Update on Causes and Correlates

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 peer-reviewed 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. 

Lisa Rapaport reports at Scientific American:

Mothers who are obese during pregnancy have almost twice the odds of having a child with autism as women who weigh less, a U.S. study suggests.

When women are both obese and have diabetes, the autism risk for their child is at least quadrupled, researchers reported online January 29 in Pediatrics.

"In terms of absolute risk, compared to common pediatric diseases such as obesity and asthma, the rate of autism spectrum disorder (ASD) in the U.S. population is relatively low, however, the personal, family and societal impact of ASD is enormous," said senior study author Dr. Xiaobin Wang, a public health and pediatrics researcher at Johns Hopkins University in Baltimore.

A release from Drexel University:

 By comparing birth records over a period of nine years, Drexel researchers found that the children of mothers who took a certain asthma medication during pregnancy faced an elevated risk of being diagnosed with autism spectrum disorder.

"Since the teratogenic [an agent which could cause development issues in a fetus] potential of most drugs with respect to neurodevelopmental outcomes is generally understudied, I would hope my research would encourage more researchers to explore prescription drug use as a potential autism spectrum disorder risk factor," said Nicole Gidaya, PhD, a doctoral alum of Drexel's Dornsife School of Public Health and the lead author of the study.

Looking at birth records from Denmark dating between 1997 and 2007, it was determined that children whose mothers took ß-2-andrenergic receptor (B2AR) agonist drugs during pregnancy were 30 percent more likely to be eventually diagnosed with autism spectrum disorder.

The study, "In Utero Exposure to ß-2-Andregenic Receptor Agonist Drugs and Risk for Autism Spectrum Disorders," was published in the February issue of Pediatrics.

A release from MIT:

In 2010, a large study in Denmark found that women who suffered an infection severe enough to require hospitalization while pregnant were much more likely to have a child with autism (even though the overall risk of delivering a child with autism remained low).

Now research from MIT, the University of Massachusetts Medical School, the University of Colorado, and New York University Langone Medical Center reveals a possible mechanism for how this occurs. In a study of mice, the researchers found that immune cells activated in the mother during severe inflammation produce an immune effector molecule called IL-17 that appears to interfere with brain development.

The researchers also found that blocking this signal could restore normal behavior and brain structure.

“In the mice, we could treat the mother with antibodies that block IL-17 after inflammation had set in, and that could ameliorate some of the behavioral symptoms that were observed in the offspring. However, we don’t know yet how much of that could be translated into humans,” says Gloria Choi, an assistant professor of brain and cognitive sciences, a member of MIT’s McGovern Institute for Brain Research, and the lead author of the study, which appears in the Jan. 28 online edition of Science.

An Argument for Universal Screening

In The Politics of Autism, I discuss screening and diagnosis.

At The Journal of Autism and Developmental Disorders, a letter disagrees with the United States Preventive Services Task Force (USPSTF) on universal autism screening.  Signers are: Diana L. Robins, Lauren B. Adamson, Marianne Barton, James E. ConnellJr., Thyde Dumont-Mathieu, Paul H. Dworkin, Deborah Fein, Mark A. Greenstein, Ho-Wen Hsu, Connor Kerns, Craig Newschaffer, Jennifer Plumb, Paul Shattuck, Renee Turchi, and Giacomo Vivanti.

An excerpt:

In conclusion, we are in full agreement that ASD screening is effective in detecting toddlers at risk for ASD. In fact, the task force’s evidence report highlights that in primary care screening studies, 50–60 % of ASD cases detected through ASD screening were found before parents or physicians had any concerns (AHRQ2015, page 53); although the screening tools cannot have perfect sensitivity and specificity, children detected through screening are likely to be younger than children detected through other strategies (e.g., see Guevara et al. 2013). We also agree that additional research, including larger, well-controlled trials of children identified through screening is needed to fully evaluate the effects of early detection and treatment of ASD and to boost the support for population-based ASD screening. However, we believe strongly that the evidence that ASD can be effectively detected by primary care screening—in many cases before concerns have been identified—coupled with an imperfect but growing and compelling body of evidence demonstrating positive effects of ASD-specific early intervention, is more than sufficient to recommend this practice. Access to early intervention services will be delayed if early screening efforts are decreased as a result of the task force’s recommendation. Should there be a reduction in primary-care based screening as a result of the task force report, thousands of children with ASD will experience delays in the diagnosis and initiation of early intervention services that may impose lifelong limitations to their quality of life.

Insurance Legislation in Oklahoma

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

Christine VanTimmeren reports at KOKH-TV

Oklahoma lawmakers are fighting to help children on the autism spectrum. Rep. Jason Nelson authored a bipartisan bill to mandate insurance companies cover treatment and diagnosis costs. Oklahoma is only one of seven states that do not require insurance companies to help with autism treatment and medication costs. Many families here in Oklahoma hope we won't be the last state to require it.

A.J. Griffin is sponsoring the legislation in the state senate.

HB 2962 revisits an old issue.

Rep. Nelson said revisiting because our state has been here before. In 2008 a similar bill deemed "Nick's Law" was proposed, named after Nick Rhode. His family also fought hard for their son on the autism spectrum, but the bill was never even heard. The Rhode family ultimately left the state because caring for Nick cost too much. Rep. Nelson thinks the issues the legislature had with the bill then, have now been fixed.

"The bill is different than it was and I think the approach is different than it was then," he said.

In the last eight years, many other states have passed autism insurance laws. They found the requirement impacted insurance premiums by only 31-46 cents per member per month. That amount is far below the estimates lawmakers had in 2008.

Lacey Lett reports at KFOR-TV:

"We're not asking for any special treatment, just equal treatment that other states have already passed," said Tara Hood, an advocate.

Forty-three other states passed similar autism reform legislation.

Hood is hoping Oklahoma will be next on the list.

"If my daughter had a different diagnosis of ADHD, it would be covered. I'm not sure why autism is excluded," Hood said.

More from Autism Speaks 

Autism, Alzheimer's, and Clinton

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.

At The Huffington Post, Craig Snyder writes of the Clinton autism plan:

This language signifies a necessary and significant policy direction change on autism research, away from the genetic and psychiatric approaches that have consumed nearly all federal dollars on autism causation research so far.

It seems to us, however, that Secretary Clinton's previously-announced platform to address Alzheimer's would be equally appropriate for addressing autism, if not more so, given the chronic, virtually lifelong nature of autism, autism's higher annual cost ($268 billion vs $200 billion for Alzheimer's), and autism's increased mortality rate. The Clinton Alzheimer's Plan, found here: https://www.hillaryclinton.com/briefing/factsheets/2015/12/22/an-end-to-alzheimers-disease commits $2 billion dollars each year for research "preventing and effectively treating Alzheimer's by 2025" and "invests the needed resources, organizes a broad national effort, and inspires leaders in the public, nonprofit, and private sectors to develop effective interventions to prevent and effectively treat Alzheimer's and related dementias".

 In The Politics of Autism, I write:

Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.

Sam Wessels Meets Chris Christie

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

Sam Wessels, a young Iowan with autism, has been asking presidential candidates about their positions on autism during the past couple of cycles.

At The RespectAbility report, Lauren Appelbaum writes:

...Sam Wessels, a 15-year-old boy with autism, asked the governor about the low employment rates for adults with autism. Christie answered by discussing how New Jersey is an Employment First state, going into more detail than the statements he made in New Hampshire in December.

“Everything we do in terms of our program is geared toward getting people prepared to work in jobs that are available and jobs that help them reach their full potential,” the governor said at Blue Bunny Ice Cream Parlor and Museum on Jan. 17. “We have to get out of the mindset that folks who are on the Autism spectrum can’t work. They absolutely can work. There are lots of jobs out there that they can do and do very well and feel fulfilled by doing everyday.”

“By making ourselves a Work First state, we have changed the way our Human Services, Health Department and our Department of Education deals with this issue, to put our resources behind trying to make sure that younger people and older folks are prepared as they go through the school-age years and as they age out as that part of the system to be able to be ready for employment and have our Department of Labor work with employers to educate them about what the capabilities and potential is of folks who are somewhere on the Autism spectrum,” Christie added

Marijuana and Autism

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.

Marijuana is one controversial example of CAM.

At the Riverside Press-Enterprise, Tom Sheridan reports on the Cannabis for Autism conference that took place last Saturday in Rancho Cucamonga, California.

The keynote presentation at the conference was delivered via Skype by Dr. Lester Grinspoon, associate professor emeritus of psychiatry at Harvard Medical School.

Grinspoon is the author of several cannabis-related books including “Marihuana Reconsidered,” published in 1971.

Grinspoon conceded that he thought marijuana, or cannabis, was “dangerous” until he started to research it. He, too, had a personal connection to the drug’s apparent therapeutic qualities. In the 1960s, when his son was undergoing chemotherapy treatments, he witnessed first-hand evidence that cannabis helped his son deal with the disabling nausea caused by the chemo.

“My conclusion was it was a remarkably non-toxic medicine,” Grinspoon said.

The conference comes as many in the United States are examining their views on cannabis. Three states have legalized marijuana for recreational use, and nearly half the states plus Washington, D.C., allow medical marijuana.

But the U.S. government continues to list marijuana as a Schedule I drug, a classification reserved for drugs that have no medical use and high potential for abuse. Heroin and LSD are other Schedule I drugs.

Another speaker at the conference, Thalia Michelle, executive director of Mothers Advocating Medical Marijuana for Autism (MAMMA), is the parent of an autistic child.

In her presentation, Michelle made the case that states should list autism as a qualifying condition for medical marijuana.

WSB-TV in Atlanta reports:

The mother of an autistic child went before Georgia lawmakers Monday, admitting she broke the law to get relief for her daughter.

Channel 2’s Lori Geary sat in on the first hearing of Georgia’s new medical marijuana bill that would allow the growing of medical marijuana in Georgia and expand the number of conditions patients need to qualify, including Alzheimer’s disease and autism.

Jennifer Conforti testified that she gets marijuana on the black market and turns it into cannabis oil for her 5-year-old daughter.

...
State Rep. Allen Peake, R-Macon, is considered the godfather of the medical marijuana movement in Georgia.

“It’s time to quit making criminals out of parents and citizens who only want to provide medicine for their sick children and for themselves," Peake told Geary.

At CNHI News Service, John Finnerty reports:

Debate over medical marijuana in Pennsylvania has been a slog, say advocates who are still working to overcome the skepticism of lawmakers who don't want to be seen as soft on drugs.

Pennsylvania is one of a dozen states with no form of legalized medical marijuana. Supporters say that could soon change, as surveys of lawmakers indicate that it could pass.

They just need Republicans in the House to bring it up for a vote.

“That’s my biggest beef,” said Lolly Bentch, who lives near Harrisburg and leads Campaign for Compassion, a group of moms who've been lobbying to legalize medical marijuana in Pennsylvania.

Hunter Clauss and Kristen Thometz report at WTTW in Chicago:

Gov. Bruce Rauner has a week to decide whether to expand the state's medical marijuana pilot program, which some observers worry could be in danger of flaming out. So far the program only covers a limited number of serious illnesses and has 4,000 registered patients.

The state's Medical Cannabis Advisory Board wants the governor to add eight new medical conditions to the program. They include chronic pain caused by trauma, autism and PTSD. But it's not clear whether Rauner will sign off on the move after he punted on adding more conditions to the program last year.

Service Delivery and Military Families

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.

At The Journal of Autism and Developmental Disorders, Jennifer M. Davis, Erinn Finke, and Benjamin Hickerson have an article titled: "Service Delivery Experiences and Intervention Needs of Military Families with Children with ASD."  The abstract:

The purpose of this study was to describe the experiences of military families with children with autism spectrum disorder (ASD) specifically as it relates to relocation. Online survey methodology was used to gather information from military spouses with children with ASD. The finalized dataset included 189 cases. Descriptive statistics and frequency analyses were used to examine participant demographics and service delivery questions. Results indicated the larger sample of military spouses largely confirmed the experiences reported qualitatively in previous studies and contributed information that was previously unknown about variables associated with the access, availability, quality, and frequency of intervention services for military families with children with ASD.

From the article:

Many respondents reported difficulty accessing needed interventions, limited availability and proximity of providers, lack of continuity among service plans, and unsatisfactory
quality of school interventions. Although reducing relocations may not be a feasible option because they are required for the mission of the DoD, establishing and/or modifying some existing supports may address the breadth of barriers reported by these military spouses. For example, a support that may address several issues is telehealth interventions. Telehealth interventions have the potential to increase availability and accessibility of services and clinicians while limiting proximity and continuity concerns.

 Reducing more specific barriers, however, may necessitate putting new supports in place for these military families. Among the 11 service delivery experiences, five experiences were reported to be barriers by at least 60 % of military spouses and three of those were related to access. This indicated accessing interventions for their child with ASD was likely the most challenging service delivery category for military spouses; therefore, targeting access barriers may be an effective starting place for improving service delivery to military families. One support that could be established to help reduce access barriers and facilitate finding interventions may be a military-spouse mentor program. This program would link families with a child with ASD at a base with other families with children with ASD who are relocating to that base. The mentor could assist the mentee in finding providers and navigating the new community and school system. Another support for reducing barriers to finding services may be an up-to-date online resource for military parents to help locate providers in their area who accept Tricare.

Further, military spouses with children with ASD reported dissatisfaction with IEP continuity and quality of school interventions. Establishing a PCS protocol outlining
responsibilities for the military family, as well as for the old school and new school would streamline the transition and may increase parent perceptions of IEP continuity and quality. Compiling these resources into one parent friendly, comprehensive website may help to facilitate military parents’ ability to participate in these programs and utilize these supports to locate services, understand legal mandates, and better advocate for their child and family

Vax Rates in California

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

Joanna Pearlstein reports at Wired:

VACCINATION RATES AMONG California kindergartners rose last year, and fewer students skipped shots because of their parents’ personal beliefs about immunizations, according to state officials. The changes, though slight, suggest that a state law barring parents from refusing to have their kids vaccinated appears to have had some impact even before taking effect later this year.

More than half a million children attend public or private kindergarten in California. Information collected during the fall for the 2015-2016 school year shows 92.9 percent of children received all of the required vaccinations. That’s up from 90.4 percent in 2014 and 90.2 percent in 2013, according to a report by the California Department of Public Health.
...
Because SB277 does not take effect for another five months, its impact on childhood vaccination rates won’t be known until data for the 2016-2017 school year is released next year. Still, the upward trend is promising. Los Angeles county, which has the state’s largest school district and is responsible for educating one-quarter of all California kindergarteners, saw a four-point rise in its vaccination rate, an increase of nearly 9,000 children. The rate among San Francisco kindergartners climbed from 86.4 percent during the last school year to 92.5 percent for the current one.

Lisa Aliferis reports at KQED that the public attention to vaccinations may have had an effect.

But James Watt, chief of the division of communicable diseases with the state’s department of public health, says another big factor is “conditional admissions.” These are children who arrive at school with some vaccines, but are not up to date.

This school year, 4.4 percent — about 24,000 — of the state’s 550,000 kindergartners were admitted conditionally.

The problem, Watt explained to me in an interview, is that the rules around conditional entry are actually quite strict. It’s not simply that a child has some vaccines and will get the rest at a later date. In other words, “conditional entry” is not for children whose parents haven’t gotten them to the doctor’s office or clinic for a shot.

“If those children could get a dose ‘today,’ they’re not supposed to be admitted to school,” Watt says.

To say it in reverse — conditional entry is for children who cannot be vaccinated “today.”

Why couldn’t you be vaccinated “today”? Here’s one example: Children are supposed to receive two doses of the measles, mumps, rubella (MMR) vaccine. But the second dose can only be given starting one month after the first dose. If school starts less than one month after the child has had the first MMR dose, then the child is eligible for “conditional entry” to school, until the month has passed and the second dose can be given.

Department of public health estimates show that more than 90 percent of those 24,000 children with conditional entry do not meet the requirements of the policy and should not have been admitted to school.

Trump, Gates, Vaccines

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

Previous posts have discussed Trump's advocacy of this idea.

Amber Ferguson reports at The Huffington Post:

Philanthropist Melinda Gates blasted Republican presidential front-runner Donald Trump this week for his assertions that childhood vaccinations can lead to autism, calling them “ridiculous” and “misinformed.”

During the annual World Economic Forum in Davos, Switzerland, on Thursday, Gates sat down with HuffPost Rise and discussed why Trump’s statements on vaccines are wrong.

Trump has claimed several times that there's a correlation between vaccines and the developmental disorder autism -- a claim that is unsupported by science, and that has its roots in a discredited 1998 study by a British doctor who was laterstripped of his license. Researchers have investigated the possibility of a link between vaccines and autism and have not found evidence that one exists.

Lucy Tiven writes at ATTN:

Trump's anti-vaxx rhetoric neatly illustrates what many find most troubling about his campaign platform and aggressive posturing.

"As Trump demonstrated, it's a way to position yourself as reasonable while still perpetuating the false belief that getting your jabs is going to destroy your brain," Slate observed following the early September GOP Debate.

"Politically, the moment was a perfect summation of Donald Trump's candidacy," writer Amanda Marcotte concludes, "his ability to pair off-the-charts self-confidence with complete ignorance about whatever subject he's opining about."

Other outspoken anti-vaxxers include former television host Jenny McCarthy, actor Charlie Sheen, and Billy Corgan of The Smashing Pumpkins.

Autism in California Schools

In The Politics of Autism, I discuss  the increase in autism diagnoses and educational determinations.

Phillip Reese writes at The Sacramento Bee:

More than 90,000 California public school students are autistic, a number that has risen more than six-fold since 2001, according to the latest data from the California Department of Education.

The figure represent a jump of about 6,000, or 7 percent, from 2013-14 to 2014-15. More than one of every 75 kindergartners in California public schools is classified as autistic.

The number of autistic students statewide has risen by between 5,000 and 7,000 every year for a decade. In 2001, there were about 14,000 autistic students in the state.
Each year since at least 2001, the number of autistic students has risen by 7 percent or more, state figures show.

Much of the change probably stems from changes in classification practices: many students with a determination of autism would in the past have had a label of intellectual disability.  From a Penn State release about nationwide study in the American Journal of Medical Genetics:

A Parent's Plea

In The Politics of Autism, I write that parents of autistic children often have a difficult time, especially when their children have behavioral problems.

The only sure thing is hardship. “With rare exceptions,” wrote journalist Jane Gross in 2004, “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.”

...
Getting help can be just as tough. “Once you have that diagnosis in hand, the questions start piling up,” writes autism parent Mari-Jane Williams. “What services does he need, and what will insurance cover? What really works, and what is just a hopeful shot in the dark? How can she get the most out of the public school system? Who coordinates all of this? Do you need a small army of specialists or just one really good behavioral or occupational therapist?” 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.”

Pennsylvania autism mom Natasha Walizer writes at The Huffington Post:

I'm an emotional mom. I know I am. And anyone who wants to say something about it can shut up. There is no Tiger Mom happening here. I know "things will get better." I know "this too shall pass." I know I should just let them "be boys." I am letting my sons be boys. Majority of moms will tell you that they want to raise healthy, strong, polite, respectful young men who will be productive citizens and do good in this world. Guess what - I want the same thing. And guess what, I will succeed. But right now, don't blame me for crying after a struggle with my son. I cry because I don't know how to help him. I have no idea what he needs, besides his daddy and I. I'm not crying about what happens. I'm crying about why I can't help him when it happens. I don't know how. I'm mommy. I'm supposed to be able to fix everything. Everything. When you can't, you feel as though you have failed, as if you are incapable.

We are seeking help, but the state has a different idea of when it should all happen then we do - don't get me started - that's another article. Out of college with a psychology degree, a young bouncy coed has the possibility of being a TSS, a therapeutic support staff. With a little bit of a higher degree, a TSS can become a BSC, a behavioral specialist consultant. This is where we're at ... waiting on our assigned TSS, who can sit with my son and help him focus, sit still, work on his letters, remain quieter than he is now. This person can come in my home and help us know how to handle a disruptive dinnertime, arguments between brothers, an impatient older brother.

I want to help my child, but until I know how, there might be some tears ... and a lot of screaming.

Autistic Adults and the Tsunami

In The Politics of Autism, I write:

Two demographic trends will influence autism politics in the coming decades. First, the identified autistic population will get bigger, particularly in the adult range. Service providers refer to this coming change as a “tsunami,” after a large ocean wave that is barely visible when it moves over deep water but packs great power when it hits land. Second, the general population will be getting older just as the autism tsunami arrives, complicating the policy response.

Cindy Godwin writes at USA Today:

As the number of autistic children grows, so does the number of autistic adults. Their needs remain much the same as they age, yet the support they once received fades. Though families like mine are feeling it most acutely, this is an issue for everyone to consider. The tsunami of adults with autism is coming.

Programs for autistic adults vary from state to state and community to community, depending on when they were diagnosed and whether they are “high” or “low” functioning. But there is widespread agreement that there simply are not enough providers and options. The needs of adults with autism “far exceed the available resources, leaving a generation of individuals with autism and their families in programmatic, financial and personal limbo,” researchers Peter Gerhardt and Ilene Lainer wrote in 2010, and that remains the case.

Just this month in Iowa, Hillary Clinton announced her plan to support people with autism across their lifespans, bringing needed attention to this problem. One of our biggest challenges is finding affordable, supportive housing. A quality residential program costs more per year than sending your child to Stanford. Imagine paying $50,000 or more annually for the rest of your son’s or daughter’s life, with no graduation ceremony in sight.

IDEA, ADA, and Rehabilitation Act

In The Politics of Autism,  I discuss special education court cases, including Smith v. Robinson.

Christina Samuels writes at Education Week that the Supreme Court has asked the Solicitor General for a brief on whether it should take a case involving a service dog.

The legal issue in the case of Fry v. Napoleon Community Schools (No. 15-497) is bit more technical than the dispute over whether a goldendoodle named Wonder could accompany and help the girl at school.

The legal question is whether a 1986 federal statute that amended the Individuals with Disabilities Education Act requires families to exhaust procedures under the IDEA when they are suing under the Americans with Disabilities Act of 1990 or the Rehabilitation Act of 1973. Those latter statutes provide for damages, which the IDEA does not.

Stacy and Brent Fry, the parents of now 11-year-old Ehlena, sued under the ADA and the Rehabilitation Act after the Napoleon district in 2009 barred Wonder from helping Ehlena, except for a short trial period when the dog was required to remain in the back of the classroom, court papers say. Ehlena was 5 at the time the lawsuit was filed.

The school district said in court papers that Ehlena's individualized education program called for a human aide to assist her, so the dog wasn't necessary.

...

Congress enacted a law known as Handicapped Children's Protection Act of 1986 in response to a 1984 Supreme Court decision, in Smith v. Robinson, that the IDEA was the exclusive statute for a student with a disability to assert an education-related claim, even if a claim might exist under other federal disability laws or the Constitution.

Congress wanted to make clear that families could press the rights of students with disabilities under other laws, such as the Rehabilitation Act. (The ADA came along later.)

But the 1986 measure does require that if education-related claims brought under other laws are also available under the IDEA, then the family must exhaust state administrative remedies under the IDEA first.

It Will Take a Long Time to Find Medical Treatments

In The Politics of Autism, I write about medical and scientific research.

Karen Weintraub writes at STAT:

Treatment for autism looked tantalizingly close just five years ago, as the first drug studies launched for the disorder Fragile X. Advocates hoped that treatments for the rest of the autism spectrum would soon follow.

Today, that optimism is gone, as drug after promising drug has failed.

Novartis announced last week that two drug trials showed an experimental medication did not improve the conditions of adults and teens with Fragile X, a genetic disorder that can lead to intellectual disability, anxiety, speech delay, seizures, and social challenges. Other trials run by Roche and startup Seaside Therapeutics also failed to show benefits.

“The patient community had been sold on the hope that comes with these clinical trials,” said Robert Ring, the outgoing chief scientific officer of Autism Speaks, an advocacy and research group. “I think we can do a lot better job of spelling out the realistic context in which these things are happening.”

Ring, who formerly headed the autism research unit at drug giant Pfizer, said the results may discourage venture capitalists from pursuing drug development in the field. But he said big drug companies will likely stick with it.

It’ll just take a lot longer, and a lot more work, than advocates and scientists had hoped.

In a Different Key

In addition to The Politics of Autism, there are other new books dealing with autism.

A recent book  us  In a Different Key, by John Donvan and Caren Zucker, whose reporting I cite in my own book.  (They tracked down the first person ever diagnosed with autism)

This morning, they appeared on Good Morning America and offered something that has often been missing from TV treatments of autism:  good sense.



ABC Breaking News | Latest News Videos

Summary of The Politics of Autism

At Health Affairs, Bridget Verrette offers a nice summary of The Politics of Autism

Autism is an ailment whose precise definition is debated in the medical world, and one that is increasingly at the heart of controversy in the health and political arenas. A definitive diagnosis can be difficult to achieve: The long list of symptoms that might lead to a diagnosis crosses the policy realms of education and mental, behavioral, and physical health. Efficient care for people with autism also requires the assistance of parents, physicians, caretakers, teachers, and others.

John J. Pitney Jr., a professor of American politics at Claremont McKenna College, recognizes this confluence of factors in The Politics of Autism. He takes the reader through the history of medical and political reactions to autism, describing why it is so difficult for families and patients to receive sufficient and beneficial care. Without placing blame, Pitney covers the inequality that children with autism might face in the classroom, as federal education laws have been slow to provide policies to accommodate people with this nuanced condition. Coordinated efforts at the state and local level are also needed to treat patients, according to the author. These efforts include Medicaid waivers that are extended to children with an autism diagnosis (instead of only those with intellectual disabilities) and that also provide necessary services for adults. Insurance benefits should be revised to increase covered services for adults and to cover common autism treatments, which can differ greatly from the mental health services that are typically covered. The book also discusses the future: aging with autism, changing demographics, and trends in economics and labor that will affect people with autism and their families in generations to come. Ending with requests for increased research from the academic community and advocacy from people with autism, Pitney declares that those individuals should be allowed to speak for themselves in guiding their future.

Autism and the 2016 Race

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign.  I have also posted about Kasich,  Bush, Rubio, Christie, Paul, and Trump.

James Trout reports at The RespectAbility Report:

During the summer, my first event as a reporter was the Road to Majority Conference in Washington, D.C. After seeing Ohio Gov. John Kasich talk about how as governor he made sure that people on the Autism Spectrum would not be denied access to healthcare, I had an opportunity to talk him. I told him that as a person on the Autism Spectrum, I was grateful for him to mention people on the Autism Spectrum as people who need to be “brought out of the shadows.” He then bent over, hugged me, and told me “God is looking after you.” It was a true and genuine moment.

In New Hampshire and Iowa, I attended numerous town halls where I had the opportunity to ask many candidates questions on employment for people with disabilities, event and website accessibility, crime rate, and other important topics. From Florida Sen. Marco Rubio to former Maryland Gov. Martin O’Malley, and from former Florida Gov.Jeb Bush to Kasich, I helped draw attention to important issues, all while educating both the candidate and the press who were covering the campaign.

It took three attempts to speak to New Jersey Gov. Chris Christie during my New Hampshire travels. The first two events were in small places that were not easily accessible. During the third, a town hall at the Pelham VFW Post, I was not called on to ask a question. However, I had my opportunity during the rope line, andChristie talked about his state’s Employment First policy.

Now, I’m in Iowa covering disability issues leading up to the Iowa caucuses. I’m now being recognized by candidates! Last week,Kasich publicly commended me for my work in being a self-advocate and bringing these issues to the table. I also am working with local disability leaders to press candidates to not only talk about our issues but also to walk the walk by making websites and events more accessible.

The Screening Controversy

In The Politics of Autism, I discuss screening and diagnosis.

Kamala Kelkar reports at The Guardian:

The US Preventive Services Task Force is evaluating a final recommendation to clinicians that there is not enough science to promote universal screening for children under three, prompting alarm from many researchers and clinicians in the field.

Backers of universal screening say doctors have been encouraged to conduct more autism screenings, which are crucial to early intervention, by the AAP’s recommendation that all children get screened. They say this new recommendation could take them a dangerous leap backwards.

“I fear that people will stop screening,” said Dr Susan Levy, who chairs the AAP’s subcommittee on autism. “The earlier you identify the child and refer them for treatment the better the outcome is.”

,,,
Dr Daniel Coury said during a review of the universal screening recommendation Tuesday that some autistic children only show symptoms 10% of the time, which could be too subtle for untrained eyes.

“There seems to be adequate evidence there to continue to screen … Anything that might take a step backward certainly concerns me and most pediatricians in this country,” said Coury, chief of the Section of Developmental and Behavioral Pediatrics for Nationwide Children’s Hospital in Columbus, Ohio.

Dr Amy Wetherby, the director of the Autism Institute at Florida State University, cited a statistic that only 2.5% of toddlers who need it are receiving special education, citing the need for more reliable screening tools.

...
Dr Karen Pierce, co-director of the Autism Center at the University of California, San Diego, pointed to the plasticity of a toddler’s brain between birth and the age of two as a reason why early treatment is crucial. The current average age for diagnosis is around 4, but she argues that it could be as young as two.

New Head of Autism Speaks

The Politics of Autism includes a discussion of major interest groups such as Autism Speaks.

From Autism Speaks:

Autism Speaks, the world’s leading autism science and advocacy organization, today announced that Angela Timashenka Geiger has been named president and CEO of the organization. The appointment came after a unanimous vote by the Autism Speaks Board of Directors and is effective February 2016.

...

Geiger has significant experience in strategic marketing, program development, revenue development, and field support for nonprofits. She will join the organization from the Alzheimer’s Association where she most recently served as chief strategy officer. As a member of the Alzheimer’s Association senior management team, Geiger worked day-to-day across all divisions and with the chapters to coordinate and execute strategy and accelerate organizational growth. She has had accountability for more than $280 million in annual fundraising, programs and services reaching over three million people per year, as well as branding and marketing, corporate initiatives and diversity and inclusion. She has successfully led Association efforts to develop and expand programmatic offerings, marketing and fundraising to increase concern and awareness, and improve the lives of those affected.
...

Prior to joining the Alzheimer’s Association, Geiger spent eight years at the American Cancer Society in a variety of leadership roles. During her tenure, she developed and implemented a business-to-business sales and market strategy to increase mission reach and revenue. She also worked for the American Lung Association of Western Pennsylvania and for higher education institutions.

She has her B.A. and MBA from the University of Pittsburgh and has contributed to a variety of conferences and publications.

There are many differences between autism and Alzheimer's, but both are brain disorders in need of serious research.  Both lead to wandering. And as I write in the book, there is at least some potential for resource conflict:

 In the future, therefore, a lot of autistic adults may still need a lot of help.  And that help could be more expensive, especially for more severely impaired people who require assistance with daily activities.  The huge baby boom generation is now entering old age, so the number of Alzheimer’s patients will soar.  Competition for suitable workers could drive up the costs of care.   And those costs will rise just as overall government budgets are getting tighter.  The aging of baby boom generation will mean fewer workers paying taxes and more seniors drawing benefits, simultaneously squeezing revenues and expenditures at all levels of government.   “People assume the state will be there to help with their child,” financial planner John Nadworny says, “but that’s a really risky bet.”  

Knowledge Gaps

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

At The Journal of Autism and Developmental Disorders, Peter Doehring and Fred R. Volkmar write about the gaps between knowledge and policy:

Given the considerable state and federal expenditures on autism and the potential for strong economic impact of needs for long term care (Knapp et al. 2014), these policy gaps deserve special attention because they are only one link in the chain that yokes better outcomes for the entire population of people with ASD to necessary improvements in services, research, training, and policy (Doehring 2013). Given the considerable expenditure in time and money the government is also making to have researchers submit their research data to a national data base, it seems somewhat paradoxical that actual data that might clarify the mysteries of state to state variations are lacking. Indeed in many ways we are missing an important opportunity to understand what are essentially 50 different (or more) approaches to autism in the various states at all levels (schools and beyond). This lack of information seems particularly unfortunate since so many ASD initiatives fall short of expectations because they are based on the assumption that a change in one of these links will be sufficient: a new intervention will not be accessible if it cannot be implemented through publicly funded programs; a new mandate to provide insurance will not change outcomes without properly trained personnel, and so on. Ensuring that the educational definitions of ASD are updated, or mandating that professionals conduct certain types of assessments, is just a start: it would depend upon properly trained personnel, which may require changes to graduate training programs; it may require changes to ensure that these personnel have the time to conduct these assessments, which may affect the overall number needed and require new funding or entail a reorganization of existing resources. Weak links between research and policy can put individuals with ASD at risk for very negative outcomes that are entirely preventable given what is known about effective intervention (Doehring 2014).

Demonstrating how to close these gaps is itself a research priority. Understanding the most significant contributor(s) to these gaps in educational assessment could help us to understand other gaps in assessment or in intervention. Systematically documenting how programs integrate services, research, training, and policy to create better outcomes would help in the development of strategies at the local, state, or national level that make best use of available resources. This may require the convergence of best practices in research and in public or private sector innovation. Widening the focus from an emphasis on rigorous methods and careful consideration of specific findings to broader policy implications will make the work of researchers even more relevant.

Doehring, P. (2013). Autism services across America: Road Maps for Improving State and National Education, Research, and Training Programs. Baltimore, MD: Paul H. Brookes Publishing.Doehring, P. (2014). Translating research into effective social policy. In F. Volkmar, R. Paul, S. Rogers, & K. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders: Volume 2, assessment, interventions, and policy (Vol. 4). Hoboken, NJ: Wiley.
Knapp, M., Buescher, A., Volkmar, F. R., Paul, R., Rogers, S. J., & Pelphrey, K. A. (2014). Economic aspects of autism handbook of autism and pervasive developmental disorders (4th ed.). New York: Wiley.

Update on Reactions to Clinton's Autism Plan

In The Politics of Autism, I discuss the issue's role in presidential campaigns.  As I explain in the book, Hillary Clinton has a long history with the issue, and has issued an autism policy statement for the 2016 campaign. Previous posts noted some reactions to the plan, and here is an update.

At Spectrum, Jessica Wright has reactions:

• Julia Bascom: As an autistic self-advocate, there’s a lot to like about Clinton’s autism plan. The focus on substantive policy issues is great to see. You can tell the campaign did a deep dive here. The plan focuses primarily on the concrete needs of autistic people and our families, which is a refreshing change of pace from much of the national conversation about autism, which is still focused on ideas about cure and tragedy. Clinton isn’t scared of autism: She recognizes autistic people and our families as constituents with very real needs and priorities, and she’s got a plan to start meeting those needs...

Amy S. F. Lutz at The Jewish Week:

Some parents of severely autistic kids have opposed the plan because it fails to include any mention of autism prevention. And its language certainly reflects the position of autistic self-advocates that autism isn’t a disease that needs to be cured but a different skillset that just needs more societal support. Still, there are components that will doubtlessly help those with more profound impairments, including increased insurance coverage of therapies, support for caregivers and accessibility of communication devices. And Clinton’s call for the “first-ever adult autism prevalence and needs study” reveals an interest in data that I can’t help but hope will drive policy in the future.

Alyson Klein at Education Week:

On Clinton's wish list: enacting the "Keeping All Students Safe Act," which was championed in previous Congresses by Rep. George Miller, D-Calif., and Sen. Tom Harkin, D-Iowa, both now retired. The bill would limit seclusion and restraint as means of controlling students in special education, particularly if there is a risk of injury, and would prevent these practices from being included in students' Individualized Education Programs, or IEPs.

So far, the bill hasn't gotten much traction in the GOP-controlled Congress, but similar measures have gained in popularity in state legislatures.

That doesn't mean everyone is a fan of such policies. Back in 2012, AASA, the School Superintendents' Association, came out against the measure. AASA is still concerned about any legislation that would prohibit local districts from considering the use of seclusion and restraint, after other interventions (like Positive Behavioral Intervention and Supports) have failed.

And Rep. John Kline, R-Minn., the chairman of the House education committee, expressed concerns back in 2012 that the bill could hinder state efforts to deal with the issue. (Kline will soon be out of office, but other lawmakers may take a similar view.) What's more, the newly enacted Every Student Succeeds Act includes language cracking down on discipline practices that remove kids from the classroom, including seclusion and restraint.

Jennifer Martinez Belt at The Arkansas Democrat-Gazette:

So I was delighted by Hillary's plan--but I can't say I was surprised. As a native Arkansan, I saw her advocating for the children of this state from the moment she arrived in Little Rock.

As first lady, Hillary fought for more awareness and funding for autism research. In the Senate, she introduced the bipartisan Expanding the Promise for Individuals with Autism Act. Throughout her career, she's proven to be a champion for families by digging into the finer points of issues like autism to identify and prevent the specific fears that really keep parents up at night.

For the families of the 3.5 million Americans with autism spectrum disorder, these issues are deeply personal to us. Hillary has always understood that.

And my hope is that if more people show her kind of leadership, kids like Thomas will finally be able to grow up to become anything they can imagine.

ABLE Moves Ahead

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

The National Down Syndrome Society keeps a running list of states that have passed or are working on ABLE legislation

New Jersey Governor Chris Christie has signed ABLE legislation. Paul Nichols reports at The Bergen Record:

Legislation sponsored by Assembly Democrats Pamela Lampitt, Majority Leader Louis Greenwald, Valerie Vainieri Huttle, Daniel Benson and Vince Mazzeo to create tax-free savings accounts for individuals with developmental disabilities was signed into law on Monday.

The new law (A-3956) requires the Department of Human Services and the Department of the Treasury to establish the “New Jersey Achieving a Better Life Experience” (ABLE) program in accordance with the federal “Achieving a Better Life Experience Act of 2014,” which President Obama signed into law in December 2014. Under the program, individuals with certain disabilities will be permitted to establish ABLE accounts that may be used to pay certain disability-related expenses. ABLE accounts will be exempt from state income taxation and will not be included as an asset or income when determining the individual’s eligibility for state assistance programs.

A few days earlier, Autism Speaks reported:

Governor Andrew Cuomo has signed ABLE legislation that will allow families the opportunity to set up tax-free 529A savings accounts for disability-related expenses. The New York State Assembly and Senate passed the legislation in June.

The bill follows upon enactment by the federal government of the Stephen Beck, Jr., Achieving a Better Life Experience Act of 2014. Modeled after college savings accounts, ABLE accounts will enable people with autism and their families to save for housing, education, transportation, medical and other expenses if related to their disability. Assets in ABLE accounts will be exempt from a $2,000 cap on conventional savings accounts; exceeding that cap voids eligibility for Medicaid and Supplemental Security Income (SSI) benefits.

“We are grateful for Governor Cuomo’s support for ABLE in New York. New York families will have access to an important new financial tool for their loved ones with disabilities,” said Stuart Spielman, senior policy advisor and counsel at Autism Speaks. “This victory would not have been possible without the dedication of our grassroots network across the state and the leadership of Senator David Carlucci and Assemblymember Aileen Gunther.”

Anne Tergesen report at The Wall Street Journal:

A year ago, Congress created the 529 ABLE account, a savings vehicle for disabled people that offers the same tax-free growth available in 529 college-savings plans. Now, thanks to a tax law passed last month, consumers eligible to open a 529 ABLE account will be free to select a plan sponsored by any state, rather than being restricted to their home state’s plan.

That change will make it possible for people across the country to start one of these accounts as soon as the first state program opens for business—something that is likely to happen in the coming months.

...
For families that can fund a special-needs trust, deciding whether to use that or a 529 ABLE account—or both—is complicated. Because these trusts typically cost from $2,000 to $5,000 to set up, they often make sense only if there is at least $50,000—and potentially far more—available to invest, said [tax attorney Jamie] Canup.

With the trusts, investment gains are taxable. But families can make unlimited contributions without affecting a beneficiary’s eligibility for government benefits.

Perhaps the biggest downside to an ABLE account applies to beneficiaries who receive Medicaid. If beneficiaries die with money in ABLE accounts, a state has a right to seek repayment for Medicaid benefits received after creating the ABLE account. In contrast, when the beneficiary dies, a special-needs trust isn’t required to reimburse the state for Medicaid benefits—unless the beneficiary funded the trust with his or her own earnings or savings.