Autism Portrayals

In The Politics of Autism, I discuss depictions of ASD in popular culture.   A couple of years ago, Sesame Workshop introduced an autistic character online.  Next month, Julia will be on the television program.

Sammy Caiola writes at The Sacramento Bee:

Just as “Sesame Street” announced Julia’s debut, the makers of the new “Power Rangers” movie, released last Friday, announced that Billy, the blue ranger, is on the autism spectrum. They have not released further details about what traits the character possesses, although one Vox review notes that Billy has trouble reading people’s emotions and doesn’t get his fellow Rangers’ jokes.

John Matthias, of Roseville, said he looks forward to taking his 15-year-old autistic son Wesley to see the film. In particular, he’s curious to see if Wesley, who has trouble forming full sentences but loves going to the movies, will connect with the autistic character.

...
Matthias hopes the film will at least help stop the bullying that many autistic teenagers experience. About 63 percent of students on the autism spectrum experience bullying at some point, according to a 2014 study from the Interactive Autism Network.

...

When most people think of autism in popular culture, they still remember the 1988 film “Rain Man,” said Jack Gallagher, a Sacramento actor and playwright whose 21-year-old son, Liam, has autism. The iconic Tom Cruise and Dustin Hoffman film, which won the Academy Award for best picture, helped raise awareness about autism, he said, but it was also misleading.

“If I were portraying someone on the spectrum, I would portray them as a normal person with some quirky social issues, and not as someone who can count every toothpick on the floor or tell you every president’s middle name,” Gallagher said, referring to a scene from the film. “For a long time there were a lot of stereotypical qualities that were given to folks on the spectrum, and now people understand that’s not true. I hope these characterizations are more accurate than they used to be.”

Read more here: http://www.sacbee.com/news/local/health-and-medicine/article141346728.html#storylink=cpy

The National Longitudinal Transition Study

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

A report for the US Department of Education by Mathematica Policy Research:

The National Longitudinal Transition Study (NLTS) 2012 provides updated information on youth with disabilities in light of these changes, to inform efforts to address their needs. ...This second volume of findings from the NLTS 2012 focuses on youth with an IEP only and the similarities or dissimilarities across 12 disability groups defined by IDEA 2004. The assessment of diversity among the disability groups in the decade following IDEA 2004 suggests several key points: 

• Youth with intellectual disability and emotional disturbance are the most socioeconomically disadvantaged groups and the most likely to attend lower-performing schools. According to parents, 72 percent of youth with intellectual disability live in low-income households, which is 14 percentage points higher than youth with an IEP on average. Smaller proportions of youth with intellectual disability (71 percent) and emotional disturbance (73 percent) have an employed parent, compared with all youth with an IEP (80 percent). In addition, one-third of students in these two groups attend a lower-performing school, compared with 27 percent of all youth with an IEP. In contrast, youth with autism and speech or language impairments are less socioeconomically disadvantaged than youth with an IEP overall (for example, 37 and 49 percent live in low-income households versus 58 percent of all youth with an IEP) and less likely to attend a lower-performing school (22 and 19 percent versus 27 percent). 
• Difficulties with health, communication, and functioning independently are most prevalent among youth with autism, intellectual disability, multiple disabilities, and orthopedic impairments. According to parents, youth in these four groups are most likely to have difficulty performing various activities of daily living without help, such as getting to places outside the home (43 to 60 percent can do so, versus 85 percent for all youth with an IEP). In addition, parents indicate that 37 to 53 percent have a chronic health condition, compared with 28 percent of youth with an IEP overall. At least half of youth in the first three groups have trouble communicating with and understanding others, as reported by parents. Youth with specific learning disabilities and speech or language impairments are less likely to have these difficulties.
• The groups that most commonly face health and functional challenges are also less engaged with friends and in school activities, but youth with emotional disturbance are most likely to get into trouble. Youth with autism, deaf-blindness, intellectual disability, multiple disabilities, and orthopedic impairments are 10 to 36 percentage points less likely than youth with an IEP overall (52 percent) to report getting together with friends weekly. In addition, those with intellectual disability and multiple disabilities are about 10 percentage points less likely to report participating in school sports and clubs, compared with all youth with an IEP (64 percent). Youth with emotional disturbance are, on average, suspended (65 percent), expelled (19 percent), and arrested (17 percent) at more than twice the rates of youth with an IEP, according to parents, and are the most likely group to report being teased (48 percent). In contrast, youth with speech or language impairments are less likely to face engagement challenges. 
• Youth with autism, intellectual disability, and multiple disabilities are most likely to receive academic modifications but least likely to receive some other forms of academic support. Parents report that about two-thirds of youth in these groups take modified tests and more than half receive modified assignments. Yet those youth are 16 to 25 percentage points less likely than youth with an IEP on average (72 percent) to report receiving school-provided supplemental academic instruction outside of regular school hours. They are also 7 to 14 percentage points less likely than all youth with an IEP (73 percent) to indicate that they received guidance on courses to take. Moreover, parents of youth with autism and multiple disabilities, along with youth with emotional disturbance, are least likely to report providing their children with weekly homework help (54 percent for all three groups, compared with 62 percent across all youth with an IEP). 
• The same three groups—youth with autism, intellectual disability, and multiple disabilities—are least likely to take steps to prepare for college and employment. For example, 16 to 29 percent of youth ages 16 and older with autism, intellectual disability, and multiple disabilities report having taken a college entrance test, compared with 42 percent of youth with an IEP on average. Youth in these groups are also about half as likely as youth with an IEP overall to have had a paid job while in high school (22 to 23 percent versus 40 percent). In addition, their parents are less likely than parents of other youth with an IEP to expect them to obtain postsecondary education (32 to 53 percent versus 61 percent) and live independently as adults (35 to 49 percent versus 78 percent).

Autism and Parental Time

 The Politics of Autism includes a discussion of parent experiences.  Back in 2004, Jane Gross wrote in The New York Times: "With rare exceptions, no disability claims more parental time and energy than autism because teaching an autistic child even simple tasks is labor intensive, and managing challenging behavior requires vigilance." New studies confirm that parenting ASD children is stressful. This finding comes as no surprise to these parents -- trust me on that -- but as Alison Singer reminds us, it is important to have systematic published research on all aspects of the issue -- even when it merely documents what people know already. Stress levels are an important element in the politics of autism, too. Stressed-out parents may lack the time and energy to engage in legislative and regulatory advocacy outside their individual cases.

Sigan L. Hartley, Leann Smith DaWalt and Haley M. Schultz have an article at the Journal of Autism and Developmental Disorders titled: "Daily Couple Experiences and Parent Affect in Families of Children with Versus Without Autism."  The abstract:

We examined daily couple experiences in 174 couples who had a child with autism spectrum disorder (ASD) relative to 179 couples who had a child without disabilities and their same-day association with parent affect. Parents completed a 14-day daily diary in which they reported time with partner, partner support, partner closeness, and positive and negative couple interactions and level of positive and negative affect. One-way multivariate analyses of covariance and dyadic multilevel models were conducted. Parents of children with ASD reported less time with partner, lower partner closeness, and fewer positive couple interactions than the comparison group. Daily couple experiences were more strongly associated with parent affect in the ASD than somparison group. Findings have implications for programs and supports.

From the article:

Our findings have important implications for programs and supports for parents of children with ASD. Efforts to foster adaptive daily couple experiences may lead to marked improvements in the psychological well-being of parents of children with ASD. Such efforts should focus on: (1) debunking myths (see Hartley et al. 2010) that parents of children with ASD are fated to experience dismal couple relationships by disseminating evidence that vulnerabilities are limited in scope and degree, and many couples report positive couple relationships. (2) Acknowledging the difficulty of juggling multiple demands (e.g., child with ASD, siblings, employment, couple relationship, etc.) and of having limited time with one’s partner. (3) Encouraging parents to carve out time to share feelings and thoughts and connecting with their partner, as opposed to only working through daily life demands. For example, couples could reserve 5 min in the evening for sharing stories from their day. (4) Supporting parents in creating opportunities for positive couple interactions such as doing a fun activity together or taking a moment to text/email a joke or give their partner a complement over their lunch hour. Achieving these goals may require reducing care demands and emotional stressors by increasing the availability of respite care, family supports (e.g., paid providers to help with childcare and/or household tasks), and/or financial assistance to reduce time and emotional burdens experienced by parents. These goals do not need to be achieved through increasing couple alone time. Instead, they could be achieved by fostering positive and fun family-wide activities (i.e., involving not only partners, but also the child with ASD and other family members), and promoted through child-directed interventions (e.g., child’s social and language therapy provided in context of the family playing a game together)

Proposal for a Voluntary Registry in Ohio

In The Politics of Autism, I discuss interactions between police and autistic people. 

Jackie Borchardt reports at Cleveland.com:

A pair of Ohio lawmakers are proposing a voluntary registry for individuals with autism, speech impairments or other disabilities hampering communication, as a way to better inform law enforcement officials.

The information would be available only to officers recalling information from a driver's license or license plate, and officers wouldn't know details about the disability besides that fact it could influence communication.

"We're trying to close the communication gap between people who voluntarily go through this initiative with a communication disability and law enforcement officers," said Rep. Scott Wiggam, a Wooster Republican co-sponsoring the bill.

House Bill 115 was prompted by recent Ohio incidents where drivers with autism were arrested for driving under the influence of alcohol. The drivers failed field sobriety tests but blood and urine tests came back negative.

Olivia Fecteau reported at WCMH-TV:

Medicaid and the Trumpcare Near-Miss

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

Kate Zernike, Abby Goodnough, and Pam Belluck report at The New York Times that Medicaid survived the Trumpcare fiasco.

Medicaid now provides medical care to four out of 10 American children. It covers the costs of nearly half of all births in the United States. It pays for the care for two-thirds of people in nursing homes. And it provides for 10 million children and adults with physical or mental disabilities. For states, it accounts for 60 percent of federal funding — meaning that cuts hurt not only poor and middle-class families caring for their children with autism or dying parents, but also bond ratings.
...
Representative [Chris] Smith of New Jersey said he was voting no because of concerns about the impact on people with disabilities, who make up just 15 percent of all Medicaid recipients but account for 42 percent of spending, making them particularly vulnerable to cuts.

For millions of disabled people, Medicaid covers services provided at home or through local programs — aides who help them walk, eat and bathe, for example, and physical and speech therapy — that allow them to stay out of institutions, where care is often more expensive. But those services are optional for states, while the cost of institutional care is not. The law would have given states an incentive to place them in institutions.

The Limits of the Endrew F. Decision

In The Politics of Autism, I write about IEPs and FAPE.

At AEI, Nat Malkus cautions that the Endrew F. decision does not resolve all special education issues.

Even after this decision — arguably the biggest Supreme Court special education ruling in decades — the definition of an “appropriate” IEP is only a little clearer for districts and parents. In stipulating that equality of opportunity was too high a bar and that trivial benefits were too low, the court left open a vast middle ground to negotiate IEPs based on the “unique circumstances of the child.”

In fact, the Endrew F. case will soon contend with this middle ground. The Supreme Court’s decision sends the case back to lower courts to determine whether the district’s IEP meets the “meaningful benefit” standard. While the court handed parents a victory, it also reiterated that lower courts should defer to districts’ expertise in determining what is appropriate, leaving the burden of proof squarely on parents. The floor for appropriate in FAPE has been raised, but it is difficult to know whether that will make a difference in this case and others like it.

What is more certain is that the decision will raise fiscal pressures on public school districts. Special education costs have risen substantially in recent decades, but those increases have primarily been due to increasing numbers of students, not increasing per-pupil costs. The Endrew F. ruling will raise those costs, both by increasing districts’ willingness to provide services to clear a higher standard and, potentially, by increasing the number of families districts must reimburse for private school tuition.

Insurance Push in Alabama

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

Now that Iowa has passed an autism insurance mandate, Alabama is one of only four states without one. Trisha Powell Crain reports at AL.com: 

Autism advocates are trying a new way to raising awareness about the need for insurance reform. Five billboards calling for "Insurance for Autism Now" are now up: three in Birmingham, one in Albertville and one in Montgomery.

The Autism Society of Alabama paid for the billboards to show their support for HB284, a bill calling for mandated health insurance coverage for behavioral therapy for eligible children with autism.

Opponents say insurance mandates are bad for business owners because it drives up the cost of insurance for their employees.
...
This is the first time the Autism Society of Alabama has used billboards this way, according to executive director Melanie Jones. "It's a grassroots advocacy effort," she said, that started with parents and advocates who wanted to let others in the community understand what not having insurance means for their families. 

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Iowa Passes Insurance Mandate

The Politics of Autism includes an extensive discussion of insurance legislation in the states.

William Petroski reports at The Des Moines Register:

The Iowa Senate voted 48-0 Thursday to require many employer-provided health insurance policies to provide coverage for treatment of autism spectrum disorder for young people 

House File 215 was sent to Gov. Terry Branstad for his consideration. Both Republican and Democratic lawmakers praised the bill's final passage, saying it represents years of work by advocates for people with autism. 

Sen. Bill Anderson, R-Pierson, the bill's floor manager, said the legislation will apply to employers of more than 50 full-time workers. It will require coverage of applied behavioral analysis for persons under age 19 diagnosed with autism spectrum disorder. The bill provides maximum annual benefits, depending upon a person's age. Coverage can also be subject to deductibles, co-payments or co-insurance provisions.

How Autism Is Reshaping Special Education

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

A release at Education Views:

How Autism Is Reshaping Special Education: The Unbundling of IDEA by Mark K. Claypool and John M. McLaughlin will be released on March 28, 2017. Published by Rowman and Littlefield, How Autism is Reshaping Special Education will be released in trade paper (ISBN: 978-1-4758-3497-0 • $25.00 ) hardcover (ISBN: 978-1-4758-3496-3 • $50.00) and eBook editions (ISBN: 978-1-4758-3498-7 • $24.99).

In their latest book, How Autism Is Reshaping Special Education, recognized thought-leaders Mark K. Claypool and John M. McLaughlin deliver a timely, thoughtful, and thought-provoking look at one of the fundamental components of public schooling—special education and its foundational law, the Individuals with Disabilities Education Act (IDEA).

An innovative and meticulously researched guide, How Autism Is Reshaping Special Education sheds light on a modern day conundrum: while special education in the United States is based on the concept of access—public schools are open to all children—access is no longer a sufficient foundation. Approaches that lead to academic success are increasingly demanded for those with learning disabilities, while functional, independent-living, and employable skills are requisite, but rare, for those with serious handicapping conditions.

In their groundbreaking new book, the authors explain how four major events have transpired since the last reauthorization of IDEA : the increase in the number of children diagnosed with autism, the rise of applied behavior analysis, the birth of social media, and the reality of unbundling. In addition to examining how these four events will dramatically impact the next iteration of federal law, How Autism Is Reshaping Special Education explores the effect of these events on a special education process burdened by regulation, where advances in the behavioral sciences and neurosciences blur the lines between education and medicine, and where social media fosters aggressive advocacy for specific disabilities.

In crafting the book, Claypool and McLaughlin, authors of the award-winning We’re In This Together: Public-Private Partnerships in Special and At-Risk Education, sought the expertise and input of dozens of educators, parents, leaders, experts, administrators, special education professionals, and others as a means of presenting a sensitive and accurate portrait of autism and special education today. These perspectives, featured prominently throughout the book, underscore the need for change to benefit children with autism spectrum disorders and their families. Moreover, How Autism Is Reshaping Special Education addresses such topics as: current development of the profession of applied behavior analysis; relative position of autism compared to other disabilities inside of special education; how advocacy for special needs communities has become more aggressive; how Autism Speaks became a business disruptor among advocacy groups; the impact of social media on advocacy; how IDEA will be affected by the political phenomenon of unbundling; and more.

A clear, comprehensive and compelling guide, How Autism Is Reshaping Special Education will be available where fine books are sold in March.

Gorsuch: Sorry

In The Politics of Autism, I write about IEPs and FAPE.

At The Hill, Nikita Vladimirov reports on a telling exchange that took place on the day of Endrew F.:

President Trump's Supreme Court nominee, Neil Gorsuch, said Wednesday that he was "sorry" for ruling against an autistic student because he was "bound by circuit precedent." 

Gorsuch remarked on his ruling in favor of a Colorado school district over an autistic student after Sen. Dick Durbin (D-Ill.) asked him about the decision during Wednesday's confirmation hearing.

"If anyone is suggesting that I like a result where an autistic child happens to lose, that’s a heartbreaking accusation to me. Heartbreaking," Gorsuch said.

"But the fact of the matter is I was bound by circuit precedent, and so was the panel of my court," he added, while noting that there are other examples where his 10th U.S. Circuit Court of Appeals ruled for children with disabilities. 

"If I was wrong, senator, I was wrong because I was bound by circuit precedent, and I’m sorry," he said.

Environmental Risks

In The Politics of Autism, I discuss various ideas about what causes the condition.

Here is just a partial list of correlates, risk factors, and possible causes that have been the subject of serious studies:

• Pesticides;
• Air pollution and proximity to freeways;
• Maternal thyroid issues;
• Autoimmune disorders;
• Induced labor;
• Preterm birth;
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy. 

At STAT, Alycia Halladay writes:

A mountain of research has been conducted and published on a possible link between vaccines and autism, with hundreds of advocacy and scientific organizations refuting it. They also point out the public health risk of avoiding vaccinations. Yet the fear this unsubstantiated link has generated has led to the re-emergence of vaccine-preventable diseases such as measles and pertussis. Another consequence of the ongoing media attention paid to the issue is a misunderstanding of the real environmental risk factors associated with autism.

... 

Here are a few examples of environmental factors that that have been linked to autism:

• Exposure to the anti-epileptic drug valproic acid during pregnancy
• Older age of the mother or father
• High levels of air pollution during pregnancy. This association has been subjected to a systematic review and withstood scientific rigor. Genes control this association.
• Extreme illness or infection during pregnancy, including severe reactions to bacterial and viral infections (some of which can be prevented through vaccination)
• Obesity during pregnancy, premature birth, and complications during birth, likely as the result of interactions with genes

Exposure to these factors elevates a child’s risk of developing autism anywhere between two and four times. An exhaustive review of these factors was just published in the Annual Review of Public Health.

Endrew F. Wins!

In The Politics of Autism, I write about IEPs and FAPE.

Fisher Phillips writes at Lexology:

Today, in a unanimous decision crafted by Chief Justice John Roberts, the Supreme Court decided that the Individuals with Disabilities Education Act (IDEA) requires public schools to provide a heightened level of educational benefits for children with disabilities. This new and heightened standard will impact the crafting of individualized education programs (IEPs) for those students. 

Although a lower appeals court believed that school districts would satisfy the IDEA if they offered the student an IEP that provides a benefit that is “merely more than de minimis,” the Supreme Court rejected this standard in favor of a “markedly more demanding” standard holding that IDEA “requires an educational program reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” The decision is likely to require a rethinking of the benefits to disabled students provided by public school districts across the country, and is expected to lead to increased litigation challenging the provision of disability benefits provided by those schools (Endrew F. v. Douglas County School District).

Injury and Death

The Politics of Autism discusses the dangers facing autistic people, including wandering.

A release from Columbia University:

Deaths in individuals with autism increased 700 percent in the past 16 years and were three times as likely as in the general population to be caused by injuries, according to a new study by Columbia University’s Mailman School of Public Health. The findings are published online in the American Journal of Public Health. The average age at death for individuals with autism was 36 years younger than for the general population, 36 years of age compared with 72. Of the deaths in individuals with autism, 28 percent were attributed to injury, most often by suffocation, followed by asphyxiation, and drowning. Together, these three causes accounted for nearly 80 percent of the total injury mortality in children with autism. More than 40 percent occurred in homes or residential institutions. “While earlier research reported a higher mortality rate overall for individuals with autism, until now injury mortality in the autism spectrum disorder population had been understudied,” said Guohua Li, MD, DrPH, Mailman School professor of Epidemiology, and senior author. “Despite the marked increase in the annual number of deaths occurring, autism-related deaths still may be severely underreported, particularly deaths from intentional injury such as assaults, homicide, and suicide.”

Screening over 32 million death certificates in the U.S. National Vital Statistics System, the researchers identified 1,367 individuals (1,043 males and 324 females) with a diagnosis of autism who died between 1999 and 2014.   The annual number of documented deaths for individuals with a diagnosis of autism has risen nearly 7 times from 1999 to 2014. “Our study was limited to death certificate data. While the numbers are startling, autism as a contributing cause of death is likely undercounted because of the accuracy of information on death certificates filed by coroners varies,” noted Joseph Guan, the lead author and a master of public health degree student in Epidemiology at the Mailman School of Public Health.    The estimated prevalence of autism spectrum disorder is about four times as common in males as in females and higher among non-Hispanic white children and in children of highly educated parents. From 2000 to 2012, the rate has more than doubled. “Our analysis reveals that children with autism are 160 times as likely to die from drowning as the general pediatric population.  Given the exceptionally heightened risk of drowning for children with autism, swimming classes should be the intervention of top priority,” said Dr. Li, who is the founding director of the Center for Injury Epidemiology and Prevention at Columbia. “Once a child is diagnosed with autism, usually between 2 years and 3 years of age, pediatricians and parents should immediately help enroll the child in swimming classes, before any behavioral therapy, speech therapy, or occupational therapy. Swimming ability for kids with autism is an imperative survival skill.” 

Wandering is a common autistic behavior, and Dr. Li makes the point that many children with autism have an affinity to bodies of water. “With impaired communication and social skills, autistic kids tend to seek relief of their heightened anxiety from the serenity of water bodies. Unfortunately, this behavior too often leads to tragedies.” 

The study was supported by the National Center for Injury Prevention and Control, Centers for Disease Control and Prevention (grant 1 R49 CE002096).

Autistic Aging

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.

Elizabeth A. Wise, Marcia D. Smith, and Peter V. Rabins have an article at The Journal of Autism and Developmental Disorders titled "Aging and Autism Spectrum Disorder: A Naturalistic, Longitudinal Study of the Comorbidities and Behavioral and Neuropsychiatric Symptoms in Adults with ASD."

 The abstract:

Little is known about Autism Spectrum Disorder (ASD) in persons over age 50. In a retrospective, naturalistic review of 74 individuals aged 30 and older meeting DSM-5 criteria for ASD, the point prevalence of behavioral and neuropsychiatric symptoms (BNPS) declined significantly for 12 of 13 BNPS over a mean of 25 years while many other features of ASD remained stable. GI disorders (68.9%) and seizure disorders (23%) were common, and 25.7% of the sample had a BMI >30. Females were more likely to engage in screaming (p < 0.05) and oppositional behavior (p < 0.05). Current age did not have a significant effect on BNPS prevalence.

From the article:

Older adults in this cohort required a high level of support as ascertained by their treatment plans. We were unable to determine staffing levels when people entered the program, so we cannot comment on change in need for supervision over time, but it appears that the majority of people in this cohort required intensive staff support throughout, many for over 30 years. This observation is notable for several reasons. For one, it reiterates the relative stability of ASD over adulthood. Second, programs geared toward older adults with ASD—similar to those in this cohort—will need to provide levels of individual support described in this sample. The high prevalence of dental, dermatological, musculoskeletal problems, and seizures encountered in this cohort also points to the need for careful attention to those conditions, in addition to disorders that are common in the general population as people age. Moreover, it is worth noting that almost one-third of the sample require sedating medication to tolerate medical or dental care.

Autism on Sesame Street

In The Politics of Autism, I discuss depictions of ASD in popular culture.   A couple of years ago, Sesame Workshop introduced an autistic character online.  Next month, Julia will be on the television program.

Leslie Stahl reports at CBS:

There are not many shows on television that deserve to be called true American institutions – but one of them is surely “Sesame Street.” It’s been on the air now for almost 50 years. When Sesame Street began in 1969, it was considered an experiment. The question: Could television be used to educate young children? Well, research proved the answer to be yes, and the nonprofit children’s television workshop -- now called Sesame Workshop -- that created the show, has been refining and expanding that mission ever since, everything from ABC’s and 123’s, to race, and even death. In a few weeks, Sesame Street -- which now airs on HBO as well as its longtime home on PBS -- will take on its latest challenge: introducing a new kid on the street. A Muppet named Julia, who has autism.
...
Christine Ferraro [writer]: It’s tricky because autism is not one thing, because it is different for every single person who has autism. There is an expression that goes, “If you’ve met one person with autism, you’ve met one person with autism.”

“Sesame Street” has always based its characters and content on extensive research. They regularly bring in educators and child psychologists. In the case of Julia, they also worked with autism organizations to decide which characteristics she should have and how best to normalize autism for all children.
...
And of course every Muppet needs a puppeteer. But not every puppeteer has the connection Stacey Gordon does to the role. Gordon is the mother of a son with autism. She traveled all the way from Phoenix to audition for the part.

Lesley Stahl: The idea that there will be a child with autism on Sesame Street—

Stacey Gordon: Yeah.

Lesley Stahl: Tell me what that means to you.

Stacey Gordon: It means that our kids are important enough to be seen in society. Having Julia on the show and seeing all of the characters treat her with compassion—

Lesley Stahl: And like her.

Stacey Gordon: And like her.

Lesley Stahl: That’s big.

Stacey Gordon: Yeah, it’s huge.

Alabama Lobbyist v. Autistic Kids

The Politics of Autism includes an extensive discussion of insurance.

At The Alabama Media Group, John Archibald writes about an Alabama hearing on an insurance mandate:

Billy Canary, head of the Business Council of Alabama - who somehow serves as both the mouthpiece and rump roast of the Big Mules - quoted scripture about children as he railed against the bill to help children.

"Children are a gift from God," the verse goes.

It's like Darth Vader himself giving a lecture about the dangers of the Dark Side.

But the lesson - the primer on process and priorities - came when debate tumbled into a hall and Patterson and Canary exchanged words with uncharacteristic honesty.

AL.com's Trisha Powell Crain was there to take it down. Thank goodness.

Canary began with what can only be described as the lobbyist equivalent of "do you know who I am."

Why, he asked, did Patterson dare file the bill without coming to him first?

Holy cow. Why not just make Patterson and every other legislator kiss his ring? We know Canary's a big dog. He -a lobbyist with a paid point of view -- used to have weekly meetings with House Speaker Mike Hubbard to set the Statehouse agenda. That was before Hubbard was convicted of corruption - including charges of soliciting things of value from people connected to the BCA.

But Patterson - bless his heart -- called Canary's BS. Lobbyists typically come to the people who are elected to office, and not the other way around, he said.

That's how it's supposed to work, anyway.

Patterson has no personal reason to help autistic children. It's not a family matter and he's not a bleeding heart. He's sure not a guy out to get the insurance companies. He was asked to sponsor the bill and he never thought he'd do it.

Insurance and Medicaid, March 2017

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

Brianne Pfannenstiel  reports at the Des Moines Register:

The Iowa House of Representatives voted unanimously Wednesday to require that insurance companies cover a treatment for autism that parents say can help provide a better quality of life for their kids.

"Our oldest daughter is autistic," said Rep. Andy McKean, R-Anamosa. "And I can simply say that my wife and I would have very much wished that this legislation was in effect back many years ago."

House File 215 would require insurance companies to cover applied behavior analysis for children with autism if they're issuing health plans to companies with more than 50 employees, or for plans to public non-state employees. Coverage would become available for families with dependents younger than 19 who have been diagnosed with autism spectrum disorder.

Madeleine Hackett  reports at WTVY, Dothan, Alabama:

50,000 families in the Yellowhammer state are affected by autism, yet Alabama is one of only five states that does not require insurance companies to pay for certain treatments.

House Bill 284 is hoping to change that.

It would require private insurers to include coverage of "Applied Behavioral Analysis" (ABA) treatment.

As it stands, families must pay out of pocket for these costly therapy sessions.

It would also require treatments for things like speech and occupational therapy to be covered by insurance companies.

You can ask your state lawmaker to support autism insurance reform.

Chairman Kerry Rich
His email is kerryrich@mclo.org
You can call him at (334)242-7538

Robert Kittle reports at WSPA:

 Parents of autistic children in South Carolina are asking state lawmakers to increase the state’s Medicaid budget that provides autism therapy. Parents, children, and advocates rallied Wednesday at the Statehouse and held signs as state senators came into the Statehouse Wednesday.
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The problem is that South Carolina pays providers the lowest rate in the nation for that therapy. South Carolina reimburses providers $14.48 an hour for that therapy, compared to $50 in North Carolina. Because of that, South Carolina has a lot fewer professionals who provide that therapy, known as Applied Behavioral Analysis, or ABA. Since there aren’t as many providers, South Carolina has a waiting list of about 1,500 children who need the therapy and can’t get it.
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Rep. James Smith, D-Columbia, says they’re asking for lawmakers to add at least $10 million to the state budget to increase the reimbursements, which would mean more providers offering that therapy. While it’s difficult to get lawmakers to go along with a budget increase when there are so many things competing for that money, Rep. Smith says it costs the state up to $2.4 million for lifelong care for each child who doesn’t receive the therapy. “The reality is the cost of not spending that money is costing our state far more,” he says.

The House adopted its version of the state budget early Wednesday morning and it did not contain the additional money, so advocates are hoping the Senate will add it.

Sen. Tom Corbin, R-Travelers Rest, says he’ll fight for every dollar he can. His 19-year-old twin sons were born prematurely and were diagnosed with autism. “My wife decided to leave her career teaching school and stay home with our children and see that they got the early intervention and therapies that they need. Does it work? I’m proud to say yes, it works. Both of my sons, through tremendous effort on their part and through early intervention and all the therapists and all the help we received, graduated high school summa cum laude,” he says.

Special Education and the Budget

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

Christina Samuels reports at Education Week:

The "skinny" budget blueprint released by the Trump administration Thursday would maintain current spending levels for special education—about $13 billion, most of which is money sent directly to states.

The budget blueprint is just the beginning of a long process. While this document shows the administration's priorities, it is Congress that ultimately passes spending legislation. And lawmakers have their own ideas about what programs should be cut, and which should be kept.

But, if these funding amounts were to stay in place, the federal contribution for special education and related services would be about 16 percent of the excess costs of educating a student with a disability, compared to a general education student.
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The Trump administration does propose reducing impact aid, which gives money to school districts that have a large federal presence. Federal property is exempt from local taxes, so impact aid is meant to help make up for tax revenue that cannot be collected by state and local taxing authorities. In fiscal 2016, about $48 million of the $1.3 billion allotted for impact aid was designated specifically for educating students with disabilities.

Cutting Research

In The Politics of Autism, I discuss the National Institutes of Health, which is by far the largest funder of autism research. ( In Fiscal 2017, the amount is $217 million.)

Trump's budget would cut NIH by about 18 percent.

Stephanie Simon reports at STAT:

Funding for the NIH has been a bipartisan priority for years; one of Trump’s key advisers, former Representative Newt Gingrich, has long championed that cause. It was just two years ago, in fact, that Gingrich called for doubling the NIH budget, calling health spending both a moral and a financial imperative. “It’s irresponsible and shortsighted, not prudent, to let financing for basic research dwindle,” Gingrich wrote then.

Breitbart Attacks Trumpcare over Disabilities

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities. 

Very oddly, the flagship site of the alt-right is criticizing Trumpcare (which it calls "Ryancare") for shorting families of people with disabilities. Sean Moran writes at Breitbart:

The Republican leadership’s plan to roll back Medicaid puts families with disabilities in a dire situation.

Many American families rely upon Medicaid to pay for the expensive care that comes with disabilities. Families with special needs rely upon Medicaid for specialized care for daily living and to pay caretakers so that parents can work.

However, the Ryan plan might jeopardize those who rely upon Medicaid for disabilities. Speaker Ryan’s plan places a per-person cap for all Americans, including people with disabilities, children, and the elderly.

It also quotes the Denver Post article that this blog noted yesterday. 

 

Impact of Trumpcare

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities. 

At The Denver Post, my former student Alyssa Roberts writes about her disabled brother and discusses the impact of Medicaid cuts:

Overlooked in the Republican bill to repeal the Affordable Care Act (ACA) is a drastic change to traditional Medicaid funding that threatens services for more than 10 million people with disabilities. For decades, Medicaid has been their lifeline — providing everything from specialized therapies to support for daily living. Medicaid keeps people with disabilities out of institutions. It pays for caretakers so their parents can go to work. And it’s more efficient than private insurance.

Aside from phasing out coverage for 400,000 low-income Coloradans who gained health insurance through Medicaid expansion, the bill moving quickly through Congress would place a per-person cap on pre-ACA Medicaid funding for people with disabilities, children and the elderly. Since the program’s creation in 1965, states and the federal government have split the bill. Capping Uncle Sam’s share leaves two options: either shift costs to already stretched state budgets or cut services drastically.

With Colorado lawmakers locked in perpetual budget gridlock, a funding increase is unlikely. So here come the cuts. Hearing aids, at-home care, physical therapy, and some people denied coverage altogether. The American Hospital Association warns the plan could mean further pay cuts for providers who already struggle to break even. The Arc, an advocacy group for those with disabilities, says the GOP plan will leave Medicaid decimated, threatening beneficiaries’ “basic human right to a life in the community.”

Say what you will about the Affordable Care Act, but massive changes to a program that was not even part of Obamacare to begin with deserve bipartisan debate that ensures all are heard — not to be buried in a political football and rushed to a vote.

Dan Gorenstein writes at Marketplace:

The Republican plan – or the American Health Care Act – radically reconfigures Medicaid by cutting federal funding by $880 billion over 10 years, according to recently released figures from the Congressional Budget Office. That could mean a loss of services for millions of people, including one in 10 million Americans with disabilities on the program.

The proposed cuts have many disability advocates concerned. That includes Fern and Brad Pivar, whose 32-year-old son Scott has Fragile X syndrome, a genetic disorder that means he’s non-verbal, has autistic tendencies and the cognitive capacity of a kindergartner.

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Right now, disabled Americans like Scott make up about 15 percent of Medicaid enrollment, and 42 percent of spending.

That spending is already a big target for states, which have been cutting costs by creating wait lists. More than half a million people with disabilities were waitlisted for services in 2015, according to the Kaiser Family Foundation.

Fern said she’s terrified for Scott’s future.

“I am scared as to what his life will be, that he’s going to be alone and put away somewhere and no one is going to take care of him,” she said as her voice dropped to a whisper. “You are trusting someone else to take care of the most important thing in the world. And it’s not going to be there.”

Gottlieb to FDA

In The Politics of Autism, I discuss the role of the Food and Drug Administration in fighting autism quackery.

Trump has nominated Dr. Scott Gottlieb to head FDA.  He has close ties to the drug industry.  He is also pro-vaccine.  In December, Orac wrote:

As bad as I find the potential pick of Dr. Gottlieb to run the FDA (albeit not as bad as Jim O’Neill would be), there is one good thing about it, and that’s the schadenfreude I’m feeling with respect to antivaccine activists and quacks. Why schadenfreude? Easy. From early on, antivaccine loons recognized Donald Trump as one of their own because he is. He has a long, sordid history of antivaccine nonsense about “monster shots” causing autism and buying into the “too many too soon” trope. It was even revealed just before the election by an antivaccine blogger who couldn’t keep her mouth shut, metaphorically speaking, that Donald Trump had met with antivaccine “hero” Andrew Wakefield in August in Florida. As a result, antivaccine activists had high hopes for a Trump presidency, with that same blogger who couldn’t keep her mouth shut before the election even going so far as to post an open letter containing a wish list of what antivaccinationists would like to see from Trump after he becomes President. Although, the FDA wasn’t mentioned, I can’t help but wonder what antivaccine contingent would think of Scott Gottlieb as the FDA Commissioner.

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Donald Trump is considering someone who thinks that thimerosal should have been used in order to be able to manufacture multi-dose vials. There’s a lot more, though. I found lots of pro-vaccine articles either by Gottlieb or in which he is quoted. As much as I dislike his ties to pharma and his anti-regulatory tendencies, including with respect to vaccines, and don’t want him to be FDA Commissioner, he definitely comes down on the right side of science with respect to antivaccine pseudoscience and vaccine safety.
I saved the best for last, though. Let’s just say that I want to twist the knife a bit, and this article’s title alone should be enough to do that, Case closed on vaccine-autism debate: Doctor. The doctor? Dr. Gottlieb:

Trumpcare and Medicaid

In The Politics of Autism, I discuss Medicaid services for people with intellectual and developmental disabilities. 

At The Philadelphia Inquirer, Don Sapatkin writes of Trumpcare;

New Jersey and many of the 30 other states that also expanded Medicaid would face similar challenges. Pennsylvania, though, could be particularly hard-hit.
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Pennsylvania’s Medicaid program historically has been more generous than most to people with severe intellectual and physical disabilities. For decades, the state has found options that were “really creative to keep people with disabilities out of institutions,” said David Mandell, a psychiatry professor and disabilities-policy expert at the University of Pennsylvania. He cowrote a commentary last week in the New England Journal of Medicine, Care for Autism and Other Disabilities — A Future in Jeopardy.

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New Jersey has one of the most comprehensive Medicaid programs in the country but balanced by one of the stingiest reimbursement rates for doctors. With the state's budget woes, provider pay "will probably be frozen at that rate," said Raymond Castro, senior policy analyst at New Jersey Policy Perspective.

Lawmakers in Harrisburg are also in a bind. "Seventy-two percent of our Medicaid spending is going to seniors and adults with long-term disability," said Kristen Dama, an attorney who focuses on Medicaid policy at Community Legal Services of Philadelphia.

At Pacific Standard, David M. Perry writes of a recent panel at The Center for American Progress:

Ari Ne’eman, who participated in the CAP panel, has an even grimmer view. “Medicaid will be annihilated,” says Ne’eman, who served as a disability appointee in the Obama administration and currently runs MySupport.com. “There is no scenario,” he says, “with cuts of this level and scope, in which people with disabilities won’t be substantially hurt.”

Amber Smock, director of advocacy at Access Living, posted on a closed Facebook group (quoted with her permission) that the Hill was “busier than I have ever seen it.” She notes that lots of different groups are lobbying against the bill, including Paralyzed Veterans of America (who have been tweeting out their meetings). Even the AARP, which is not always known for taking disability rights position, mentioned long-term supports and services as an issue.

Ne’eman agrees. “The entirety of the disability community, people with developmental disabilities, physical disabilities, psychological disabilities, veterans, seniors, are are all coming to the table to condemn and push back against these utterly wrongheaded proposals,” he says.
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“The disability community is a hand with many fingers,” Ne’eman says, “but what’s happening right now is that they are all closing together into a fist.”