"Ask an Autistic Person"

In The Politics of Autism, I write:

Arguing that autistic people themselves are the main stakeholders, groups such as ASAN have called for increasing this representation.[on IACC] They also argue that too much autism research spending goes to the “disease frame” and that no enough goes into improvement of services and the quality of life. In 2010, for instance, only 16 percent went to services and only 2 percent went to “lifespan issues” (e.g., the needs of adults on the spectrum).

John Elder Robison writes at STAT:

There’s a widespread view that autistic people need to “get scientists to listen to us,” and that “scientists need to stop ignoring autistic people.” That hasn’t been my experience at all. I first got involved with autism science when researchers from Harvard and the University of Washington tracked me down following the release of my first book and asked for my perspective on proposed work. Since then, autism scientists have welcomed me into their groups, answered my questions, sought my advice and paid attention to it.

Ten years ago, the director of the National Institutes of Mental Health invited me to serve our government in a similar capacity. With his support, and the encouragement of others in government, I have been proud to do that. Since then, I’ve been joined in this work by other autistic people. We’ve discussed hundreds of proposed research studies, and it has been gratifying to see some of them funded, with our ideas and suggestions integrated into research.

A larger movement now aims to recruit more so-called autistic advisers, and to encourage every researcher to seek input from autistic people when structuring studies. “Ask an autistic person,” has become a common refrain in the autism science community.

Autism and Health

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

A release from Autism Speaks:

Autism Speaks today issued the first in a series of annual, in-depth reports on special topics in autism. Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism gathers into one comprehensive report the most authoritative research and the latest guidelines on treatment and support of children and adults with autism spectrum disorder.

The last decade has brought tremendous advances in understanding and addressing the many physical and mental health conditions that often go hand-in-hand with autism. Those conditions include epilepsy, gastrointestinal distress (GI), sleep disturbances, eating and feeding challenges, attention deficit and hyperactivity disorder (ADHD), anxiety, depression, schizophrenia and bipolar disorder. These issues can extend across the life span.

While each new piece of high-quality research adds to our understanding of autism, it also adds to the complexity of developing the best practices to address the diverse needs of the autism community.

Health problems attributed to autism may instead be symptoms of a different condition - one that is treatable. For example:

• Children with autism are almost 8 times more likely than typical kids to have chronic GI distress. The report includes expert guidance on when to seek help for "picky eating," which could be a sign of GI problems.

• More than half of people with autism have sleep disturbances, which may contribute to daytime behavioral problems. A model parent-education program teaches autism-specific sleep guidelines.

• 30 to 60 percent of people with autism have symptoms of ADHD. Research shows that personalized treatment with cognitive-behavioral techniques adapted for autism may help.

The special report's Facts and Figures Supplement provides data on prevalence, screening and diagnosis, the cost of services and treatment, adult needs, and funding for research, among other categories.

"We now know more about autism than ever before, but each new piece of research paints an even more complex picture of the disorder," said Thomas Frazier, PhD, Autism Speaks chief science officer. "For the first time, our report pulls together the most up-to-date research on autism, and presents it in easy-to-understand terms. We hope people with autism, parents, communities, and health care providers will use this information to make the best possible decisions for their particular needs and to enhance the quality of life, now and in the future."

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Autism and Health: Advances in Understanding and Treating the Health Conditions that Frequently Accompany Autism is available at http://www.autismspeaks.org/specialreport.

GAO Report on Transition and the Federal Bureaucracy

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  

The Government Accountability Office has a new report titled "Youth with Autism: Federal Agencies Should Take Additional Action to Support Transition-Age Youth."  The summary

According to GAO’s nationwide survey of school district special education directors, GAO estimates that about 85 percent of districts in school year 2015- 16, provided youth with Autism Spectrum Disorder (ASD) services such as instruction on life, social, and behavioral skills, as they transition from high school to adulthood. ASD is a group of complex developmental disorders characterized by difficulties with social interactions, communication, and repetitive behaviors. Districts provided these services as part of the planning for the transition to adulthood required by the Individuals with Disabilities Education Act (IDEA). Fewer, though still a majority of, districts reported providing certain types of employment-related supports. For example, GAO estimates that 69 percent provided work experiences and 63 percent provided job coaching. While the majority of districts reported providing transition services to students with ASD, the services provided varied by factors such as the size and poverty level of the district, according to GAO’s analysis of survey responses.

Youth with ASD face key challenges transitioning from high school to adulthood, such as untimely transition planning by school districts, complex adult service systems, and lack of job opportunities, according to stakeholders. IDEA requires districts to begin providing transition services when students with disabilities reach age 16, with the option to start earlier. However, according to GAO’s prior work and stakeholders GAO interviewed, providing discretion in this area may not serve some students well. School officials, advocates, and others report that earlier transition planning—with age 14 commonly cited—can have multiple benefits such as allowing more time to obtain important work and academic experiences; however, the Department of Education (Education) is not funding research on the appropriate age to begin transition planning. Unless Education, which administers IDEA, examines the merits of earlier transition planning, policymakers may not have critical information when considering changes to IDEA. Currently, about 32 percent of districts begin transition planning when students are older than age 14, according to GAO’s analysis of survey responses.

While the Department of Health and Human Services’ (HHS) Interagency Autism Coordinating Committee (IACC) has facilitated collaboration across its member agencies, including Education, to support research for transition-age youth with ASD, it has missed opportunities to collaborate with relevant nonmember agencies. Specifically, the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 calls for the IACC to include in its strategic plan, as practicable, services for individuals with ASD. However, HHS has not regularly engaged certain federal agencies that provide services or financial assistance to transition-age youth with ASD, but are not IACC members, such as the Departments of Labor and Housing and Urban Development. These agencies are not part of working groups tasked with updating the current strategic plan nor has HHS invited them to join the IACC. As a result, IACC may continue to miss opportunities to leverage the knowledge of other agencies—a leading practice for effective federal interagency collaboration—as it works to fulfill its expanded responsibilities under the Act and improve the well-being of individuals with ASD.

Work and Neurodiversity

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.

Susanne M. Bruyère writes at the blog of the Department of Labor:

Launched in 2013, SAP’s groundbreaking Autism at Work program set a corporate goal of employing 650 employees on the autism spectrum by 2020 across a wide range of job categories. One of the first steps has been changing the way the company interviews people with autism, offering something more akin to a trial work period rather than just structured interviews.

“Out of a hundred resumes I would send, I would only get one response back. And when I did apply, because I was a bit monotone or stiff during the interview, they overlooked me,” says Patrick, a current SAP employee on the autism spectrum whose life was changed by the Autism at Work program. Today, Patrick works as an IT project associate, having joined SAP through the successful program that has employed nearly 120 colleagues in nine countries.

SAP is not alone. Earlier this month, the company jointly hosted an event with the support of the Olitsky Family Foundation, the Stanford University Autism Research Center and my organization, Cornell University’s School of Industrial and Labor Relations. The Autism at Work Summit showcased how companies have implemented programs to harness the power of the untapped talent pool of adults on the autism spectrum, such as through initiatives at Microsoft, EY and Hewlett-Packard Enterprise. In fact, the ILR School’s K. Lisa Yang and Hock E. Tan Institute on Employment and Disability has proudly partnered with HPE to facilitate the distribution of materials to help interested employers globally develop initiatives to provide skilled employment opportunities for job seekers on the autism spectrum.

We were also very pleased to be joined at the summit by colleagues from the Department of Labor’s Office of Disability Employment Policy, because these companies’ experiences have broader implications, providing meaningful insight into workplace policies and practices that facilitate success for all employees, including those with disabilities. One clear example was a reaffirmation that matching job candidates’ skillsets to open jobs leads to better business outcomes

NIMH Research and Transition

In The Politics of Autism, I discuss the National Institutes of Health.

Joseph Gordon, director of the National Institute of Mental Health, writes at the NIMH website:

While continued research on interventions and services for young children with ASD is crucial, research on the needs of transition-age youth and adults with ASD is equally important. Despite this clear need, we know relatively little about how best to support individuals with ASD as they transition to adulthood. Postsecondary education and vocational training, supported employment, appropriate residential opportunities, continued development of social skills, and access to services and supports, including psychosocial interventions and technological supports, are all thought to be helpful to transition-age youth and adults. Nonetheless, the evidence base in support of these approaches is lacking, and precisely how best to meet the needs of transition-age youth and adults this need is unclear.

The NIMH is investing in research to remedy this lack of information. The ServASD initiative is funding efforts to develop and test the effectiveness of community-based interventions that can be delivered across a variety of service systems to improve functional and health outcomes of individuals with ASD throughout the lifespan, including the transition from youth to adulthood. These strategies take into account the structure and staffing of the service setting, such as educational, vocational, healthcare, and independent living programs, to ensure that, should the interventions prove effective, they can be delivered consistently and sustainably. Projects funded are aimed at developing and testing models for the delivery of needed services, including screening services, early intervention, transition services, and services for adults that target employment, social relationships, housing, and independent living.

Following up on the first successful round of ServASD grants, the NIMH issued two new funding announcements aimed at services for transition-age youth (RFA-MH-17-200 ) and adults (RFA-MH-17-205 ) with ASD. These announcements specifically target innovative models to help youth transition to adult supports and optimize the independence and functioning of adults with ASD.

The NIMH of course does not stand alone in the effort to improve the health and well being of individuals on the autism spectrum. As noted above, most of our research investments are complemented by significant investments made by our sister NIH institutes. Moreover, the Interagency Autism Coordinating Committee (IACC), of which I serve as chair, is tasked with ensuring that all government agencies that are involved in autism research and service efforts work together towards common goals. The IACC is responsible for creating and updating a government-wide strategic plan for ASD which addresses both research and services issues. The committee is in the midst of revising this plan, which should be completed within the next few months. Implementation of evidence-based practices for ASD interventions and services for all people on the autism spectrum is a recurring theme throughout the upcoming IACC Strategic Plan.

Efforts to develop and make appopriate interventions, supports and services available to individuals with ASD and their families are every bit as crucial as the efforts to understand the underlying biology I highlighted in my last message. For while increased understanding promises the possibility of transformative treatments in the future, we must also work to help those struggling now. NIMH and our partner institutes at NIH are committed to ensuring progress towards both short term and long term goals focused on addressing the needs and improving the lives of those living with ASD.

New Jersey and Prevalence Data

In The Politics of Autism, I discuss prevalence and talk of an "autism epidemic."

David Matthau reports at New Jersey 101.5:

New Jersey has the highest rate of autism of any state in the nation, according to the Centers for Disease Control — but advocates say that’s in part because we screen for it more.

“One in 41 8-year-olds have autism here in New Jersey,” said Suzanne Buchanan, executive director or Autism New Jersey. Autism affects a person’s ability to socialize with other people, and it gives people a restricted range of behaviors, interests and activities.

Buchanan said there are a number of reasons why New Jersey’s autism rates are so high.

“They can pretty easily be explained by the way the research is done and the reports that the researchers had access to,” she said. “Here in New Jersey we have access to both educational and health records, so if you expand the pool of kids that you’re screening, you’re going to find more kids.”

Measles and Somalis

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.

Lena Sun reports at The Washington Post:

Salah [Suaado, Somali immigrant mother of children with measles] no longer believes that the MMR vaccine triggers autism, a discredited theory that spread rapidly through the local Somali community, fanned by meetings organized by anti-vaccine groups. The activists repeatedly invited Andrew Wakefield, the founder of the modern anti-vaccine movement, to talk to worried parents.

 Immunization rates plummeted, and last month the first cases of measles appeared. Soon there was a full-blown outbreak, one of the starkest consequences of an intensifying anti-vaccine movement in the United States and around the world that has gained traction in part by targeting specific communities.

Uncertainty is a major theme of my book.  Although we know that vaccines do not cause autism, we are not yet certain about what does cause it.  And this uncertainty, in turn, gives rise to myths, misinformation, and conspiracy theory.  Sun writes in the same vein

While scores of studies from around the world have shown conclusively that vaccines do not cause autism, that is often not a satisfactory answer for Somali American parents. They say that if science can explain that vaccines do not cause autism, science should be able to say what does.

AHCA and Autism

In The Politics of Autism, I discuss the ways in which health insurance does and does not help autistic people.

A Thursday release from the Autistic Self-Advocacy Network:

The Autistic Self Advocacy Network (ASAN) condemns today's vote by the House of Representatives to pass the American Health Care Act (AHCA). The AHCA, if passed by the Senate, would slash Medicaid supports for Autistic adults and others with disabilities. It would also make health insurance unaffordable for millions of Americans with pre-existing health conditions, including autism 

No amount of backroom wheeling and dealing has changed the fact that, like earlier versions, this version of the AHCA would eliminate the federal government's commitment to pay its fair share of the costs of the Medicaid program. This would lead to $880 billion less in federal funding for Medicaid programs over the next ten years. 10 million Americans with disabilities, including autistic children and adults, depend on Medicaid for basic health coverage. Medicaid also provides in-home supports to millions of Americans with disabilities who would otherwise be forced to move to an institution. These devastating cuts to Medicad mean that states will be forced to slash Medicaid coverage, especially coverage for the long-term services and supports that allow us to remain in the community.

The AHCA would also allow health insurance companies to impose dramatic price hikes for people with pre-existing conditions, such as autism and other diagnoses associated with autism like psychiatric disabilities and epilepsy. States could also chose to let insurers charge more for or stop covering essential health benefits, like emergency room coverage, preventative care, or speech and occupational therapy–services people with disabilities depend on to live good lives. Those who cannot afford these increased premiums will be forced into separate “high-risk pools,” even though high risk pools have never been able to provide adequate coverage at affordable rates for people with disabilities. This bill will devastate millions of Americans, including the disability community and including autistic people across the country. It must be stopped.

Transition to Adulthood

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At HHS  Robin Harwood, Health Scientist and Tom Novotny have a blog post titled "Youth With Autism Spectrum Disorder Transitioning To Adulthood."

Fifty years ago, when I was an 8-year old child, autism was believed to be uncommon, with only 1 child in every 2 or 3 thousand receiving such a diagnosis. It was probably the last thing a teacher or parent thought of when they observed what they may have thought was a socially awkward child trying to navigate the complex hierarchies of the classroom and playground.

Today, with improved national awareness and greater ability to identify and diagnose children with what is now called Autism Spectrum Disorder (ASD), we know far more about how ASD manifests itself and how common this condition is. ASD involves impairment in social interactions and restricted or repetitive behaviors and interests. Its manifestations can range widely from mild to very extensive. Only about one-third of children with ASD have an intellectual disability. About one-quarter fall into the below-average range, while nearly one-half are average or above average intellectual ability. Unfortunately, this means that many children with ASD may not qualify for special education services because they are within the typical range academically or because they do not present with any specific behavioral problems.

In 2000, about 1 in 150 children was identified as having ASD at the age of 8 years; by 2012 (the most current estimate), this had risen to 1 in 68, in large part due to improved diagnostic tools and awareness by health and education professionals. It is not surprising that we are now experiencing a surge of young people with ASD transitioning to adulthood. Based on U.S. Census data and ASD prevalence estimates, over a half million youth with ASD will turn 18 over the next decade. Unfortunately, they are entering a health and social service system that is largely unprepared for them, one that often lacks many of the resources that youth with ASD need for a successful transition to adulthood.

New and expanded models of service and health care delivery are needed that ensure coordinated and comprehensive care across what have traditionally been different service systems. For children, the educational system provides most supports for those with ASD, but for adults, the health and social services available are more complex and not often specific to the needs of persons living with ASD.

It is vital that supports and services be comprehensive, coordinated and individualized to each person’s needs. For example, in addition to medical care, one young adult with ASD may need vocational rehabilitation services and assistance with independent living, whereas another may particularly need behavioral health care and social skills supports for the workplace.

An important consideration for the transition period is anticipating individual health care needs. Recent research has revealed relatively poor health outcomes over the lifespan among adults with ASD, finding that when compared with the general population, those with ASD:

• Die an average of 16 years earlier;
• Are 40 times more likely to die prematurely of a neurological condition (such as epilepsy) if they also have an intellectual disability;
• Are nine times more likely to die from suicide;
• Are at heightened risk for conditions such as depression and anxiety; and
• Are at higher risk for other non-communicable diseases, including type 2 diabetes and heart disease.

The need for improved individualized planning, access to support services, and specialized health care through the transition period to adulthood and beyond is vital for improving the health outcomes and community integration for youth with ASD.

Currently, only about 1 percent of autism research, both private and publicly funded, is devoted to ASD in adulthood, including the transition to adulthood. More research on transition issues, as well as development and evaluation of models of appropriate care and service delivery, are an urgent public health need, as a half million youth with ASD will become adults over the next decade.

To learn more about Autism Spectrum Disorder visit HHS.gov/autism.

Coding Autism

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. 

A release from Coding Autism:

Every year, the number of people diagnosed with autism rises, however there are simply not enough quality programs designed towards training adults with autism with real-world career skills. As a result, too many are either unemployed or working in menial jobs below their skill level. To help adults with autism learn the fundamental skills necessary to secure an entry-level web developer job, Coding Autism has launched a crowdfunding campaign to help fund their training program and allow contributors to provide for scholarships so the entire 15-person first class can attend tuition-free.

Coding Autism's first web development boot camp is called the ASPIRE Web Development Immersive. This is a 15-week, full-time course where students will be learning the fundamental skills of coding. The first class will take place at Hub 101 in Thousand Oaks, CA (Greater Los Angeles Area) with online classes planned in 2018.

Coding Autism has announced a new program to train those with autism how to code
"It is completely unacceptable that our autistic community is experiencing an over 80% unemployment and underemployment rate," said Oliver Thornton, CEO & co-founder of Coding Autism. "As passionate advocates who have either been diagnosed with autism ourselves or have family members affected with autism, we understand that with the right resources, training, coaching and environment that individuals with autism can thrive in the workforce."

By founding Coding Autism and launching the ASPIRE Web Development Immersive, Mr. Thornton believes that they can create highly qualified, skilled, and eager to work autistic employees to fill job vacancies in the tech industry.

Research has shown that typical autistic characteristics such as attention to detail, affinity for repetitive tasks and introversion are all traits that lend themselves to becoming a successful employee within the tech industry. With the $50k+ average annual salary for entry-level, full-time web developers, tech is an attractive industry in which to pursue a career.

Over the last decade, companies such as Microsoft and SAP have implemented autism hiring initiatives. This was done not to combat autistic unemployment, but because they have seen that adults with autism can be exceptional employees and drive innovation when provided the right structure, mentorship and on-boarding. Students that want to enroll can sign-up to receive more information at www.CodingAutism.com.

A video can be seen at HERE.

About Coding Autism:

Coding Autism is a full-service professional coaching and training company that trains adults on the autism spectrum in professional skills such as software engineering, quality assurance, and web development. We also assist our graduates in finding employment within the software and technology industries. We do so by providing services such as immersive programs and bootcamps, resume workshops, career counseling, interview preparation, and coaching/mentorship, all of which is designed around providing an environment where people on the spectrum can thrive. More information is available at http://www.CodingAutism.com.

Describing Discrimination in Housing

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

In Provo, Utah, Braley Dodson writes at The Daily Herald:

“When we go apartment hunting with kids, a lot of the landlords want BYU students because they have these expectations of how BYU students act and their standards,” said Kari Bushman, off-campus housing specialist at ScenicView Academy, a nonprofit school in Provo that helps people on the spectrum adjust to adult life. “That is their ideal renter, although they are not necessarily BYU-approved housing.”

When someone on the spectrum may look a little different and seem a little different, it can be hard to charm a landlord into offering a lease.

“It is unintentional discrimination of, I have a one-bedroom apartment and I have to choose between the cute little BYU couple and this guy who weirded me out,” Bushman said.

Law Enforcement as an End Run Around IDEA

In The Politics of Autism, I discuss interactions between police and autistic people. 

The recent arrest of an autistic 10-year old in Florida highlights the relationship of education and law enforcement. David Perry writes at CNN:

Samantha Crane, a lawyer and director of public policy for the Autistic Self Advocacy Network, said that schools should at least develop "behavior intervention plans" to ameliorate situations like this, although often such plans are too "coercive" in design.

Why are schools so reliant on law enforcement? Crane told me that she and other disability rights advocates are worried that schools are using law enforcement to sidestep compliance with the Individuals with Disabilities Education Act (IDEA), which was passed to ensure that students with disabilities received appropriate services and education.

She said, "By referring a kid to law enforcement, the school can bypass IDEA's procedures for suspension and expulsion of kids with disabilities."

If a behavior is determined to be disability-related, the school must address it as an educational issue. But, she said, "There's no such requirement when referring a kid to law enforcement. Schools are actually telling teachers and paraprofessionals to press charges against students, in order to get the students out of their class."

Odd Fellows Disqualify Autistic Youth

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

Greg Hadley reports at McClatchy that the Odd Fellows gave an award to Niko Boskovic, then took it back.

The Portland, Oregon, teen’s essay on the history of Ukraine was thoughtful and well-written, his letters of recommendation praised him, and his interviews with local lodge members went well. Boskovic was the “clear winner” of the local Portland lodge’s essay contest, which meant he had earned a trip to visit the United Nations, according to The Oregonian.

But once the national organization learned that Boskovic, a 15-year-old high school sophomore, is autistic and would need a chaperone in New York City, their tune changed, his family says.

After several emails and calls went unanswered, Boskovic’s mother, Loreta Boskovic, received an email from the organization’s executive director.

“The Board of Directors has instructed me to tell you this delegate will not be accepted for the tour,” the director wrote, per The Oregonian.

Loreta said she never received a written explanation for why her son was rejected from the trip, per KGW.

“We can't get any explanation in writing from them, but when I spoke with the gentleman who’s the board chair for the UN Youth Program, he said ‘we are not equipped to accept people with disabilities,’” Loreta said.

According to KPTV, the national organization told the Boskovics that they have rejected winners in the past with wheelchairs too.

This is what Odd Fellows say they believe:

•  Wise and serious truths and opens up before its members opportunities for useful service.
• Belief in a Supreme Being, the Creator and Preserver of the Universe.
• The lesson of fraternity, that all are of one family and therefore brethren.
• The importance of the principle of Friendship, Love and Truth.
• The privilege and duty of individual sympathy, mutual assistance and every-day service to ones fellows.
• That humanity was intended to be one harmonious structure.
• That each individual is a unit in that God-made temple.
• Its members how to stand on their own feet, yet walk in step with their neighbors.
• The difference between right and wrong.
• That it is more blessed to give than to receive. 

Read more here: http://www.miamiherald.com/news/nation-world/national/article147775799.html#storylink=cpy