Science and Autism

In The Open Journal of Political Science, Dana Baker writes:

As Debra Stone described, paradox defines policy making (Stone, 2001). One such paradox involves the tension in democratic politics between the responsibility to ensure the protection of unpopular science while respecting a boundary between science and politics which in the ideal firmly separates politics from the objectivity of science. The most passing reflection on the history of the twentieth century reveals the potential of both reliance on scientific objectivity and the politicization of science to at best set progress back and at worst lead to social injustice. In the case of autism related politics in the United States, negotiation of this paradox is demonstrated by the issue of thimerosal in vaccines. Intriguingly, the less popular science relied most ardently on the traditional hallmarks of scientific reputation.

Another paradox found in the roles of science in autism related policy involved the paradox of participation. Good practice in both democracy and science involves a broad basis of participation in which power of voice is ideally connected to the merit of the argument. Of course, both realms tend toward cementing of norms and power tied to money rather than evidence or persuasion. In part in response to the default norms which mainstream organizations engage as unquestioned truth, other autism related organization tend to advocate overt restriction participation in scientific discussion even while insisting that their voices should be better represented in autism policy discourse. The paradox strongly relates to the definition of science and the degree to which distinctions between basic and applied science have become more complicated in modern research. It is also a reflection of the expectation that public enjoy increased involvement in the articulation of scientific questions.

Finally, examination of use of science in autism related policy discourse turned up extremely limited discussion coming from the perspective of rights of individuals with autism, particularly outside of organizations explicitly committed to neurodiversity. The legislative discourse included no discussion of neurodiversity and limited discussion of rights. The discussion of rights that was found in the legislative discourse was generally set in opposition to science. Entitlements such as education or social services were mentioned as other important priorities needed for individuals with autism that should also be attended to while society waits for answers about autism. Typically such discussion was exclusively about children with autism and their nuclear families. Given the decades-long history of rights based disability policy, the lack of such discussion in autism related policy discourse could be considered surprising, if not, disappointing. On the other hand, in discourse relating to specifically the role of science in autism related policy, this circumstance could be considered less discouraging and, instead, a recognition that normative elements of public policy, such as the provisions for protecting the rights of historically oppressed individuals lies beyond the realm of science. In the end, the interactive goal of science and democracy should be mutual reinforcement and improvement.

In The Journal of Applied Research in Intellectual Disabilities, Travis Thompson writes:

Three main factors have contributed to the proliferation of autism research. Subsequent to the demonstration that many children with autism could be effectively treated using early intensive behavioural intervention (EIBI) methods (Løvaas 1987), the idea that autism was an immutable condition largely vanished. Autism has become an imminently treatable condition, given effective methods are used with sufficient intensity. Persistent barriers to treatment are continued theoretical quibbling, insufficient personnel training and limited political willingness to invest in treatment, although in some countries antiquated theoretical ideas persist (Feinstein, 2011; Haag et al. 2005). Second, it is widely recognized that autism has its basis in cerebral dysfunction, and some of the brain are as known to be involved in autism symptoms are established. Different types of events can lead to brain malfunctioning to varying degrees with corresponding variations in symptoms (e.g. genetic conditions, syndromal developmental conditions, toxin exposures). Autism is a family of overlapping conditions; there is no single homogeneous autism disorder. Third, several technological advances greatly contributed to a rapid increase in autism research and changes in practice beginning in the mid-1960s and abruptly increasing in the early 1990s. Without those technological advances, only a limited number of these discoveries would likely have occurred, and the lives of people with autism spectrum disorders would be more limited as a consequence.
...
Introduction for the first time, of a widely accepted and validated diagnostic instrument, the Autism Diagnostic Observation Schedule (ADOS) and its sister research instrument, the Autism Diagnostic Interview Revised (ADIR-R), made it possible to reliably distinguish individuals with autism spectrum disorders from those with other mental health conditions or developmental disorders by 2 years of age (Lord et al. 1989). The introduction of the ADOS and training of a substantial cohort of test examiners revealed that a great many more children met the criteria for autism than had previously been recognized. It became apparent that the earlier notion of autism from the 1960s was very misguided, and that many people with autism have some spoken intentional communication, exhibit social interest and display little aggression or self-injury, unlike what had previously been believed. Most of those people had gone undiagnosed prior to 1990, or if they were diagnosed, it was with learning disability or another mental health
label (Rutter 2005a,b).

• Feinstein A. (2011) A History of Autism: Conversations with Pioneers. Wiley-Blackwell, Inc., London, UK.
• Haag G., Tordjman S., Duprat A., Urwand S., Jardin F., Cl ement M. C., Cukierman A., Druon C., Du Chatellier A. M., Tricaud J. & Dumont A. M. (2005) Psychodynamic assessment of changes in children with autism under psychoanalytic treatment. International Journal of Psychoanalysis 86(Pt 2), 335–352.
• Lord C., Rutter M., Goode S., Hemmsbergen J., Jordan H., Mawhood L. & Schopler E. (1989) Autism diagnostic observaton schedule: a standardized observation of communicative and social behavior. Journal of Autism and Developmental Disorders 19, 185–212.
• Løvaas O. I. (1987) Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology 55, 3–9.
• Rutter M. (2005a) Aetiology of autism: findings and questions. Journal of Intellectual Disability Research 49(Pt 4), 231–238.
• Rutter M. (2005b) Incidence of autism spectrum disorders: changes over time and their meaning. Acta Paediatrica 94, 2–15.

Autism and IVF: More Contradictory Headlines

Laypeople looking for autism information may have a hard time sorting out headlines on the Web.  An earlier posts displayed contradictory headlines about a new study on the impact of in-vitro fertilization.  Here are additional examples:

From Bloomberg:

From New Scientist:

IVF, Autism, and Headlines

As previous posts have indicated, headline writers are not masters of nuance when it comes to the science of autism.  The following articles all describe the same study.

From The Independent:

From Reuters: 

From The Huffington Post:

From The Guardian:

Autism and College

Previous posts have discussed autistic college students. The Miami Herald reports on David Taylor, a student at the University of Miami who has ASD:

If he could begin his freshman year over, Taylor says he would access services and accommodations available to students with learning differences. Taylor is part of a growing population of students with autism who have the grades and intellectual capability to secure acceptance into a university, but lack the social and problem-solving skills to transition to college life.

And while colleges and universities offers accommodations like extra time on tests and tutoring for students with documented learning and physical disabilities, very few offer specific programs tailored to students with autism.

“What we find is that many students need more support than the accommodations they may be entitled to at a typical university, as mandated by the Americans with Disabilities Act,” says Diane Adreon, associate director of the University of Miami-Nova Southeastern University Center for Autism Related Disabilities (UM-NSU CARD).  [Also note section 504 accommodation plans. --ed.]

More than 20 colleges and universities offer programs specifically geared toward students on the autism spectrum, according to Jane Thierfeld Brown, Ph.D, co-founder of College Autism Spectrum, an organization that provides support and training for students, parents and professionals. Brown, director of student services at the University of Connecticut School of Law, is co-author of The Parent’s Guide to College for Students on the Autism Spectrum.

Read more here: http://www.miamiherald.com/2013/07/01/3480467/coping-with-autism-at-college.html#storylink=cpy

Outreach to Korean Americans

Earlier posts described a study about the prevalence of autism in Korea, and the reluctance of Korean parents to address the problem. The New York Times reports on an effort by Autism Speaks to encourage Korean Americans to get help for autistic kids.

“More so than other populations, Korean-Americans really measure their own self-worth, and the worth of the family, in terms of what the child is able to achieve and what the child means to the family,” said Roy Richard Grinker, a professor of anthropology at George Washington University and the senior author of the South Korea study.

...

It is a crucial moment for autism across the United States. The number of children who receive a diagnosis of autism has been rising for years, without any consensus about why, other than increased awareness of the condition. At the same time, autism itself is being redefined: the newest edition of the country’s manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger syndrome, under the umbrella of “autism spectrum disorder.” Some experts have predicted the change will lead to fewer diagnoses, and hence cuts in public spending on therapy and special education.

In New York City, the number of public school students classified as having autism this year, 10,199, or roughly 1 percent of enrolled students, is up 50 percent from four years ago, according to the city’s Education Department. Diagnoses among Asian students have also jumped. But while they make up 16 percent of the school system, they account for only 8 percent of those with autism diagnoses.

...

“We are trying to build a model, for outreach and facilitation, that would support immigrant families, minority families, to access services available from school systems and from cities and states,” said Andy Shih, an official at Autism Speaks who is managing the initiative.

As diagnoses of autism have become more common, some early intervention providers have taken advantage of the growth in public spending, and lax oversight, by billing for services that were not needed or never provided. Dr. Shih acknowledged that some businesses might “exploit parents scared and confused about how to best support their children.”

...

Unscrupulous providers are not the only potential pitfall. Young Seh Bae, 48, who leads a committee of the Korean American Behavioral Health Association and is the mother of a 16-year-old boy with autism, said she worried that a focus on Koreans, in both the South Korea study and the Flushing effort, could exacerbate stereotypes.

...
And though the study in South Korea was “rigorous,” Dr. Winston Chung, an assistant professor of psychiatry at the Geisel School of Medicine at Dartmouth, said it should be viewed carefully because the researchers used tools designed by a Western culture to measure children in an Eastern one. Typical behaviors in a “Confucian society,” where the norms for eye contact, gesturing social reciprocity and expressing oneself are “profoundly different,” and where the skill of nunchi — measuring someone’s mood and desires without speaking — is valued, could be misconstrued as autistic in some cases, he said.

Government Spending on Intellectual and Developmental Disabilities

The Wall Street Journal reports:

For the first time in at least 30 years, inflation-adjusted government spending on people with intellectual and developmental disabilities fell in the U.S.

Total spending reached $56.65 billion in the 2011 fiscal year—the most recent total—down 0.2% from the previous year, according to the 2013 State of the States in Developmental Disabilities, compiled by the University of Colorado. About three-fourths is paid by Medicaid.

Most of the spending, 59%, goes to smaller group homes of six or fewer people. About 11.5% is spent by state-operated institutions with 16 or more residents. Settings with seven to 15 people receive about 5% of the funding; large privately run institutions receive 3%.

Skepticism About the Pollution Study

At Forbes, Emily Willingham raises additional questions about a recent study purporting to show a possible relationship between autism and air pollution:

So we have five groups consisting of 65 mothers each, all nurses–occupational exposure comes to mind–and an estimate piled on top of an estimate. For example, addresses covered two to three-year periods even though gestation takes nine months:

Children born from 1987 to 1990 were assigned the geographic location of their mother in 1989 (the first year of study). Children born in 1991 or 1992 were assigned the mother’s mailing address in 1991, and births from 1993 to 2002 were assigned the nurses’ addresses, updated every other year, in similar manner.

And the pollution estimates covered even spottier time points:

Hazardous air pollutant concentrations were assessed by the EPA National Air Toxics Assessments in 1990, 1996, 1999, and 2002, which uses an inventory of outdoor sources of air pollution, including both stationary sources (e.g., waste incinerators, small businesses) and 7 mobile sources (e.g., traffic) to estimate average ambient concentrations of pollutants for each Census tract based on dispersion models (United States Environmental Protection Agency 2011).

In other words, pollution estimates were based on an inventory made in each of four years over the 15-year period of births in the study, and that inventory wasn’t a direct measure but based on identified sources of air pollution, which were then used to estimate “ambient concentrations” by census tract based on a “dispersion model.” This is not a tight association, folks. That’s not the fault of the authors or even of the study design, but it’s also a strong reason to avoid getting too excited about the results.

Yet a lingering question is, Why is anyone asking this question in the first place? The scientific method relies on observations that lead to a hypothesis to test. Scientists are not supposed to, a la Baroness Greenfield, point to one thing and point to another and say, “maybe related!” just because, well, why not? In this case, we don’t even have a correlation between, say, increasing air pollution levels and increasing autism rates. And we have a far more compelling explanation for the latter: diagnostic shift and increased recognition and diagnostic capture.

Autism Speaks on TRICARE

From Autism Speaks:

Military families will face new restrictions and cutbacks obtaining applied behavior analysis (ABA) therapy for their children with autism under new policies made public this week by TRICARE, the Department of Defense health benefits program.

"These policies drastically change how ABA is covered under TRICARE and will impact all beneficiaries and service providers," said Karen Driscoll, Autism Speaks' associate director for federal government affairs and military relations. "Autism Speaks is very concerned about the imposition of age and duration limits, threatened cutoffs for treatment, and the administrative hurdles to access care.

"Military families deserve better," she said. “Our clinical science and advocacy teams are working on a report and plan of action to address. Please stay tuned for policy updates.”

See TRICARE's released policies here:

• ECHO (Extended Care Health Option) demonstration program for active duty personnel
• Basic policies for all beneficiaries
• Pilot program. Ordered by Congress in late 2012, this program was intended to expand ABA coverage under a 12-month pilot program for dependents of non-active duty service personnel

NC Mandate Stalls in State Senate

In Raleigh, NC, WRAL-TV reports:

Advocates for people with autism want access to critical treatments, but legislation that would allow it is hung up in the General Assembly.

Most insurance providers cover speech, occupational and physical therapy, but North Carolina is one of 17 states where insurance doesn't cover applied behavior analysis, also known as ABA therapy.

The state House voted overwhelmingly last month to approve legislation that would require insurers to cover ABA therapy, but it has languished in a Senate committee since then.

Scott Taylor said he and his wife paid $1,500 out of pocket for ABA therapy for their 11-year-old son, Daniel. He credits the strides his son has made to the therapy, which involves a team of therapists reinforcing positive behaviors and trying to eliminate negative ones.

"It makes a big difference," Taylor said. "It is time intensive, one on one, and so it's not cheap."

A year ago, he said, they had to halt the therapy because they could no longer afford it.

"These children cannot wait on the treatment that they need and that their doctors are prescribing," said Lorri Unumb, vice president for government affairs for advocacy group Autism Speaks. "To have an insurance policy that purports to cover autism but doesn't cover the single most important treatment for autism is not meaningful."

Who Owns Diagnostic Tools?

A release from the Simons Foundation Autism Research Initiative:

Most of the world’s children live in low- and middle-income countries. Yet few epidemiological studies of autism prevalence have been conducted in these countries, and little is known about how the symptoms of autism vary from culture to culture.

The limited data available suggest that outside North America and Europe, many cases of autism go unrecognized. A major barrier to diagnosis is the cost of assessments.

“There are glaring disparities globally, and even within the U.S., in terms of where the research on autism is being done, who is included in studies of autism and the diagnostic and therapeutic services available,” says Maureen Durkin, professor of population health sciences and pediatrics at the University of Wisconsin School of Medicine and Public Health.
...
Western Psychological Services, a publishing company based in Los Angeles, owns many of the common autism screening and diagnostic instruments. These include the Social Responsiveness Scale (SRS), a widely used screening questionnaire that Constantino developed, as well as the Autism Diagnostic Observation Schedule (ADOS) and the Autism Diagnostic Interview-Revised (ADI-R), often referred to as the gold-standard tests for diagnosis of the disorder.

Each time one of these tests is administered, the publisher charges a fee, and passes a portion of the royalties on to the test’s developers.

“I don’t think there’s any other condition in medicine in which you have to pay a royalty to a publishing company in order to make the diagnosis,” says David Skuse, professor of behavioral and brain sciences at University College London. Skuse has helped develop two freely available tools, the Social and Communication Disorders Checklist (SCDC) and the developmental, dimensional and diagnostic interview (3di).

In many countries, paying royalties of even a few dollars represents a substantial hardship. Durkin and others say these costs not only limit access to diagnosis for individuals, but also forestall epidemiological studies, which require surveying thousands of individuals.

Charter School Study

Disability Scoop reports:

As charter schools continue to proliferate across the country, a new study finds that they are offering benefits for students with disabilities. 

In a report out this week, the Center for Research on Education Outcomes at Stanford University compared the performance of students at charters with that of students attending traditional public schools in 25 states, the District of Columbia and in New York City. The analysis is an update to a similar report issued in 2009. 

Overall, the study finds that charters are improving, particularly when it comes to often-underserved groups like poor and minority students and those with disabilities. 

To assess students in special education, researchers compared those attending charters to students at traditional public schools by matching children who started out testing at the same level in order to mitigate the influence of their disability. Then, they looked at standardized test results from the same students years later to determine which schools they fared better in. 

While gains in reading were similar for the two groups, the report found that special education students at charters saw greater advances in math, equivalent to 14 extra days of learning.

Black Church Initiative

From Autism Speaks:

Autism Speaks and the National Black Church Initiative launched a campaign to reduce the average age of autism diagnosis and increase access to quality early intervention in African American communities. In its pilot phase, the collaboration will involve 150 Atlanta-area churches in the Autism Speaks Early Access to Care initiative.

A press conference was held Friday at the Wheat Street Baptist to mark the official launch of the program.

Outreach through faith-based organizations is an important part of ensuring that underserved communities understand the importance of early detection, says Amy Daniels, Ph.D., Autism Speaks assistant director of public health research. The congregations’ outreach will increase community awareness of autism’s early signs as well as freely available resources and services.

California Cost-Cutting

Last Thursday, California Healthline reported:

The Lanterman Developmental Disabilities Services Act, passed in 1969, requires regional centers to pay for medically necessary treatments, including ABA therapy. Last year, in order to shift the funding burden on regional centers, the Legislature passed SB 946 -- by Sen. Darrell Steinberg (D-Sacramento) -- which required private insurers to pay for the service, saving money for the state.

...

The budget plan passed by the Legislature last week prohibits regional centers from paying the copayments or deductibles for ABA therapy, except in cases of demonstrable need. Ultimately, the provision means that people with private insurance will have to pay the deductible and copay.

...
State health officials said this is simply an instance of cost-cutting by the Legislature and governor.

All inquiries to state officials for this story were referred to the Department of Developmental Services, which responded with a short written statement. According to the DDS statement, if clients have trouble paying their copays, regional centers are allowed to help, depending on the clients' demonstrated financial need.

The DDS statement said, in part:

"The current budget trailer bill establishes uniform guidelines and authorizes regional centers to pay health insurance co-payments for services on behalf of lower income families or others who demonstrate hardship. Subsequent to enactment of the budget trailer bill, DDS will provide guidance to the regional centers regarding implementation of the authority to pay co-payments for low-income families or others who demonstrate hardship."

In the vernacular, this is called "means-testing."

That kind of means-testing has never been part of the Lanterman Act, according to Rick Rollens, a legislative adviser to ARCA, the Association of Regional Center Agencies.

"This is an historic shift in the Lanterman Act," Rollens said. "It's a major shift. It's the first time when a major service provision is now being means-tested. Historically, this has not been an issue."

...
The question of payment for ABA therapy in the regional centers is just one of several recent changes in autism coverage in California.

• The proposal to include ABA therapy as a benefit under the federally funded optional Medi-Cal expansion starting in 2014 was dropped.
• In their May budget proposal, state lawmakers allocated $50 million (or $100 million, if the federal matching money is considered) for one fiscal year of ABA therapy for Medi-Cal patients, which would have begun in July 2013. That provision was struck from the budget trailer bill in June.
• In 2009, the state eliminated funding for the Early Start program that affected about 17,000 developmentally delayed and at-risk children, including many kids who had early signs of autism, according to Jacobson.
• In September 2012, the state passed SB 946, requiring private insurers to pay for ABA treatment. The bill also provided for ABA therapy for children in the Healthy Families program. An estimated 10,000 of the 860,000 children in Healthy Families may have qualified for ABA therapy. But shortly after SB 946 passed, the state announced it was eliminating the Healthy Families program and moving those children to Medi-Cal managed care plans.

State health officials at the time assured lawmakers that there would be no gaps in continuity of care and that benefits would follow the children, but that has turned out not to be the case for an estimated 500 Healthy Families children who started to receive ABA therapy. Those children have been referred to the regional centers, and an estimated three-fourths of them are expected to fail to qualify for ABA therapy at the centers.