, P.S. & Bovey, E.H. II. (2011). Randomized, controlled trial of the LEAP model of early intervention for young children with autism spectrum disorders. Topics in Early Childhood Special Education, 31(3) 133–154. Retrieved from: http://journals.sagepub.com/doi/abs/10.1177/0271121411408740?journalCode=teca

Trump's Attitude Toward Disabled People

 In The Politics of Autism, I discuss the issue's role in campaign politics.   In the 2016 campaign, a number of posts discussed Trump's bad record on disability issues more generally.   As his actions as president indicate, he has little use for Americans with disabilities.

In welcoming the US Olympic team to the White House yesterday, Trump said:

So today, on behalf of the United States, I want to thank every Olympian and Paralympian. And what as just incredible. And what happened with the Paralympics was so incredible and so inspiring to me. And I watched — it’s a little tough to watch too much, but I watched as much as I could.

Trump thinks it's "tough to watch" disabled people play sports.  This comment is the latest sign of his aversion to people with disabilities.

On November 26, 2015, Jose A. DelReal at The Washington Post:

On stage Tuesday, Trump berated Times investigative reporter Serge Kovaleski for his recent recollection of an article he had written a few days after the [9/11] attacks. Trump appeared to mock Kovaleski's physical condition; the reporter has arthrogryposis, which visibly limits flexibility in his arms.

“Now, the poor guy — you've got to see this guy, ‘Ah, I don't know what I said! I don't remember!' " Trump said as he jerked his arms in front of his body.

On August 3, 2015, Celeste Katz wrote at The New York Daily News:

"While disabled veterans should be given every opportunity to earn a living, is it fair to do so to the detriment of the city as a whole or its tax paying citizens and businesses?" Trump wrote in a 1991 letter to John Dearie, then-chairman of the state Assembly's Committee on Cities.

"Do we allow Fifth Ave., one of the world's finest and most luxurious shopping districts, to be turned into an outdoor flea market, clogging and seriously downgrading the area?" Trump demanded.

New York's original peddling exceptions for veterans date back to 1894 — created to give those disabled during the Civil War a chance to support themselves.

In 2004, when the regulations had come up for renewal, Trump piped up again.

On December 19, 2000, Heidi Evans reports at The New York Daily News: 

Even when it comes to a sick baby in his family, Donald Trump is all business. The megabuilder and his siblings Robert and Maryanne terminated their nephew's family medical coverage a week after he challenged the will of their father, Fred Trump. "This was so shocking, so disappointing and so vindictive," said niece Lisa Trump, whose son, William, was born 18 months ago at Mount Sinai Medical Center with a rare neurological disorder that produces violent seizures, brain damage and medical bills topping $300,000. The Trump family feud has come to light in recent days as the dispute over Fred Trump's estate is being played out in Queens Surrogate Court. The patriarch left between $100 million and $300 million, according to different family estimates. A separate case over the denial of medical coverage that Fred Trump freely provided to his family for decades was filed in Nassau Supreme Court. Both lawsuits were filed by Fred Trump 3rd and Mary Trump, the children of Donald's late brother, Fred Jr. They offer a rare window into one of New York's most prominent families, a world where alliances and rivalries are magnified by power, money and the tough-nosed tactics of Donald Trump. "When [Fred 3rd] sued us, we said, 'Why should we give him medical coverage?'" Donald said in an interview with the Daily News last week. Asked whether he thought cutting their coverage could appear cold-hearted, given the baby's medical condition, Donald made no apologies. "I can't help that," he said. "It's cold when someone sues my father. Had he come to see me, things could very possibly have been much different for them."

The parents sued.  Although Trump claimed that he never settles lawsuits, that was a lie.  He settled.  William is still alive, and has cerebral palsy.

Autism Prevalence and New Jersey

 In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence.

A release from Rutgers:

A new report by the Centers for Disease Control and Prevention (CDC), which uses research by Rutgers University, shows a significant increase in the estimated percentage of 8-year-old children with autism spectrum disorder (ASD) in the United States.

The report, released April 26, found that one in 59 children had autism, up an average of 15 percent from two years ago, in the 11 states included in the study. New Jersey's rate was the highest of the states studied - one in 34, up 19 percent from two years ago. That puts the national rate of autism at 1.7 percent of the childhood population and New Jersey's autism rate at 2.9 percent.

New Jersey is known for excellent clinical and educational services, so higher rates of autism in New Jersey are likely due to more accurate or complete case finding.

Walter Zahorodny, an associate professor of pediatrics at Rutgers New Jersey Medical School who directed the New Jersey portion of the study, called the results "consistent, broad and startling." He said the analysis shows U.S. autism rates are continuing to rise rather than leveling off as the 2016 CDC report suggested. "It is now clear that what we saw in 2016 was just a pause along the way. It remains to be seen at what point ASD rates will plateau," he said.

Zahorodny joined researchers in Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, North Carolina, Tennessee and Wisconsin in analyzing information collected from the health and special education records of 325,483 children who were 8 years old in 2014. They used the guidelines for ASD in the fourth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders for their primary findings, but also reported ASD estimates according to the definition provided in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders.

Across the network, the researchers found the prevalence of ASD ranged from a low of 13.1 per 1,000 children in Arkansas to a high of 29.3 per 1,000 children in New Jersey. ASD is four times more common among boys than among girls and white children are more often diagnosed with ASD than black or Hispanic children.

Although the estimates are not representative of the country as a whole, they are considered the benchmarks of ASD prevalence, Zahorodny said.

The researchers can't explain why autism rates have been increasing across the United States. Factors associated with a higher risk of autism include advanced parental age - children of parents over 30 have heightened risk, which increases with parental age - maternal illness during pregnancy, genetic mutations, birth before 37 weeks gestation and multiple birth.

"These are true influences that are exerting an effect, but they are not enough to explain the high rate of autism prevalence," said Zahorodny. "There are still undefined environmental risks which contribute to this significant increase, factors that could affect a child in its development in utero or related to birth complications or to the newborn period. We need more research into non-genetic triggers for autism."

Children who are diagnosed early often respond better to treatment, said Zahorodny, who notes the average age of diagnosis - 53 months - has not changed in 15 years.

"Despite our greater awareness, we are not effective yet in early detection," he said. "Our goal should be systematic, universal screening that pediatricians and other health providers provide at regular visits starting at 18 months to identify ASD as soon as possible."

One in Fifty-Nine

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

From the Centers for Disease Control and Prevention:

About 1 in 59 eight -year-old children in 11 communities across the United States were identified as having autism in 2014, according to a report published today in CDC’s Morbidity and Mortality Weekly Report (MMWR) Surveillance Summary.

The data in this report come from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network – a tracking system that provides estimates of the prevalence and characteristics of autism spectrum disorder among more than 300,000 8-year-old children. ADDM is the largest population-based program to monitor autism and the only autism tracking system that examines health and education records.

The latest estimate of 1.7 percent (1 in 59) is higher than the previous ADDM estimate released in 2016, which found a prevalence of 1.5 percent or 1 in 68 children. Some of the change in prevalence could be due to improved autism identification in minority populations – although autism is still more likely to be identified in white children than in black or Hispanic children. This identification is important, because children identified early with autism and connected to services are more likely to reach their fullest potential.

“Autism prevalence among black and Hispanic children is approaching that of white children,” said Stuart Shapira, M.D., Ph.D., associate director for science at CDC’s National Center on Birth Defects and Developmental Disabilities. “The higher number of black and Hispanic children now being identified with autism could be due to more effective outreach in minority communities and increased efforts to have all children screened for autism so they can get the services they need.”

The Autism and Developmental Disabilities Monitoring Network estimates are combined from 11 communities within Arizona, Arkansas, Colorado, Georgia, Maryland, Minnesota, Missouri, New Jersey, North Carolina, Tennessee, and Wisconsin. The 11 communities surveyed in this report represent about 8 percent of 8-year-old children in the United States.

Estimates of autism varied widely among the 11 communities in this report, although five reported similar estimates of 1.3 percent to 1.4 percent. The highest prevalence estimate of 2.9 percent came from a community in New Jersey. Some of the regional differences in autism prevalence estimates among the 11 communities might be due to differences in how autism is being diagnosed and documented.

More work needed to identify autism early in life

The data demonstrate that more work needs to be done to identify children with autism at a younger age and refer them to early intervention:

• Fewer than half of the children identified in the Autism and Developmental Disabilities Monitoring Network received their first autism diagnosis by the time they were 4 years old.
• Although 85 percent of children with autism had concerns about their development noted in their health records by the time they were 3 years old, only 42 percent received a developmental evaluation by that age.
• This lag between first concern and first evaluation may affect when children with autism can begin getting the services they need.

“Parents can track their child’s development and act early if there is a concern.

Healthcare providers can acknowledge and help parents act on those concerns. And those who work with or on behalf of children can join forces to ensure that all children with autism get identified and connected to the services they need as early as possible,” said Dr. Shapira. “Together we can improve a child’s future.”

CDC’s efforts to track autism and promote early identification

The next ADDM report will add data for children who were 8 years old in 2016 and help us better understand whether autism prevalence is changing and whether improvements are being made in early identification of autism. The Autism and Developmental Disabilities Monitoring Network is not a representative sample of the United States, but is a detailed look at autism in these specific communities. For more information about CDC’s autism activities visit www.cdc.gov/Autism.

CDC’s Learn the Signs. Act Early program provides parents, childcare professionals, and healthcare providers free resources, in English and Spanish, for monitoring children’s development. The program offers parent-friendly, research-based milestone checklists for children as young as 2 months of age. CDC’s Milestone Tracker Mobile App can help parents track their child’s development and share the information with their healthcare providers. For more information visit www.cdc.gov/ActEarly.

Eugenics and Forced Sterilization

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.  Though it is hard to know for sure, it seems likely that some of those subjected to forced sterilization were autistic.

A release from CA State Senator Nancy Skinner:

Reflecting a recently released study in the American Journal of Public Health on the history of forced sterilizations in California and the disproportionate impact on women and Latinas, Senator Nancy Skinner (D-Berkeley) has introduced legislation that would fund a state program to compensate survivors who were involuntarily sterilized during their institutionalization at a state mental hospital.

“We can never fully make up for California’s forced sterilizations—since so many who were hurt are no longer with us,” said Skinner. “But for those still alive, we can do better by finally providing restitution.”

SB 1190 requires California to identify and compensate survivors who were sterilized as a result of their being a ward of a state mental hospital, comparable to programs now established in both North Carolina and Virginia. Sterilization victims still alive would be allowed to submit claims; if the claimant passed away before authentication of the application, restitution would be provided to a designated beneficiary. Additionally, the bill requires commemorative plaques to be placed at the locations of state hospitals where sterilizations took place.

California’s “Eugenics” law was passed in 1909 and authorized sterilization surgery for people deemed to have a "mental disease, which may have been inherited." The law was not confined to mental illness as defined today, but rather was applied to people the state deemed as not ‘conforming to societal norms’ including people who were gay, poor, physically disabled, or didn't speak sufficient English. Records show that over 20,000 people were forcibly sterilized from the time the law passed until 1979 when it was repealed, more than any other state and roughly a third of all such sterilizations in the U.S. Most, but not all, of California’s forced sterilizations were done on people held in state mental hospitals, with the sterilization often required as a precondition for release.

While forced sterilization affected people of all genders and ethnicities, women and Latinas were especially impacted. Archived records show that Latinas were 59 percent more likely to be sterilized; and of the estimated 700 forcibly sterilized Californians who are still alive, 62 percent are women.

“For 70 years California sterilized individuals the State deemed unfit to have children,” said Skinner. “With this program, we can shed light on something that should never have happened, and offer some small solace to the people affected.”

Violence and Autism

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.”

Laurie Monsebraaten at The Toronto Star:

Reports the man connected to Monday’s van rampage on Yonge St. may suffer from Asperger syndrome, have shaken advocates in Ontario’s autism community.

Asperger syndrome has been associated with autism spectrum disorder, a complex neuro-biological disorder that affects the ability to verbalize thoughts, manage anxiety, cope with changes to routine and participate in unstructured social situations. Symptoms also include repetitive behaviours and fixations.

But violent behaviour is not typically associated with the disorder, said Margaret Spoelstra executive director of Autism Ontario.

“Autism and mental health (problems) are not synonymous. Autism is a neuro-biological disorder. But it is not about violence,” she said Tuesday. “Autism is not the reason someone gets behind the wheel of a van and plows through a crowd of people.”

Alek Minassian, 25, of Richmond Hill, is alleged to have been behind the wheel of a white rental van that struck pedestrians at Yonge St. and Finch Ave. He is facing charges in the deaths of 10 people, and attempted murder charges for 13 others who were injured.

In 2009, the Richmond Hill Liberal quoted Minassian’s mother Sona in a story about the loss of Helpmate, a local social service organization that helped her son, who she said has Asperger syndrome. The story did not name the son.

Civil Rights Data from the Department of Education

In The Politics of Autism, I discuss the educational and civil rights of people with autism and other disabilities. 

From the Department of Education:

The U.S. Department of Education's Office for Civil Rights (OCR) today released the 2015-16 Civil Rights Data Collection (CRDC). This data, which is self-reported by 17,300 public school districts and 96,400 public schools and educational programs, is collected and published biennially by OCR. 

Since 1968, the federal government has collected civil rights data about schools. For the first time, the 2015-16 CRDC report includes comprehensive data regarding incidents of criminal offenses in our nation's public schools. It also includes several new categories of data on Science, Technology, Engineering and Mathematics (STEM) course taking.

...

The Department used CRDC data to produce topic-specific data briefs on two major topics: STEM Course Taking and School Climate and Safety.

The full CRDC data set is available at: https://www2.ed.gov/ocr/docs/crdc-2015-16.html

Students with disabilities made up 12 percent of student enrollment. The School Climate and Saftey brief reports they accounted for

• 28 percent of students referred to law enforcement or arrested,
• 71 percent of all students restrained and 66 percent of all students secluded,
• 26 percent of students who received an out-of-school suspension,
• 24 percent of students who received an expulsion.

Funding Kevin and Avonte's Law

The Politics of Autism discusses the problem of wandering, which has been the topic of legislation before Congress.

Hannah Lang at Disability Scoop:

Kevin and Avonte’s Law is set to provide $2 million annually through 2022 for grants to local law enforcement and nonprofit agencies. These grants can be used to purchase electronic tracking devices for families of those at risk for wandering, or for education, training, notification systems and resources to better address the issue.

However, communities will only be able to take advantage of the grants if the law is financed. Its passage with the federal spending package only authorized the legislation to be funded, but did not provide a source of funding.

...
Advocates are hoping that the U.S. Department of Justice will allocate discretionary funds toward Kevin and Avonte’s Law so that the program can start this year.

“We’re looking for funds that may exist that have yet to be tapped, so we’re going to be trying to reach out and find out if there are any uncommitted funds that could be tapped for this program,” said Stuart Spielman, senior policy advisor and counsel for Autism Speaks.

DeVos and Disability

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.

Erica L. Green at NYT  reports on a new protocol at Education's Office for Civil Rights that provides for dismissal of civil rights complaints.

Department officials said the new policy targeted advocates who flooded the office with thousands of complaints for similar violations, jamming its investigation pipeline with cases that could be resolved without exhausting staff and resources. But civil rights advocates worry that the office’s rejection of legitimate claims is the most obvious example to date of its diminishing role in enforcing civil rights laws in the nation’s schools.

Liz Hill, a spokeswoman for the Education Department, said the new provision was part of the office’s revision of its manual that lays out procedures for processing civil rights cases.

One of the "frequent lilers" is Marcie Lipsitt.

In the last two years, Ms. Lipsitt, a disability rights advocate in Michigan, has filed more than 2,400 complaints with the office against schools, departments of education, colleges and universities, libraries and other educational institutions across the country that have websites that people who are deaf or blind or who struggle with fine motor skills cannot navigate.

“No one even knew about this issue until I started filing,” Ms. Lipsitt said. “I didn’t want to get anybody in trouble. I just wanted to raise awareness.”

She has secured more than 1,000 agreements with institutions that committed to bringing their websites into compliance with the Rehabilitation Act of 1973, which prohibits discrimination against people with disabilities and requires that electronic and information technologies be accessible to them.

 In recent weeks, Ms. Lipsitt said, she has received notice that more than 500 cases, including active and open investigations, were dismissed. Each letter cited the new provision as the reason. The department will instead work with colleges on complying with web accessibility laws.

Mark Keierleber at The 74:

Since OCR updated its rules on March 5, more than 550 pending civil rights investigations that stemmed from Lipsitt’s complaints have been dismissed, she said, and about 100 new complaints have been dismissed.

Under the new rules, the Education Department dismissed a civil rights investigation against the Western Michigan Aviation Academy, a charter high school located at the Gerald R. Ford International Airport near Grand Rapids. That school was founded in 2010 by Dick DeVos, the husband of Education Secretary Betsy DeVos. Hill, the department spokeswoman, did not respond to questions about the episode.

Waiting in Vegas

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

At The Las Vegas Review-Journal. Jessie Becker writes about long wait times in the Las Vegas Valley

"Now it's wait to get in and see the pediatrician, to get the referral to go to the neuropsychologist, to do those visits, to get the referral to go back and put him on these wait lists and hope that one of them comes through," said Jason's mom, 44-year-old Rhonda Sebron, describing the steps both their insurance company and service providers require to cover an autistic child's therapy.
...
Depending on the service needed — from diagnostics, to therapies, to state services — waits can range from several weeks to more than a year, advocates and providers say. There just aren't enough providers in town to meet the growing need of the community.

Once again, it's an example of Nevada's health care shortage. For mental health care, the state ranks toward the bottom in the number of psychiatrists and psychologists.

“When I first came here, autism was 1 in 250 (children). That was back in 2000,” said Julie Beasley, a child neuropsychologist and clinical director of the UNLV School of Medicine’s Ackerman Autism Center.

Today, more than 8,500 children in Nevada are on the autism spectrum, and 1 in 68 children are affected nationwide.

“That’s huge numbers, and the treatment of autism is very time intensive,” Beasley said.
Diagnosis alone can take up to eight hours at Beasley’s office, she said, and 10 to 15 hours with child neuropsychologist Nicole Cavenagh at the Center for Child and Family Development.

A developmental behavioral pediatrician can also diagnose autism in a child, but the single provider in Las Vegas is also the only one in Nevada, Beasley said.

“This is not a thing where we’re able to draw some blood and run a blood test,” said Cavenagh, who left Touro University Nevada’s Center for Autism and Developmental Disabilities in 2015 for private practice. Touro’s autism center plans to hire a neuropsychologist in the next few months and a developmental pediatrician within the year, renewing its ability to provide diagnostic services for parents who suspect their kids may be on the autism spectrum

Autism in Grad School

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

A graduate student with the byline "Alyssa" writes at Inside Higher Ed:

Being visibly autistic is not, in fact, an emergency. In a university environment, I have had professors or administrators become very concerned when I rocked, flapped, didn't make eye contact, needed to type instead of talk, or even just disclosed that I'm autistic. A friend of mine got into trouble because a rock climbing teacher saw her flap her hand. That sort of reaction doesn’t help anyone, especially once you consider that we might be doing the characteristically and visibly autistic thing in order to be more able to work on our actual priorities, like classwork or research.

Talking about specific needs is helpful. Terms like "high functioning" aren't. Calling someone "high functioning" will lead to missing some of their needs. Calling someone "low functioning" will lead to missing some of their abilities. It's best to drop the ineffective shorthand and talk about whatever needs abilities are relevant at the moment. If you mean that someone needs to type to communicate some or all of the time, say that. If you mean that someone is able to live alone with the proper support, say that. If you mean that someone needs help getting food, say that

More on Asperger and Nazism

In The Politics of Autism, I write about the dangers of eugenics and euthanasia.

In A Different Key, John Donvan and Caren Zucker found that Dr. Hans Asperger worked with Nazis in Austria.  We are now learning more details. 

Herwig Czech has an article at Molecular Biology titled "Hans Asperger, National Socialism, and “Race Hygiene” in Nazi-era Vienna." The abstract:

Background

Hans Asperger (1906–1980) first designated a group of children with distinct psychological characteristics as ‘autistic psychopaths’ in 1938, several years before Leo Kanner’s famous 1943 paper on autism. In 1944, Asperger published a comprehensive study on the topic (submitted to Vienna University in 1942 as his postdoctoral thesis), which would only find international acknowledgement in the 1980s. From then on, the eponym ‘Asperger’s syndrome’ increasingly gained currency in recognition of his outstanding contribution to the conceptualization of the condition. At the time, the fact that Asperger had spent pivotal years of his career in Nazi Vienna caused some controversy regarding his potential ties to National Socialism and its race hygiene policies. Documentary evidence was scarce, however, and over time a narrative of Asperger as an active opponent of National Socialism took hold. The main goal of this paper is to re-evaluate this narrative, which is based to a large extent on statements made by Asperger himself and on a small segment of his published work.

Methods

Drawing on a vast array of contemporary publications and previously unexplored archival documents (including Asperger’s personnel files and the clinical assessments he wrote on his patients), this paper offers a critical examination of Asperger’s life, politics, and career before and during the Nazi period in Austria.

Results

Asperger managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities. He joined several organizations affiliated with the NSDAP (although not the Nazi party itself), publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child ‘euthanasia’ program. The language he employed to diagnose his patients was often remarkably harsh (even in comparison with assessments written by the staff at Vienna’s notorious Spiegelgrund ‘euthanasia’ institution), belying the notion that he tried to protect the children under his care by embellishing their diagnoses.

Conclusion

The narrative of Asperger as a principled opponent of National Socialism and a courageous defender of his patients against Nazi ‘euthanasia’ and other race hygiene measures does not hold up in the face of the historical evidence. What emerges is a much more problematic role played by this pioneer of autism research. Future use of the eponym should reflect the troubling context of its origins in Nazi-era Vienna.

Research on Causation

In The Politics of Autism, I discuss various ideas about what causes the condition. Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;

 Irva Hertz‐Picciotto, Rebecca J. Schmidt, and Paula Krakowiak have an article at Autism Research titled "Understanding Environmental Contributions to Autism: Causal Concepts and the State of Science."  The lay summary:

This Keynote Lecture, delivered at the 2016 meeting of the International Society for Autism Research,discusses evidence from human epidemiologic studies of prenatal factors contributing to autism, such as pesticides,maternal nutrition and her health. There is no single cause for autism. Examples highlight the features of a high-quality epidemiology study, and what comprises a compelling case for causation. Emergent research directions holdpromise for identifying potential interventions to reduce disabilities, enhance giftedness, and improve lives of those with ASD

From the article:

The first decade of concerted efforts to identify environmental/modifiable causes of autism has produced a plethora of clues about risk and protective factors, with increasingly compelling evidence for a few: short interpregnancy intervals, maternal diabetes. The field has begun to mature, moving into its mid‐ to late childhood stage, where research is building and consolidating gains through replication of results and refinement of methods, even while still uncovering new connections. Also arising from this literature is the recognition of complexity in ASD etiology. Thus, we are poised to approach adolescence, where new developments in molecular biology, electronic connectedness and big data create possibilities and opportunities to address some of the major perplexing challenges.

Autism in France

 In The Politics of Autism, I describe the need for comparative perspectives on the issue

Richard Bates at The Conversation:

France has a problem with autism. The country’s highest administrative court estimates that there are 700,000 autistic people in France. However, only 75,000 are diagnosed. Autistic children have historically been diagnosed later in France than in neighbouring countries. They have often been excluded from mainstream education and lacked access to support services and extracurricular activities.

Many French autists are confined to day hospitals and live-in institutions, isolated from the community and frequently unable to communicate through speech – whereas in the US, for example, public schools are required by law to fully include autistic children in mainstream classroom education. For years, families in northeast France have taken autistic children to Belgium, to access its superior services.
The French government recognises these shortcomings. It was forced to do so in 2004 by a combination of domestic campaign groups and international pressure: the Council of Europe judged France’s autism provisions to be in breach of the European Social Charter. This judgement has been repeated in several subsequent cases. In 2016, the UN Committee on the Rights of the Child also worried that French autists “continue to be subjected to widespread violations of their rights” to education and support.

The response has been a series of “Plans Autisme”, so-called “Marshall Plans” directing investment towards improving outcomes. The latest such plan – the fourth – was launchedin early April by the French president, Emmanuel Macron, and will run until 2022. It seeks to recruit thousands of teaching assistants to enable autistic children to attend mainstream schools, as well as facilitating more diagnoses. Yet its very existence demonstrates that the results of the previous three plans were disappointing.

Reporting Offensive Tweets

 In The Politics of Autism, I examine the role of social media in the development of the issue.

Melissa Blake at CNN:

The next time you report a Twitter troll for polluting your timeline, you might notice an additional word on the reporting form.

Disability.

It's just one word. One we've seen thousands of times before. In fact, if you weren't looking closely at the form in the frenetic moments of reporting a tweet, you might not even notice it.

But make no mistake: This change is no small feat. It's a long overdue win in what seemed like a never-ending battle, one that people with disabilities like myself have been fighting online for years. Thankfully, Twitter joined that fight earlier this month when it revised its reporting form to include hate directed at people with disabilities.

"It's against our rules to directly attack or threaten someone based on their protected category, including disability," Twitter said in a tweet posted April 2. "You asked us to clarify this in our reporting flow, and we've updated it to be more specific."

The change is thanks to Natalie Weaver, who called on Twitter to revise its reporting form after her daughter's photo was used in an offensive tweet promoting eugenics. Her daughter, Sophia, has Rett syndrome, a genetic brain disorder that affects such things as language, walking and coordination. At first, Weaver told the website The Mighty, Twitter refused to take down the tweet, but eventually changed course, removing the offending account entirely.

Differences Among States in Autism Prevalence

In The Politics of Autism, I discuss the uncertainty surrounding estimates of autism prevalence. 

At The Journal of Autism and Developmental Disorders, R. Christopher Sheldrick and Alice S. Carter have an article titled" State-Level Trends in the Prevalence of Autism Spectrum Disorder (ASD) from 2000 to 2012: A Reanalysis of Findings from the Autism and Developmental Disabilities Network." The abstract:

Since 2000, the Autism and Developmental Disabilities Network (ADDM) has published detailed prevalence estimates for autism spectrum disorder (ASD) among 8 year-olds, which are widely interpreted as the U.S. national prevalence of ASD. Although differences in state-level ASD prevalence has been reported, state-level heterogeneity has not been explored systematically. We analyzed state-level estimates and trends in ASD prevalence from 2000 to 2012 using secondary data from bi-annual ADDM reports. Heterogeneity among state-level ASD prevalence estimates were apparent in 2000 and grew between 2000 and 2012. Findings highlight the need for greater understanding of how children with ASD are identified by the medical and educational systems, which has significant implications for the state-level resources required to effectively manage ASD.

New Jersey has the highest prevalence, Alabama the lowest.  Why?

From the article:

Consideration of such differences is important for at least two reasons. First, a large proportion of service delivery for ASD is managed at the state level. Strong differences in ASD prevalence at the state level therefore have implications for the resources required to provide adequate services (Wise et al. 2010). Second, improved understanding of the causes of observed changes in ASD prevalence may depend on a
more detailed understanding of heterogeneity. For example, the ADDM and others have speculated that trends in ASD prevalence over time may be attributable either to changes
in the true prevalence of ASD, for example resulting from trends in exposure to risk factors such as environmental toxins, or changes in the ascertainment of ASD, for example attributable to increased awareness of or sensitivity to ASD symptoms (Blumberg et al. 2013; Centers for Disease Control and Prevention 2014; Hansen et al. 2015; Idring et al. 2015). 

• Blumberg, S. J., Bramlett, M. D., Kogan, M. D., Schieve, L. A., Jones, J. R., & Lu, M. C. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged U. S. children: 2007 to 2011–2012. National Health Statistics Reports, 65, 1–11.Google Scholar
• Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010. MMWR, 63(SS-2), 1–21.Google Scholar
• Hansen, S. N., Schendel, D. E., Parner, E. T. (2015). Explaining the increase in the prevalence of autism spectrum disorders. JAMA Pediatrics, 169(1), 56. https://doi.org/10.1001/jamapediatrics.2014.1893.CrossRefPubMedGoogle Scholar
• Idring, S., Lundberg, M., Sturm, H., Dalman, C., Gumpert, C., Rai, D., … Magnusson, C. (2015). Changes in prevalence of autism spectrum disorders in 2001–2011: Findings from the Stockholm youth cohort. Journal of Autism and Developmental Disorders, 45(6), 1766–1773. https://doi.org/10.1007/s10803-014-2336-y.CrossRefPubMedGoogle Scholar
• Wise, M. D., Little, A. A., Holliman, J. B., Wise, P. H., & Wang, C. J. (2010). Can state early intervention programs meet the increased demand of children suspected of having autism spectrum disorders? Journal of Developmental and Behavioral Pediatrics, 31(6), 469–476. https://doi.org/10.1097/DBP.0b013e3181e56db2.PubMedGoogle Scholar

Blackstone Acquires CARD

The Politics of Autism includes an extensive discussion of autism service providers.

An April 13 release from Blackstone:

Blackstone (NYSE: BX) announced today that private equity funds managed by Blackstone have agreed to acquire the Center for Autism and Related Disorders, LLC (“CARD”), a leading provider of autism behavioral health services for children and adults affected by autism spectrum disorder. CARD Founder and CEO Dr. Doreen Granpeesheh and CARD management will invest alongside Blackstone in the transaction.

CARD offers center, school, and home-based behavioral therapy nationwide to children and adults diagnosed with autism. The company delivers rigorous clinical quality and positive outcomes through a highly credentialed and well-trained workforce of behavior analysts and behavior technicians, high engagement with patients and their families, proprietary software for treatment planning and ongoing monitoring, and an evidence-based, individualized approach to treating each child or adult. Dr. Granpeesheh will continue to lead CARD along with members of her experienced management team.

Bruce McEvoy, Senior Managing Director at Blackstone, said, “Dr. Granpeesheh has built an industry-leading provider of behavioral therapies for autism. We are thrilled to have the opportunity to partner with Dr. Granpeesheh and the rest of her visionary management team and look forward to supporting the company as it continues to expand access to treatment and services for those affected by autism.”

Dr. Granpeesheh, Founder and CEO of CARD, added, “We are proud of the high-quality services we provide and our commitment to helping individuals affected by autism achieve their full potential. Partnering with Blackstone will enable us to dramatically enhance our ability to serve the autism community through increased investments in people, clinics, technology, and research.”

The transaction is expected to close later this year. Blackstone was advised by Kirkland & Ellis LLP and Cain Brothers, a division of KeyBanc Capital Markets. CARD was advised by Nevers, Palazzo, Packard, Wildermuth & Wynner, PC, and Berkery Noyes.

Test Scores Flat

In The Politics of Autism, I write about special education, testing, and inclusion.

Christina Samuels at Education Week:

Students with disabilities posted stagnant scores on the National Assessment of Educational Progress in 2017 and failed to close the gap with students not identified as having disabilities, who also reflected generally flat performance on the latest results for what's been called the "Nation's Report Card."

Fourth-grade students with disabilities earned an average of 187 on the NAEP's reading test and 214 on the NAEP's math test, both of which are scored on a 500-point scale.

For 4th-grade students without disabilities, however, the average score was 227 on the reading test and 243 on the math test.

Eighth grade students with disabilities earned 232 on the reading test and 247 on the math test. Reading was a small bright spot—that score was a 2-point gain for students with disabilities from the last time the test was administered, in 2015.

But the reading test scores of 8th-grade students without disabilities also rose, by 1 point. Their average score was 271 on the reading portion of the test and 288 on the math section of the test.

Nevertheless, graduation rates are going up.