FAPE Case to the Supreme Court

In The Politics of Autism, I write about IEPs:

At these meetings, the district has several advantages, starting with Board of Education of the Hendrick Hudson Central School District v. Rowley (1982), the first IDEA case to reach the Supreme Court. Amy Rowley was a hearing-impaired girl whose parents wanted her to have a qualified sign-language interpreter in all of her academic classes. The Court said that the district was already supplying her with sufficient supports, and that the law did not require this additional step. Even though the legislation’s sponsors said that its goal was educational equality, the majority found that there was no substantive language in the statute itself regarding the level of education that children with disabilities must get:

While Congress sought to provide assistance to the States in carrying out their constitutional responsibilities to provide equal protection of the laws, it did not intend to achieve strict equality of opportunity or services for handicapped and nonhandicapped children, but rather sought primarily to identify and evaluate handicapped children, and to provide them with access to a free public education. The Act does not require a State to maximize the potential of each handicapped child commensurate with the opportunity provided nonhandicapped children.[i]

[i] Board of Education v. Rowley, 458 US 176, at 177.  Online: http://supreme.justia.com/us/458/176/case.html.

At Education Week, Mark Walsh reports that the Supreme Court has granted review in an important case about the meaning a free appropriate public education.

The case, Endrew F. v. Douglas County School District RE-1 (No. 15-827), raises an important question that has divided federal appeals courts: What level of educational benefit must a child receive under his or her individualized education program, or IEP, to satisfy the demands of the Individuals with Disabilities Education Act?

The U.S. Court of Appeals for the 10th Circuit, in Denver, ruled last year in the case of a Colorado child with autism that because the child's public school IEP had provided him with "some educational benefit," the Douglas County district had provided a "free, appropriate public education" under the IDEA.

The 10th Circuit court thus rejected a private school reimbursement for the parents of the boy identified as Endrew F. after the parents had pulled him from public school amid the dispute over his 5th grade IEP.

In an August 2015 decision, the 10th Circuit court panel acknowledged that several other federal courts of appeals have adopted a higher standard that requires an IEP to result in a "meaningful educational benefit."

But the 10th Circuit, agreeing with a lower court in Endrew F.'s case, said that a key 1982 Supreme Court precedent on special education, Board of Education of the Hendrick Hudson Central School District v. Rowley, merely requires an IEP to provide "some educational benefit."

Brown Signs Bill to Address Dangers on the School Bus

In The Politics of Autism, I write about the everyday struggles facing autistic people and their families -- such as dangers on the school bus.

KCAL-TV reports:

The parents of a special-needs student who died after being left on a school bus in Whittier on a hot summer day thanked Gov. Jerry Brown on Wednesday for signing legislation that requires school buses to have an alarm system to ensure students are not left behind.

“Although we tragically lost our son Paul last year after he was left behind on a school bus for seven hours, we know that the signing of this bill is a warm hug from heaven that will enable all children who ride a school bus to arrive at their destination safely,” said Eun Ha Lee, mother of Hun Joon “Paul” Lee.

The 19-year-old with autism died after being left on a bus for nine hours in 90-degree heat Sept. 11, 2015.

Senate Bill 1072 or the Paul Lee School Bus Safety Law, authored by Sen. Tony Mendoza, D-Artesia, will require school buses in California to be equipped with child-safety alarms beginning 2018.

The alarm system triggers a loud sound when the bus is turned off. The driver must walk to the back of the bus to turn off the alarm, and at the same time check to make sure no students are still on board.

Proposed ABLE Act Changes

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

A September 21 release from Senator Richard Burr (R-NC):

The Senate Finance Committee today advanced the ABLE to Work Act and the ABLE Financial Planning Act – two bills sponsored by Senator Richard Burr (R-NC) and Senator Bob Casey (D-PA) aimed at enhancing ABLE accounts. The ABLE to Work Act builds on the success of the ABLE Act by making it possible for people with disabilities who work to save an additional amount in an ABLE account without risking loss of benefits. The ABLE Financial Planning Act will allow financial rollovers from 529 college savings plans to ABLE accounts.
...
Background:

The ABLE to Work Act expands on the goals of the ABLE Act by encouraging work and self-sufficiency. The legislation allows individuals and their families to save more money in an ABLE account if the beneficiary works and earns income. Specifically, an ABLE beneficiary who earns income from a job could save up to the Federal Poverty Level, which is currently at $11,770. The bill will also allow ABLE beneficiaries to qualify for the existing Saver's Credit when they put savings in.

Text of the ABLE to Work Act is available here.

The ABLE Financial Planning Act would allow families to rollover savings in a 529 college savings plan into an ABLE account. Many families save for a child’s college education by opening a 529 account, sometimes before their child is even born, only to learn later that their child has a severe disability like autism. In other cases, a child could incur a disability from a tragic accident. In such instances, these families have funds trapped in a 529 that they could use to help cover their child’s lifelong expenses. If they withdraw the funds for anything other than college expenses, they face taxes on their withdrawals. The ABLE Financial Planning Act would help these families by allowing them to rollover the funds in their 529 account into an ABLE account for their child.

Text of the ABLE Financial Planning Act is available here.

In 2014, the bipartisan group of lawmakers led the effort to pass the Achieving a Better Life Experience (ABLE) Act, which lets families who have a child with a disability save for their long-term care through 529-style savings accounts. The ABLE Act was a significant step forward and has been heralded as one of the most important pieces of disability legislation since the Americans with Disabilities Act (ADA).

Read Senator Burr’s op-ed on the ABLE Act here.

A Dubious Event

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

Seema Yasmin writes at The Dallas Morning News:

An autism summit in Dallas this weekend features medical professionals who have been disciplined for mistreating children, alongside celebrities who shun science and claim vaccines are dangerous. Autism advocates say the event offers false hope to parents by promoting miracle cures and treatments proved to be dangerous and ineffective.

The Autism Education Summit is hosted by Generation Rescue, an organization co-founded by anti-vaccine advocate Jenny McCarthy, who has a son with autism. McCarthy will be joined by Bexar County District Attorney Nico Lahood, who also claims vaccines cause autism.

...

"A number of these speakers are opportunists and predators who prey on the fears and the desperation of parents who have kids with autism," said Dr. Peter Hotez, a pediatrician at Baylor Medical Center in Houston whose daughter has autism. "I understand how desperate and hopeless a parent can feel having a child with autism and it doesn't get better with age because now we're dealing with a young adult with autism."

Studies show one third to 43 percent of families pay for sometimes costly and often unproven alternative treatments for children with autism.

Hotez is concerned that the autism summit is using high-profile speakers to sell false hope to parents like him. "These speakers are offering every type of flim-flam therapy you can imagine, from hyperbaric oxygen therapy to chelation. There's one guy who says autism is caused by parasitic worms," Hotez said.

Autism and Employment

In The Politics of Autism, I discuss the employment of autistic adults.

Abigail Abrams writes at The Washington Post:

Federal law obligates educators to help children with disabilities develop a plan for entering adulthood, but a2014 report from the A.J. Drexel Autism Institute found that just 58 percent of high school students with autism had such a plan by the required age. Once individuals with autism leave the education system, they lose access to support services, specialized counselors and the routine of a structured environment.

“When people hit 21, they call it a cliff. The services really do fall off, particularly for individuals who have gone to college, because I think the expectation is that, ‘Well you’ve made it through college, getting a job should be the easy part,’ ” said Marcia Scheiner, who runs a program based in New York to help adults with Asperger’s syndrome — a mild kind of autism — find competitive jobs. She started the program after seeing the challenges her own son faced because of Asperger’s.

The 2014 report found that two-thirds of young people with autism did not move on to employment or other education in the first two years after leaving high school, and for more than a third, this continued into their 20s. Young adults with autism were also more likely to be unemployed than their peers with other disabilities. Employment data is scarce for autistic individuals, but researchers have estimated that between 70 and 90 percent of autistic people are unemployed or underemployed nationally.

“Until we as a society, from government through everything, see that a nation that has a 70 percent unemployment rate for people with autism and people with disabilities is a problem, it ain’t going to work. We have to make a critical commitment that this is wrong,” said Scott Badesch, president of the Autism Society, a national advocacy group.

Rumor Communities

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

At Social Science Quarterly, Jill A. Edy andErin E. Risley-Baird have an article titled "Rumor Communities: The Social Dimensions of Internet Political Misperceptions."  The abstract:

Objective

This study illuminates the communicative and social qualities of naturally occurring public resistance to authoritative debunking of political misperceptions, rumors, and conspiracy theories. Developing the concept of a “rumor community,” it highlights aspects of rumoring processes overlooked by psychological approaches common in misperception research.

Methods

Over 2,000 user-generated comments from the “vaccines cause autism” rumor community, produced as the medical study that had sparked the rumor was retracted and ultimately denounced as fraudulent, are examined for their contribution to the public conversation about vaccine safety.

Results

Rumor community members publicly counterargue debunking messages, which creates a communication environment offering argumentative resources to community members and reaffirming the community's solidarity. Members assert their credibility to gain authority to speak, countering science with personal experience. Highlighting their interconnection with more conventional social groups and venerable social truisms, members generate discourse that legitimates their beliefs.

Conclusions

The process of rumor debunking does not solely involve psychological persuasion but must also account for the social geography of rumor communities and their contributions to the communication environment.

From the article:

Little is known about how such source credibility claims impact audiences, but enticing anecdotal evidence suggests eyewitness authority may be distinctively powerful in online political communication. Research in another online political context revealed that factual evidence was contested, but personal experience was accepted as incontrovertible (van Zoonen et al., 2007). The rumor community’s personal experiences may thus be a uniquely powerful tool for resisting the scientific discourse in debunking messages.

...

The response of the vaccines-cause-autism rumor community to repeated debunking of its central raison d’etre reveals ongoing work to preserve ambiguity. Anecdotal evidence from other high-profile political misperceptions, such as the “birther” community, suggests this may be a typical response from a threatened rumor community. This  lluminates the function of some psychological counterarguing that may undermine attempts to debunk rumors. Yet, a second challenge for rumor debunking arises  pecifically from public expression of counterarguments. Public counterarguments may serve as a source of social support for the rumor community, reminding members that others share their beliefs and providing them with new resources for resisting debunking  essages. Recognizing that rumor believers not only hold beliefs individually but may also participate in communities that help them sustain their beliefs suggests the process of rumor debunking is not just one of psychological persuasion but must also take into account the social geography of rumor communities. Indeed, future research on political misperceptions should investigate whether members of a rumor community develop a group identity such that renouncing a misperception carries the risk of social sanctions from fellow group members. Future research should also explore interactions between community members in public spaces, for while public expressions of shared belief may be enough to sustain a community, building it is almost certainly an interactive process.

The ways rumor community members establish credibility to address the misperception also reveals a communication environment much changed from that of early studies of how public officials regained control of a rumor. The more diffuse political  ommunication environment made possible by the Internet (Stroud, 2008), and the decline in widely accepted social authority (Quandt, 2012), may mean social authorities may have less power to stymie rumors than earlier scholars ascribed to them (e.g., Larsen, 1954). Eyewitness authority grounded in personal experience may trump official or scientific explanations in Internet contexts, raising new challenges for those seeking to debunk misperceptions.

A rumor’s survival may depend not only on preserving ambiguity, contesting institutional authority, and providing social support to a community of believers. Misperceptions may also survive because they effectively express venerable truisms of political culture. Many of the vaccines-cause-autism rumor community’s comments express widely shared political stances and social values such as distrust of big business, government, and news media. They also express solidarity with respected social groups, parents, and the autism community. A modernist take on these types of appeals might classify them as conspiracy theories, amplifying the unlikely and elaborate connections between social actors implied in such theories. However, the essential appeal of many conspiracy theories is that they speak to deep-rooted beliefs about how the social world works. The more effectively they embrace those beliefs, the greater their likely staying power and the greater the risk they will not only survive but potentially spread to broader publics.

• Larsen, O. N. 1954. “Rumors in a Disaster.” Journal of Communication 111–23
• Quandt, T. 2012. “What’s Left of Trust in a Network Society? An Evolutionary Model and Critical Discussion of Trust and Societal Communication.” European Journal of Communication 27(1):7–21.
• Stroud, N. J. 2008. “Media Use and Political Predispositions: Revisiting the Concept of Selective Exposure.” Political Behavior 30:341–66.
• van Zoonen, L., F. Muller, D. Alinejad, M. Dekker, L. Duits, P. Vis, and W. Wittenberg. 2007. “Dr. Phil Meets the Candidates: How Family Life and Personal Experience Produce Political Discussions.” Critical Studies in Media Communication 24(4):322–38.

Autistic People Face Barriers to Health Care

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

Dora Raymaker and colleagues have an article in Autism titled "Barriers to Healthcare: Instrument Development and Comparison between Autistic Adults and Adults with and without other Disabilities."  The abstract:

Our objective was to use a community-based participatory research approach to identify and compare barriers to healthcare experienced by autistic adults and adults with and without other disabilities. To do so, we developed a Long- and Short-Form instrument to assess barriers in clinical and research settings. Using the Barriers to Healthcare Checklist–Long Form, we surveyed 437 participants (209 autistic, 55 non-autistic with disabilities, and 173 non-autistic without disabilities). Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation. Top barriers were fear or anxiety (35% (n = 74)), not being able to process information fast enough to participate in real-time discussions about healthcare (32% (n = 67)), concern about cost (30% (n = 62)), facilities causing sensory issues 30% ((n = 62)), and difficulty communicating with providers (29% (n = 61)). The Long Form instrument exhibited good content and construct validity. The items combined to create the Short Form had predominantly high levels of correlation (range 0.2–0.8, p < 0.001) and showed responsiveness to change. We recommend healthcare providers, clinics, and others working in healthcare settings to be aware of these barriers, and urge more intervention research to explore means for removing them.

From the article:

In summary, autistic adults experience many similar barriers to healthcare access as people with other types of disabilities; however, they experience them at higher rates, and also experience unique autism-specific barriers that may be less likely to be addressed in modern healthcare systems.

Autistic adults in our study experienced many of the barriers identified in studies of adults with other disabilities, such as increased socio-economic barriers, difficulty getting sufficient support, and discrimination (World Health Organization (WHO), 2011; WHO, 2013). There were also similarities between the autistic and disability groups in barriers related to executive functioning. Difficulties with planning, sequencing, and understanding complex instructions are reported by many individuals on the spectrum (Landa and Goldberg, 2005) as well as by others (e.g. those with traumatic brain injury, intellectual disability, attention-deficit hyperactivity disorder). Interventions targeted toward improving healthcare access for people with disabilities more generally may also help autistic people, and existing literature and interventions related to these items may be transferrable to autistic patients.

Results also reflect the differences in barriers autistic individuals may experience due to characteristics associated with ASD; specifically, barriers related to emotional regulation, patient-provider communication, and sensory issues.
...
We recommend that clinicians, disability support professionals, and policy makers be aware of the barriers to healthcare access commonly faced by individuals on the autism spectrum, and work with individuals and systems to reduce those barriers.

• Lagu T, Iezzoni LI and Lindenauer PK (2014) The axes of access–improving care for patients with disabilities. The New England Journal of Medicine 370: 1847–1851.
• World Health Organization (WHO) (2011) World Report on Disability. Geneva, Switzerland:WHO.
• World Health Organization (WHO) (2013) WHO | Disability and health. Available at: http://www.who.int/mediacentre/factsheets/fs352/en/index.html

Junk Science and Autism

Junk science is a big problem for the autism community, whether it involves the discredited vaccine theory or the bogus "complementary and alternative" treatments that unscrupulous vendors peddle to desperate parents.

In The Politics of Autism, I write:

Many articles and blog posts arguing for the vaccine-autism link have the trappings of genuine academic research: tables, graphs, citations, and scientific jargon. Some of the authors have credentials such as M.D. or Ph.D. degrees. None of these things is a guarantee of scientific value, as the history of science is full of crackpot theories (e.g., AIDS denialism) that are the heavily-footnoted products of people with letters after their names. But most people will not be able to spot the scientific weaknesses of such work. Outside of academia, few understand concepts such as peer review. Jordynn Jack describes one dubious article that appeared in a non-peer-reviewed publication: “Regardless of the scientific validity of the article, though, the writers perform the writing style quite effectively. It would be difficult for the layperson to distinguish this article from any other scientific research paper, especially if one did not investigate the nature of the journal … or of the scientific response to the article.”

Alisa Opar writes at The Atlantic and Spectrum:

For most parents, who have little understanding of how science is done, wading through claims made about alternative treatments can be befuddling. Even when someone knows to search PubMed, an online database of journal abstracts, she might not understand that obscure journals tend not to be taken seriously, and might not pick up on the difference between types of studies. A case report about a single child may be of purely scientific interest as an avenue for further investigation, for instance, whereas results from a rigorous randomized controlled clinical trial with a large number of participants can provide solid information on whether a treatment works.

What’s more, media outlets often exaggerate the significance of findings. Take secretin, a peptide hormone that stimulates the secretion of digestive fluids from the pancreas. In the late 1990s, three children with autism were reported to improve dramatically after taking secretin. (The caveat is that this was an unblinded study—that is, the investigators were aware that all three children had received secretin and not a placebo.) Word spread, parents heard about it on the news, and demand for secretin skyrocketed. But more than a dozen subsequent double-blind studies—in which neither the families nor the researchers knew which participants were in the placebo arm—found no evidence of effectiveness.

“As a scientist, you can end up on the front page of the science section of The New York Times with a new link to autism, but not really know if it’s causal,” says Catherine Lord, a clinical psychologist who heads the Center for Autism and the Developing Brain at New York-Presbyterian Hospital in New York City. In other words, just because researchers find a connection between autism and a gene or some other factor does not mean that it causes the condition—or that blocking it can reverse the effects of autism. “I think it’s probably very confusing for parents. So when someone says, ‘I can take what that scientist said and make it meaningful for you right now,’ that’s incredibly appealing.”

Clinton's Speech on Disability

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue,

John Wagner and Abby Phillip write at The Washington Post:

Democratic presidential nominee Hillary Clinton is pushing intensively to win over a group of voters who don’t typically get much attention during elections but who have become an increasingly potent political force: disabled people and their families.

With the race tighter than it was a month ago and Clinton struggling to generate enthusiasm within the Democratic base, her appeal to disabled people and their families comes amid a broader effort to win over voters. After weeks of mostly attacking Republican Donald Trump, she is highlighting specific policy prescriptions while trying to show a more compassionate side and present an affirmative vision for the country.

Also see a radio report from Tamara Keith.

In Orlando yesterday, Hillary Clinton spoke about her disability policy:

First, we’re going to focus on jobs and incomes. I’m going to fight to give more Americans with disabilities the chance to work alongside those without disabilities and do the same jobs for the same pay and benefits. People with disabilities shouldn’t be isolated. They should be given the chance to work with everyone else. And we’re going to eliminate the subminimum wage, which is a vestige from an ugly, ignorant past. Good work deserves fair pay, no matter who you are.

Second, we’re going to work with our colleges and universities to make them more accessible to students with disabilities. To have a truly inclusive economy, we need a truly inclusive education system. So let’s raise our standards. For too long, accessibility has been an afterthought. Let’s make it a priority in our curriculums, our classrooms, and the technology our students use. It’s like what Anastasia said about her sister. She can communicate through a computer. Then let’s make sure kids who can communicate that way have the opportunity to do so.

Third, we’re going to partner with businesses and other stakeholders to ensure those living with a disability can get hired and stay hired. As part of that, we’ll launch a new effort we’re calling Autism Works to help people with autism succeed in the workplace.

Fourth, let’s build on the success of the Americans with Disabilities Act by finally ratifying the United Nations Convention on the Rights of Persons with Disabilities. It has the strong backing of leaders across the political spectrum, and it’s a chance to show American values and American leadership. And I have to tell you ever since I was first lady, I have had the great privilege of traveling the world on behalf of our country. When I was secretary of state, I went to 112 countries. And one of the things that I have noticed is how far behind many countries are in how they treat people with disabilities. Very often people with disabilities from the time they are babies and toddlers are locked away, basically forgotten. I want us since we have been the leader in this area to get that ratified and then to demonstrate to other countries what we have done and are doing to give dignity and opportunity to people with disabilities.

At The Atlantic, David Graham notes that disability politics used to be bipartisan.

 In 2012, the Senate failed to ratify a United Nations treaty called the Convention on the Rights of Persons With Disabilities. Democrats supported the treaty, but Republicans were split. On the pro side were George H.W. Bush and Bob Dole, the former Senate GOP leader and presidential candidate who was injured during World War II. On the con side were a bloc who warned on extremely dubious grounds that the treaty would allow the UN to meddle in U.S. courts. In the end, the treaty failed, despite Dole himself appearing on the Senate floor to lobby. It needed two-thirds of votes to pass, but was only able to garner 61.

The Trump campaign has only exacerbated any such splits. The most egregious moment came when he mocked New York Times reporter Serge Kovaleski. Trump falsely claimed he’d seen Muslims celebrating 9/11 in the streets in New Jersey, and pointed to reporting Kovaleski, who was then a reporter for The Washington Post. When Kovaleski, who has a congenital condition affecting his joints, contradicted Trump, Trump mocked him, doing a physical impression of Kovaleski

(Note, however, that passage of the ABLE Act was bipartisan, indeed almost unanimous.)

The Cost of Special Ed? Who Knows?

Uncertainty and complexity are major themes of The Politics of Autism.

Jennifer Guerra reports at MPR:

Figuring out all the different pots of money that go into paying for special education is complicated, but you know what’s even more complicated? Figuring out how much special education in Michigan actually costs. And if we don't know that, we don't know whether we're spending too much or too little on special ed.

It’s so complicated even the people who specialize in school finance can’t figure it out.

The Michigan Legislature last year paid $399,000 to the Colorado-based firm Augenblick Palaich & Associates (APA) to figure out how much an adequate education costs in Michigan, and they came back with an amount: $8,667 per student plus extra for at-risk students and English-language learners.

But there was one glaring omission in the report: the cost of special education.

According to the report, “there was difficulty ensuring that the study team could account for all district expenditures for special education students.”

A Conference in San Francisco

In The Politics of Autism, I discuss the self-advocacy and the neurodiversity movement.

A release from AASCEND – the Autism Aspergers Spectrum Coalition for Education Networking and Development – in partnership with SFSU's Autism Spectrum Studies Program presents its 9th conference on adult autism:

Neurodiversity Leaders 2016: Adult Autism Advances
October 8, 2016
9:00-4:00 (registration begins at 8:15)
Seven Hills Conference Center, 800 Font Blvd
San Francisco State University
SF, CA 94132

The conference salutes neurodiversity and showcases prominent national and local leaders on and off the autism spectrum. The innovative ideas and personal passion of these leaders influence how we live, work and think, inspiring our way forward.

Neurodiversity Leaders 2016 features keynote addresses by Sondra Williams, recipient of the Ohio State Governor's Award for her remarkable journey from traumatic childhood autism to national autism leadership, and by"Hackie" Reitman, M.D., founder of the online neurodiversity community Different Brains, author of Aspertools, and parent of a daughter on the autism spectrum. Hackie is known as The Fighting Surgeon in recognition of his early career as a professional heavyweight boxer.

Michael Bernick, former head of the California State Labor Department, moderates a plenary session showcasing successful career paths for spectrum adults.

A second plenary session features a convocation of leading national autism advocacy organizations addressing the present and future of autism advocacy in America.

Breakout sessions explore Dating on the Spectrum; Sports and Autism; Autism Employment in the Arts; Supports for College Success, Diagnosis and Disclosure; LinkedIn as an Employment Tool; and AASCEND's path-breaking Autism Job Club

Ticket price includes lunch and refreshments. Conference registration begins at 8:15am, October 8. Please arrive early. Some program changes are possible.

DETAILS AND TICKETS HERE 

Social Class and Service Use

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

At The Journal of Autism and Developmental Disorders, Cathina T. Nguyen, Paula Krakowiak, Robin Hansen, Irva Hertz-Picciotto, Kathleen Angkustsiri have an article titled 

"Sociodemographic Disparities in Intervention Service Utilization in Families of Children with Autism Spectrum Disorder." The abstract:

This study investigates whether sociodemographic factors are associated with utilization of intervention services for children with autism spectrum disorder (ASD) enrolled in the Childhood Autism Risks from Genetics and the Environment Study. Maternal ethnicity, insurance status, and education for 696 families of children with ASD were available. Children of Black mothers entered intervention earlier compared to White mothers (2 vs. 2.6 years; p = 0.001). Having public insurance was associated with receiving <15 a="" associated="" bachelor="" classroom-based="" degree="" differences="" h="" having="" href="http://www.autismpolicyblog.com/2015/05/class-and-barriers-to-service-use.html" individual="" of="" receiving="" services.="" services="" suggest="" that="" these="" was="" week="" while="" with="">SES may be a factor

in utilization of services. Efforts should be made to ensure that interventions offered are culturally and linguistically accessible.From the article:

We found that the age of entry for classroom-based intervention services was significantly younger for children of Black mothers than White mothers. A possible explanation for this observation is that because we did not capture age of entry into individual services, children of White mothers may have received individual services at an earlier age and resulted in delayed entry into center-based services. Conversely, this trend might be explained by Black mothers wanting and seeking opportunities to enter their children into classroom-based services sooner in order to allow them to reduce the impact on employment (Folk and Beller 1993). General public childcare trends also show that Black families are more likely to utilize center-based care in comparison to their Hispanic and White counterparts (Radey and Brewster 2007). These trends, although not specifically about families of children with ASD, may be the explanation for why we see children of Black mothers entering classroom-based intervention services earlier than children of White mothers. Another possible explanation of this trend is that children of Black mothers may have received a more general developmental delay or behavioral disorder diagnosis prior to an ASD diagnosis, which is consistent with previous research (Mandell et al. 2007; Fountain et al. 2011; Magana et al. 2013). Another diagnosis at an early age may have allowed them to enter services and treatment earlier.

We also observed that children from families whose primary language spoken at home is not English had a slightly higher mean age of entry for classroom-based services and
were more likely to receive fewer hours/week (<15 a="" addition="" children="" compared="" english-speaking="" families.="" href="http://www.autismpolicyblog.com/2016/03/advocacy-program-for-latino-families.html" in="" individual="" of="" services="" to="">Hispanic families

were more likely to receive no individual services (32.5%) than to receive individual services (24.3%), a trend not seen in any other race/ethnicity group.

Autism and Poor Neighborhoods

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

The data also seem to show differences among demographic groups. Multiple studies find higher rates of autism among non-Hispanic whites than among Hispanics or African Americans. Why the disparity? White people tend to have higher income and educational levels, thus greater access to medical professionals and social networks that provide information about autism. Problems of cultural communication and clinician attitudes may delay diagnosis among nonwhites. In particular, primary care pediatricians find it more difficult to assess Spanish-speaking patients, and many do not do not offer screenings in Spanish.   

At Autism, Aisha Dickerson and colleagues have an article titled "Autism Spectrum Disorder Reporting in Lower Socioeconomic Neighborhoods."  The abstract:

Utilizing surveillance data from five sites participating in the Autism and Developmental Disabilities Monitoring Network, we investigated contributions of surveillance subject and census tract population sociodemographic characteristics on variation in autism spectrum disorder ascertainment and prevalence estimates from 2000 to 2008 using ordinal hierarchical models for 2489 tracts. Multivariable analyses showed a significant increase in ascertainment of autism spectrum disorder cases through both school and health sources, the optimal ascertainment scenario, for cases with college-educated mothers (adjusted odds ratio = 1.06, 95% confidence interval = 1.02–1.09). Results from our examination of sociodemographic factors of tract populations from which cases were drawn also showed that after controlling for other covariates, statistical significance remained for associations between optimal ascertainment and percentage of Hispanic residents (adjusted odds ratio = 0.93, 95% confidence interval = 0.88–0.99) and percentage of residents with at least a bachelor’s degree (adjusted odds ratio = 1.06, 95% confidence interval = 1.01–1.11). We identified sociodemographic factors associated with autism spectrum disorder prevalence estimates including race, ethnicity, education, and income. Determining which specific factors influence disparities is complicated; however, it appears that even in the presence of education, racial and ethnic disparities are still apparent. These results suggest disparities in access to autism spectrum disorder assessments and special education for autism spectrum disorder among ethnic groups may impact subsequent surveillance.

The conclusion of the article notes public health implications.

Using aggregate data from a multi-state surveillance study over five surveillance years, we identified demographic and socioeconomic factors associated with ASD prevalence estimates including race, ethnicity, education, and income. Specifically, children of Hispanic ethnicity do not experience optimal ascertainment through both school and healthcare sources as often as children of other ethnicities. Furthermore, maternal education and median income of neighborhoods increase the likelihood of case ascertainment through both sources. Determining which specific factors influence disparities is complicated; however, it appears that even in the presence of education, racial disparities are still apparent. Future research should further evaluate whether these patterns are still apparent after adjustment for private insurance. Furthermore, development of interventions for diagnosis of ASD should focus on targeting populations at greater risk of going unnoticed.

Stein Takes Flak on Autism and Vaccines

In The Politics of Autism, I discuss the issue's role in presidential campaigns.    Previous posts excerpted the Republican platform and the Democratic platform.  Posts have also discussed Green Party candidate Jill Stein's equivocation on vaccines.

Stein appeared yesterday in Newark, Delaware. Matt Bittle reports at Delaware State News:

During the question-and-answer portion, one man pressed her about vaccines, leading to an outcry from other members of the audience. Earlier this year, Dr. Stein told the Washington Post she had “real questions” about vaccines, raising questions from some who thought she was lending credence to a largely discredited theory that posits vaccines cause autism.

She said Friday she believes a comprehensive study needs to be done to determine who developmental disabilities are increasing but “there is no evidence linking autism and vaccines.”

As the man continued to push Dr. Stein to go farther in repudiating the autism claim, interrupting her at one point, other listeners began calling for the next question, and the candidate turned her attention to another member of the audience.

National Resource Center for Self-Advocacy

In The Politics of Autism, I discuss the self-advocacy and the neurodiversity movement.:

A 1988 protest marked a turning point in the broad movement for disability rights. The president of Gallaudet College, a venerable institution for the deaf, announced his retirement. Many alumni and students hoped that Gallaudet would use the opportunity to choose its first deaf president. When it opted for a hearing person, the campus erupted. Students boycotted classes and attracted television coverage by gathering together and collectively saying “Deaf President Now” in sign language. Because the uprising took place in Washington DC, it made the national news. Students used early-model telecommunications devices to reach journalists and supporters across the country. Gallaudet’s trustees quickly yielded, appointing a deaf president and board chairman.

Up to this point, Americans had tended to see disabled people as unfortunates in need of charity. Now they got a glimpse from another perspective: the disabled as citizens demanding their due. After Gallaudet, the news media slowly started to frame disability as a rights issue.

A release from the HHS Administration for Community Living (ACL):

ACL is excited to announce the first-ever grant to establish a National Resource Center for Self-Advocacy (NRCSA) to empower people with intellectual and developmental disabilities (IDD) for enhancing their voice on issues important to their well-being and daily life. Self Advocates Becoming Empowered (SABE) will lead the effort in partnership with several organizations.

“The Developmental Disabilities Act was created to ensure ‘that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally-competent programs,” said Aaron Bishop, Commissioner for the Administration on Disabilities. “The National Resource Center for Self-Advocacy will support opportunities for people with intellectual and developmental disabilities to strengthen their skills and voice for this important self-advocacy role.”

The self-advocacy movement is a human and civil rights movement, stemming from the civil rights movement of the 1960’s, but led by individuals with intellectual and developmental disabilities to ensure they have the same rights, responsibilities, and opportunities as people without disabilities. Starting internationally more than 40 years ago, the movement has empowered individuals to make choices in their lives, provided opportunities to have a voice, and opened pathways for leadership development.

Following a series of regional Self-Advocacy Summits convened five years ago, the Administration on Intellectual and Developmental Disabilities, which is now part of the Administration on Disabilities within the Administration for Community Living, funded six technical assistance projects to support self-advocacy and share information. This new national resource center continues the mission of developing self-advocacy resources across the U.S. and will work during the next five years to:

• Compile resources, best practices, training curriculum, and success stories for an online clearinghouse accessible to the public;
• Research the history of the self-advocacy and other civil rights movements to understand their evolution, leadership, and best practices to produce a report and webinar on the findings;
• Provide training and technical assistance to new entities in addition to the established more than 1,000 self-advocacy organizations across the nation for advising, building consensus, recruiting youth, supporting grant writing, developing leaders, and more; and
• Establish a fellowship through mini-grants to disability organizations to create disability fellowships that offer leadership development and employment opportunities for fellows.

The center will collaborate with a diverse range of organizations including self-advocacy organizations, disability-related nonprofits, universities, state government agencies, and others to achieve the grant goals.

“The people affected by policy should have the greatest voice in developing it,” said Katherine Cargill-Willis, Program Specialist with AIDD. “With this grant, ACL aims to make this ideal more of a reality for people with disabilities.”

Self Advocates Becoming Empowered (SABE) will lead the effort as part of a $2 million, five-year cooperative agreement funded by ACL under the Administration on Disabilities as an AIDD Project of National Significance. Partner organizations on the new resource center include:

• Autistic Self Advocacy Network (ASAN)
• Green Mountain Self Advocates (GMSA)
• Heartland Self-Advocacy Resource Network (HSRN)
• North East Advocates Together (NEAT)
• Pacific Alliance
• Project Action!
• Our Communities Standing Strong (OCSS)
• Southwest Alliance
• Southwest Institute for Families and Children (SWI)
• TASH
• University of Missouri-Kansas City Institute for Human Development (UCEDD) (UMKC-IHD)

This project is part of an ongoing effort by ACL to amplify voices that are often missing from intellectual and developmental disability conversations, including self-advocates and people with and without disabilities from diverse communities. To this purpose, AIDD has awarded grants toUniversity Centers for Excellence in Developmental Disabilities, Education, Research and Service (UCEDD) for:

• Fellowships to support recruitment and retention of trainees with disabilities, and from culturally and linguistically diverse backgrounds. Participants complete a capstone project for creating systemic change for community-based activities.
• Planning partnerships with institutions that serve minorities to co-design training experiences that promote interdisciplinary approaches to research, training, and services.
• Diversity training across the UCEDDs to guide and sustain cultural competence within programs that serve people with developmental disabilities.

For more information, please email Katherine Cargill-Willis.

A Special Education Scandal in Texas

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

Brian Rosenthal reports at The Houston Chronicle that Texas has set an arbitrary cap of 8.5 percent on the share of students who get special education. The Texas Education Agency audits districts that serve "too many."

More than a dozen teachers and administrators from across the state told the Chronicle they have delayed or denied special education to disabled students in order to stay below the 8.5 percent benchmark. They revealed a variety of methods, from putting kids into a cheaper alternative program known as "Section 504" to persuading parents to pull their children out of public school altogether.

...

[In 2004] the agency set the target as one part of a new monitoring protocol known as the Performance-Based Monitoring Analysis System, or PBMAS. The instructions were clear: School districts could get a perfect score on that part of the scorecard by giving special education services to fewer than 8.5 percent of students. If they served more, they would lose points.

Districts that scored poorly on the PBMAS could be fined, visited by regulators, compelled to complete "Corrective Action Plans" or taken over entirely, the system manual said.
...

"We live and die by compliance," said Halcy Martin-Dean, the special education director inSeguin ISD, near San Antonio. "You can ask any special ed director; they'll say the same thing: We do what the TEA tells us."
...
They have used a broad array of tactics, according to interviews and a review of hundreds of Corrective Action Plans and other district records.

Many districts have discouraged parents from formally requesting special ed eligibility evaluations, in part because federal law states that schools must respond to written requests.

Helping Autistic College Students

In The Politics of Autism, I discuss the growing number of college students on the spectrum:

By most measures of economic well-being, young college graduates surpass their peers with less schooling. And this disparity is greater than in earlier generations. To some extent, then, the fate of autistic people hinges on their ability to get college degrees. About a third of autistic high school graduates eventually go on to some kind of postsecondary education, at least for a while. That rate is higher than one might have expected years ago, but lower than for all other disability groups except intellectual disabilities or multiple disabilities.

At Inside Higher Ed, Elizabeth Finnegan and Margaret Finnegan write:

Some positive changes are underway. More than 100 colleges now offer programs for students with autism, but most of them are private, expensive, residential programs. Meanwhile, research suggests that up to 80 percent of college students with autism at one point filter through community colleges, where students, often still highly dependent on family support, can live at home. Those institutions generally offer fewer resources for students with autism. If we are to meet the needs of neurodiverse students, public community colleges will need to lead the way.

In these days when most community college disability offices are underfunded -- Elizabeth’s community college does not even provide note takers -- meeting the needs of students with autism may seem daunting. But meaningful institutional changes do not need to strain budgets. For Elizabeth, the greatest support has often come from students who have chosen to act as social interpreters. A whispered word or two is often all she needs to better and more appropriately engage with her curriculum. Colleges like California State University at Fullerton already have mentorship programs that pair neurotypical and neuroatypical classmates.

We recommend expanding such programs so that peer mentors -- perhaps those offered the coveted privilege of priority registration -- work side by side with autistic students in the classroom. Of course, that brings us back to the privacy concerns voiced earlier. Peer mentors can only work with students who are willing to self-identify in the classroom as having autism, which is why autistic students themselves must also be involved in making campuses more responsive to their needs -- and that will only happen when students with autism bring neurodiversity into conversations about campus diversity.

Autistics on Campus

In The Politics of Autism, I discuss the growing number of college students on the spectrum:

We do know that autistic students suffer high levels of depression, anxiety, and social isolation. We also know that their difficulties can affect their academic performance. (Group projects can be hard.) They have to cope with these problems without the protection of an IEP, since the Individuals with Disabilities Education Act does not apply to higher education. The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 provide for certain accommodations (for instance, extra time for tests), but the student has to seek them. According to Jane Brown Thierfeld, co-director of an organization of professionals who assist autistic students, forevery student receiving special services, there  are one or two on that same campus who have not come forward.

At The State Press (Arizona State University), Emma Sounart writes:

Autistics On Campus began with a single interaction.

Maria Dixon, a clinical associate professor in the Department of Speech and Hearing Sciences at ASU, was approached at a Speech and Language intervention by two students with autism who were searching for a safer environment for students like them.
Both explained to her that they didn’t have any other friends who also had autism, so Dixon rallied them together to combine forces and start the community called Autistics On Campus.

As a part of Autistics On Campus, students with autism build their social interactions while also strengthening relationships with their peers, and students without autism grow in their acceptance toward all students and participate in the empowerment of those with autism through taking action.

Although a fresh club with under 25 members, this group of students already has a multitude of ideas flowing in for this semester. Their events balance advocacy work and social hangouts, ranging from Autism Awareness Month events to movie nights on campus. Autistics On Campus hopes to create an acceptance for what autism is as well as a much-needed support group for young adults and adults with autism.

More on Sears

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

Tara Haelle reports at Forbes that Dr. Bob Sears may lose his medical license for improperly exempting a toddler from vaccines.

But in fact, writing a potentially spurious medical exemption — while serious in itself given the medical notes he wrote — is just the tip of an iceberg in the sea of Sears’ alleged medical negligence and harms to public health. Known as a vociferous, and vitriolic, critic of both California’s mandatory vaccination law SB 277 – promoting “vaccine choice” – and the CDC’s recommended immunization schedule, Sears has made a name for himself by fear-mongering about vaccines while creating and promoting an “alternative vaccination schedule” that skips and/or delays vaccines that are crucial to protecting children from vaccine-preventable illnesses. The very low immunization rates in Southern California, where Sears practices, has been noted as a contributor to the Disneyland measles outbreak in 2015.

The specific charges Sears faces in this complaint are gross negligence, repeated negligent acts and failure to maintain adequate and accurate records, brought by complainant, Kimberly Kirchmeyer, the executive director of the Medical Board of California. According to the accusation, disciplinary actions if Sears is found guilty of the charges run from a public reprimand — little more than a slap on the wrist — to suspension or revocation of his medical license. A spokesperson for Sears responded to requests for a comment with a statement that Sears is not commenting at this time on the charges.

But the charges involve much more than writing a vaccine exemption letter. According to the accusation, Sears failed to test the same toddler for neurological problems after the child was hit on the head with a hammer and failed to investigate alleged vaccine reactions that, if they did occur, would have been life-threatening. He also prescribed garlic for the child’s ear infection despite there being no evidence of its effectiveness. Such departures from the medical standard of care prompt questions about what other ways Sears might be practicing negligently beyond this complaint

Autism, Vaccines,and Oz

In The Politics of Autism, I discuss the issue's role in presidential campaigns.   In this campaign, a number of posts have discussed Trump's support for the discredited notion that vaccines cause autism.  He also has a bad record on disability issues more generally.

Julia Belluz writes at Vox that Trump will go on Dr. Oz's show:

If the conversation turns to vaccines, we can expect Trump to share his dangerous views that they hurt children and cause autism. He has repeatedly pandered to vaccine deniers, and made public pronouncements about the alleged harms of these life-saving shots.
...
There’s overwhelming evidence that this is not true — that vaccines do not cause autism. And there’s also good evidence that when confidence in vaccines flags, vaccine-preventable diseases can make a comeback.

Oz — a cardiothoracic surgeon — isn’t known for being a tough interviewer, particularly when it comes to vaccine deniers. In the past, he’s been criticized for lending his giant platform to anti-vaxxers, including the alternative medicine doctor Joe Mercola and Robert F. Kennedy.

Sears Sanction

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

Steven Novella writes at NeuroLogica:

Dr. Bob Sears is a Capistrano Beach pediatrician who is famous for opposing mandatory vaccinations and the current CDC vaccine schedule. He has promoted his alternate vaccine schedule, which spreads out the vaccines much greater than the standard schedule. This has made him a darling of the anti-vaccine movement, an expert who supports part of their narrative (specifically, “Too many too soon” and parental choice).

Recently the Medical Board of California filed a complaint against Sears for “gross negligence.” There are three counts, the first for recommending a 2 year old patient not receive any further vaccines because of apparent reactions to previous vaccines. The complaint alleges:

Respondent was grossly negligent and departed from the standard of care in that he did not obtain the basic information necessary for decision making prior to determining to exclude the possibility of future vaccines, leaving both patient J.G, the patient’s mother, and his future contacts at risk for preventable and communicable diseases.

The complaint also alleges that Sears failed to adequately assess the patient after a head injury with complaint of headache, and also that he failed to keep adequate records by not filing the letter excusing the patient from vaccines in the chart.