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Saturday, June 30, 2018

Survey on Research Priorities

In The Politics of Autism, I discuss the incentive structure facing academic researchers:
This diversity of research agendas is partially a result of uncertainty. Amid the darkness, it might make sense to shine searchlights in all directions. Some of it may also stem from the availability of autism research money at a time of tight science budgets. To put it bluntly, publication-hungry scientists may have an incentive to rebrand marginally-relevant work as autism-related. Describing her study of how experts on sex differences have landed on the “biomedical platform” of autism, science historian Sarah Richardson says they “have begun to link their very basic research -- even if it’s on nematodes [roundworms] -- to frame it as a contribution to autism.”
Thomas W. Frazier, Geraldine Dawson and colleagues have an brief report at the Journal of Autism and Development Disorders titled "A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders." The abstract:
Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30–59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities.
From the article:
[Findings suggest] that the majority of the autism community, including the majority of people with autism,recognizes the value of basic and translational science for driving toward understanding and generating more powerful interventions for the future. The major exception was animal models, which generally received low priority ratings, even among the researchers who completed the survey. This finding deserves more attention, and funders who regularly support animal work may benefit from greater attention to helping stakeholders understand the potential value of this work. Regardless, the slightly lower overall ratings for basic science suggest a continual need to communicate the importance of early stage basic science projects as drivers of future innovation in applied research.

Friday, June 29, 2018

Delaying the Equity in IDEA Rule

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.
Christina Samuels at Education Week:
The U.S. Department of Education is delaying, by two years, implementation of a rule that would require states to take a closer look at how school districts identify and serve minority students with disabilities.
The "Equity in IDEA" rule, issued by the Obama administration in December 2016, would have gone into effect for the 2018-19 school year. It created a new process for states to follow when they monitor how districts identify minority students for special education, discipline them, or place them in restrictive classroom settings.

The Individuals with Disabilities in Education Act requires this monitoring. Districts found to have "significant disproportionality" in one or more of these areas must set aside 15 percent of their federal special education funding to spend on remedies.

Partners in Policymaking

In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to be advocates for themselves.
Very quickly, parents will learn that there is no one-stop shopping in the autism world.  Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape.  “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”  
Joseph Shapiro at NPR:
Most graduates of the Partners in Policymaking class are the mothers of young children with developmental disabilities. They've been meeting at this hotel one weekend a month for eight months.
They learned how to fight for their child in school, and how to push for health care their child needs. But also, how to read a state budget, how to talk to a state lawmaker and how to testify before the school board or city council.
There are 5.2 million children with developmental disabilities in America. That's according to Sheryl Larson, of the Institute on Community Integration at the University of Minnesota and the senior researcher of an annual report on services for people with developmental disabilities.
Partners in Policymaking is available not just in Minnesota. Currently, 29 states and the District of Columbia run classes. Since it started in 1987, the total number of graduates has grown to more than 27,000.
The graduates are the parents — almost always mothers — of a young child with a developmental disability. Or they're an adult with a disability. It's not unusual that a parent takes the class first, then the kid grows up and takes the class, too.
Those are stories Colleen Wieck wants parents to tell. She started Partners in Policymaking in 1987. At a Senate hearing in Washington on cuts to Medicaid, Wieck watched a parent struggle to tell her story — and got the idea to train parents. "One story can make a difference," says Wieck, who runs the Minnesota Governor's Council on Developmental Disabilities, which sponsors the program. "And we teach people, you owe it to the world to tell your story. You have a story. You tell it. It could change public policy."
Jillian Nelson is the first person parents talk to when they call the Autism Society of Minnesota, often because their child just got a diagnosis of autism. "The underlying message that I always give people is, 'You're going to be okay. ... Your kid's life may be different than you ever imagined, but it's still going to be a good life and everything's going to be okay."
Nelson is an adult with autism.

Thursday, June 28, 2018

Nonmedical Vaccine Exemptions

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

At PLoS Medicine, Jacqueline K. Olive, Peter J. Hotez , Ashish Damania, and Melissa S. Nolan have an article titled "The State of the Antivaccine Movement in the United States: A Focused Examination of Nonmedical Exemptions in States and Counties."  Summary points:

  • A social movement of public health vaccine opposition has been growing in the United States in recent years; subsequently, measles outbreaks have also increased.
  • Since 2009, the number of “philosophical-belief” vaccine nonmedical exemptions (NMEs) has risen in 12 of the 18 states that currently allow this policy: Arkansas (AR), Arizona (AZ), Idaho (ID), Maine (ME), Minnesota (MN), North Dakota (ND), Ohio (OH), Oklahoma (OK), Oregon (OR), Pennsylvania (PA), Texas (TX), and Utah (UT).
  • Several US “hotspot” metropolitan areas stand out for their very large numbers of NMEs. They include Seattle, WA, Spokane, WA, and Portland, OR in the Northwest; Phoenix, AZ, Salt Lake City, UT, Provo, UT, Houston, TX, Fort Worth, TX, Plano, TX, and Austin, TX in the Southwest; Troy, MI, Warren, MI, Detroit, MI, and Kansas City, MO in the Midwest; and Pittsburgh, PA in the Northeast. Additional smaller counties—especially in ID, WI, and UT—also stand out for their high exemption rates.
  • We analyzed the relationship between NME rates and actual vaccine coverage, and found an inverse association between NME rate and measles, mumps, and rubella (MMR) vaccine coverage of kindergarteners in these states (P = 0.03 by Spearman correlation), indicating that states with higher overall NME rates do in fact have lower MMR vaccine coverage (P = 0.007 by beta regression).
  • Our findings indicate that new foci of antivaccine activities are being established in major metropolitan areas, rendering select cities vulnerable for vaccination-preventable diseases. As noted by the recent experience in Anaheim, California, low vaccination rates resulted in a measles outbreak. In contrast, state closure of NMEs has resulted in an increase of MMR coverage.

Wednesday, June 27, 2018

Immigrant Families Opt Out of Services

In The Politics of Autism, I explain how the issue connects with so many other issues.  Immigration is an example.

At Kaiser Health News, Ashley Lopez reports on immigrant families opting out of health services.
Health care groups say they’ve observed other immigrant families making similar choices, and they think it will accelerate if a proposed change to green card eligibility becomes law. Under the proposed change, if family members receive government services — even if those family members are citizens — it would ding the applicants’ chances of approval for permanent residency.
“We are seeing families having to make this impossible choice,” said Maria Hernandez, the founder of Vela, a nonprofit in Austin that helps parents who have children with disabilities.

In the first year of the Trump administration, Central Texas experienced an uptick in immigration raids and deportations. Since then, Hernandez said, a lot of people in the immigrant community have been making critical choices out of fear.
“It’s out of fear of deportation,” she said. “It’s out of fear of having their children being penalized in some way and potentially losing a parent that until this point has been their fierce advocate.”
Hernandez said parents who have children with disabilities have told her that without Medicaid they’ll rely on emergency rooms “as needed.”
“We know that that is not a good plan for kids that for forever have been followed by a neurologist because they have seizures or have been going to occupational therapy for years and are finally making progress,” she said.
Approximately 10 million citizen children in the U.S. have at least one non-citizen parent.

Tuesday, June 26, 2018

Another Correlate: Maternal Diabetes

n The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:
Risk of Autism Increased in Children of Mothers with Diabetes
Research Letter
Maternal Type 1 Diabetes and Risk of Autism in OffspringJAMA
Media advisory: To contact corresponding author Anny H. Xiang, Ph.D., email Elita Fielder at The full study is available on the For The Media website.
Want to embed a link to this report in your story? Link will be live at the embargo time:
Translation available: A translation in simplified Chinese is available below.

Bottom Line: The risk of autism spectrum disorder (ASD) was increased in children of mothers with the three main types of diabetes that complicate pregnancy, findings that add new information on type 1 diabetes and extend what is already known about type 2 and gestational diabetes.
Why The Research Is Interesting: Maternal preexisting type 2 diabetes (T2D) and gestational diabetes mellitus (GDM) diagnosed by 26 weeks have been associated with increased risk of ASD in children in prior research. Less is known about ASD risk associated with maternal preexisting type 1 diabetes (T1D).
Who and When: 419,425 children born at 28 to 44 weeks from 1995-2012.
What (Study Measures and Outcomes): Maternal T1D, T2D and GDM (exposures); diagnosis in children of ASD, which includes autistic disorders, Asperger syndrome and pervasive developmental disorder not otherwise specified (outcomes)
How (Study Design): This was an observational study. Researchers were not intervening for purposes of the study and cannot control all the natural differences that could explain the study findings.
Authors: Anny H. Xiang, Ph.D., Kaiser Permanente Southern California, Pasadena, California, and coauthors
Results: Risk of ASD was higher in children exposed in utero to maternal preexisting T1D, T2D and gestational diabetes diagnosed by 26 weeks compared with no maternal diabetes exposure.
Study Limitations: Risk factors of the father, along with other intrauterine and postnatal exposures, couldn’t be assessed.
Study Conclusions: Results suggest the severity of maternal diabetes and the timing of exposure (early vs late in pregnancy) may be associated with the risk of ASD in children of mothers with diabetes.
To Learn More: The full study is available on the For The Media website.
Editor’s Note: This study is being presented at the American Diabetes Association’s 78th Scientific Sessions. Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.
# # #
For more information, contact JAMA Network Media Relations at 312-464-JAMA (5262) or

Monday, June 25, 2018

A Blood Test?

In The Politics of Autism, I point out that there is currently no commercially-available blood test for autism.  That situation may change someday.

Researchers at that Rensselaer Polytechnic Institute are studying a potential blood test. Tim Newman reports at Medical News Today:
Instead of looking for one single chemical to measure, the researchers — led by Prof. Juergen Hahn — used a big data approach and searched for patterns in metabolites.
In 2017, the researchers had their first success. They analyzed blood from 149 people with an ASD diagnosis, assessing each sample for levels of 24 metabolites. The chemicals were all related to two particular cellular pathways: the methionine cycle, and the transsulfuration pathway.
Having done this, they scientists were able to create a test that could correctly identify more than 96 percent of ASD cases within the group that they had recruited.
Recently, the same team set out to replicate its findings in a new dataset.
They assessed data from 154 children with ASD, taken by researchers from the Arkansas Children's Research Institute in Little Rock. This time, however, they only had access to information on 22 of the 24 metabolic markers they had used in the last trial.
Their results were published this month in the journal Bioengineering and Translational Medicine,and they are encouraging.
When they applied the algorithm, it predicted ASD correctly in 88 percent of cases.
While 88 percent is an impressive result, it is lower than the success rate from the previous studies. Prof. Hahn thinks that this is because the two missing metabolites were shown to be strong indicators in the last study. However, the results are still exciting.
As always with autism, caution is in order.  For decades, ASD people and their families have read of medical breakthroughs, only to meet with disappointment as more studies come in.

Sunday, June 24, 2018

The Autism at Work Employer Roundtable

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

Dinah Eng at Fortune:
Social interaction and communication skills can be a challenge for people with autism spectrum disorder, but companies looking to hire untapped talent for tech-related jobs are discovering that those with autism are unusually detail-oriented, highly analytical, and able to focus intensely on tasks, making them valuable employees. Last October, six companies—Ford Motor, DXC Technology, EY, Microsoft, JPMorgan Chase, and SAP—formed the Autism at Work Employer Roundtable to share best hiring and workplace practices and to help other companies see the return on investment in hiring autistic employees.

Saturday, June 23, 2018

CA Due Process: Students Prevail Less Than 20% of the Time

In The Politics of Autism, I write about litigation under the Individuals with Disabilities Education Act. School districts prevail in most due-process hearings.  Here are some reasons:
School districts have built-in expert witnesses in the form of teachers and staff.  They also have full access to all relevant information about a proposed placement, and often deny parents access to those programs in advance of hearings. When parents’ experts can observe children in class, districts can limit their observations.   More important, parents have to foot the bill for their experts because of a 2006 Supreme Court decision that IDEA does not authorize reimbursement of witness fees. “While authorizing the award of reasonable attorney's fees, the Act contains detailed provisions that are designed to ensure that such awards are indeed reasonable,” Justice Alito wrote for the majority. “The absence of any comparable provisions relating to expert fees strongly suggests that recovery of expert fees is not authorized.” It goes without saying that this decision disadvantages all parents, and especially those with modest incomes. 
California OAH ( Office Of Administrative Hearing ) Special Education statistics 
Percent of cases when student prevailed :

Year 2017 : 18 %
Year 2016 : 12 %
Year 2015 : 13 %
Year 2014 : 15 %
Year 2013 : 11 %
Year 2012 : 14 %
Year 2011 : 14 %
Year 2010 : 10 %
Year 2009 : 15 %

Friday, June 22, 2018

"Brain Balance"

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage.
Chris Benderev at NPR:
Although Brain Balance isn't the only purveyor of alternative approaches for developmental disorders in the U.S., the scale of the enterprise sets it apart. The company's approach is still relatively new and not widely known, meaning many experts in the field of childhood development have not vetted its effectiveness.
Brain Balance says its nonmedical and drug-free program helps children who struggle with ADHD, autism spectrum disorders and learning and processing disorders. The company says it addresses a child's challenges with a combination of physical exercises, nutritional guidance and academic training.
An NPR investigation of Brain Balance reveals a company whose promises have resonated with parents averse to medication. But Brain Balance also appears to have overstated the scientific evidence in its messaging to families, who can easily spend over $10,000 in six months, a common length of enrollment.
 Yet a dozen experts in autism spectrum disorder, ADHD, dyslexia and childhood psychiatry interviewed by NPR all identified flaws in Brain Balance's approach.
They said the company's idea of imbalanced hemispheres was too simplistic and built upon the popular, discredited myth of the logical left brain and the intuitive right brain.
"It doesn't make sense," says Mark Mahone, a pediatric neuropsychologist at the Kennedy Krieger Institute in Baltimore. "In virtually every activity that one does ... both hemispheres of the brain are very, very active. ... It's not as simple as just being a left- or a right-hemisphere problem. Nothing is that simple."
 As for the three-pronged Brain Balance regimen, experts NPR spoke with said there is no solid evidence suggesting gluten, dairy or sugar consumption affects ADHD, autism or dyslexia. And although physical exercise may have modest impacts on inattention and tutoring can help in school, these interventions can be found elsewhere for much less money. No expert suggested either as a front-line remedy for ADHD or autism.

Thursday, June 21, 2018

The Autism Services Market

Autism services has already been an attractive industry for investors, particularly those looking to make a positive social impact. For such investors, the industry provides a very favorable opportunity for financial gains with the added benefit of empowering a growing segment of the population in need of support.

In the past five years, the market has become increasingly consolidated. As private equity eyes the increase in demand along with a more favorable climate for funding and reimbursement, we can expect to see even more consolidation in the future. As investors build national platforms by acquiring providers, these new national platforms are competing for dominance, and making it more difficult for privately owned companies to compete.

A benefit of this new landscape is that competition can raise the bar of service for any market. However, in healthcare especially, consolidation often stymies competition. By buying up a significant share of the market, larger players are able to effectively increase their bargaining power with insurers and suppliers. This gives them an outsized advantage over their competitors. That kind of market dominance prevents real competition and thus fails to improve quality. This is also why research shows that consolidation in healthcare typically leads to higher prices.

Wednesday, June 20, 2018

Waiting in Kansas

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities

Celia Llopis-Jensen reports at The Kansas News Service:
[B]ehavior analysts in Kansas can’t keep up with demand. A big reason, they say, is the state’s privatized Medicaid program, KanCare. Reimbursements are too slow — and too low.
One well-established mental health center recently decided to add ABA therapy to its services, but for now, at least, won’t be accepting Medicaid for that program.
“The state of Kansas’ hourly reimbursement rate doesn’t even cover the time and costs,” said a spokeswoman for the Family Service and Guidance Center in Topeka. “The KanCare rate pays about 50 percent.”

Even the process of getting credentials from KanCare’s three contractors can take months for each therapist. In the meantime, applicants for those jobs sometimes disappear.
“We have about 75 employees in our agency at any one time,” said Katrina Ostmeyer, associate executive director at Integrated Behavioral Technologies. “Ideally, if we’re fully staffed, we should have about 120.”
IBT, which serves large parts of Kansas, currently serves about 60 children. It has about 150 on its waitlist for behavior analysis. Most are enrolled in KanCare, which insures children based on family income and level of need.
It can take a long time for slots to open up because therapy for a single child can take multiple years.

Tuesday, June 19, 2018

ADA and Disability Facts

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

Download FFF: Anniversary of Americans With Disabilities Act: July 26, 2018 [PDF - <1 .0="" a="" mb="">

On July 26, 1990, President George H.W. Bush signed into law the Americans with Disabilities Act, which prohibits discrimination against people with disabilities in employment, transportation, public accommodations, commercial facilities, telecommunications, and state and local government services.
This Facts for Features provides a demographic snapshot of the U.S. population with a disability and examines various services available to them. The statistics come from various Census Bureau censuses and surveys, covering different periods of time...
40.7 million or 12.8%
Total civilian noninstitutionalized population with a disability in the United States.
2016 American Community Survey
The percentage of the civilian noninstitutionalized population in West Virginia in 2016 with a disability — among the highest rates in the nation. Utah, at 9.9 percent, had the lowest rate.
Source: 2016 American Community Survey

7.5 million
Total civilian noninstitutionalized population ages 18 to 64 employed with a disability.
2016 American Community Survey
Median earnings in the past 12 months (in 2016 inflation adjusted dollars) of the civilian noninstitutionalized population age 16 and over with earnings and a disability.
2016 American Community Survey
More on Disability

More Stats

See a detailed profile on the population with a disability from the 2016 American Community Survey. Statistics include:###

Monday, June 18, 2018

"Fake News," Autism, and Europe

In The Politics of Autism, I discuss the need for more study of the issue in other countries.

Mickey Keenan and Karola Dillenburger have an article at Societies titled "How ‘Fake News’ Affects Autism Policy."  The abstract:
 Since autism was first recognised, prevalence has increased rapidly. The growing economic as well as social cost to families and society can only be mitigated by effective interventions and supports. It is, therefore, not surprising that there is much heated debate and most governments have developed public policies to address the management of autism. This paper describes how well-known ‘propaganda’ techniques, that have become prevalent in the helping professions have been used to influence autism policies by spreading ‘fake news’ about the scientific discipline of Applied Behaviour Analysis (ABA). Over the past 40–50 years, meaningful evidence has accrued showing that interventions based on ABA can help people with autism reach their potential. In view of this, nearly all of North America has laws to mandate that ABA-based interventions are available through their health care systems. In contrast, across Europe there are no such laws. In fact, the National Institute for Health and Care Excellence (NICE), the body guiding health and social policy in the UK, concluded that it could not find any evidence to support ABA, and therefore could not recommend it. This paper addresses the reasons for these diametrically opposed perspectives.

Friday, June 15, 2018

Higher Education: Student Perceptions

At The Journal of Autism and Developmental Disorders, Grace L. Francis Jodi Duke, Frederick J. Brigham, and Kelsie Demetro have an article titled: "Student Perceptions of College-Readiness, College Services and Supports, and Family Involvement in College: An Exploratory Study." The abstract:
Although increasing numbers of students with disabilities are attending college, they graduate at lower rates compared to students without disabilities. In order to understand how to effectively prepare students with disabilities and provide meaningful support to college students with disabilities, we investigated the experiences of students registered with the disability service office at a public university located in the eastern region of the U.S. to learn about (a) the degree to which they felt prepared to enter college, (b) the disability-related services they received in college, (c) their perspectives of services received, (d) suggestions for improving services, and (e) their perspectives family involvement in college. We report mixed-methods findings from participants and provide implications for policy and practice.
From the article:
Students registered with the DSO at a public university in the eastern region of the U.S. were surveyed about their preparation for college, their experiences and perspectives of services received, and perceptions of family involvement in college. Participants’ sense of preparedness for college ranged from feeling very prepared (25%) to very unprepared (10%). They cited specific transition skills such as timemanagement, note taking, and writing as having positive impact on their academic preparedness for college. However, participants noted that they would have benefited from more explicit instruction in executive functioning, as well as study and literacy skills prior to college. Participants also reported that they would have benefited from specific instruction on the logistics of college life prior to high school graduation, including how to select and register for courses, communicate appropriately with professors, budget money, and navigate the college environment. These needs support previous findings by Cai and Richdale (2016), suggesting that Individualized Education Program (IEP) teams should support high school students in identifying their personal strengths, needs, as well as available resources to access in college.
Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(31), 31–41.CrossRefPubMedGoogle Scholar

Thursday, June 14, 2018

ABLE Age Adjustment Act

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

On May 22, over 25 organizations came together to strategize how to pass the ABLE Age Adjustment Act in the 115th Congress. The bill (H.R. 1874 /S.817) extends the upper age limit for eligibility for ABLE accounts from 26 to 46 years old. This would allow for a much larger pool of people to increase their assets while protecting eligibility for federal income supports and health care. Recently, the National Association of State Treasurers (NAST) released data showing that in order for ABLE to continue, the number of funded ABLE accounts needs to increase from 17,000 to 390,000 by the year 2021. We understand how important ABLE is to many people around the country, and how urgent and crucial it would be if the age limit was extended. The Autism Society will work with this coalition to help pass this bill in this Congress and urges advocates to encourage their Members of Congress to support the bill.

Wednesday, June 13, 2018


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

The ranks of students receiving services for autism continue to grow.

Children 3 to 21 years old served under Individuals with Disabilities Education Act (IDEA), Part B,

2009-10 2010-11 2011-12 2012-13 2013-14 2014-15 2015-16
Number Served (Thousands)
All disabilities 6,481 6,436 6,401 6,429 6,464 6,555 6,677
Autism 378 417 455 498 538 576 617
Percentage distribution of children served
All disabilities 100 100 100 100 100 100 100
Autism 5.8 6.5 7.1 7.8 8.3 8.8 9.2
Percentage distribution of children served
All disabilities 13.1 13 12.9 12.9 12.9 13 13.2
Autism 0.8 0.8 0.9 1 1.1 1.1 1.2

Tuesday, June 12, 2018


In The Politics of Autism, I discuss challenges facing autistic adults and children.  One is stereotyping of autistic people.

At Autism, Caroline Treweek, Chantelle Wood, Jilly Martin and Megan Freeth have an article titled  Autistic People’s Perspectives on Stereotypes: An Interpretative Phenomenological Analysis." The abstract:
Autism stereotypes can often portray autistic people in a negative way. However, few studies have looked at how autistic people think they are perceived by others, and none have specifically asked autistic people what they think the autistic stereotypes are. Semi-structured interviews with 12 autistic adults (aged between 20 and 63 years) were conducted. Using interpretative phenomenological analysis, three main themes emerged from the data. These were as follows: (1) the primary stereotype is that autistic people are ‘weird’; (2) autistic stereotypes have negative effects and consequences; and (3) autistic people are heterogeneous. This study makes an important and novel contribution to understanding the experience of being autistic by exploring how autistic people feel they are perceived by others and identifying some of the ways in which negative stereotypes are believed to have negative consequences for autistic people.

Sunday, June 10, 2018

The Good Doctor and Representations of Autism

In The Politics of Autism, I discuss depictions of ASD in popular culture.  

 Annie Howard writes about at The Hollywood Reporter about David Shore, showrunner of The Good Doctor:
The idea of representation was a central focus of this year's Drama Showrunner Roundtable for the 2018 Emmys season, with creators of The Chi, Power, The Looming Tower and The Handmaid's Tale centering their discussions on how they tell stories of race, ethnicity, religion and gender. David Shore, creator of The Good Doctor — a hospital drama in which the central character has autism —explained his perspective on writing for Freddie Highmore's autistic character.

Shore said having a main character with autism is "not something we see very much." He posed to the Roundtable, "How do I make him fully dimentionalized while being true to people with this condition or on this spectrum? While at the same time, he's representing that condition."
"It's important that I don't turn him into the magic person with autism," Shore told The Hollywood Reporter. "It's important that I be true to his weaknesses and his strengths. It continues to be a challenge."

Saturday, June 9, 2018

Marijuana Veto in Colorado

In The Politics of Autism, I write:
The conventional wisdom is that any kind of treatment is likely to be less effective as the child gets older, so parents of autistic children usually believe that they are working against the clock. They will not be satisfied with the ambiguities surrounding ABA, nor will they want to wait for some future research finding that might slightly increase its effectiveness. They want results now. Because there are no scientifically-validated drugs for the core symptoms of autism, they look outside the boundaries of mainstream medicine and FDA approval. Studies have found that anywhere from 28 to 54 percent of autistic children receive “complementary and alternative medicine” (CAM), and these numbers probably understate CAM usage
These approaches sometimes include marijuana.

At High Times, Adam Drury reports on Colorado Governor John Hickenlooper (D) vetoing legislation that would have allowed the use of medical marijuana for autism.
Of the 30 states (and D.C.) that have legalized medical cannabis, only 5 consider autism spectrum disorder a qualifying condition. Colorado was poised to become the sixth. But bi-partisan support for the measure was not enough to convince Gov. Hickenlooper to sign the bill.
HB 1263 passed the Colorado Senate with a 32-3 majority. The House voted 54-7 in favor of the bill. But that, and MAMMA’s vocal presence in the capitol Tuesday didn’t sway Hickenlooper.

He says other autism advocates and support groups failed to turn out for (or against) the bill. “Their neutrality speaks volumes,” Hickenlooper said in his office.
The governor also said he hadn’t received any support for the autism measure from certified pediatricians. “I’m sure they’re out there, but I haven’t found a pediatrician yet who thinks it’s a good idea to sign this bill,” Hickenlooper said.
From Hickenlooper's office:
House Bill 18-1263
“While we are very sympathetic with families advocating medical marijuana (MMJ) as a safer and more effective treatment for their children, we cannot ignore such overwhelming concerns from the medical community,” said Governor Hickenlooper in the veto letter. He went on to say, “In vetoing this bill, we do so on sole concern that medical efficacy on MMJ to treat ASD has yet to be fully studied by medical professionals and scientific experts entrusted to this role at the Colorado Department of Public Health and Environment (CDPHE).”
Additionally, an executive order will be issued directing CDPHE, in coordination with the Board of Health, to evaluate the safety and efficacy of medical marijuana for the treatment of autism spectrum disorders in children.
View the entire executive order here.

Gov. John Hickenlooper today signed a letter of support for the “Strengthening the Tenth Amendment Through Entrusting States Act” proposed by Senators Cory Gardner and Elizabeth Warren. This legislation would allow states to adequately regulate their marijuana industries without intervention from the federal government.

"The federal government needs to provide states adequate space to self govern,” said Governor John Hickenlooper. “The issue can no longer be avoided. Ultimately, collaboration with the states will prove critical as the federal government begins to engage on cannabis issues."

You can view the entire letter here.