Disparities in Diagnosis and Service Access

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

At the Journal of Autism and Developmental Disorders,Waganesh A. Zeleke, Tammy L. Hughes and Natalie Drozda have an article titled "Disparities in Diagnosis and Service Access for Minority Children with ASD in the United States. The abstract:

This study examined children with an autism spectrum disorder (ASD) using data from the 2011 Survey of Pathway to Diagnosis and Services national data set (n = 1715). When comparing white and minority families, results indicate there were no differences between the child’s treatment needs based on the number and type of ASD symptoms or insurance coverage. However, minority parents were less likely to contact a doctor or health care professionals about their concerns, waiting years, rather than months as described by white families, to have the child evaluated. Although both white and minority families received similar types of care (e.g., conducting developmental tests, making a referral to a specialist, suggesting that the parent discuss the concern with the school), white families reported they were more formally engaged in the diagnostic process and subsequently visited a larger variety of service providers. White parents were more satisfied with the services that their child received from doctors and other health care providers whereas minority families indicated school services were more responsiveness to their needs. Recommended outreach efforts are suggested and described.

From the article:

Data from this study highlights the role school services are already playing for minority families. Although insurance coverage was the same for both groups, minority families indicated that the schools were the most responsive to their needs. These results may be due to the outreach that  is already required via special education law. The process,
called Child Find (20 U.S.C. 1412 a (3)) requires districts to formally notify residents that their children may be eligible for services from birth through the age of 21. Although the process for contacting the school can vary by state or district, most often the community is notifed via flyers or other written announcements, often twice a year, that families may bring their children in for a variety of screening procedures (e.g., vision, hearing, physical, social-emotional, language, motor and cognitive development) free of charge. This process allows schools to help families access early intervention services including head start and other programs. Also, it helps families identify underlying medical conditions (e.g., ADHD) and developmental disabilities (e.g., ASD).
Although the data suggest that schools have been more successful that the general health care system that does not mean that best practice standards have been achieved

Difference? Social Disability? Medical Disability?

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

Yuval Levental at Scientific American:

The autism researcher Simon Baron-Cohen published an article, “The Concept of Neurodiversity Is Dividing the Autism Community,” where he defends the neurodiversity perspective. There are several specific arguments in his article, but overall, he views autism as a biological difference, not a disability.

Aiyana Bailin, a disability rights advocate, wrote a response titled “Clearing Up Some Misconceptions about Neurodiversity,” where she claims that while she supports neurodiversity, she believes that autism is best understood through the social model of disability. This means that the negative aspects of autism are caused by a lack of external accommodations, such as in improper work environments.

Advocating for medical research, former president of Autism Speaks Liz Feld has stated that one third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are nonverbal. Feld claims that no accommodation could solve those specific difficulties, and that they interfere with their quality of life. In 2018, the National Council on Severe Autism was founded to take action regarding those concerns, with its founder, Jill Escher, stating that “For countless families devoted to the well-being of their disabled loved ones, the daily challenges can be overwhelming, and the prospects for the future extremely bleak.”

Section 811

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Housing is a big one for autistic adults.

From the Congressional Research Service:

The Section 811 Supportive Housing for Persons with Disabilities Program was created in 1990 as part of the Cranston-Gonzalez National Affordable Housing Act (P.L. 101-625). (The program is codified at 42 U.S.C. §8013.) Until the enactment of Section 811, the Section 202 program provided housing for persons with disabilities.

Through Section 811, HUD provides capital grants to nonprofit organizations to create rental housing that is affordable to very low-income households (income at or below 50% of AMI) with an adult who has a disability.30 The program also funds project rental assistance contracts to subsidize the rent paid by tenants. Housing built with capital grants may include group homes, independent living facilities, multifamily rental units, condominium units, and cooperative housing. Section 811 developers must provide supportive services to those residing in the units. In addition, through FY2010 the Section 811 program created tenant-based rental assistance, sometimes called "mainstream vouchers," that tenants could use to find housing in the private market, much like Section 8 vouchers. However, since FY2011 (based on a law enacted in 2010 [P.L. 111-374]), Section 811 tenant-based assistance has been funded via the Section 8 account. Also as part of P.L. 111-374, Section 811 rental assistance funds were made available to be used in conjunction with capital funding from other sources (such as LIHTC and HOME funds). (For more information about the Section 811 program, see CRS Report RL34728, Section 811 and Other HUD Housing Programs for Persons with Disabilities, by Libby Perl.)

1,172

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth. From CDC:

From January 1 to August 1, 2019, 1,172 individual cases of measles have been confirmed in 30 states. This is an increase of 8 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000.

Autism and 2020 Candidates

In The Politics of Autism, I discuss the issue's role in presidential campaigns.

Andrew Yang at the Tuesday debate:

What we have to do is we have to say look, there's record high GDP in stock market prices, you know what else they're at record high is? Suicides, drug overdoses, depression, anxiety. It's gotten so bad that American life expectancy had declined for the last three years.

And I like to talk about my wife who is at home with our two boys right now, one of whom is autistic. What is her work count at in today's economy. Zero and we know that's the opposite of the truth. We know that her work is amongst the most challenging and vital.

The way we win this election as we redefine economic progress to include all the things that matter to the people in Michigan and all of us like our own heath, our well being, our mental health, our clean air and clean water, how are kids are doing.

If we change the measurements for the 21st century economy to revolve around our own well being then we will win this election.

Rosie Perper at Business Insider:

2020 candidate Marianne Williamson responded to questions on vaccinations during an interview with MSNBC on Wednesday, touting unsupported claims that there were far fewer cases of chronic illness when fewer vaccines were taken during her childhood.

In an interview with MSNBC host Ari Melber, a day after her appearance in the first CNN Democratic debate in Detroit, Williamson addressed past controversial comments made on mandatory vaccinations. She has previously described mandatory vaccination as "draconian" and "Orwellian."

Speaking to Melber on Wednesday, Williamson claimed that when she was a child vaccines were less widespread and chronic illness was less common.

Marianne Williamson grilled by MSNBC on her anti-vaxxer past https://t.co/SYcORPGL9E

— The Daily Beast (@thedailybeast) August 1, 2019

Working in AI

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.

John Murawski at WSJ:

Businesses scrambling for artificial-intelligence talent are tapping an unusual resource: people with autism.

Ernst & Young LLP, Credit Suisse Group AG , Dell Technologies Inc., Microsoft Corp. , DXC Technology Co. and other companies are hiring autistic applicants for AI jobs through neurodiversity programs they have established. EY, a professional services firm, is also advising a dozen Fortune 500 companies on starting similar programs.

Autistic workers are often hyper-focused, highly analytical thinkers with an exceptional proficiency for technology, said several company officials who have hired people on the spectrum. Many are capable of working long hours on repetitive AI tasks, such as labeling photos and videos for computer-vision systems, without losing interest. Others have a high capacity for logical reasoning and pattern recognition, enabling them to systematically develop and test AI models.

Demand is soaring for workers with skills in AI, data science and related areas. CompTIA, a tech trade group, said in June that the IT jobless rate fell to 1.3% in May, a 20-year low, intensifying competition for scarce talent.

Meanwhile, many autistic adults lack jobs. About 42% of autistic students who had special education in high school had no paid job in the first six years after leaving high school, according to a 2015 study by Drexel University researchers.

All good, but important to remember that not all autistic people are tech whizzes. Many have their strengths in other areas.

English Learners

In The Politics of Autism, I discuss the relationships of autism, class, race, and ethnicity.

At New America, Janie Tankard Carnock and Elena Silva have a report titled "English Learners with Disabilities: Shining a Light on Dual-Identified Students."

Most notably, school systems over- and under-identify students based on the type of disability. For instance, the most common category for all students with IEPs is specific learning disability (SLD), which covers 34 percent of students who qualify for special education services. Speech/language impairment is second at 19 percent.SLD is defined under IDEA as “a disorder in one or more of the basic psychological processes involved in understanding or in using language that is spoken or written, that maymanifest itself in the imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations.” The category includes a range of “perceptual disabilities,” including dyslexia, dyscalculia, and dysgraphia.

National research indicates that the categories of SLD and hearing impairment have higher proportions of students also identified as ELs [English Learners], while other disability categories such as autism and emotional disability have lower proportions of students who are also identified as ELs. According to the U.S. Department of Education, "Among ELs with disabilities, nearly 50 percent had a specific learning disability, compared to nearly 38 percent of students with disabilities who are not ELs. Similarly, 21 percent of ELs with a disability, compared to 17 percent of non-ELs with a disability, were identified as having a speech or language impairment."

For dual-identified students, one of the biggest questions revolves around whether to integrate home language supports. Similar to debates in EL education, some educators fear that using the home language will confuse students and delay progress. However, in an academic review of over 60 studies spanning 30 years, no research supported this conclusion. Rather, compared to English-only approaches, researchers found that interventions that used both home language and English result in similar or even greater rates of growth in English abilities. In New York, leaders have acted aggressively in light of this research base, promoting bilingual education for all children—including ELs with disabilities—and launching the nation’s first dual language program for students with autism.

Janie Tankard Carnock, From Blueprint To Building: Lifting the Torch for Multilingual Students in New York State (Washington, DC: New America, November 2016); and Michael Vaughn, “Angelica Infante-Green on Creating the Nation’s First Dual Language Program for Children With Autism,” Education Post, January 11, 2017

VR and Police Interactions

In The Politics of Autism, I discuss interactions between police and autistic people.   Things can get out of hand.  

Rita Giordano at the Philadelphia Inquirer:

Skylar [Armstrong, 17], who is on the autism spectrum, is learning how to interact with police officers through the use of virtual reality. The Children’s Hospital of Philadelphia’s Center for Autism Research (CAR) and the creator of Floreo, an immersive viewing/education system, are examining whether virtual reality can be an effective tool to teach people with autism how to respond to law enforcement officers they may encounter in the real world.

A 2016 Florida case that almost ended in tragedy was the inspiration for the Floreo system. In an incident that drew national outrage, a North Miami police officer fired three times at an autistic man holding a silver toy truck, which the officer said he mistook for a weapon. The shots missed the autistic man, but struck and wounded his caretaker, who was on the ground with his hands raised, shouting at the officer not to shoot.
...
Virtual reality training, researchers hope, can help people with autism learn to handle difficult encounters. A virtual encounter with an officer has the person with autism getting experience being questioned — What are you doing here? What is your name? — and give appropriate verbal responses. (Some programs go so far as to advise people with autism to come out and say it to an officer.)

“A virtual interaction is a really useful tool because people on the spectrum need more practice than other people, and police officers are not readily available to handle that,” said Joseph McCleery, a lead researcher with the study and executive director for academic programs in the Kinney Center for Autism Education and Support at St. Joseph’s University.

1,164

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

From CDC: "From January 1 to July 25, 2019, 1,164 individual cases of measles have been confirmed in 30 states. This is an increase of 16 cases from the previous week. This is the greatest number of cases reported in the U.S. since 1992 and since measles was declared eliminated in 2000."

Antivaxxers

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

At The Daily Beast, Jordan Julian writes about antivaxx celebrity Rob Schneider:

On Thursday he wrote on Twitter, “Dear @LorenaSGonzalez respectfully, either accept my offer to debate you on the merits of sb276 or refuse and kill this awful piece of Government OverReach and admit that the PEOPLE HAVE SPOKEN and want to KEEP MEDICAL DECISIONS MADE BY PARENTS NOT FACELESS BUREAUCRATS.”

Based on the comedian’s liberal use of Caps Lock, I can’t say I blame Gonzalez for not taking him up on his offer.

As it turns out, Schneider and Gonzalez have a years-long history of feuding. In response to Schneider’s pushback against her 2015 bill, Gonzalez tweeted a photo of herself on the phone with the caption, “I’m calling back @RobSchneider to discuss the FACTS around #measles #immunizations and our #CAleg bill.” This isn’t even the first time he has challenged her to a debate. As highlighted in a 2017 John Oliver segment, she once responded to the actor’s foolish request on Facebook, writing, “Let’s be honest…that is 20 minutes of my life I’ll never get back arguing that vaccines don’t cause autism with Deuce Bigalow, male gigolo.”

Schneider says that's he is not anti-vaxx.

Marianne Williamson says that she is not anti-vaxx.

Bonkers Florida  Congressman Bill Posey says that he is not anti-vaxx.

Jenny McCarthy says that she is not anti-vaxx.

RFK Jr. says that he is not anti-vaxx.

And even Trump says that he is not anti-vaxx.

In fact, most antivaxxers say that they aren't anti-vaxx.

Home-Schooled and Unvaccinated in California

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

Soumya Karlamangla at LAT:

California is one of only three states that does not allow parents to opt out of vaccines due to their beliefs.

Public health advocates have lauded the law’s success. In the first year the law was in place, the state’s kindergarten vaccination rate shot up above 95% for the first time in a decade.

But the law’s implementation has also coincided with an increase in parents choosing to home-school their kids — and not vaccinating them.

In the school year that ended in June, there were 6,741 home-schooled kindergartners without their shots in California, compared with 1,880 in the 2016-17 school year, according to state data. Overall, 1.2% of the state’s kindergartners were home-schooled and unvaccinated in the last school year, according to state data. (The state health department collects vaccination data only on kindergartners and seventh graders.)

And then the antivaxxers went after the reporter:

Dr. Bob Sears, a prominent critic of vaccine laws, asked his followers to contact me because of my latest article on immunization. thank you for the intelligent feedback, will keep it in mind pic.twitter.com/gJ8J1rCzy9

— Soumya (@skarlamangla) July 26, 2019

this was Sears‘ post, which marshaled an army that landed in my inbox pic.twitter.com/e6MDYI6oF6

— Soumya (@skarlamangla) July 26, 2019

a sampling of my inbox pic.twitter.com/E4YH6byl1y

— Soumya (@skarlamangla) July 26, 2019

"Health" Sites That Promote Antivaxx Myths and Conspiracy Theories

In The Politics of Autism, I look at the discredited notion that vaccines cause autism.  Twitter, Facebook, and other social media platforms have helped spread this dangerous myth.

John Gregory at STAT:

According to analysis by my employer, NewsGuard, NaturalNews.com articles have declared the measles outbreak a “false flag” that originated with “infected migrants.” Similarly, Adams’ network has reported that an outbreak in New Hampshire was caused by the vaccine itself (a false claim based on state officials having mistakensomeone’s reaction to the vaccine as a confirmed measles case). And the network has been relying on an old “Brady Bunch” episode as evidence that a measles infection is “typically very mild, much like getting chickenpox,” overlooking the serious complications such as pneumonia and encephalitis that typically accompany the disease.
...
NewsGuard was co-founded last year by journalist and entrepreneur Steven Brill (known in part for his health care reporting) and former Wall Street Journal publisher Gordon Crovitz. In rating news and information sites in the U.S., Italy, U.K., France, and Germany, it has discovered a diverse spectrum of health sites. These range from green-rated peer-reviewed medical journals such as the New England Journal of Medicine to hundreds of red-rated conspiracy-minded sites such as NaturalNews.com and Collective-Evolution.com, where vaccine-autism stories can be found next to articles claiming the 9/11 terrorist attacks were staged.

Americans who search symptoms or diseases online may come across well-sourced health information on sites such as WebMD or Healthline. But also high up in search results and social shares are sites with names such as GreenMedInfo and Healthy Holistic Living, which present themselves as authoritative reference guides on health topics while relying on false claims and misrepresented sources to promote alternative medical treatments.

While both of those sites promote a disproven link between vaccines and autism, their deceptive practices go beyond questioning vaccine safety.

Least Restrictive Environment

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

A July 18 release from COPAA:

Today, a diverse coalition of professional, legal and advocacy organizations met with Department of Education Chief of Staff Nate Bailey, Acting General Counsel Reed Rubenstein and OSERS Assistant Secretary Johnny Collett to discuss what we considered to be an imminent threat of a policy reinterpretation of the Least RestrictiveEnvironment (LRE) provisions, which is a cornerstone of the Individuals with Disabilities Education Act (IDEA). Our concern was generated by credible information that the Department of Education was planning to alter or reinterpret the law’s  presumption -- that all children with disabilities will be educated in the general education classroom; except in the rare circumstance that the student cannot get a satisfactory education in that environment even with supplementary aids and services. Any reinterpretation of LRE would alter or weaken IDEA’s clear requirement that general education must be the first consideration for placement for every student.

At today’s meeting, we were assured by Mr. Bailey that there would be no such reinterpretation of LRE in the immediate future, and that the Department of Education (Department) would uphold the law. However, they noted that nothing was off the table as part of the Department’s Rethink Framework. They provided assurances to us that they would collaborate with stakeholder groups and experts in the field, though we made it clear to them that we would oppose any and all reinterpretations of LRE – a basic tenet of IDEA - that could infringe upon the civil rights of children with disabilities.

The following is a statement that reflects the position of a broader coalition of stakeholders.

“Our coalition, which represents the diverse community of individuals and organizations  that care about, educate and protect the rights of children with disabilities, will vehemently oppose any effort put forward by the Department of Education that alters or re-interprets the law’s presumption. We are shocked that the Department even considered pursuing this course. However, with millions of children, families, teachers and school leaders behind us, we will work together to vigorously protect current law and fight any interpretation of LRE that alters or weakens IDEA’s clear requirement that schools and districts must consider general education first, for every child. We must protect IDEA’s presumption of general education because without it, we can expect to see increases in the inappropriate placement of children with disabilities in more segregated settings which contradicts the clear language, intent, and established legal precedent of the
IDEA.”

Read COPAA's Full LRE Letter to DeVos.

Read CCD LRE Principles.