The Cliff, 2018

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

At US News, Gaby Galvin writes about the cliff.

But support is not guaranteed after that, contributing to the poor educational and vocational outcomes, which vary greatly depending on the state and even the county people live in, says Paul Shattuck, who directs the Life Course Outcomes Program at the A.J. Drexel Autism Institute at Drexel University. He likens the institute and its research efforts to "the Census Bureau of the autism world."

Part of the geographic variation is because states have different eligibility requirements for services – such as supported employment or housing – that are often focused on intellectual disability or mental health, but not autism specifically. People with autism tend to "fall between the cracks," Shattuck says, leaving many young adults and their parents struggling to navigate the complicated network of programs available as they leave the school system.

And as service-sector jobs have overtaken the U.S. economy in recent decades, it's become increasingly important to provide supports to prevent autistic adults from becoming even more marginalized, he says.

"What's the one thing that all service jobs have in common? You have to be able to relate to people and be sociable," Shattuck says. "And that is uniquely disadvantageous for people whose disability by definition is having difficulty relating to people."

Because autistic students can take longer to learn some skills, students should be out in the community as often as possible, practicing things like grocery shopping and taking public transportation to help them develop a sense of independence and responsibility, says Dr. Peter Gerhardt, founding chairman of the Scientific Council for the Organization for Autism Research and executive director of the Educational Partnership for Instructing Children, a school for autistic children in New Jersey.

Service Use Among Adolescents

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities. 

At The Journal of Autism and Development Disorders, Lindsay Shea and colleagues have a brief report titled "Service Use and Associated Expenditures Among Adolescents with Autism Spectrum Disorder Transitioning to Adulthood."  From the article:

This study is among the first to show that Medicaid-enrolled adolescents with ASD  ransitioning into adulthood are relying upon the public health insurance system for psychiatric and medical outpatient services and medications, and expenditures for these services increase as they age. There is less evidence for optimal types or quantities of services for adolescents and adults with ASD than there is for children but the high rate of use of outpatient services compared to other services is understandable since outpatient behavioral interventions are the primary modality of care for ASD. The
drop in medical outpatient services among the ASD group from 2001 to 2005 warrants further study, as it is not echoed in the ID group. Medications utilized by individuals with
ASD are typically prescribed to address repetitive, aggressive, or hyperactive behavior. These symptoms may be more characteristic of ASD than ID or may grow more frequent
or severe in presentation during the transition to adulthood (Shattuck et al. 2007).

The increase in expenditures for inpatient and especially in long-term care services among the ASD group as they aged is particularly troubling. These results extend
findings from studies among children (Cidav et al. 2013). Inpatient episodes often represent crises for individuals with ASD, their families, and their communities. Other
research has found that children with caregivers with a lower  socioeconomic status and educational grade are at higher risk for inpatient episodes (Siegel and Gabriels 2014). Children with ASD also have more frequent and longer inpatient stays, increasing their cost (Kalb et al. 2012). These findings suggest patterns observed in childhood continue through adolescence and into early adulthood.

Schools Discipline Disabled Students at a High Rate

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

The Government Accountability Office reports:

Black students, boys, and students with disabilities were disproportionately disciplined (e.g., suspensions and expulsions) in K-12 public schools, according to GAO’s analysis of Department of Education (Education) national civil rights data for school year 2013-14, the most recent available. These disparities were widespread and persisted regardless of the type of disciplinary action, level of school poverty, or type of public school attended. For example, Black students accounted for 15.5 percent of all public school students, but represented about 39 percent of students suspended from school—an overrepresentation of about 23 percentage points (see figure).

...

For students with disabilities, the same pattern of disproportionately higher rates of discipline compared to their peers without disabilities was evident, according to Education’s school year 2013-14 data (see fig. 5).33 Students with disabilities represented approximately 12 percent of all public school students, and accounted for nearly 25 percent or more of students referred to law enforcement, arrested for a school-related incident, or suspended from school (an overrepresentation of roughly
15.5 percentage points for referrals to law enforcement and school related arrests, and 13 percentage points for out-of-school suspensions). Further, our analysis of discipline for students with disabilities by both race and sex showed that Black students with disabilities and boys with disabilities were disproportionately disciplined across all six actions. For example, Black students with disabilities represented about 19 percent of all K-12 students with disabilities, and accounted for nearly 36 percent of students with disabilities suspended from school (about 17 percentage points above their representation among students with disabilities).

One reason for the high rate of arrests and referrals to law enforcement is that calling the cops enables schools to bypass IDEA's procedural requirements for suspensions and expulsions.

Good News on Disability Employment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience. 

At Research on Disability, Anna Brennan-Curry reports:

Americans with disabilities reached a milestone this month, as the major economic indicators showed increases for the 24th consecutive month, according to today’s National Trends in Disability Employment – Monthly Update (nTIDE), issued by Kessler Foundation and the University of New Hampshire’s Institute on Disability (UNH-IOD). The strengthening economy underscores the value of diversity in the workplace. As hiring increases, preparing for the workplace is more important than ever for people with disabilities. Jobseekers with skills and experience gain employment more readily. Programs that provide hands-on work experiences are equipping people with disabilities with the skills they need to succeed in careers in government, nonprofits and private industries.

In the Bureau of Labor Statistics (BLS) Jobs Report released Friday, April 6, the employment-to-population ratio for working-age people with disabilities increased from 28.6 percent in March 2017 to 31.7 percent in March 2018 (up 10.8 percent; 3.1 percentage points). For working-age people without disabilities, the employment-to-population ratio also increased from 73.3 percent in March 2017 to 73.6 percent in March 2018 (up 0.4 percent; 0.3 percentage points). The employment-to-population ratio, a key indicator, reflects the percentage of people who are working relative to the total population (the number of people working divided by the number of people in the total population multiplied by 100).

MeiMeiFox reports at Forbes:

Stella Spanakos serves as the cofounder and director of development at the Nicholas Center, which offers services to teach social and vocational skills, while also supporting families. The Nicholas Center provides vocational support to three enterprises also cofounded by Spanakos: Spectrum Designs, Spectrum Bakes, and Spectrum Suds. Spectrum Designs is a fully functioning apparel customization shop that provides gainful employment for individuals with autism within a social enterprise. Spectrum Bakes makes customizable granola bars. And Spectrum Suds is a boutique laundry service. Clientele for these businesses includes Google, Comedy Central and Betches, as well as municipalities, nonprofits and schools.

In Indianapolis, Rich Nye reports at WTHR:

On West Main Street in Carmel's Arts and Design district, No Label at the Table Food Company is now open every day except Monday.

The bakery offers tasty treats and jobs for people with autism.

Founder Shelly Henley’s desire for her son to become a productive, working adult became a business that's baking with a purpose.

“No Label at the Table is a gluten- and dairy-free company that employs people with autism,” explained Chef Hannah Johnson while stirring chocolate frosting Friday morning.

The business started about a year ago just opened the bakery storefront two weeks ago.

France to Make Amends for Treatment of Autistic People

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

Angelique Chrisafis reports at The Guardian:

The French government has launched a €340m (£297m) strategy in an effort to make amends for the country’s scandalous state treatment of children and adults with autism, which has been denounced by the United Nations as a “widespread violation” of citizens’ rights.

President Emmanuel Macron, who made the need to improve the education and rights of people with autism a part of his election campaign, said he wanted everyone “to be included in school and everyday life”.

The strategy was launched by the prime minister, Édouard Philippe, on Friday afternoon and intends, in the words of one government adviser, to “at last” give children with a neurodevelopmental disorder access to mainstream education in France – a legal right that they have consistently been denied.

There will also be a drive to improve support for autistic adults, only 0.5% of whom are in regular employment, and who are routinely admitted to psychiatric hospitals. The government acknowledged that an adult with autism in France is three times more likely to be in long-term psychiatric care than the rest of the population. Rights groups decry the treatment as inadequate and inappropriate.

Medical Marijuana for Autism

In The Politics of Autism, I write:

The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage

These approaches sometimes include marijuana.

Maria Clark at The New Orleans Times-Picayune:

Louisiana residents living with autism disorder are one step closer to accessing medical marijuana as a possible treatment option.

The bill (HB 627) cleared the Louisiana House 78-21 Thursday (April 5) after several members of the cabinet questioned a new amendment proposed by Rep. Dodie Horton R- Bossier that would have made medical marijuana accessible to anyone with any medical condition. Horton added that it would be up to medical specialists to determine whether a patient could be treated with medical marijuana.

The amendment was a complete 180 for Horton who on Thursday morning voted against a similar bill (HB 579) that expands the use of medical marijuana to treat post-traumatic stress disorder, glaucoma, severe muscle spasms, and chronic pain. The bill cleared the committee with a vote of 8-4

At The Denver Post, John Ingold reports on a bill to allow medical marijuana for autism.

At the end of more than five hours of testimony and debate, lawmakers on the state House Health, Insurance and Environment Committee approved the bill by a 12-1 vote, the first of several hurdles at the Capitol that it must clear before becoming law.

The bill, House Bill 18-1263, would allow doctors to recommend marijuana as a treatment for symptoms suffered by anyone diagnosed on the autism spectrum. An initial provision in the bill that also would have qualified acute pain as a condition meriting cannabis was stripped out before the committee’s final vote.

Thursday’s hearing echoed numerous prior debates in recent years at the Capitol that pitted families with personal anecdotes of transformations brought about by cannabis against doctors worried by the lack of high-quality studies and unknown long-term effects.

Overall, more than 93,000 people in Colorado have active medical marijuana cards — 314 of those age 17 or younger, a decline from several years ago, when families with children who suffer from epilepsy poured into the state in a similar quest to help their children through marijuana.

KSWO-TV reports on a movement to allow it in Arizona:

KSWO 7News | Breaking News, Weather and Sports

Things That Do Not Cause Autism

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism. 

 Alex Berezow, at the American Council on Science and Health, observes Autism Awareness Month by noting several things that do not cause autism.

Vaccines. A substantial proportion of people refuse to accept the reality that vaccines do not cause autism. This was never controversial in the scientific community. After the fraud Andrew Wakefield published his sham "study" linking vaccines to autism, the New England Journal of Medicine published the results of an absolutely enormous study (including more than 537,000 children) that thoroughly refuted Wakefield. Since then, the evidence has grown even stronger, concluding once and for all that vaccines are not a cause of autism.

Child Car Safety Seats. At least one lunatic believes that strapping a child into a car safety seat increases the risk of autism. How so? Chemicals. To prove his case, he shows that as the usage of car safety seats has increased over the years, so have cases of autism. QED. There's only one problem: A lot of things have increased over the years, such as sales of organic food. Possibly organic carrots cause autism, too?

Parenting style. Some people make great parents, while others stink at it. But parenting style itself won't cause autism, as was once elaborated by the "Refrigerator Mom" hypothesis. Instead, parenting style can ameliorate or exacerbate the symptoms of autism.

Forty-Three Senate Democats Oppose H.R. 620

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

A release from Senator Tammy Duckworth:

U.S. Senator Tammy Duckworth (D-IL) and 42 of her colleagues wrote to Senate Majority Leader Mitch McConnell (R-KY) today pledging to block a House Republican-led effort to curtail the civil rights of Americans living with disabilities. Together, the group of 43 Senators is large enough to defeat the discriminatory ADA Education and Reform Act (H.R. 620), which civil rights icon Congressman John Lewis (D-GA) described as, “a bill that turns the clock backwards and strikes a devastating blow in the fight for civil rights.” The legislation would isolate Americans living with disabilities as the only federally-protected class of citizens forced to rely on “education,” rather than strong enforcement, to exercise their basic civil rights.
...
H.R. 620 would gut the Americans with Disabilities Act (ADA) by eliminating incentives for businesses of any size, including the largest corporate hotel, restaurant and movie theater chains, to make their facilities accessible to people with disabilities. Instead, businesses would be encouraged to avoid complying with the nearly 30-year-old law until people with disabilities notify them that they are unable to enter their facility. Businesses would be allowed to discriminate for at least 120 days following notification, and they would only need to make “substantial progress” towards accessibility to make their facility ADA-compliant. That would set a dangerous precedent by forcing Americans living with disabilities to personally experience the humiliation of discrimination – and then be required to educate those who violate their civil rights – before having violations of their civil rights remedied.

Notably, special interests lobbying for H.R. 620 have misleadingly implied that the ADA allows people to sue for monetary damages even though the ADA does not, and has never, authorized damage awards. That’s because Congress modeled the right of private action under title III of the ADA after title II of the seminal Civil Rights Act of 1964, which authorizes private lawsuits to enforce the prohibition against discrimination on the basis of race, religion, and national origin in certain places of public accommodation. To help businesses achieve compliance, Congress also crafted the ADA to only require removal of barriers when it is not too difficult or expensive, and Congress established a small business tax credit and a tax deduction for businesses to lower the costs of making their facilities accessible.
...
Duckworth has been a vocal critic of H.R. 620, which only narrowly passed the House of Representatives last month. She went to the House floor last month ahead of the vote on the bill to urge her House colleagues to vote against the bill. She also penned an op-ed in The Washington Post about how this legislation would make Americans with disabilities second-class citizens again and send a signal that their civil rights are not worthy of strong enforcement. Civil Rights organizations like The Leadership Conference on Civil and Human Rights and Veterans Service Organizations like the Paralyzed Veterans of America have also urged Senators to strongly oppose the legislation while the U.S. Department of Justice warned that H.R. 620 “would also unnecessarily limit individuals’ abilities to obtain much-needed barrier removal in a timely manner (and) may instead result in additional areas of litigation.”

The letter was also signed by U.S. Senators Chuck Schumer (D-NY), Bob Casey (D-PA), Patty Murray (D-WA), Maggie Hassan (D-NH), Elizabeth Warren (D-MA), Chris Van Hollen (D-MD), Tammy Baldwin (D-WI), Michael Bennet (D-CO), Richard Blumenthal (D-CT), Cory Booker (D-NJ), Sherrod Brown (D-OH), Maria Cantwell (D-WA), Ben Cardin (D-MD), Tom Carper (D-DE), Chris Coons (D-DE), Catherine Cortez Masto (D-NV), Dick Durbin (D-IL), Dianne Feinstein (D-CA), Kirsten Gillibrand (D-NY), Kamala Harris (D-CA), Martin Heinrich (D-NM), Mazie Hirono (D-HI), Tim Kaine (D-VA), Amy Klobuchar (D-MN), Patrick Leahy (D-VT), Edward Markey (D-MA), Claire McCaskill (D-MO), Jeff Merkley (D-OR), Bob Menendez (D-NJ), Chris Murphy (D-CT), Gary Peters (D-MI), Jack Reed (D-RI), Bernie Sanders (I-VT), Brian Schatz (D-HI), Jeanne Shaheen (D-NH), Tina Smith (D-MN), Debbie Stabenow (D-MI), Jon Tester (D-MT), Tom Udall (D-NM), Mark Warner (D-VA), Sheldon Whitehouse (D-RI), and Ron Wyden (D-OR).

 A full copy of the letter is available online here

How the Education Department Can Ignore Civil Rights Complaints

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

At Disability Scoop, Hannah Lang reports the the Education Department has a new way to thwart "mass filers," who file many civil rights complaints on behalf of others.

Since January 2016, Marcie Lipsitt has filed 2,400 complaints with the U.S. Department of Education’s Office for Civil Rights over web accessibility for people with disabilities.

Lipsitt, a Michigan-based special education activist, estimates that a thousand of those complaints have ended in resolutions. However, last month she began receiving letters notifying her that dozens of her complaints under investigation had been dismissed.

The reason: Under a new set of guidelines that went into effect March 5, the Office for Civil Rights can now dismiss reports if “a complaint is a continuation of a pattern of complaints previously filed with OCR by an individual or group against multiple recipients, or a complaint is filed for the first time … that places an unreasonable burden on OCR’s resources.”

...
The guidelines in the manual also no longer allow for complainants to appeal if their case is dismissed. According to [Elizabeth] Hill at the Education Department, this system was eliminated because the appeals process seldom resulted in a different outcome.

“There’s absolutely no check and balance system at the OCR for any errors that are made in the investigation of complaints,” said Lipsitt.

If the complainant doesn’t agree with the dismissal, their only option now would be to hire a private lawyer to fight the decision — an option Lipsitt said many families can’t afford.

In August, Politico reported:

Betsy DeVos’ Education Department has closed more than 1,500 civil rights complaints at the nation’s schools — including dismissing more than 900 outright — in the two months since her acting civil rights chief took steps to reduce a massive backlog.

The June directive from acting Assistant Secretary for Civil Rights Candice Jackson told the department's investigators to narrow their focus to the merits of a particular claim, rather than probing systemic issues, as they had done during the Obama administration. Jackson also gave regional civil rights offices more autonomy to close cases without approval from D.C.

The dismissals come as civil rights groups and Democrats express fear the Trump administration will “diminish” civil rights enforcement — a major focus of former President Barack Obama’s Education Department. Advocacy groups said that while the data offers just a two-month snapshot, the large number of dismissals and so-called “administrative closures” — in which a case is closed without any findings of wrongdoing — are alarming.

World Autism Awareness Day and Autism Awareness Month

In The Politics of Autism, I write:

The number of people with a stake in the issue is going to mount. I am not saying that there will be a true increase in the prevalence of autism. As we saw in chapter 3, it is unclear how much of the apparent change involves awareness and diagnostic standards. Even if there has been a true increase in recent decades, there is no way of knowing whether it will go on. But the rise in the number of autism diagnoses and educational determinations will translate into a growing population of people who have lived with the autism label, and who think of themselves as autistic. Most in this category will have family members and other people who are close to them. They may be guardians or caregivers, or they may just be friends and relatives with a deep concern. Either way, autism will be part of their lives, too. Overall, the share of Americans who know someone with autism will surely top the 39 percent recorded in 2008. One study found that 60 percent of respondents in Northern Ireland knew someone with autism in their own family, circle of friends or co-workers. There is no reason to think that the figure would be lower in the United States.

Today is World Autism Awareness Day! Wear blue and post a selfie with #LightItUpBlue! pic.twitter.com/GXlTVYjCtT

— Autism Speaks (@autismspeaks) April 2, 2018

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Freddie Highmore, star of The Good Doctor, appears in a PSA for Autism Speaks:

Dr. Hans Asperger's Nazi Connection

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.

Edith Sheffer writes at The New York Times:

Child “euthanasia” was the Reich’s first program of mass extermination, begun by Hitler in July 1939 to get rid of children regarded as a drain on the state and a danger to its gene pool. Most of the victims were physically healthy, neither suffering nor terminally ill. They were simply deemed to have physical, mental or behavioral defects.

At least 5,000 children perished in around 37 “special wards.” Am Spiegelgrund, in Vienna, was one of the deadliest. Killings were done in the youths’ own beds, as nurses issued overdoses of sedatives until the children grew ill and died, usually of pneumonia.

Asperger worked closely with the top figures in Vienna’s euthanasia program, including Erwin Jekelius, the director of Am Spiegelgrund, who was engaged to Hitler’s sister. My archival research, along with that of other scholars of euthanasia like Herwig Czech, the author of a forthcoming paper on this subject in the journal Molecular Autism, show that Asperger recommended the transfer of children to Spiegelgrund. Dozens of them were killed there.

One of his patients, 5-year-old Elisabeth Schreiber, could speak only one word, “mama.” A nurse reported that she was “very affectionate” and, “if treated strictly, cries and hugs the nurse.” Elisabeth was killed, and her brain kept in a collection of over 400 children’s brains for research in Spiegelgrund’s cellar.

Professor Sheffer is the author of the forthcoming book  Asperger’s Children: The Origins of Autism in Nazi Vienna.

Culture and Inclusion

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

Liz Pellicano, Sven Bölte, Aubyn Stahmer have an editorial at Autism titled "The Current Illusion of Educational Inclusion."

[T]hose of us committed to the ideal of inclusion also need to work more generally, across all jurisdictions, to promote cultural change among educators, parents, and peers. All too often at the moment, each of these groups can talk the language of inclusion without adhering to its value. We know that autistic students are more likely to be successfully included if school leadership is supportive (e.g. Horrocks et al., 2008; Praisner, 2003). We know too that the attitude and awareness of peers can be vital in facilitating acceptance (Tonnsen and Hahn, 2015; see also Williams et al., 2017) and that education about autism can improve these attitudes (Carter and Kennedy, 2006). Surveys show, however, that the majority of parents and teachers remain skeptical toward inclusion

Prevalence in Canada

 In The Politics of Autism, I discuss prevalence and the need for comparative analysis.

A March 29 release from the Public Health Agency of Canada:

Autism spectrum disorder (ASD) has a significant and life-long impact on people living with the condition and their families. Families of children with ASD face unique challenges and the Government of Canada is committed to supporting them through investments in research and policy.

Today, the Public Health Agency of Canada, together with the provinces and territories, released the first national ASD prevalence estimates among children aged 5-17 years. The report, Autism Spectrum Disorders Among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System, was developed in close cooperation with the provinces, territories and ASD stakeholder groups.

The report estimates that 1 in 66 Canadian children and youth have an ASD diagnosis, which is in line with findings in similar studies conducted in the United States. The data released today establish a baseline that will help researchers determine if ASD prevalence rates change over time. The data will also help inform the development of policies and services to support Canadians with ASD and their families.
...
Quick Facts

Key findings of the National Autism Spectrum Disorder Surveillance System Report include:

• Among children and youth aged 5-17 years, 1 in 66 has received an ASD diagnosis.
• Boys have received an ASD diagnosis four times more frequently than girls.
• More than half (56%) of children and youth with ASD were diagnosed by age six, and more than 90% received a diagnosis by age 12.
• Canadian prevalence estimates found in the report are similar to the most recent prevalence estimates from the United States, which have identified that 1 in 68 children have an ASD diagnosis and that boys are 4.5 times more likely to have an ASD diagnosis than girls.

Budget 2018 proposes to fund two new initiatives to support people living with ASD and their families:

• A national resource exchange network to help connect people with ASD and their families to information, resources, employment opportunities, and local programming;
• Funding for community-based projects that will help to reduce stigma and to integrate and strengthen health, social and educational programs.

Associated Links

• Autism Spectrum Disorders Among Children and Youth in Canada 2018: A report of the National Autism Spectrum Disorder Surveillance System
• Infographic: Autism Spectrum Disorder among Children and Youth in Canada 2018