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Wednesday, December 13, 2017

AI and ASD

In The Politics of Autism, I discuss the neurodiversity movement. 

Ali Breland at The Hill:
Sen. Brian Schatz (Hawaii), the top-ranking Democrat on the Internet subcommittee, targeted technology firms lack of diversity and the harms it could pose to minorities during a hearing about artificial intelligence on Tuesday.
The Hawaii senator argued that Silicon Valley and tech firms' general homogeneity presents potentially dangerous issues as the industry grapples with serious applications of AI, in areas like criminal justice and defense.
"I think there’s another part of this discussion which you’ve heard less about which is really important. Which is how AI can be used, not trained and built, but used to lessen bias,” said Victoria Espinel, president and CEO of BSA, a trade association that lobbies on behalf of technology companies.
“There are a number of really interesting examples both in terms of hiring people with conditions like autism or people that are visually impaired, where AI can dramatically transform their ability to interact with society and in workplaces,” she said.

Tuesday, December 12, 2017

Department of Education on FAPE and IEPs

In The Politics of Autism, I write about IEPs and FAPE.

The U.S. Department of Education today released a question-and-answer document supporting the unanimous March 2017 U.S. Supreme Court opinion on the Individuals with Disabilities Education Act (IDEA)-related case Endrew F. v. Douglas County School District clarifying the scope of a free appropriate public education (FAPE).
"The Supreme Court sent a strong and unanimous message: all children must be given an opportunity to make real progress in their learning environment—they cannot simply be passed along from year to year without meaningful improvement," said U.S. Secretary of Education Betsy DeVos. "For too long, too many students offered IEPs were denied that chance. I firmly believe all children, especially those with disabilities, must be provided the support needed to empower them to grow and achieve ambitious goals."
The Department issued the Q&A document to provide parents, educators and other stakeholders information on the issues addressed in Endrew F. and the impact of the Court's decision.
The Q&A explains the case and provides a summary of the Court's final decision and prior case law addressing the FAPE standard. The document also explains how FAPE is currently defined, clarifies the standard for determining FAPE and addresses how this ruling can support children with disabilities.
You can view the Q&A document here:

Monday, December 11, 2017

Race, Parental Concerns, and Age of Diagnosis

In The Politics of Autism, I write about the experiences of different ethnic and racial groups.

A release from Georgia State University:
Racial differences in parents’ reports of concerns about their child’s development to healthcare providers may contribute to delayed diagnosis of autism spectrum disorder (ASD) in black children, according to a study led by Georgia State University.
The study found that compared to white parents, black parents reported significantly fewer concerns related to symptoms of ASD in their children with the disorder. Black parents were less likely than white parents to report concerns about two ASD symptoms – social deficits and restricted and repetitive behaviors. The findings are published in the journal Autism.
Many parents begin reporting concerns about ASD during the child’s first two years of life, and on average, children are diagnosed with ASD around their fourth birthday. However, black children are diagnosed with ASD at older ages than white children and children of other races. They are also nearly twice as likely as children of other races to be misdiagnosed with disruptive behavior disorders before receiving an ASD diagnosis.
The abstract:
Autism. 2017 Nov 1:1362361317722030. doi: 10.1177/1362361317722030. [Epub ahead of print] Race influences parent report of concerns about symptoms of autism spectrum disorder.

Donohue MR, Childs AW, Richards M, Robins DL.

Racial differences in parent report of concerns about their child's development to healthcare providers may contribute to delayed autism spectrum disorder diagnoses in Black children. We tested the hypotheses that compared to White parents, Black parents of children with autism spectrum disorder would report fewer concerns about autism symptoms and would be more likely to report concerns about disruptive behaviors. A sample of 18- to 40-month-old toddlers ( N = 174) with autism spectrum disorder and their parent participated. After screening positive for autism spectrum disorder risk, but prior to a diagnostic evaluation, parents completed free-response questions soliciting concerns about their child's development. Parent responses were coded for the presence or the absence of 10 possible concerns, which were grouped into autism concerns (e.g. social and restricted and repetitive behavior concerns) or non-autism concerns (e.g. general developmental and disruptive behavior concerns). Compared to White parents, Black parents reported significantly fewer autism concerns and fewer social and restricted and repetitive behavior concerns. However, Black parents did not report significantly fewer non-autism concerns. Race did not influence parent report of disruptive behavior concerns. Lower reporting of autism concerns by Black parents may impact providers' abilities to identify children who need further screening or evaluation.

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.