Passage of Autism CARES

In The Politics of Autism, I write:

No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.

A release from Senator Mike Enzi:

U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime. The bill now heads to the president for his signature.

“I am glad the Senate unanimously reauthorized the Autism CARES Act to promote research, education and awareness into autism spectrum disorder and other developmental disabilities,” said Enzi. “This successful program helps us better understand causes and symptoms of autism spectrum disorder and improve the lives of millions of people affected by it.”

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One in 59 children nationwide have ASD, according to the latest study by the Centers for Disease Control and Prevention (CDC) released last year, a jump of 15% since the previous study was conducted in 2016 and up from one in 166 in 2005.

Autism CARES 2019 builds upon the current law, which expires in September, and shapes federal autism policy and investment in research, early detection and research to develop new treatments and therapies for those with ASD and other developmental disabilities.

The bipartisan Autism CARES 2019 affirms Congress’s commitment to individuals with autism spectrum disorder and other intellectual and developmental disabilities, and their families. In addition to reauthorizing existing federal autism programs through 2024, the legislation strengthens those programs by adding the phrase “across the lifespan” where appropriate to ensure they can address the needs of individuals with ASD and other intellectual and developmental disabilities throughout all stages of life.

Autism CARES 2019 also:

• Authorizes research under the National Institutes of Health (NIH) to address the entire scope of autism spectrum disorder;
• Designates regional centers of excellence for ASD research and epidemiology;
• Directs activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection;
• Authorizes $23.1 million to the CDC for developmental disability surveillance and research;
• Authorizes $50.6 million to the Health Resources and Services Administration (HRSA) for education, early detection, and intervention, and allows HRSA to prioritize new grant applicants in rural or underserved areas;
• Authorizes $296 million for the National Institutes of Health (NIH) for research;
• Requires the Department of Health and Human Services (HHS) to provide a report to Congress on the health and well-being of individuals of all ages with ASD and other developmental disabilities.

The Fight Over Julia

In The Politics of Autism, I write:

The most basic questions trigger angry arguments. For instance, into what category do we put autism in the first place? In 2013, President Obama said that “we’re still unable to cure diseases like Alzheimer's or autism or fully reverse the effects of a stroke.” The language of “disease” and “cure” offends some in the autism community. “We don’t view autism as a disease to be cured and we don’t think we need fixing,” says Ari Ne’eman of the Autistic Self-Advocacy Network. “We do feel comfortable with the word disability because we understand what it means.” From this perspective, autism is difference that requires accommodation, not an illness that requires eradication. Adherents of this position liken autism to homosexuality, which psychiatrists once deemed to be a disorder. Conversely, some parents take offense at opposition to a cure. “Anyone with the mental and verbal ability to challenge autism research is not autistic on a scale that I care to recognize,” writes autism parent James Terminello. “Opposition to finding a cure is particularly hurtful to parents who still mourn the loss of the child that could have been. A line has been crossed.”

At WP, Lindsay Bever writes of the controversy over Julia, the autistic Muppet on Sesame Street.

The Autistic Self Advocacy Network (ASAN), an organization run by and for autistic people, announced it had cut ties with “Sesame Street” after the children’s program partnered with Autism Speaks to make the Muppet the face of a public service campaign encouraging early screening and diagnosis of autism. ASAN has accused Autism Speaks of using “language of acceptance and understanding to push resources that further stigma and treat autistic people as burdens on our families.” It contends that resource materials from Autism Speaks encourage parents “to view autism as a terrible disease from which their child can ‘get better.’ ”
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Autism Speaks denied ASAN’s characterization of its approach, or resource materials. Lisa Goring, Autism Speaks’s chief strategic initiatives and innovation officer, said the group’s job “is to empower families with the information they need so their child can be successful.”

Jeanette Betancourt, senior vice president of U.S. social impact at Sesame Workshop, said Sesame is “saddened” ASAN has ended its relationship with the children’s program as it has been “incredibly supportive of our efforts along the way and of contributing to Julia.”

Transition Guidance

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.

Corey Mitchell at Education Week:

New guidance from the U.S. Department of Education spells out how school systems and state agencies can coordinate to help students with disabilities prepare for life after high school.

A 16-page Q&A produced by the agency's special education and postsecondary education offices outlines how schools can use the Individuals with Disabilities Education Act and vocational rehabilitation funds to support dual-enrollment programs, create college and transition options for students with intellectual disabilities, and finance other initiatives designed to ease the transition between grades K-12 and postsecondary education and training.

Buttigieg on Autism

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

Zack Budryk at The Hill:

South Bend, Ind., Mayor Pete Buttigieg (D), a 2020 presidential contender, spoke of the need for educators who understand the nature of autism in an interview Tuesday with the progressive organization Supermajority, adding that increased diagnoses are due to people coming “out of the shadows.”

Responding to a question from the mother of an autistic student, Buttigieg said “IEPs [individualized education plans] need to be adapted to support children with autism. Also more broadly, the federal law that creates opportunities for children with different abilities needs to be fully funded. It hasn’t been.”

“We need to make sure that educators and administrators are trained in how to support kids with autism because it’s way more kids than you would think, and we’re learning about this as time goes on [and] more diagnoses happen and more parents and kids come out of the shadows,” the South Bend mayor added.

“There are so many contributions that ... kids and adults with autism can make, but we’ve got to unlock their potential too,” he added, noting his husband Chasten’s experience teaching theater to autistic students, which he said shows him “just what is possible if you have teachers equipped with the right insight and expertise.”

Race and Special-Ed Teachers

 In The Politics of Autism, I write about special education and laws that affect students with disabilities, such as the Individuals with Disabilities Education Act. The books also discusses the experiences of different economic, ethnic and racial groups.

Madeline Will and Corey Mitchell at Education Week:

It's a constant struggle for school districts across the country to find qualified special education teachers. An extra challenge: finding special educators of color to help meet the needs of a student population that can be disproportionately nonwhite.

Just over 82 percent of special education teachers in public schools are white, according to 2011-12 federal data, the most recent available. Meanwhile, only about half of students receiving special education services are white, according to 2017-18 data.

From the Journal of Blacks in Higher Education:

A new study led by LaRon A. Scott, an assistant professor in the department of counseling and special education at Virginia Commonwealth University, offers strategies school districts can use to recruit and retain Black male teachers in special education programs.

According to Dr. Scott and his co-author, Quentin Alexander, an assistant professor of counseling education at Longwood University in Virginia, Black boys labeled with a disability are subjected to poor educational outcomes. And in special education, there is a smaller ratio of Black male teachers based on the disproportionately larger rate of Black students, particularly Black boys, enrolled in special education classes. For thousands of Black students in special education, they could go through their entire K-12 education without having a Black male teacher. As a result, students solely rely on their academic, social and interpersonal needs being met by special education teachers who represent racial and gender backgrounds that may be widely different.

In the paper the authors develop a strategy for increasing the number of Black male teachers who pursue careers as special education teachers. The strategy involves developing specific motivations for Black men to become special education teachers as well as focused strategies for recruitment and retention of Black males for these positions. They call for school districts to devote funding for these recruitment and retention programs and to offer mentors to the Black male teachers that are recruited.
Dr. Scott is a graduate of Radford University in Virginia. He holds a master’s degree in special education from Virginia Commonwealth University and an educational doctorate from Walden University.

The full study, “Strategies for Recruiting and Retaining Black Male Special Education Teachers,” was published on the website of the journal Remedial and Special Education. It may be accessed here.

Limited Trust in Vaccines

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread. 

CDC reports no new measles cases last week.  Unfortunately, the start of the school year means that more cases are likely to crop up in the months ahead.

A release from Harvard T.H. Chan School of Public Health:

A new poll from Harvard T.H. Chan School of Public Health and SSRS finds that Americans broadly support (84%) requirements for parents to have children vaccinated against preventable diseases like measles, mumps, and rubella in order to attend school.

But the poll also shows limited trust in vaccines and public health agencies. Just about half of adults (54%) think childhood vaccines are “very safe” for most children and only a third (37%) say they trust public health agencies “a great deal” for information about childhood vaccine safety.

“The public’s limited trust in both childhood vaccines and public health agencies makes room for anti-vaccine sentiment in exemption policy debates,” says Gillian K. Steel Fisher, senior research scientist in the Department of Health Policy and Management at Harvard Chan School and assistant director of the Harvard Opinion Research Program.

“Public health agencies need to partner with trusted health professionals, including doctors, nurses, and pharmacists, in order to protect public policy support for vaccines and ultimately children.”

Younger people (age 18-34) are less likely than the oldest generation (age 65+) to believe childhood vaccines are “very safe” (48% vs. 61%) or trust public health agencies for information about childhood vaccine safety (31% vs. 44%).

Among parents of children under 18, about one in seven (15%) say they have delayed or not given their child vaccines because of concerns about safety. Parents of children under 18 do not differ from those without children with respect to policy support, trust in vaccines, or trust in public health agencies for vaccine safety information.

IVF and ASD

Uncertainty and complexity are major themes of The Politics of Autism.  The topic encompasses many unanswered questions and affects people in diverse and unexpected ways.

At The Washington Post, Ariana Eunjung Cha reports on Danielle Rizzo, whose two sons are autistic.  Both were born as a result of in vitro fertilzation.

Rizzo filed a lawsuit in U.S. District Court for the Northern District of Illinois in July 2017. In her complaint, she alleged that [the sperm donor's] online profile was a lie and that he was not an “appropriate candidate for sperm donation.” She sued Idant and Daxor, Idant’s former parent company, under the state’s consumer fraud and deceptive practices act.

She says in the complaint that research, based on public documents and calls to his relatives, showed that the donor had no college degrees, had been diagnosed with ADHD, and “went to a school for children with learning and emotional disabilities.” (Idant, and other sperm banks, generally do not verify their donors’ medical and educational backgrounds.) Moreover, her attorneys wrote in the filing, “Donor H898 is a prolific sperm donor who has fathered at least 12 children through sperm donation, and that each of those children has either been diagnosed with Autism, or suffers from signs and symptoms associated with Autism.” In court documents, other mothers corroborated the story.

 Guidelines from the Society for Assisted Reproductive Technology, which represents fertility clinics in the United States, call for mandatory genetic testing for only one disease: cystic fibrosis. But most clinics say they test for several hundred. There is no test for autism.

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As of August, Repro Lab was still selling vials, priced at $450-$525, from the donor. A Repro Lab official said they received a report from an anonymous caller regarding an increased risk of autism, but the report was “unsubstantiated,” as the donor “did not report any history of autism in his family.”

“We would deny participation to a donor in our program if he or any first-degree relative had a history of autism,” the company said.

Self-advocates strenuously object to such policies.

 In The Politics of Autism, I write:

Consider the next possible step for in-vitro fertilization. Suppose that scientists refine pre-implantation screening so that they could tell whether a particular embryo’s genetic make-up entails a high probability of autism.  If so, then doctors would presumably discard it in favor of another embryo that they would implant in the mother’s womb.  Some say that we need to debate the use of such techniques to screen for autism.   Ethicist Wesley J. Smith disagrees: “That is like saying allowing eugenic cleansing for racial features is a debate we need have: Both are invidiously discriminatory and have no place in an enlightened, equality-believing society.”