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Sunday, December 10, 2017

Autism, Diagnosis, and Immigration

 In The Politics of Autism, I explain how the issue connects with so many other issues.  Immigration is an example.

Emily Sohn at Spectrum via Scientific American:
[Cultural]  complexities, experts say, make it difficult to interpret the evidence that certain immigrant communities have an unusually high or low prevalence of autism. As some researchers dig into possible explanations, from stress to environmental factors, others say the true issue may be societal: a mix of diagnostic challenges, communication barriers and culture clashes that lead clinicians to misdiagnose or miss children on the spectrum in these communities.

Some teams are trying to develop or assess screening tools tailored for certain ethnic groups in the U.S. and elsewhere—for example, a picture-based tool for use in Sri Lanka—and these efforts may lead to more accurate numbers among different populations. If the figures reveal true differences in prevalence among these communities, they might offer clues about the potential causes of autism. The vast majority of research on autism today, after all, is limited to mostly white and middle-class families. At the very least, getting a better handle on prevalence may help identify populations with the greatest needs for culturally adapted services.

“What’s important is that kids who have autism get identified early and access high-quality treatment,” says Katharine Zuckerman, a pediatrician at Oregon Health and Science University in Portland. “I think we do a pretty poor job of that in this country, especially if you look at the most evidence-based treatments for autism—only a small fraction gets that. And immigration influences the ability to access those things.”
Fixing flawed prevalence rates in immigrant communities calls for screening tools that have been adapted specifically for these families. The translations available so far often miss the cultural mark, however. One meta-analysis of 21 studies assessed the translation of nine widely used screening tools for autism, including the Autism Spectrum Screening Questionnaire, into eight languages, including Arabic. The results exposed a web of complications and altered meanings. Some translations changed questions and, in the process, altered the cutoff scores for diagnosis. For example, a Japanese version of the popular Modified Checklist for Autism in Toddlers (M-CHAT) had to take into account reluctance among parents in Japan to answer “yes” to yes-or-no questions, and a tendency to interpret their child’s lack of interest in other children as mere shyness. In some countries, including Mexico, it is rude to make eye contact or point with your index finger, and questions about both behaviors often show up on screening tools. Parents from various cultures also have different expectations about how their children should behave, research shows. Those differences include when parents think children should reach developmental milestones and how important they think it is to talk to their children.

Saturday, December 9, 2017

Civil Rights, Disabilities, and the School-to-Prison Pipeline

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

The name of the session, "The School-to-Prison Pipeline: The Intersections of Students of Color with Disabilities," offered a clue to the stance of some panelists who spoke before the bipartisan commission: That too many students with disabilities are being placed in special education, and once there, they face punitive discipline that puts many of them on a rocky path to incarceration.
"We can't afford to ignore this problem," said Eve Hill, a former deputy assistant attorney general in the Justice Department's civil rights division. "We're wasting the talents and skills of tens of thousands of children every year."
But that wasn't a view shared by every panelist, nor by every commissioner. Peter Kirsanow, the only Republican on the commission, said that efforts by the federal government to reduce suspensions and expulsions have led to "unlawful quotas." He also asked if keeping disruptive students in school had a negative impact on the students who remained.
"The most vulnerable cohort would be students with disabilities," Kirsanow said, referring to other research on the high rates of bullying toward students in special education.

At US News, Lauren Camera reports on DeVos's review of Education Department rules.
Two of those regulations are at the heart of the current civil rights spat.

The first is a 2014 regulation aimed at stemming the school-to-prison pipeline by prodding schools to reduce the number of suspensions and expulsions of students of color and students with disabilities, both of whom receive such disciplinary actions at disproportionately high rates.

According to the Department of Education's Office for Civil Rights, among the 2.6 million students suspended each year, black boys are three times more like than white boys to be suspended, black girls are six times more likely than white girls to be suspended, and students with disabilities are more than twice as likely as their peers to be suspended.

The second regulation, issued in 2016, established a more standardized method for how states calculate the threshold at which the percentage of black students classified as disabled becomes a "significant disproportionality" – a benchmark that triggers mandatory spending requirements for a portion of federal funds a district receives. The goal of the guidance, which is set to go into effect for the 2018-2019 school year, was to create a way to better monitor the long-held notion that students of color are identified as having learning disabilities at a greater rate than white students.

DeVos has not signaled whether her department is leaning toward repealing the regulations entirely, but she recently met with critics of the 2014 school discipline guidance and also recently published in the Federal Register a notice seeking comment on whether or not the compliance date for the 2016 regulation should be delayed until 2020.

Friday, December 8, 2017

ABLE Update

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

From the ABLE National Resource Center:
December 4: Today, the ABLE National Resource Center (ANRC) hosted a congressional briefing at the Russell Senate Office Building in Washington, D.C. The event provided Members of Congress and ABLE related stakeholders with a progress report on the Stephen Beck Jr., Achieving a Better Life Experience (ABLE) Act implementation nationwide. To date, more than 30 states have launched ABLE programs.
The briefing shared key information about ABLE account owner demographics, number of accounts opened, contribution levels and other significant data points. Attendees heard from two sets of distinguished panelists who shared ABLE success stories, examined implementation challenges and looked into the future with respect to legislative recommendations to strengthen ABLE.
The briefing was hosted by the ANRC, sponsored by Senator Robert “Bob” Casey, Senator Richard Burr, Representative Pete Sessions, Representative Tony Cardenas and Representative Cathy McMorris Rodgers, in collaboration with the Consortium for Citizens with Disabilities (CCD) Financial Security Taskforce and the National Association of State Treasurers (NAST) ABLE Committee.
During the nearly three years since the ABLE Act enactment, a tremendous amount of work has been done on the local, state and federal levels to ensure that ABLE eligible individuals with disabilities have the opportunity to build a sound financial future, without jeopardizing their eligibility for various supports and services provided by means-tested programs.

Slides from the briefing can be found HERE.
The agenda from the briefing can be found HERE.

Thursday, December 7, 2017

Problematic Representations of Autism

In The Politics of Autism, I write about misperceptions of people on the spectrum:
Some may confuse autism with intellectual disability and subject their autistic students to what President Bush called the soft bigotry of low expectations. Others may believe in the “Rain Man” myth of savant abilities and conclude that poor performance on a math test can only mean laziness or defiance.
The same holds true in the working world.  Michael Bernick at Forbes:
David Platzer is an anthropologist of autism employment (profiled earlier this year) who is deeply involved in trying to create new employment opportunities for adults on the autism spectrum. Platzer explains:
"Pervasive popular culture representations of autism as entailing savant or savant-like skills, such as Atypical and The Good Doctor, can create real problems for those of us working to promote employment for folks across the autism spectrum. When employers or potential employers equate autism with genius and mild social eccentricity, they are not adequately prepared for the patience and dedication that working with a broader autistic population often entails. In many ways, the representations of autism we see in Hollywood are actually setting the community up for failure. And this is especially so for those who experience more significant challenges."
Platzer is spot on. In 2017, autism employment initiatives throughout the country have continued to grow in autism-focused small businesses, autism self-employment and internet-based creative collectives, and autism-targeted hiring efforts in major companies. But it has been a slow process this past year, in part as the reality of autism employment has conflicted with the idealized versions held by company officials.

Wednesday, December 6, 2017

Collett Statement

Now, I expect that we will talk about a number of things today, and I’m looking forward to responding to your questions. But I want to be honest about something from the beginning. . . Regardless of the particular matters at hand or the specific issues that we may discuss, the lens through which I will process and respond to your questions will be that of the child, the student,or the adult with a disability, and what will ensure that they have an equitable opportunity to be successful. While we all – individually and as a nation - have a stake in the success of children, youth, and adults with disabilities, no one has more of a stake in their success than they do. This will be my lens today, and each day that I serve in this role, if confirmed.
Before I began my career as an educator, I was a church pastor for about ten years. While a different role, to be sure, it was during those years that my commitment to individuals, their particular strengths and diverse needs, and the supports that would help them achieve the life they envisioned, was firmly established. That commitment continued to be shaped as I began my career in public education. I came into the teaching profession through an alternative route. In fact, I began my education career as an emergency certified teacher. I quickly achieved full certification and have continued since then to be guided daily by a growing and intense focus on individuals with disabilities and their families, their strengths and needs, and how we best support them to achieve the outcomes that we, and most importantly they, envision.

Tuesday, December 5, 2017

School Choice and Information for Parents

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

From the Government Acountability Office:
States include different academic, administrative, and financial accountability mechanisms in their voucher and education savings account (ESA) programs—programs that use public funds for private school educational expenses (see figure). Of the 27 programs operating in January 2017, most had academic and administrative accountability mechanisms for participating schools, such as academic testing requirements (18 of 27) or health and safety requirements (25 of 27). In addition, 15 of 27 programs required schools to demonstrate financial soundness and 8 of 27 programs required annual financial audits.
Key Academic, Administrative, and Financial Accountability Mechanisms in Private School Choice Programs
Almost all of the 27 private school choice program websites provide a directory of participating schools and some provide guidance on selecting schools. However, GAO estimates that no more than half of all schools participating in any type of voucher program mention students with disabilities anywhere on their websites, according to GAO's review of a nationally generalizable sample of websites of private schools in voucher programs. Further, GAO estimates that no more than 53 percent of private schools in voucher programs designed for students with disabilities provide disability-related information on their websites.
GAO found private school choice programs inconsistently provide information on changes in rights and protections under the Individuals with Disabilities Education Act (IDEA) when parents move a child with a disability from public to private school. In 2001, the U.S. Department of Education (Education) strongly encouraged states and school districts to notify parents of these changes, but according to Education, IDEA does not provide it with statutory authority to require this notification. According to GAO's review of information provided by private school choice programs, and as confirmed by program officials, in school year 2016-17, 83 percent of students enrolled in a program designed specifically for students with disabilities were in a program that provided either no information about changes in IDEA rights or provided information that Education confirmed contained inaccuracies about these changes. Officials from national stakeholder groups, private choice programs, and Education told GAO that some parents do not understand that certain key IDEA rights and protections—such as discipline procedures and least restrictive environment requirements—change when parents move their child from public to private school. Ensuring that quality information is communicated consistently and accurately to parents can help address potential misunderstanding about changes in federal special education rights.
What GAO Recommends
Congress should consider requiring states to notify parents/guardians about changes in federal special education rights when a parent moves a child from public to private school. In addition, GAO recommends Education review and correct inaccurate IDEA-related information provided by states. Education generally agreed with our recommendation.
For more information, contact Jacqueline M. Nowicki at (617) 788-0580 or

Monday, December 4, 2017

Falling Off the Cliff

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 the Philadelphia Inquirer, Ronnie Polaneczky has a series titled "Falling off the Cliff."
Parents of adults with I/DD followed Christina's case closely, and they called to share their own horror stories about caregiver abuse and agency incompetence. About political and public indifference to the needs of those with I/DD. About the lack of compassion and resources for elderly parents who have become too old and frail to care for their aging, impaired children. About the sudden elimination of educational options when a disabled child turns 21, a descent so dramatic and universal that parents call it "falling off the cliff."
Their stories could fill a book. But each would only nick the surface of a crisis that is barreling toward us like a tsunami: We will soon have more intellectually and developmentally disabled adults living in this country than at any other time in our history.
Advances in medical care have allowed kids born with Down syndrome, for example, to live twice as long as they did just 20 years ago. And the explosion in the number of children with autism -- one in 68 children are now diagnosed -- means we'll soon have a vast population of adults in need of services like those Christina's family had hoped would keep her safe.
Add these numbers to those of children born with the two other most common roots of intellectual disability -- Fragile X syndrome and fetal alcohol spectrum disorder -- and we have a looming social, economic, and moral crisis. What will we do about, with, and for these vulnerable adults and the families who struggle to care for them? And how much are we willing to pay for it?