Autism and Cost

In The Politics of Autism, I discuss costs and benefits of autism services.

Katie Parsons at The Orlando Sentinel:

“Many insurance plans do not cover evaluations. We are talking a cost of $700 to $2,000, just for the initial evaluation,” said Silvia Hierro, who has a son on the autism spectrum and is the founder of SOAK, a Florida nonprofit that focuses on raising awareness about autism and providing informational resources for families.

The fight for funding assistance continues from there, Hierro says, and the fact that each autistic child has custom needs for treatment makes it even harder. She says she’s found that self-funded insurance policies usually exclude everything related to autism treatment, thus starting a back-and-forth between families and insurers that can last the whole of childhood and into adulthood.

“The best example is a child who was born with a hearing problem, but later diagnosed with autism. The hearing problem has nothing to do with the autism but the insurance company will not approve speech therapy,” Hierro said.

...

For low-income families, Medicaid can cover the majority of costs, but Hierro says members of her group bemoan the lack of providers who accept Medicaid patients because the payout is so low. The wait list to obtain a Florida Medicaid Waiver is over a decade long, Hierro said. Families also have access to some services through the public school system for diagnosis and some therapies there.

...
Susan Belcher is the founder of Spring Forward for Autism, a Brevard County based organization that recently started awarding grants of up to $2,000 for therapies or equipment to families of children with ASD. In the first half of 2018, the organization approved grant applications of more than $30,000.

“We know that something as basic as an analysis for diagnosis is a cost too large for many families, and that keeps kids from receiving the treatments and therapies they really need,” Belcher said. “We don’t think that should happen to families, or kids with ASD.”

Study of Bullying

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

At the Journal of Child and Family Studies, Lydie A. Lebrun-Harris and colleagues have a study titled "Bullying Victimization and Perpetration among U.S. Children and Adolescents: 2016 National Survey of Children’s Health."

Bullying is a serious public health issue among children and adolescents in the United States. Existing national data sources provide limited current information about involvement in bullying among youth. The purpose of this study was to estimate the prevalence of parent-reported bullying victimization and perpetration among U.S. children and adolescents ages 6–17 years using nationally representative data, and to examine health-related factors associated with bullying experiences. We conducted secondary data analysis of the 2016 National Survey of Children’s Health, and stratified the sample by age (6–11 years, 12–17 years). We performed bivariate analyses to examine prevalence of bullying experiences according to demographic characteristics, health conditions, health behaviors, health services, and family environment. Using multivariable logistic regressions, we assessed the association between these factors and bullying experiences. Results showed that 22.7% of U.S. children and adolescents were bullied by others and 6.4% bullied others. The rate of bullying victimization was slightly higher among 6–11 year olds than among 12–17 year olds (24.1 vs. 21.1%, p = 0.011). The rate of bullying perpetration was 7.2% among children and 5.6% among adolescents but the difference between age groups was not statistically significant (p = 0.086). Several health conditions and health services factors were associated with either bullying victimization or perpetration, including special health care needs, internalizing problems, behavior or conduct problems, speech or other language disorders, autism, and unmet need for mental health treatment or counseling. Bullying victimization was also strongly associated with bullying perpetration.

From the article:

This study is consistent with others (National Academies 2016) in highlighting the need for universal prevention efforts and targeted services for children and adolescents to address bullying, Findings from this study suggest that such efforts should begin at young ages and address the needs of those who are at greatest risk of being bullied, including those with special health care needs, internalizing problems, behavioral and conduct problems, autism, and speech or other language disorders. Results also reveal opportunities to improve access to mental health services for youth experiencing bullying. Efforts should be made to target Journal of Child and Family Studies bullying prevention strategies where children and adolescents at higher risk are served, such as during health care visits and mental health visits. Parents, educators, speech and occupational therapists, coaches, and other adults who are in frequent contact with children and adolescents, should be offered training on bullying, who is at the greatest risk, and prevention and intervention strategies

Restraint in Texas

In The Politics of Autism, I discuss the use of restraint and seclusion.  It is a big problem in Texas.

In Texas, Caitlyn Jones at The Denton Record-Chronicle:

“Unfortunately, restraints are very common,” said Elbe, the attorney for Disability Rights Texas. “It happens in large and small schools. It happens in high schools and at the elementary level.”

Texas law allows staff members to physically restrain special education students if there is a threat of “imminent, serious physical harm” to themselves or others or there’s a chance of serious property destruction. But Elbe said those terms are often vague and, in several cases, translate to persistent misbehavior.

The law also states that restraint must be limited to reasonable force and stop when the emergency no longer exists. School employees aren’t allowed to use mechanical restraints such as handcuffs, but peace officers who contract with the district, as is the case with Denton ISD, are.

Schools are required to make a “good faith effort” to verbally contact the parents when restraint is used. They must also provide parents a written report within one day of the restraint. In the April 30 incident at Lee, officials sent the report two days later.

According to TEA numbers, Denton ISD met the state average by restraining six out of every 100 special needs students during the 2016-17 school year. At the county level, the number jumped to 14 out of every 100 students. 

A student’s disability could affect their chances of being restrained.

Denton ISD restrained 24 of every 100 students diagnosed with autism and 32 out of every 100 students diagnosed with an emotional behavior disorder. Denton County restrained 38 percent of its autistic population and 59 percent of its emotional behavior population, while the state restrained 12 percent of kids diagnosed with autism and half of the kids who had an emotional behavior disorder.

“If a student was hard of hearing, you wouldn’t punish them for not hearing directions to sit down in their chair,” said Diane Myers, the chairwoman of the teacher education department at Texas Woman’s University. “With students who have emotional behavior disabilities or are on the spectrum, not being able to control their behavior is part of their disability."

Survey on Research Priorities

In The Politics of Autism, I discuss the incentive structure facing academic researchers:

This diversity of research agendas is partially a result of uncertainty. Amid the darkness, it might make sense to shine searchlights in all directions. Some of it may also stem from the availability of autism research money at a time of tight science budgets. To put it bluntly, publication-hungry scientists may have an incentive to rebrand marginally-relevant work as autism-related. Describing her study of how experts on sex differences have landed on the “biomedical platform” of autism, science historian Sarah Richardson says they “have begun to link their very basic research -- even if it’s on nematodes [roundworms] -- to frame it as a contribution to autism.”

Thomas W. Frazier, Geraldine Dawson and colleagues have an brief report at the Journal of Autism and Development Disorders titled "A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders." The abstract:

Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30–59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities.

From the article:

[Findings suggest] that the majority of the autism community, including the majority of people with autism,recognizes the value of basic and translational science for driving toward understanding and generating more powerful interventions for the future. The major exception was animal models, which generally received low priority ratings, even among the researchers who completed the survey. This finding deserves more attention, and funders who regularly support animal work may benefit from greater attention to helping stakeholders understand the potential value of this work. Regardless, the slightly lower overall ratings for basic science suggest a continual need to communicate the importance of early stage basic science projects as drivers of future innovation in applied research.

Delaying the Equity in IDEA Rule

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.
Christina Samuels at Education Week:

The U.S. Department of Education is delaying, by two years, implementation of a rule that would require states to take a closer look at how school districts identify and serve minority students with disabilities.

The "Equity in IDEA" rule, issued by the Obama administration in December 2016, would have gone into effect for the 2018-19 school year. It created a new process for states to follow when they monitor how districts identify minority students for special education, discipline them, or place them in restrictive classroom settings.

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

Partners in Policymaking

In The Politics of Autism, I write that autism parents must be advocates for their children, who in turn must grow up to be advocates for themselves.

Very quickly, parents will learn that there is no one-stop shopping in the autism world.  Various providers offer various services, with various levels of support from the government, which largely depends on where one lives. Wherever they turn, parents run into red tape.  “Trying to obtain services for a special-needs child is a never-ending process,” one mother told a Tennessee journalist. “Taking care of the children is much simpler than taking care of the paperwork.”  

Joseph Shapiro at NPR:

Most graduates of the Partners in Policymaking class are the mothers of young children with developmental disabilities. They've been meeting at this hotel one weekend a month for eight months.

They learned how to fight for their child in school, and how to push for health care their child needs. But also, how to read a state budget, how to talk to a state lawmaker and how to testify before the school board or city council.

...

There are 5.2 million children with developmental disabilities in America. That's according to Sheryl Larson, of the Institute on Community Integration at the University of Minnesota and the senior researcher of an annual report on services for people with developmental disabilities.

...
Partners in Policymaking is available not just in Minnesota. Currently, 29 states and the District of Columbia run classes. Since it started in 1987, the total number of graduates has grown to more than 27,000.

The graduates are the parents — almost always mothers — of a young child with a developmental disability. Or they're an adult with a disability. It's not unusual that a parent takes the class first, then the kid grows up and takes the class, too.

...
Those are stories Colleen Wieck wants parents to tell. She started Partners in Policymaking in 1987. At a Senate hearing in Washington on cuts to Medicaid, Wieck watched a parent struggle to tell her story — and got the idea to train parents. "One story can make a difference," says Wieck, who runs the Minnesota Governor's Council on Developmental Disabilities, which sponsors the program. "And we teach people, you owe it to the world to tell your story. You have a story. You tell it. It could change public policy."

Jillian Nelson is the first person parents talk to when they call the Autism Society of Minnesota, often because their child just got a diagnosis of autism. "The underlying message that I always give people is, 'You're going to be okay. ... Your kid's life may be different than you ever imagined, but it's still going to be a good life and everything's going to be okay."

Nelson is an adult with autism.

Nonmedical Vaccine Exemptions

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

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

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

Immigrant Families Opt Out of Services

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

At Kaiser Health News, Ashley Lopez reports on immigrant families opting out of health services.

Health care groups say they’ve observed other immigrant families making similar choices, and they think it will accelerate if a proposed change to green card eligibility becomes law. Under the proposed change, if family members receive government services — even if those family members are citizens — it would ding the applicants’ chances of approval for permanent residency.

“We are seeing families having to make this impossible choice,” said Maria Hernandez, the founder of Vela, a nonprofit in Austin that helps parents who have children with disabilities.

...

In the first year of the Trump administration, Central Texas experienced an uptick in immigration raids and deportations. Since then, Hernandez said, a lot of people in the immigrant community have been making critical choices out of fear.

“It’s out of fear of deportation,” she said. “It’s out of fear of having their children being penalized in some way and potentially losing a parent that until this point has been their fierce advocate.”

...
Hernandez said parents who have children with disabilities have told her that without Medicaid they’ll rely on emergency rooms “as needed.”

“We know that that is not a good plan for kids that for forever have been followed by a neurologist because they have seizures or have been going to occupational therapy for years and are finally making progress,” she said.

Approximately 10 million citizen children in the U.S. have at least one non-citizen parent.

Another Correlate: Maternal Diabetes

n 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;
• Fever  
• Birth by cesarean section;
• Maternal and paternal obesity;
• Maternal and paternal age;
• Maternal post-traumatic stress disorder;
• Smoking during pregnancy;
• Antidepressant use during pregnancy;

 A release from JAMA:

Risk of Autism Increased in Children of Mothers with Diabetes
JAMA
Research Letter
Maternal Type 1 Diabetes and Risk of Autism in OffspringJAMA
EMBARGOED FOR RELEASE: 8 A.M. (ET), SATURDAY, JUNE 23, 2018
Media advisory: To contact corresponding author Anny H. Xiang, Ph.D., email Elita Fielder at Elita.T.Fielder@kp.org. The full study is available on the For The Media website.
Want to embed a link to this report in your story? Link will be live at the embargo time: http://jamanetwork.com/journals/jama/fullarticle/10.1001/jama.2018.7614
Translation available: A translation in simplified Chinese is available below.
本篇新闻发布稿件备有翻译版本：以下内容为中文简体翻译版本


Bottom Line: The risk of autism spectrum disorder (ASD) was increased in children of mothers with the three main types of diabetes that complicate pregnancy, findings that add new information on type 1 diabetes and extend what is already known about type 2 and gestational diabetes.

Why The Research Is Interesting: Maternal preexisting type 2 diabetes (T2D) and gestational diabetes mellitus (GDM) diagnosed by 26 weeks have been associated with increased risk of ASD in children in prior research. Less is known about ASD risk associated with maternal preexisting type 1 diabetes (T1D).

Who and When: 419,425 children born at 28 to 44 weeks from 1995-2012.

What (Study Measures and Outcomes): Maternal T1D, T2D and GDM (exposures); diagnosis in children of ASD, which includes autistic disorders, Asperger syndrome and pervasive developmental disorder not otherwise specified (outcomes)

How (Study Design): This was an observational study. Researchers were not intervening for purposes of the study and cannot control all the natural differences that could explain the study findings.

Authors: Anny H. Xiang, Ph.D., Kaiser Permanente Southern California, Pasadena, California, and coauthors

Results: Risk of ASD was higher in children exposed in utero to maternal preexisting T1D, T2D and gestational diabetes diagnosed by 26 weeks compared with no maternal diabetes exposure.

Study Limitations: Risk factors of the father, along with other intrauterine and postnatal exposures, couldn’t be assessed.

Study Conclusions: Results suggest the severity of maternal diabetes and the timing of exposure (early vs late in pregnancy) may be associated with the risk of ASD in children of mothers with diabetes.

To Learn More: The full study is available on the For The Media website.
(doi:10.1001/jama.2018.7614)
Editor’s Note: This study is being presented at the American Diabetes Association’s 78th Scientific Sessions. Please see the article for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.
# # #
For more information, contact JAMA Network Media Relations at 312-464-JAMA (5262) or emailmediarelations@jamanetwork.org.

A Blood Test?

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

Researchers at that Rensselaer Polytechnic Institute are studying a potential blood test. Tim Newman reports at Medical News Today:

Instead of looking for one single chemical to measure, the researchers — led by Prof. Juergen Hahn — used a big data approach and searched for patterns in metabolites.

In 2017, the researchers had their first success. They analyzed blood from 149 people with an ASD diagnosis, assessing each sample for levels of 24 metabolites. The chemicals were all related to two particular cellular pathways: the methionine cycle, and the transsulfuration pathway.

Having done this, they scientists were able to create a test that could correctly identify more than 96 percent of ASD cases within the group that they had recruited.

Recently, the same team set out to replicate its findings in a new dataset.

They assessed data from 154 children with ASD, taken by researchers from the Arkansas Children's Research Institute in Little Rock. This time, however, they only had access to information on 22 of the 24 metabolic markers they had used in the last trial.

Their results were published this month in the journal Bioengineering and Translational Medicine,and they are encouraging.

When they applied the algorithm, it predicted ASD correctly in 88 percent of cases.

While 88 percent is an impressive result, it is lower than the success rate from the previous studies. Prof. Hahn thinks that this is because the two missing metabolites were shown to be strong indicators in the last study. However, the results are still exciting.

As always with autism, caution is in order.  For decades, ASD people and their families have read of medical breakthroughs, only to meet with disappointment as more studies come in.

The Autism at Work Employer Roundtable

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

Dinah Eng at Fortune:

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

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

In The Politics of Autism, I write about litigation under the Individuals with Disabilities Education Act. School districts prevail in most due-process hearings.  Here are some reasons:

School districts have built-in expert witnesses in the form of teachers and staff.  They also have full access to all relevant information about a proposed placement, and often deny parents access to those programs in advance of hearings. When parents’ experts can observe children in class, districts can limit their observations.   More important, parents have to foot the bill for their experts because of a 2006 Supreme Court decision that IDEA does not authorize reimbursement of witness fees. “While authorizing the award of reasonable attorney's fees, the Act contains detailed provisions that are designed to ensure that such awards are indeed reasonable,” Justice Alito wrote for the majority. “The absence of any comparable provisions relating to expert fees strongly suggests that recovery of expert fees is not authorized.” It goes without saying that this decision disadvantages all parents, and especially those with modest incomes. 

California OAH ( Office Of Administrative Hearing ) Special Education statistics https://www.californiaspecialedlaw.com/due-process-hearing-decision-statistics/ 
Percent of cases when student prevailed :

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

"Brain Balance"

In The Politics of Autism, I write:

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

Chris Benderev at NPR:

Although Brain Balance isn't the only purveyor of alternative approaches for developmental disorders in the U.S., the scale of the enterprise sets it apart. The company's approach is still relatively new and not widely known, meaning many experts in the field of childhood development have not vetted its effectiveness.

Brain Balance says its nonmedical and drug-free program helps children who struggle with ADHD, autism spectrum disorders and learning and processing disorders. The company says it addresses a child's challenges with a combination of physical exercises, nutritional guidance and academic training.

An NPR investigation of Brain Balance reveals a company whose promises have resonated with parents averse to medication. But Brain Balance also appears to have overstated the scientific evidence in its messaging to families, who can easily spend over $10,000 in six months, a common length of enrollment.

...
 Yet a dozen experts in autism spectrum disorder, ADHD, dyslexia and childhood psychiatry interviewed by NPR all identified flaws in Brain Balance's approach.

They said the company's idea of imbalanced hemispheres was too simplistic and built upon the popular, discredited myth of the logical left brain and the intuitive right brain.

"It doesn't make sense," says Mark Mahone, a pediatric neuropsychologist at the Kennedy Krieger Institute in Baltimore. "In virtually every activity that one does ... both hemispheres of the brain are very, very active. ... It's not as simple as just being a left- or a right-hemisphere problem. Nothing is that simple."

 As for the three-pronged Brain Balance regimen, experts NPR spoke with said there is no solid evidence suggesting gluten, dairy or sugar consumption affects ADHD, autism or dyslexia. And although physical exercise may have modest impacts on inattention and tutoring can help in school, these interventions can be found elsewhere for much less money. No expert suggested either as a front-line remedy for ADHD or autism.