IACC Is Back

In The Politics of Autism, I discuss the Inter-Aggency Autism Coordinating Committee.

A release from IACC:

The U.S. Department of Health and Human Services (HHS) today announced the appointments of new and returning members to the Interagency Autism Coordinating Committee (IACC), reauthorized under the Autism CARES Act. After an open call for nominations for members of the public to serve on the committee, Secretary of Health and Human Services, Sylvia M. Burwell, appointed this group of individuals to provide her with advice to advance research, strengthen services, and increase opportunities for people on the autism spectrum. The public member appointees include three adults on the autism spectrum, several family members of children and adults on the autism spectrum, clinicians, researchers, and leaders of national autism research, services, and advocacy organizations. Many of the appointed individuals serve dual roles, dedicating their professional careers to helping people on the autism spectrum because of their personal experiences with autism spectrum disorder (ASD). The first meeting of the new committee will take place on November 17, 2015 in Rockville, Maryland.

In addition to the new public members, the IACC will have a new chair when it reconvenes. Dr. Thomas Insel, who served as the Director of the National Institute of Mental Health (NIMH) and as Chair of the committee for more than a decade, announced his planned departure for Google Life Sciences at the end of October 2015. Dr. Bruce Cuthbert, who will become Acting Director of NIMH on November 1, has been appointed to serve as the IACC Chair over the next year.

Autism research, services, and advocacy organizations represented by new and returning appointees to the committee include: Association of University Centers on Disabilities, Arc of the United States, Autism Science Foundation, Autism Speaks, Autism Society, Simons Foundation, and Autistic Self Advocacy Network. Federal departments and agencies represented on the committee include several agencies within HHS: Administration for Children and Families, Administration for Community Living, Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services, Food and Drug Administration, Health Resources and Services Administration, and National Institutes of Health; as well as Department of Education, Environmental Protection Agency, and Department of Defense.

The responsibilities of the committee include annually updating the IACC Strategic Plan for ASD, preparing an annual summary of advances in ASD research, monitoring federal ASD activities, and providing guidance to the HHS Secretary on matters related to ASD.
The public members appointed by the Secretary to serve on the renewed IACC are:

• David Amaral, Ph.D. Dr. David Amaral is a new public member of the IACC. He is a Professor of Psychiatry, Behavioral Sciences and Neuroscience at the University of California, Davis. He is also Beneto Foundation Chair and Founding Research Director of the UC Davis MIND (Medical Investigation of Neurodevelopmental Disorders) Institute, and Director of the Autism BrainNet. Dr. Amaral conducts research on the neurobiology of ASD. He received a joint Ph.D. in psychology and neurobiology from the University of Rochester and carried out postdoctoral work at Washington University in neuroanatomy.
• James Ball, Ed.D., B.C.B.A.-D. Dr. Jim Ball has served on the IACC as a public member since 2012. He is a Board Certified Behavior Analyst (BCBA-D) and President and CEO of JB Autism Consulting. He has worked in the autism field for more than 25 years, providing educational, employment, and residential services to children and adults affected with autism. He is a Board member of the Autism Society's Board of Directors and is currently the Chair of the National Board. He received his Doctor of Education degree from Nova Southeastern University in Fort Lauderdale, Florida.
• Samantha Crane, J.D.Ms. Samantha Crane is a new public member of the IACC. She is Legal Director and Director of Public Policy at the Autistic Self Advocacy Network (ASAN) and an autistic self-advocate. Ms. Crane previously served as staff attorney at the Bazelon Center of Mental Health Law, focusing on enforcing the right to community integration as established by the Supreme Court in Olmstead v. L.C.. Ms. Crane holds a B.A. from Swarthmore College, with high honors, in Psychology, and she received her J.D. degree from Harvard Law School.
• Geraldine Dawson, Ph.D.Dr. Geraldine Dawson has served on the IACC as a public member since 2012. She is a Professor of Psychiatry and Behavioral Sciences in the Duke School of Medicine and a faculty member of the Duke Institute for Brain Sciences. Dr. Dawson also is Director of the Duke Center for Autism and Brain Development and President of the International Society for Autism Research. Dr. Dawson is a licensed clinical psychologist and researcher who has published extensively on ASD, focusing on early detection, intervention, and early brain development. She received her Ph.D. in Developmental Psychology with a minor in Child Clinical Psychology from the University of Washington and was a postdoctoral fellow at the University of California at Los Angeles.
• Amy Goodman, M.A. Ms. Amy Goodman is a new public member of the IACC. She is the Director of the Arc of the United States’ Autism NOW Resource and Information Center, which serves the needs of individuals with autism and their families. She is a self-advocate for individuals on the autism spectrum and holds a master’s degree in special education from Marshall University in West Virginia.
• Shannon Haworth, M.A. Ms. Shannon Haworth is a new public member of the IACC. She is the Public Health Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD) and a parent of a child on the autism spectrum. She has a master’s degree in Applied Behavior Analysis and a graduate certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate Certificate in Disability Leadership from Virginia Commonwealth University, is currently a doctoral candidate (DrPH) studying Public Health at Walden University, and is a certified Early Intervention Specialist for the state of Virginia.
• David Mandell, Sc.D. Dr. David Mandell has served on the IACC as a public member since 2012. He is an Associate Professor of Psychiatry and Pediatrics at the University of Pennsylvania's School of Medicine. He is a health services researcher and psychiatric epidemiologist whose work focuses on identifying the best ways to organize, finance and deliver services to children with autism and other psychiatric and developmental disabilities. Dr. Mandell holds a Bachelor of Arts in psychology from Columbia University and a Doctor of Science from the Johns Hopkins School of Hygiene and Public Health.
• Brian Parnell, M.S.W., C.S.W.
• Mr. Brian Parnell is a new public member of the IACC. He has led a distinguished career in child welfare and disabilities services and as an administrator of public and nonprofit agencies, having supervised and managed social service programs for more than 20 years. Mr. Parnell currently works at the Utah Division of Services for People with Disabilities, Department of Human Services, and helped develop Utah’s Medicaid Autism Waiver program. Mr. Parnell is a parent of seven children, three of whom are on the autism spectrum.
• Kevin Pelphrey, Ph.D. Dr. Kevin Pelphrey is a new public member of the IACC. He is the Harris Professor in the Child Study Center and Professor of Psychology at Yale University and Director of the Yale Center for Translational Developmental Neuroscience. He also is the father of two children on the autism spectrum. Dr. Pelphrey's research focuses on the development of brain mechanisms for social cognition in children with and without ASD. He also is the Principal Investigator for a federally-funded multisite Autism Center for Excellence, “Multimodal Developmental Neurogenetics of Females with ASD.” Dr. Pelphrey received his Ph.D. in Psychology from the University of North Carolina at Chapel Hill.
• Edlyn Peña, Ph.D.
• Dr. Edlyn Peña is a new public member of the IACC. She is an Assistant Professor of Higher Education Leadership at California Lutheran University (CLU) and is a parent of a child on the autism spectrum. Dr. Peña’s research focuses on social justice issues for ethnic/racial minorities and students with autism and other developmental disabilities in higher education. She earned her Ph.D. in Education with a concentration in Higher Education from the University of Southern California.
• Louis Reichardt, Ph.D.Dr. Louis Reichardt is a new member of the IACC. He is the Director of the Simons Foundation Autism Research Initiative (SFARI), whose goal is to improve the understanding, diagnosis, and treatment of ASD by funding innovative, high quality research. Prior to this, he was a Professor of Physiology and Biochemistry & Biophysics at the University of California, San Francisco, where he directed its neuroscience graduate program and Herbert W. Boyer Program in Biological Sciences. His research has focused on neurotrophins, a family of proteins that play a key role in brain development and function. Dr. Reichardt was a Fulbright scholar and earned his undergraduate degree from Harvard University and a Ph.D. in Biochemistry from Stanford University.
• Robert Ring, Ph.D. Dr. Robert Ring has served on the IACC as a public member since 2014. He is the Chief Science Officer (CSO) for Autism Speaks, the largest autism science and advocacy organization in the U.S. Dr. Ring is responsible for leading the science program at Autism Speaks, which features a diverse portfolio of research investments targeting medical research on the underlying biology of ASD, diagnosis, treatment, etiology, public health, and innovative technologies. Dr. Ring holds adjunct faculty appointments in the Department of Psychiatry at Mount Sinai School of Medicine (New York) and the Department of Pharmacology and Physiology at Drexel University College of Medicine (Philadelphia). He holds a Ph.D. in Molecular Neurobiology from City of Hope National Medical Center in Southern California.
• John Elder Robison Mr. John Elder Robison has served on the IACC as a public member since 2012. He is the Neurodiversity Scholar in Residence at the College of William & Mary in Williamsburg, Virginia, where he teaches courses on neurodiversity and living with autism. He is an autistic adult who is best known for working to increase public understanding of autism, and he is the author of several popular books about living life with autism, including Look Me in the Eye, My Life with Asperger's, Be Different: Adventures of a Free-Range Aspergian, and Raising Cubby.
• Alison Singer, M.B.A. Ms. Alison Singer has served on the IACC as a public member since 2007. She is Co-Founder and President of the Autism Science Foundation, a not-for-profit organization launched in April 2009 to support autism research by providing funding and other assistance to scientists and organizations conducting, facilitating, publicizing, and disseminating autism research. Ms. Singer is the mother of a daughter with autism and legal guardian of her adult brother with autism. Ms. Singer graduated magna cum laude from Yale University with a B.A. in Economics and has an M.B.A. from Harvard Business School.
• Julie Lounds Taylor, Ph.D. Dr. Julie Lounds Taylor is a new public member of the IACC. Dr. Taylor is an assistant professor of Pediatrics and Special Education at Vanderbilt University and an Investigator at the Vanderbilt Kennedy Center. Her research focuses on factors that promote a positive transition to adulthood for individuals with ASD and their families, as well as the impact of having a sibling with an intellectual or developmental disability. She has published research on a variety of autism and disability services-related issues, including sex and gender differences, peer victimization, transition planning, secondary education and vocational training, employment, and daily life skills for people on the autism spectrum. Dr. Taylor earned her Ph.D. in developmental psychology at the University of Notre Dame.

***
The IACC is a Federal advisory committee that was created by Congress in an effort to accelerate progress in ASD research and services. The IACC works to improve coordination and communication across the Federal government and work in partnership with the autism community. The Committee is composed of officials from many different Federal agencies involved in autism research and services, as well as adults on the autism spectrum, parents and family members of individuals on the autism spectrum, advocates, researchers, providers, and other members of the autism community. The documents and recommendations produced by the IACC reflect the views of the Committee as an independent advisory body and the expertise of the members of the Committee, but do not represent the views, official statements, policies or positions of the Federal government. For more information on the IACC, please visit: www.iacc.hhs.gov.


Areva Martin and the "Public Nuisance" Case

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

A press release from Martin & Martin:

FOR IMMEDIATE RELEASE
October 29, 2015
Martin Law Media
Jennifer Wong
jwong@martin-martinllp.com

AUTISM ADVOCATE AND CIVIL RIGHTS ATTORNEY TAKES OVER DEFENSE FOR FAMILY SUED BY NEIGHBORS CLAIMING AUTISTIC CHILD IS A ‘PUBLIC NUISANCE’

Los Angeles, CA (10/29/15)— Nationally recognized autism advocate and civil rights attorney, Areva Martin, Esq., with LA-based Martin & Martin LLP, has taken over a case involving California parents of an autistic child. In the summer of 2014, Robert Flowers, Marci Flowers, Bindu Pothen and Kumaran Santhanam of Sunnyvale, sued their neighbors Vidyut Gopal, Parul Agrawal and the couple’s autistic son in Santa Clara County Superior Court. The lawsuit seeks monetary damages and a temporary and permanent injunction declaring that the Gopals’s autistic child is a public and private nuisance.

The case made national headlines earlier this year after a blogger wrote about the case details. The neighbors’ complaint includes a series of allegations regarding the minor’s conduct ranging from entering a neighbor’s garage to pulling another kid’s hair. The Gopals deny most of the allegations, some of which date back to 2007 when their son was only 3 years old. Moreover, the Gopals claim that the incidents that occurred were minor and involved common behaviors of small children. A few days after the filing, plaintiffs filed a motion for a temporary injunction that the court granted, ordering the Gopals to provide “adequate supervision for their minor son.”

The Gopal family sought out Martin to represent them after stories appeared in the media painting them and their son in an inaccurate and negative light, and also at the urging of many in the autism community who believe the case raises serious civil rights issues regarding families of children with autism and other disabilities.

A national advocate for children suffering from autism and other developmental disabilities, Martin says she is “extremely concerned about the negative light that autism families are being painted in” and that “the Gopals’s constitutional rights may have been violated by many of the actions of their neighbors involved in the lawsuit.”

Martin and her firm, where she is a founding and managing partner, plan to vigorously defend this matter by filing a motion to have the temporary injunction dismissed and are evaluating the issues for a possible civil rights countersuit.

“Plaintiffs’ attempt to declare a young boy with autism, or his behaviors, a public nuisance is not only illegal and against public policy, but it also denies him the dignity and rights afforded to him under the California and U.S. Constitutions,” says Martin.
Kristin Jacobson, the executive director of Autism Deserves Equal Coverage Foundation in California, was shocked by the lawsuit. “Given the progress our state and country has made in other areas of tolerance and acceptance, the discrimination and harassment this family is facing based on the disability is extremely disheartening and an embarrassment.”

“Californians should be supporting and boosting up our most vulnerable and struggling families, but instead the state has been slashing services that would allow individuals with disabilities to be included and welcomed in our neighborhoods. Shame on us and doubly shame on these neighbors.”

Feda Almiliti, a Bay-area autism advocate, echoed Jacobson’s sentiment. “Alleging that a young boy with autism is a “nuisance” is a whole new low. This sickening case sent a chill down my spine.”

Martin has already begun working on the case and providing the family with hope for justice. In the meantime, a Santa Clara judge ordered judicial meditation between the parties. The date of the meditation is December 16. A timeline for the case can be found on the Superior Court’s website.

For interviews, contact Jennifer Wong at 213-388-4747 or jwong@martin-martinllp.com.

Carson and Mannatech

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

Will Oremus writes at Slate:

CNBC’s Carl Quintanilla was lustily booed by the GOP debate audience Wednesday night for pressing Ben Carson on his relationship with a sketchy nutritional supplements firm. The jeers rained so loudly that Carson couldn’t even finish his answer to the question. Which is good for him, because he was in the process of spinning one of the most convoluted, nonsensical, bald-faced lies of the entire campaign. And that’s saying something.

The question was about Carson’s 10-year involvement with a sketchy multilevel marketing firm called Mannatech. As Quintanilla noted, Mannatech has faced scrutiny over its claims that its vitamins could cure everything from autism to cancer, and itpaid $7 million to settle deceptive advertising charges brought by the Texas attorney general. Slate’s Helaine Olen has also explained how companies like Mannatech prey on the poor, desperate, and gullible by promising riches if they enroll as direct-sales associates hawking the company’s products. Quintanilla asked Carson a simple question: Why would he continue to be involved with such a company?

Back in January, Jim Geraghty reported at National Review:

Carson’s interactions with Mannatech, a nutritional-supplement company based in suburban Dallas, date back to 2004, when he was a speaker at the company’s annual conferences, MannaFest and MannaQuest. He also spoke at Mannatech conferences in 2011 and 2013, and spoke about “glyconutrients” in a PBS special as recently as last year.

...
In 2007, three years after Carson’s first dealings with Mannatech, Texas attorney general Greg Abbott sued the company and Caster, charging them with orchestrating an unlawful marketing scheme that exaggerated their products’ health benefits. The original petition in that case paints an ugly picture of Mannatech’s marketing practices. It charges that the company offered testimonials from individuals claiming that they’d used Mannatech products to overcome serious diseases and ailments, including autism, non-Hodgkins lymphoma, and life-threatening heart conditions.
...
“This was a particularly egregious case of false advertising,” said Christine Mann, a spokeswoman for the Texas Department of State Health Services. “It’s rare for us to see a dietary-supplement manufacturer claim a particular product cures cancer, autism, or any number of retractable or incurable diseases. We do see all kinds of claims being made in the supplement industry, but in many cases we find manufacturers do not know the rules and will work with us to make sure they get into compliance with the applicable laws.”

IN 2007, ABC reported:

But "20/20's" hidden camera investigation found some Mannatech sales associates teaching potential recruits how to work around legal restrictions.

"You can't tell people that it's going to cure anything, but you can say, 'I think I have something that will help you with your cancer,'" a sales associate told a "20/20" producer who attended one meeting.

And even at Mannatech's corporate-sponsored annual convention held in 2006, a video obtained by "20/20" shows a high-level sales associate counseling front-line salespeople in the fine art of walking the fine line.

"How many of you can think of a target or a market to target?" As the audience calls out, he repeats their suggestions. "Autism? Cancer? Diabetes? There's millions, right? Now, if they are health specific, can you mention Mannatech? No, absolutely not. But can you build a list of people who want to know about that particular situation? Yes."

Rhoads recently went for an MRI. She said that although the results show she is not cancer-free, she believes Mannatech's products are benefiting her, and she will continue to ignore her doctor's recommendation for chemotherapy and radiation.

Problems with Michigan Fund

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

Emily Lawler writes at MLive that a Michigan law creating an insurance fund has an implementation problem: the fund is about to run out of money.

The 2012 legislation, signed by Lt. Gov. Brian Calley, mandated that insurance companies operating in Michigan provide coverage for autism diagnosis and treatment.

But it didn't apply to large employers who self-fund their health insurance, like GM or DTE Energy. To incentivize companies like those to provide autism coverage, the state established a fund which reimbursed insurers for paid claims relating to autism coverage.

DIFS [Department of Insurance and Financial Services].administers the fund, and Office of Financial and Administrative Services Director Penny Wright said in a presentation to the House Appropriations Licensing and Regulatory Affairs Subcommittee on Tuesday that soon there won't be any money to reimburse companies with.

"By the end of November we are anticipating the fund to be depleted completely," Wright said.

That's a stark change from the fund's early history. It was initially appropriated $15 million, and in the first few months of operation only $3,000 was disbursed. But Wright said that changed as insurers became more educated about the fund and more claims worked their way through the process.

The legislature reacted by cutting funding in the next few budget cycles and sending portions of it to another autism-related cause: grants to universities training future health care professionals in autism treatment.

Autism and Popular Culture, Continued

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

Jennie Baird writes at The New York Times:

Last week’s news that Sesame Street was introducing the first autistic Muppet was met in my house with a resounding, “Huh?”

“But there already is an autistic Muppet,” my high-functioning 14-year-old said. “Fozzie Bear.”

I had never thought of Fozzie that way, but my son had a point. Fozzie is not good at taking social cues; he doesn’t read a room well and he tends to monologue and perseverate (to repeat himself long after the need has passed). He interprets figurative language as literal — remember that fork in the road in “The Muppet Movie?” He has a verbal tic he falls back on, “wokka-wokka.” And he hates to be separated from his hat for no obvious reason.

Lexie Hammesfahr writes at Newsy:

Another TV character cited in autism blogs as a pop culture figure who has helped the community is Sheldon Cooper on "The Big Bang Theory."

The show's writers told Jim Parsons, the actor who plays Sheldon, that the character does not fall on the autism spectrum. But Parsons told Adweek that after researching the disorder, Sheldon "certainly shares some qualities with those who do." (Video via CBS / "The Big Bang Theory")

Parsons says that because Sheldon does not officially have the disorder on the show, it helps combat the stigma — something he says he relates to as a member of the gay community. "It's nice when you see gay characters as normal people. ... This is who this person is; he's just another human." (Video via CBS / "The Big Bang Theory")
Well said, Parsons. Well said.

More on the Autistic Muppet

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

Joy Resmovitz writes at The Los Angeles Times about the new Sesame Street character, who has autism.

So if Sesame, whose mission is “to help all children grow smarter, stronger and kinder,” were truly interested in representing autism most accurately, wouldn’t its new character be a boy?

That question isn’t lost on Sherrie Westin, Sesame’s executive vice president, global impact and philanthropy. Julia took three years to create, and after consulting extensively with researchers, she was at first surprised that they recommended a girl. But the more she thought about it, the more it made sense to her.

“We made sure she was a girl namely because autism is seen so much more often in boys,” she said. “We wanted to make it clear that girls can be on the spectrum, too. .. We’re trying to eliminate misconceptions, and a lot of people think that only boys have autism.”

...
“Sesame can be a great convener of different interests,” Westin said. “We were able to bring people at opposite ends of the spectrum, pun intended, from Autism Speaks, to the Autism [sic] Self-Advocacy Network. Those groups see certain things differently, but what they had in common is they wanted to give families and children tools.” Both groups have released statements supporting the initiative.

Besides, Westin said, Sesame isn’t wading into the more controversial aspects of autism, such as its cause. “We don’t pretend that every child who is on the spectrum is the same,” Westin said. Sesame is trying to tackle a fundamental problem: Autistic children are five times as likely to be bullied than their peers.

Ultimately, after working with these groups and experts from such institutions as the Yale Child Study Center, they decided on these characteristics for Julia: She can talk. She cannot make extensive eye contact. And she flaps her arms when she gets excited. “We chose things we thought would be most helpful and most typical,” Westin said. On top of these markers of autism, Julia is very curious and smart.

The Illusion of Causality

In The Politics of Autism, I discuss the discredited theory that vaccines cause autism.

Christine Aschwanden writes at FiveThirtyEight:

Paul Offit likes to tell a story about how his wife, pediatrician Bonnie Offit, was about to give a child a vaccination when the kid was struck by a seizure. Had she given the injection a minute sooner, Paul Offit says, it would surely have appeared as though the vaccine had caused the seizure and probably no study in the world would have convinced the parent otherwise. (The Offits have such studies at the ready — Paul is the director of the Vaccine Education Center at the Children’s Hospital of Philadelphia and author of“Deadly Choices: How the Anti-Vaccine Movement Threatens Us All.”) Indeed, famous anti-vaxxer Jenny McCarthy has said her son’s autism and seizures are linked to “so many shots” because vaccinations preceded his symptoms.

But, as Offit’s story suggests, the fact that a child became sick after a vaccine is not strong evidence that the immunization was to blame. Psychologists have a name for the cognitive bias that makes us prone to assigning a causal relationship to two events simply because they happened one after the other: the “illusion of causality.” A study recently published in the British Journal of Psychology investigates how this illusion influences the way we process new information. Its finding: Causal illusions don’t just cement erroneous ideas in the mind; they can also prevent new information from correcting them.

Overdiagnosis in Some Cases?

Uncertainty is a major theme of The Politics of Autism.

At Autism, Stephen J. Blumberg and colleagues have an article titled "Diagnosis Lost: Differences Between Children Who Had and Who Currently Have an Autism Spectrum Disorder Diagnosis." The abstract:

Autism spectrum disorder diagnoses sometimes change due to misdiagnosis, maturation, or treatment. This study uses a probability-based national survey—the Survey of Pathways to Diagnosis and Services—to compare currently diagnosed (n = 1420) and previously diagnosed (n = 187) children aged 6–17 years based on retrospective parental reports of early concerns about their children’s development, responses to those concerns by doctors and other healthcare providers, the type of provider who made the first autism spectrum disorder diagnosis, and the autism spectrum disorder subtype diagnoses received (if any). Propensity score matching was used to control for differences between the groups on children’s current level of functioning and other current characteristics that may have been related to diagnosis loss. Approximately 13% of the children ever diagnosed with autism spectrum disorder were estimated to have lost the diagnosis, and parents of 74% of them believed it was changed due to new information. Previously diagnosed children were less likely to have parents with early concerns about verbal skills, nonverbal communication, learning, and unusual gestures or movements. They were also less likely to have been referred to and diagnosed by a specialist. Previously diagnosed children were less likely to have ever received a diagnosis of Asperger’s disorder or autistic disorder.

From the article:

Overdiagnosis may also occur if ASD diagnoses are substituted for other learning disabilities because of the availability of greater resources for treatment of ASD (Shattuck, 2006). Parents in this study confirmed that some children who reportedly did not have ASD—approximately one in four who lost their ASD diagnosis or 3% of all school-aged CSHCN ever diagnosed with ASD—were given the diagnosis due to their need for services.

Shattuck PT (2006) The contribution of diagnostic substitution to the growing administrative prevalence of autism in the US special education. Pediatrics 117(4): 1028–1037

 That observation is consistent with The Politics of Autism,  where I write:

Once parents get over their initial denial, they have strong reason to seek a diagnosis of ASD for troubled children, since it can trigger thousands of dollars in assistance. Allen Frances says: “Having the label can make the difference between being closely attended to in a class of four versus being lost in a class of 40. Kids who need special attention can often get it only if they are labeled autistic.” Roy Grinker quotes a leading scientist who also has a clinical practice: “I am incredibly disciplined in the diagnostic classifications in my research, but in my private practice, I'll call a kid a zebra if it will get him the educational services I think he needs.” 

The article has some sobering thoughts on recovery:

Few children ever diagnosed with ASD were said to have actually had and recovered from ASD. Only 21% of children with a lost diagnosis (or less than 3% of all schoolaged CSHCN ever diagnosed with ASD) were said to have lost it due to treatment or maturity. The true rate of recovery may be even smaller if some of these children were incorrectly thought by their parents or doctors to have lost their ASD because they now have well-developed coping skills and other strengths.

The authors appropriately note serious limitations to the study:

The impact of selection biases resulting from sampling, nonresponse, and lack of coverage of non-English speaking households and households without telephones is unknowable, but they are less likely to influence the magnitude of comparisons between matched pairs than absolute estimates of a population prevalence. Still, due to the low response rate, generalizing the results beyond the sample should be done with caution.

The absence of Spanish-only respondents is a serious limitation indeed, since underdiagnosis seems to be a problem among Hispanic families.

More broadly, such a study does not capture the flip side:  people who were incorrectly labeled as not having ASD.  As I write:

Bias can run in the other direction, too. If a school district does not really want to provide services, its psychologists might feel pressure to code behavior in a way that spells “normal.”

Special Education: Maintenance of Effort

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

A new report from the Government Accountability Office:

States reported that nearly all school districts generally met the local maintenance of effort (MOE) spending requirement for special education, but some districts faced challenges for various reasons. Under the Individuals with Disabilities Education Act (IDEA), MOE requires districts to spend at least the same amount on special education services for students with disabilities that they spent in the preceding year, with some exceptions. In response to GAO's 50-state survey, states reported that nearly all districts met MOE based on the most recent data available in all states (school year 2012-13). However, most states reported that at least some of their districts faced challenges in doing so. In a separate GAO survey of districts, many cited budget and cost reductions—such as state or local revenue declines and new state caps on benefits, which lowered the cost of a special education teacher—as key challenges in meeting MOE.

State and district officials had mixed views on MOE's effects on services for students with and without disabilities. MOE is one of several safeguards meant to protect special education funding, and while some officials reported positive effects, others said the requirement can sometimes create unintended consequences for the services provided to special education students. They said that because the MOE requirement lacks flexibility, it can discourage districts from altering their baseline of special education spending, even when doing so would benefit students with disabilities or result in more efficient delivery of the same services. For example, despite other grant provisions in IDEA that promote innovation, some district officials commented that the MOE requirement can serve as a disincentive to districts' efforts to pilot innovative or expanded services requiring a temporary increase in funds because it would commit them to higher spending going forward. In addition, some district officials noted that prioritizing special education spending to meet MOE resulted in cuts to general education spending that affected services for all students, including the many students with disabilities who spend much of their days in general education classrooms.

Reported Unintended Consequences of the Local MOE Requirement

The Department of Education's (Education) delayed monitoring feedback has hampered states' efforts to facilitate district compliance with MOE. In 2010, Education initiated its latest round of reviews of states' processes for overseeing their districts' compliance with IDEA, including MOE. However, Education currently has no standards for providing timely feedback on this process and—as of August 2015—had not provided feedback from these reviews to about half the states, due in part to competing priorities. Such delays are contrary to federal standards that call for prompt resolution of findings. Officials in one state said Education's untimely feedback had delayed the state's ability to provide guidance to districts regarding MOE, and in another state, monitoring was on hold until Education approved the state's process for determining MOE compliance

Autism, Kids, and TV

In The Politics of Autism, I discuss depictions of ASD in popular culture.  Recently, a Disney Channel show ran an episode about autism.

People reports:

Fuzzy favorites Grover, Abby and Elmo are joined by their newest muppet pal, Julia, a character with autism, in Sesame Street Workshop's new nationwide initiative.

Launched Wednesday morning, Sesame Street and Autism: See Amazing in All Children aims to reduce "the stigma of autism" with the introduction of the first muppet with autism.

The initiative, created for communities and families with children ages 2 to 5, includes a free downloadable app that incorporates video, digital story cards designed to make daily life tasks easier for families of children with autism and storybook materials for providers, organizations and caregivers.

"Children with autism are five times more likely to get bullied," senior vice president of U.S. social impact, Dr. Jeanette Betancourt, tells PEOPLE. "And with one in 68 children having autism, that's a lot of bullying. Our goal is to bring forth what all children share in common, not their differences. Children with autism share in the joy of playing and loving and being friends and being part of a group."

From Autism Speaks:

Interview About The Politics of Autism

At Autism Live yesterday, I spoke with Shannon Penrod about my book, The Politics of Autism:




From the book's preface:

A major theme of this book is that just about everything concerning autism is subject to argument.  There is not even any consensus on what one should call people who have autism and other disabilities. “In the autism community, many self-advocates and their allies prefer terms such as `Autistic,’ `Autistic person,’ or `Autistic individual’ because we understand autism as an inherent part of an individual’s identity,” writes blogger Lydia Brown.   Other writers prefer “people-first” language (e.g., “persons with autism”) since it puts the persons ahead of the disability and describes what they have, not who they are.   For the sake of stylistic variety, this book uses both kinds of language, even though this approach will satisfy neither side.  I can only say that I mean no offense.

Much of the book is about problems in public policy.  Let me stress that I do not think that people with autism are themselves a “problem.”  Autistic Americans are citizens, friends, coworkers, sons, daughters, fathers, and mothers. Whenever they do not have a chance to take part in our country’s social and economic life, everybody loses out.  Just think of all the inventions and works of art that never happened because autistic people could not get the education and training that they needed.  In part because of laws such as the Americans with Disabilities Act, things are changing. People with autism are not just the object of public policy, but they are also participants in policy debates.  As I explain in the final chapter, that role will become even more important in the years ahead.

In my research, I have tried to piece together much of what we know about autism, but there is much that we do not know. Fundamental blocks of information are simply missing, such as historical data on the size of the autism population.   This book thus cannot be the last word on the subject, and I hope that it encourages other scholars to fill in some of the gaps.  For instance, we need much more work on the comparative politics of autism policy. Although the book makes references to other countries, its focus is on the United States. It would be extremely helpful to have thorough analyses of how other nations handle autism, including the provision of education and the protection of civil rights.  If you are a graduate student in search of a dissertation topic, consider yourself nudged

Dan Burton, Lobbyist

Legistorm reports:

Former Rep. Dan Burton (R-Ind.) is now officially a lobbyist, having filed to lobby on behalf of a group founded by the Church of Scientology.

Burton, through his firm Dan Burton International LLC, registered as a lobbyist for the Citizens Commission on Human Rights, an organization established by the Church of Scientology in 1969 that advocates against psychiatry and psychiatric medicine. Burton's filing indicates he is representing CCHR's position on issues related to "psychiatric treatments including drugs and brain devices" in the 21st Century Cures Act, which has passed the House and as of yet has no counterpart in the Senate.

This lobbying role is not Burton's first encounter with Scientology. While not a member of the Church, Burton attended the opening of the Church's national office in 2012 and commended the CCHR for its work and the opening of their National Public Affairs Office in Washington, D.C. a few months prior.

Burton and Church officials are also allied in their skepticism of the Food and Drug Administration. Scientology has been in an ongoing battle with the agency for decades. Meanwhile, Burton has criticized the agency on a number of fronts, such as his belief that an FDA-approved vaccine caused autism in his grandson. The FDA and other government agencies reject the theory.

A former committee staffer of Burton's, Beth Clay, who has fought with the FDA on alternative medicines and other matters, has served as a board member on the CCHR.
Burton began service in the U.S. House of Representatives in 1982. He was perhaps best known for his investigations into President Clinton's fundraising practices and the death of White House counsel Vince Foster. He retired in 2013 citing family health issues.

From a March 11, 2007 post at Left Brain/Right Brain:

We now have several DAN! doctors who are scientologists, several thiomersal/autism lawyers who are scientologists, a ‘cured’ child who was diagnosed (partly), treated and ‘cured’ by scientologists and now one Congressman who’s [sic] advisor is a scientologist. We also have one indirect link from scientology to Generation Rescue (in the shape of Julia Berle, founding parent of that organisation and mother to the ‘cured’ child described above) and one direct link from scientology to SafeMinds in the shape of Beth Clay.

Nevada Reimbursement

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

Sandra Chereb writes at The Las Vegas Review-Journal:

Parents of autistic children and providers of early intervention services urged state officials Monday to increase Nevada's proposed rate of reimbursement for treating low-income children, saying to do otherwise will doom the program to failure and deny vulnerable children essential tools to lead productive lives.

They also told administrators for the Nevada Division of Health Care Financing and Policy that Nevada's proposed $29.61 hourly reimbursement rate through Medicaid does not take into account supervisory costs or national credentials that will be required when the program takes effect next year.

"The national examination goes into effect in December," said Charles Marriot, who provides autism treatment through his Las Vegas company, Autism Care West.

"Every individual is going to have to pass a national exam," he said, adding the requirement will severely limit the number of registered behavioral technicians, or RBTs, who work with autistic children one-on-one.

Nevada currently has fewer than 100 registered behavioral technicians and will require many more to help meet the demand once services are extended to Medicaid recipients.

Haley Moss, Autistic Student

In The Politics of Autism, I discuss the growing number of college students on the spectrum.

Haley Moss writes at The Huffington Post about her experiences at the University of Florida.

It was in college, through a diversity retreat, I learned precisely what it means to believe in social justice and to be an advocate beyond the autism and disability communities, but to everyone outside of getting accommodations, or inside the bubble of disability. I learned that one voice can truly make a difference. I learned that my voice was one that my campus needed. I wrote op-eds for the student newspaper, I was a guest speaker to education and disability studies courses, and I continued writing. I was letting my voice be heard all over the place. I graduated from the University of Florida and still get emails that the advocacy work I began is continuing without me, that the next crop of Gators is keeping the legacy alive. For a young woman who had the odds of graduation stacked against her, I was able to do more than survive - I made an impact.

I am in law school at the University of Miami now. I am watching myself do a lot of the same things that worked for me, in a new city, but closer to home. I am watching myself plan my schedules, find time to do what I would like, work around dining options, and also be a "real adult" with an apartment. The statistics are still not in my favor. However, the outside doubt and the internal doubt is much smaller than when I left for college. I've done it before; who is stopping me from thriving once again?

Limits in Nevada

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

Ray Hagar reports at The Reno Gazette-Journal:

Many parents of autistic children in Nevada are at odds with the state over the amount of money the state is willing to pay to fund therapy for their children through Medicaid.
Increased awareness and funding for autism has been a hallmark of the administration of Gov. Brian Sandoval and beginning Jan. 1, one-on-one, early intervention treatments are scheduled to be offered through Medicaid to more than 1,870 autistic children in Nevada.

The Applied Behavioral Analysis (ABA) services to be offered through Medicaid have shown to be very successful in the care of autistic children, parents said.

But the state's low-ball proposal of paying an hourly rate of $29.50 for hiring and training Registered Behavioral Technicians (RBTs) who work with the children could wreck the ABA program before it begins, parents said.

"If Nevada were to set that RBT rate at 29.50 it would be the lowest in the nation," said Stephanie Hill of Las Vegas, an autism activist and parent of an autistic son.

State lawmakers debated the issue of payment to providers during the 2015 Legislature, said state Sen. Ben Kieckhefer, R-Reno, the chairman of the Senate Finance Committee, which must approve all state spending.

"I am concerned there is potential that we could have built this new program and have an inability for kids to use it because there are not enough providers," Kieckhefer. "It was an issue we talked a lot about this session – if the rate is low, we won't have enough providers."

Parents say they face a double whammy: First, the rates for the behavioral technicians are too low – especially compared to neighboring states. Second, Nevada only has about 95 registered RBTs to treat thousands of autistic children.

Nevada ranks #31 in services to people with intellectual and developmental disabilities.

Governor Signs NC Mandate

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

Autism Speaks reports:

Governor Pat McCrory was joined today by North Carolina autism advocates for an autism insurance bill-signing ceremony. Earlier this month, the North Carolina General Assembly approved legislation to require certain health plans to cover the screening, diagnosis and treatment of autism.

S.676 was sponsored by Senators Tom Apodaca and Joyce Krawiec. The insurance mandate becomes effective July 1, 2016 and applies to insurance contracts renewed on or after that date.

“Today is a major victory for the autism community as the state of North Carolina becomes the 43rd state to require insurance carriers to provide individuals with autism the care they deserve,” said Lorri Unumb, Esq., Vice President, State Government Affairs for Autism Speaks. “We are grateful for the hard work of Senator Apodaca and Representative Chuck McGrady to bring autism insurance reform to North Carolina and for Governor McCrory for enacting these important reforms and for his ongoing commitment to the autism community.”

Governor Pat McCrory was joined today by North Carolina autism advocates for an autism insurance bill-signing ceremony. Earlier this month, the North Carolina General Assembly approved legislation to require certain health plans to cover the screening, diagnosis and treatment of autism.

S.676 was sponsored by Senators Tom Apodaca and Joyce Krawiec. The insurance mandate becomes effective July 1, 2016 and applies to insurance contracts renewed on or after that date.

“Today is a major victory for the autism community as the state of North Carolina becomes the 43rd state to require insurance carriers to provide individuals with autism the care they deserve,” said Lorri Unumb, Esq., Vice President, State Government Affairs for Autism Speaks. “We are grateful for the hard work of Senator Apodaca and Representative Chuck McGrady to bring autism insurance reform to North Carolina and for Governor McCrory for enacting these important reforms and for his ongoing commitment to the autism community.”

The health plans subject to the bill include large group plans; grandfathered plans (plans sold to individuals and small groups that have been in effect and essentially unchanged since March of 2010); and transitional or “grandmothered” plans (plans sold to individuals and small groups that are not grandfathered but were in effect prior to 2014.)

With the passage of S.676, several segments of the market are now required to cover treatment for autism. The State Employee Health Plan, covering more than 600,000 individuals, added ABA coverage in January of this year. S.676 requires coverage in certain parts of the commercial market, reaching approximately 600,000 individuals. And progress in the self-funded market has seen the addition of ABA coverage in several NC-based corporations, including Bank of America and other noteworthy companies that will be announcing ABA coverage soon for 2016.

Prior to passage, Senate Bill 676 had remained in the House Rules Committee for several months while parties discussed the mental health parity implications of the bill. In the end, S.676 still removes autism from the definition of “mental illness” in the state’s mental health parity law, but it also specifically applies the standards of the federal mental health parity law to the coverage.

Earlier this year, North Carolina enacted House Bill 556, ABLE legislation that allows families to set up tax-exempt 529A savings accounts for disability-related expenses. 

A Student Reflects

In The Politics of Autism, I discuss the growing number of college students on the spectrum.

From an article in The Claremont Independent by a student who has a diagnosis of Asperger's:

When I was less than a year old, doctors told my parents that something was different about my interactions with the world. At age three, they suggested that I had Asperger’s Syndrome. Seventeen years later, my family dropped the news on me. While I’m glad my family waited until I was ready to hear the news, the revelation hit me like a freight train halfway through my second semester of college. I always knew I wasn’t comfortable in my own skin. I always knew I had a hard time connecting and relating to people, especially in large groups. Watching Abed Nadir, a character on Community who displays Aspergers’ characteristics, struck a nerve for me that I didn’t want struck. Looking back, I shouldn’t have been especially surprised. I have friends who also fell on the Autism spectrum, and in the back of my mind I knew we had more in common than I wanted to admit. Today, I both accept and embrace my personality, quirks, social awkwardness, naivety, niche interests, and all. While this was not an easy journey, I found that the student body at the Claremont Colleges is incredibly accepting, though not fully informed, of struggles that go hand in hand with non-neurotypical persons.

... 

[The] way to encourage inclusivity in the Claremont community is not to tell me that my Asperger’s is a death sentence. The way to include non-neurotypical people in the Claremont community is to engage with us: make us feel welcome. Invite us to your parties, wave to us across North Quad, and perhaps most importantly, understand that we want to be accepted and respected, just like you accept and respect all your other friends. I am proud of my Asperger’s – quirks and all. Students shouldn’t feel guilty about being neurotypical anymore than they should about being, straight, white, or male. To this end, treating peers in the mental health community with dignity and respect is the best way to foster an inclusive environment on campus.

IDEA Litigation Patterns

In The Politics of Autism, I write about litigation under the Individuals with Disabilities Education Act:

School districts prevail in most due-process hearings.[i] Parents who lose can appeal in federal court. [ii] Parents of autistic students did well in court before 2004, but since then, school districts have won most of the cases.[iii] A parent will face mounting pressure to settle before makes a ruling, because the legal process can drag on and on, and time is on the school district’s side. A child is in any one school for only a few years, so services delayed are services denied.[iv] And in the long run, there is no long run. IDEA only covers people until their 22d birthday: after that, public schools may cut them off. (They do have more limited protections under other laws and programs, which the next chapters will discuss.)

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[i] One study of California cases found that parents of autistic children had a better rate of success than parents of children with special learning disabilities “or mental retardation, but they still prevailed less often than the school districts. Gil Eyal and Allison Mann, Who Prevails?: Comparison of Special Education Due Process Hearings for Autistic, MR and SLD Children,” January 2010. Online: http://works.bepress.com/cgi/viewcontent.cgi?article=1002&context=gil_eyal.
[ii] Terry Jean Seligmann, “Rowley Comes Home to Roost: Judicial Review of Autism Special Education Disputes,” UC Davis Journal of Juvenile Law and Policy 9 (Summer 2005): 217-288.
[iii] Doris Adams Hill and Regina Kearley, “Autism Litigation: Outcomes for 2010, Trends in Decision Making and Changes in Diagnostic Criteria,” Research in Developmental Disabilities 34 (May 2013): 1843–1848. Online: http://www.sciencedirect.com/science/article/pii/S0891422213000760.
[iv] Colker, Disabled Education, 46.

Michelle Diament reports at Disability Scoop:

Special education disputes are far more likely to be litigated in some states than others, with a new report finding that just 10 states account for nearly two thirds of all court decisions.

Between 1979 and 2013, there were over 5,000 court decisions nationwide related to legal questions under the Individuals with Disabilities Education Act, according to an analysis published recently in the Journal of Special Education Leadership.

Nearly 600 of those decisions came out of New York, while Pennsylvania and Washington, D.C. each accounted for about 500 decisions.

Rounding out the top 10 states on the list are California, Illinois, New Jersey, Hawaii, Texas, Connecticut and Virginia, the study found.

Shootings and Distinctions

In The Politics of Autism, I write:

There is no evidence linking autism to planned violence, but in recent years, mass shootings by young men have led commentators in the mainstream media and on the Internet to suggest such a connection. After the 2007 Virginia Tech massacre, for instance, news reports said that the shooter was on the spectrum. The speculation made little sense to anyone who understood autism. Whereas autistic people have language delays and deficits, the killer had learned English as a second language — and learned it well enough to major in the subject in college. Later on, it turned out that he had an entirely different problem, a social anxiety disorder. Adam Lanza, who committed the Sandy Hook massacre in 2012, may have had an Asperger’s diagnosis, but his father emphasized that his behavior stemmed from the psychiatric illnesses that he also had.Nevertheless, the media speculated about Lanza’s place on the spectrum, which worried autism parents. One mother of an autistic child wrote: “This is the first time I'm truly afraid for him. Afraid of what may happen to my son with autism at the hands of a stranger; a stranger who has chosen to buy into the media-fueled misinformation that individuals diagnosed with an Autism Spectrum Disorder are dangerous and capable of horrendous acts of terror and violence.”

At The New York Times, Andrew Solomon draws distinctions that dispel the myth of the autistic shooter:

The wish to hurt others is tied not to autism but to psychopathy, which manifests in a deficiency or absence of empathy and remorse. Some autistic people may not recognize why they cause distress; psychopaths don’t carethat they cause distress. Autistic people may see the world from a singular, personal perspective; psychopaths are often cunning manipulators who act according to perceived self-interest without regard for the destruction they cause. Psychopathy seems to have coincided with autism in the cases of Mr. Harper-Mercer at Umpqua and Adam Lanza at Newtown, Conn. Psychopathy apparently coincided with depression and grandiosity in the cases of Eric Harris and Dylan Klebold at Columbine and Elliot O. Rodger at Isla Vista, Calif. Psychopathy almost certainly coincided with schizophrenia in the cases of James Holmes in Aurora, Colo., and Jared Loughner in Tucson.

Social Skills Training Program at UCLA

In The Politics of Autism,  I write about the lack of research on (and resources for) autistic adults.

At The Los Angeles Times, Amina Khan reports on a program at UCLA, quoting its director, Professor Elizabeth Laugeson:

Autism is often thought of as a childhood disease, Laugeson says, and very little research has focused on adults. Resources for young people on the spectrum plummet after they turn 18.

"It's almost as if we forgot that these kids grow up," she says.

People with autism often cannot easily read the emotions of others. Tone of voice, facial expression and other verbal and nonverbal cues can be as inaccessible as a foreign language, turning the most ordinary social interactions into minefields.

This, coupled with other symptoms of autism, can have serious ramifications for young adults. Eighty-one percent of autistic people between high school and their early 20s have never lived independently; 68% have never lived apart from their parents; 64% have had no education after high school; and 42% aren't employed, according to the 2015 National Autism Indicators Report published by Drexel University's A.J. Drexel Autism Institute.

Those numbers are steep, and they don't have to be. Laugeson and other researchers say many of the right social skills — for getting a job and keeping it, for making and maintaining friendships, and for dating — can be taught, just as the underlying rules of a foreign language can be broken down and explained.

That's the goal of the Program for the Education and Enrichment of Relational Skills, or PEERS.

"A lot of people think that social skills in general are innate, that you're hard-wired in some way and that you either are born with social skills or you're not," Laugeson says. "But I think what PEERS has established is that this is actually a set of skills that can be learned, that you don't have to be born with them."

Autism and Canadian Politics

The Politics of Autism is primarily about the United States, but autism is a concern in every country.

The CBC reports that autism is an issue in the Canadian elections.

"This is a really important issue that touches many, many families across the country with a prevalence rate of one in 68," [Actually a US number: no separate estimates are available for Canada.] Shannon Hill, president of Parent Advocates for Autism Treatment in Saskatchewan, told CBC News Saturday. "We know there're so many families that are affected by this and it would be good to know our candidates opinions on this going into the election."

Hill said she was hoping candidates in the election campaign would respond to the group's questions about autism and, while some politicians provided detailed answers, not everyone did.

...
The group noted that the Conservative government earmarked $2 million in the 2015 budget for a new Autism Spectrum Disorder Working Group to develop a plan for a Canadian Autism Partnership.

...

Her group is also lobbying the provincial government for more support.

"Our group is lobbying the Saskatchewan government to provide us with individualized funding," she said, noting that B.C. has a system that provides direct support to families.

More on Autism, Crime, and the Oregon Shooting

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities.[i] The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.[ii]

[i] Erika Harrell, “Crime Against Persons with Disabilities, 2009–2012 - Statistical Tables,” U.S. Bureau of Justice Statistics, February 2014. Online: http://www.bjs.gov/content/pub/pdf/capd0912st.pdf.[ii] S. M. Brown-Lavoie, M. A. Viecili, J. A. Weiss, “Sexual Knowledge and Victimization in Adults with Autism Spectrum Disorders,” Journal of Autism and Developmental Disorders 44 (September 2014): 2185-2196. Online: http://link.springer.com/article/10.1007/s10803-014-2093-y.

At The Austin American-Statesman, Suzanne Potts and Karen Ranus write:

In the midst of this tragedy, many are speculating that the shooter was on the autism spectrum or had a mental health disorder. While these reports are unconfirmed, it is easy for our community conversations to simplify these complex situations by pointing to these disorders as the cause.

There is absolutely no credible evidence that suggests a link between autism and planned violence. In fact, the reality is quite the opposite. While more than 3.5 million Americans live with an autism spectrum disorder (ASD), studies show that people with autism are four times more likely to become victims than perpetrators of crime.
...
As a community, it is much easier to have a knee-jerk reaction. We want immediate closure and comfort and believe that having a name for the perpetrator’s state of mind will somehow explain motivation or prove a theory.

But let’s be clear: autism or mental illness is not responsible for the actions of a lone shooter. It never has been, and it never will be. Why? Because whether you define ASD and mental illness as neurodevelopmental issues, genetic dispositions or erratic behavior, the truth is that we are all affected by our community, our experiences, environment, trauma, genetics and the time and place in which we live.

We must acknowledge the very complex nature of how these factors are woven together in every individual’s life. To do otherwise is willfully ignoring the truth about our neurodiverse world.

Suzanne Potts is the executive director of the Autism Society of Central Texas. For more information on resources, visit the website at www.austinautismsociety.org.Karen Ranus is the executive director of NAMI Austin. For more information on resources, visit the website at www.namiaustin.org.