A View from an Autistic Person

Sarah Kurchak writes at The Guardian:

When I was finally diagnosed with autism spectrum disorder six years ago, I wouldn’t shut up about it. In part, this was because I, like many autistics, tend to perseverate about the things that intensely fascinate me and, at that moment, there was nothing more fascinating to me than discovering that there was an explanation for all of my sensory sensitivities, social issues, repetitive behaviors and obsessive interests. I also believed in the importance of autism awareness.

But once I started participating in awareness campaigns I found the same overly simplistic and fear-mongering message over and over again: autism is a “crisis”.According to the highly influential charity Autism Speaks (which doesn’t have a single autistic person on its board), autistic people are “missing” – we leave our family members “depleted. Mentally. Physically. And especially emotionally.” Defining our existences solely as a tragedy for non-autistic people is hurtful on a personal level. No one deserves to be told that they are nothing but a burden to the people who love them and everyone has the right to feel like their lives have value.

But it also has troubling implications for public policy.

If autism is only presented as an unequivocally terrible curse that must be “cured” and eliminated, then charities that are primarily focused on finding a cure – like Autism Speaks – will continue to receive the bulk of ASD-related funding and volunteer hours. Even if a cure is possible or preferable (both of which are arguable) these wild stabs at hunting down genetic bogeymen in the hopes of eliminating them in the future do nothing to improve the lives of the autistic people and their caregivers who are struggling with a scarcity of both resources and understanding right now.

Feds Curb Special Ed Cuts

Michelle Diament reports at Disability Scoop:

With a new rule, federal education officials are telling schools not to skimp on funding for special education.

Under the Individuals with Disabilities Education Act, schools are required to spend at least as much on special education as they did the prior year. Those that fail to maintain or increase their funding for special education from one year to the next without receiving an exemption from the U.S. Department of Education can miss out on federal funding.

Now the Education Department is clarifying that in cases where school districts run afoul of the spending requirement known as “maintenance of effort” for any given year, they are still expected to achieve the original, higher funding level for future years.

“The department continues to believe that when (a school district) fails to maintain its required level of expenditures, the level of expenditures required in future fiscal years is the amount that would have been required in the absence of that failure, and not the (school district’s) actual expenditures in the fiscal year in which it failed to meet the compliance standard,” the agency said in a rule published Tuesday in the Federal Register.

Age of Diagnosis in Girls

A release from the Kennedy Krieger Institute:

Girls are diagnosed with autism spectrum disorder (ASD) later than boys, possibly because females exhibit less severe symptoms, according to a study to be presented Tuesday, April 28 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

To study gender differences in age at diagnosis and compare symptom severity between boys and girls, researchers at the Kennedy Krieger Institute in Baltimore, Md., analyzed data from the Institute’s Interactive Autism Network. This online registry includes almost 50,000 individuals and family members affected by ASD who work with researchers to better understand the nature of the disorder. In the registry, age of first diagnosis was available for 9,932 children, and 5,103 had completed the Social Responsiveness Scale, which identifies the presence and severity of social impairment.

In the data review, researchers found girls were diagnosed with pervasive developmental disorder, an ASD impacting the development of many basic skills, at a mean age of 4 years compared to 3.8 years for boys. This also was the case with girls diagnosed with Asperger’s syndrome; girls were diagnosed at a mean age of 7.6 years for the condition, which affects language and behavioral development, vs. 7.1 years for boys.

In addition, they found girls struggled more with social cognition — the ability to interpret social cues. Meanwhile, boys had more severe mannerisms such as repetitive behaviors like hand flapping, as well as highly restricted interests. Older boys, ages 10-15, also had more difficulties with the ability to recognize social cues and use language in social situations.

“This and other studies suggest that girls with ASD, as well as perhaps older women with this disorder, differ from males in key symptoms and behaviors, particularly around social interactions,” said Paul Lipkin, MD, FAAP, study author and director of the Interactive Autism Network at Kennedy Krieger. “We must determine if the less recognizable symptoms in girls are leading not only to delayed diagnosis, but also under-identification of the condition.”

Researchers also saw an increase in the proportion of girls who were diagnosed with ASD in 2010-2013 when compared to 2006-2009. Dr. Lipkin, a neurodevelopmental pediatrician who also serves as director of medical informatics at Kennedy Krieger, believes this increase may be due to growing public awareness and that screening methods and treatment strategies may need to be modified to meet the needs of each gender.

Dr. Lipkin will present “Gender Differences in Diagnosis and Social Characteristics of Children with Autism (ASD) from a U.S. Registry” from 10-10:15 a.m. PT on Tuesday, April 28. To view the study abstract, go to http://www.abstracts2view.com/pas/view.php?nu=PAS15L1_4545.2

Losing the Diagnosis, but Not the Problems

A release from the American Academy of Pediatrics:

About one in 14 toddlers diagnosed with autism spectrum disorder (ASD) no longer met the diagnostic criteria in elementary school, but most continued to have emotional/behavior symptoms and required special education supports, according to a study to be presented Sunday, April 26 at the Pediatric Academic Societies (PAS) annual meeting in San Diego.

Previous studies have shown that ASD symptoms resolve in some children over time. It is not clear, however, if these children continue to have cognitive, behavioral or learning deficits.

Researchers, led by developmental pediatrician Lisa Shulman, MD, reviewed data on 38 children diagnosed with ASD in 2003-2013 whose symptoms had resolved when they were re-evaluated about four years later. The children were among 569 children living in the Bronx who had been diagnosed with ASD by a multidisciplinary team at a university-affiliated early intervention program.

The children came from racially, ethnically and socioeconomically diverse backgrounds, a population generally underrepresented in autism studies. Forty-four percent were Hispanic, 36 percent were Caucasian, 10 percent were African-American and 46 percent were on Medicaid.

Clinicians who made the original diagnosis also provided interventions and monitored response to treatment. Over time, they noted that ASD symptoms in some children resolved, but most continued to have other learning and emotional/behavioral symptoms needing attention.

"Autism generally has been considered a lifelong condition, but 7 percent of children in this study who received an early diagnosis experienced a resolution of autistic symptoms over time," said Dr. Shulman, director of Infant and Toddler Services and the Rehabilitation, Evaluation and Learning for Autistic Infants and Toddlers program at the Children's Evaluation and Rehabilitation Center/Rose F. Kennedy Center at Albert Einstein College of Medicine/Children's Hospital at Montefiore.

"The majority of the children at original diagnosis displayed intellectual disability but at the point of resolution of autistic symptomatology displayed normal cognition," Dr. Shulman added.

Although the social impairment of autism resolved and cognitive functioning (IQ) improved, researchers found that 92 percent of the children had residual learning and/or emotional/behavioral impairment. Only three of the 38 children had no diagnosis.
Language/learning disability was found in 68 percent, and nearly half had externalizing problems such as attention-deficit/hyperactivity disorder or disruptive behaviors. In addition, 24 percent had internalizing problems such anxiety, obsessive-compulsive disorder or selective mutism. Finally, nearly three-quarters of the children continued to require academic supports, such as a small class setting or resource room.

"When an early ASD diagnosis resolves, there are often other learning and emotional/behavioral diagnoses that remain," said Dr. Shulman, associate professor of clinical pediatrics at Albert Einstein College of Medicine and attending physician, Children's Hospital at Montefiore. "Understanding the full range of possible positive outcomes in this scenario is important information for parents, clinicians and the educational system."

Dr. Shulman will present "When an Early Diagnosis of Autism Spectrum Disorder Resolves, What Remains?" from 3:45-4 p.m. PT Sunday, April 26. To view the study abstract, go to http://www.abstracts2view.com/pas/view.php?nu=PAS15L1_2750.2

​This study was supported by a grant from the Children's Evaluation and Rehabilitation Center/ Rose F. Kennedy Intellectual and Developmental Disabilities Research Center.
- See more at: https://www.aap.org/en-us/about-the-aap/aap-press-room/pages/Some-children-lose-autism-diagnosis-but-still-struggle.aspx#sthash.bi4XtmYK.dpuf

Wakefield Comes to California

Erin Allday reports at The San Francisco Chronicle:

Andrew Wakefield, the British scientist and former physician whose discredited research linking autism and immunizations helped launch a worldwide anti-vaccination movement, encouraged Californians Friday to fight back against a state Senate bill that would make childhood vaccinations mandatory.

Speaking at Life Chiropractic College West in Hayward, Wakefield told hundreds of students packed into two or three classrooms that they needed to be the “pitchforks and torches” in Sacramento demanding that state legislators reject SB277.

“Your rights are being ripped from you,” Wakefield said. “Parents are no longer going to be in charge of their own children. This is the fight that has to be taken to Sacramento.”
...

“Andrew Wakefield is a discredited physician from another country who has come here, and now he’s meddling in our politics and our policies and jeopardizing the health of our children,” said Leah Russin, a Palo Alto mother who founded Vaccinate California, which promotes efforts to make childhood immunizations mandatory.

Russin said she knows of an infant, too young to be immunized, who got measles during this year’s outbreak and may have long-term vision problems now. “That’s crazy,” she said. “And that is Andrew Wakefield’s fault.”
...
Dr. Art Reingold, a UC Berkeley epidemiologist who helped create national childhood immunization policy, said Wakefield has been a “hero of sorts” to the anti-vaccine community for so long that it’s going to be difficult to break that bond.

“At this point he goes around being a hero to those who are opposed to vaccination,” Reingold said. “Once something is stuck in people’s minds or makes an impression, the subsequent scientific work may not give them the proof they need. You can have a lingering effect that continues to really cause public health harm.”

Parental Concerns

A release from the University of Alberta:

As co-director of the University of Alberta’s Autism Research Centre, Lonnie Zwaigenbaum has devoted much of his career to understanding how to identify autism as early as possible. But despite his years of experience, Zwaigenbaum says many physicians like him would do well to seek other expert advice when working with children not yet diagnosed—that of the parents of these young patients.

“Parents are the experts when it comes to their kids and their observations are really valuable,” says Zwaigenbaum. “In some respects, parents are picking up on differences at six and nine months of age that we have a much harder time seeing in the clinic.”

Zwaigenbaum, a professor in the Faculty of Medicine & Dentistry’s Department of Pediatrics, along with Lori Sacrey, a postdoctoral fellow in the Department of Pediatrics, are the authors of a new study published in the March edition of the Journal of the American Academy of Child & Adolescent Psychiatry. The study found parents of children at a high risk for autism spectrum disorder (ASD) not only reported more early concerns than other parents, but also that those concerns can be predictive of autism spectrum disorder.

The researchers examined the reported concerns of parents from about 300 families for children aged six months to three years old over a 12-year period. The sample included the concerns of parents of children without any heightened risk of ASD, as well as the parents of children at high risk (who had an older sibling already diagnosed with ASD). At three years of age all of the children underwent a clinical assessment to determine if they had autism or not. Researchers then looked back at the parent concerns to see if the groups differed on the types of concerns parents had, as well as the number of concerns they had.

“We found that parents whose children ended up being diagnosed at three years of age did report more concerns,” says Sacrey. “Interestingly, they reported sensory and motor concerns starting at the age of six months. And then they increasingly reported more language and social concerns at about 12-15 months of age.”

“It really highlights the importance of talking to parents and taking their concerns seriously,” adds Zwaigenbaum.

The researchers believe that by acting on parental concerns early, health professionals can provide better care for children at risk of autism spectrum disorder.

“Where interventions are concerned, the earlier you can start with the patients, the better the prognosis is,” explains Sacrey. “If you can identify a child at a heightened risk earlier, before their first birthday, then you can start working with them to address early developmental difficulties, which can ultimately enhance their skill development and improve their outcomes.

“Parents play a critical role in implementing these interventions, building learning opportunities into everyday caregiving and play activities. ”

Research funding was provided by the Canadian Institutes of Health Research, Alberta Innovates: Health Solutions, Stollery Children’s Hospital Foundation, the Women and Children’s Health Research Institute and NeuroDevNet.

Education Department Urges Avoidance of Due Process

In The Politics of Autism (forthcoming later this year from Rowman and Littlefield), I devote a chapter to the education politics of autism.  A major topic of this chapter is due process.

From a "Dear Colleague" letter by Acting Assistant Secretary of Education Sue Swenson and Melody Musgrove, Director of the department's Office of Special Education Programs:

Public agencies that seek to force parents who have already exercised their right to file a State complaint into a potentially more adversarial due process hearing harm the “cooperative process” that should be the goal of all stakeholders. Moreover, diverting resources into adversarial processes between parents and public agencies is contrary to Congressional intent in the 2004 amendments to IDEA’s dispute resolution procedures to give parents and schools expanded opportunities to resolve their disagreements in positive and constructive ways. 20 U.S.C. 1400(c)(8). We strongly encourage public agencies to respect parents’ reasonable choice to use the State complaint process rather than a due process complaint hearing. Likewise, before pursuing a due process hearing, a public agency should attempt to engage parents in mediation or other informal dispute resolution procedures, as appropriate.

CA Vaccine Bill Advances

At The San Jose Mercury News, Tracy Seipel and Jessica Calefati report:

Legislation aimed at reversing the state's liberal vaccine exemption law took a major step forward Wednesday in the state Senate, only a week after support for the bill seemed to be on shaky ground.

The dramatic 7-2 vote by the Senate Education Committee surprised some Capitol observers, as one East Bay Democrat, Loni Hancock of Berkeley, switched sides and voted yes.

If the bill becomes law, California would become the third state after Mississippi and West Virginia to slam the door on any exemptions to vaccinations except those issued for medical reasons.

Until Wednesday, the pro-vaccine movement had appeared to be losing momentum after two other blue West Coast states, Oregon and Washington, shot down efforts to tighten vaccine laws in March.

Political experts say California's effort is apparently more successful because the recent measles outbreak began in the Golden State -- at Disneyland -- in December. While the outbreak was declared over last week, state public health officials said it wouldn't have happened if more people had been vaccinated.

"There's nothing like the largest measles outbreak in the state to focus people's attention on a contagious health issue," said Dan Schnur, director of USC's Jesse M. Unruh Institute of Politics

National Autism Indicators Report

In The Politics of Autism (forthcoming later in 2015 from Rowman and Littlefield), I discuss the need for better information about autistic adolescents and adults.

A press release from Drexel Univerisity:

Autism does not end when children reach adulthood—yet most public awareness, public policy and research about autism focus on the needs of children. Families, service providers, community leaders and policymakers still know too little about the experiences and outcomes of young people on the autism spectrum as they enter their adult lives. What are their experiences with transition planning, living arrangements, social participation, employment, postsecondary education, health and mental health, safety and other domains?

Answers to these and other critical questions, addressing life outcomes beyond clinical interventions, are the focus of a report issued today from Drexel University’s A.J. Drexel Autism Institute, from its Life Course Outcomes Research Program. The “National Autism Indicators Report: Transition into Young Adulthood” is a comprehensive report (available free online) that presents new findings about a wide range of experiences and outcomes of youth on the autism spectrum between high school and their early 20s, including new safety and risk indicators for young adults with autism. The report describes the indicators now available and serves as a call to action to fill the remaining large gaps in knowledge.

“When it comes to understanding how well our nation is helping youth affected by autism, our situation is like driving a car through the fog with no dashboard,” said Paul Shattuck, PhD, leader of the Life Course Outcomes Research Program and an associate professor at Drexel. “We know we’re moving, but we do not have many indicators to tell us how fast we are going, whether we’re getting close to our goals, or what kind of mileage we are getting from the resources fueling our trip.”

      

One More Time: MMR Does Not Cause Autism

Healthline reports:

The measles-mumps-rubella (MMR) vaccine does not increase the risk of autism even for children in high-risk families.

That’s the conclusion of a large-scale study published today in the Journal of the American Medical Association.

Researchers studied the records of 95,727 children with older siblings who were enrolled in health plans from 2001 to 2012. Of those, 1,929 children had an older sibling who’d been diagnosed with autism spectrum disorder (ASD).

The MMR vaccination rate for children without siblings with autism was 92 percent by the age of 5. The rate was 86 percent for children who had an autistic sibling. This may reflect the mistaken belief held by some parents that the MMR vaccine increases autism risk in vulnerable kids. In all, 994 children in the study were diagnosed at some point with ASD. Of those, 134 had a sibling with the disorder. The other 860 did not.

Researchers said there was no difference in ASD diagnoses among the children with autistic siblings in the vaccinated and unvaccinated groups. The same was true for children with no autism cases in their immediate family.

Addressing Vaccine Hesitancy

In The Politics of Autism (forthcoming later this year from Rowman and Littlefield), I address the impact of the anti-vax movement on vaccine hesitancy and refusal.  At Vaccine, Eve Dubéa, Dominique Gagnona, and Noni E. MacDonald have an article titled "Strategies Intended to Address Vaccine Hesitancy: Review of Published Reviews. "  An excerpt:

From the reviews, there is no strong evidence on which to recommend any specific intervention to address vaccine hesitancy/refusal. The reviewed studies included interventions with diverse content and approaches that were implemented in different settings and targeted various populations. The number of interventions similar enough to be grouped was often low and insufficient to demonstrate effectiveness using recognised validation criteria [28]. In addition, many of the reviewed studies were conducted in the United States and few were from low- and middle-income countries, further limiting the generalisability of the findings. The studies at low risk of bias were mostly single-component interventions (often educational interventions), which are less challenging to evaluate than multi-component interventions or interventions aiming to change determinants that are difficult to measure (such as social norms). Finally, few studies included in the reviews used vaccine uptake or on-time vaccination as the outcome and even fewer studies were directly targeting vaccine-hesitant individuals. While acknowledging these caveats, the findings indicate that reminders and recall for patients and health-care providers are effective tools to improve vaccine uptake among various groups and in different settings [12], [23] and [26]. However, there is limited evidence on the effectiveness of reminders and recalls for vaccine-hesitant individuals [29] and [30].

Vaccine Politics in California

At The San Francisco Chronicle, Melody Gutierrez reports:

A California senator who co-wrote a bill to prevent parents from opting out of school-required vaccines said one of his Capitol office workers received a death threat Friday.
Sen. Ben Allen, D-Santa Monica, said that a caller directed the death threat at a legislative staffer and that the incident was reported to the state Senate’s sergeant-at-arms.

The co-author of the bill, Sen. Richard Pan, D-Sacramento, has been provided extra security in recent weeks after his office began receiving threatening phone calls, e-mails and social media comments from opponents of the vaccine legislation.

One Facebook post portrayed Pan as a Nazi and said he should be hanged by a noose. The messages were forwarded to Senate sergeants.

...
“It’s crazy how vitriolic the conversation can get,” Allen said Friday. “It’s hard on our staff. I don’t like putting my staff through this. We are trying to do what’s right.”

Tracy Seipel writes at The San Jose Mercury News:

California's Constitution spells out the right to a free public education, and lawmakers have fortified that guarantee over the years by safeguarding students against discrimination and inequality in the classroom.

But now a debate over that protected access to an education has surfaced in the most contentious legislative battle in Sacramento this year: Does one student's right to an education trump another student's right to stay healthy?

That question looms over Senate Bill 277, a controversial proposal that would tighten the requirements that all children be vaccinated to attend a California school.

A vocal group of parents fighting the bill insists the vaccination mandate would deprive their kids of their constitutional right to an education, and that argument has suddenly become a threat to the legislation. But legal experts -- including a lawyer who participated in a landmark education rights case -- say both state and federal law allow government to protect the health of the community, first and foremost.

"Schools have to be safe, and the state has the power to regulate the schools for safety," said Dorit Reiss, a professor and vaccine law expert at UC Hastings College of the Law in San Francisco.

More on RFK, Jr. and the "Holocaust" Reference

At CNN, David M. Perry writes about RFK Jr.'s recent apology for likening autism to the Holocaust:

Robert Kennedy Jr. has apologized for the wrong things.

First and foremost, vaccines do not cause autism. The two have nothing to do with each other.

Second, he seems to think people with autism are "gone," their lives "destroyed" and their families "shattered." Autism is not a death sentence. People with autism are not missing or destroyed. They are everywhere, trying to live their lives in a society that too often demeans them as subhuman, missing or worthless.

Kennedy's rhetoric is a problem, even beyond the fraudulent basis for his claims about vaccines. People who believe autism is an environmental disease try to cure kids with quack treatments like giving them bleach-based enemas. Others, believing autism functions as a death sentence, even kill their children.

I am worried about the effect of having such a powerful, high-profile member of our political class endorse this demeaning depiction of life with autism.

I reached out to a number of autistic activists for comment. Ari Ne'eman, president of the Autistic Self-Advocacy Network, wrote, "Robert Kennedy Jr, who has engaged with autism only to spread lies, misinformation and dehumanizing rhetoric, has never meaningfully engaged in efforts to improve the lives of autistic Americans. While his father, uncle and many others in the Kennedy-Shriver family championed the rights of people with disabilities, he has instead cast his lot with those who use pseudo-science to question our humanity."

These are harsh words, but try to see the situation through Ne'eman's eyes. Not only is Kennedy perpetuating a discredited theory, but he's also suggesting that it's better to let your children get preventable and sometimes fatal diseases than risk becoming autistic

Federal Legislation on Restraint and Seclusion

An April 15 news release from Senator Chris Murphy (D-CT):

Today, the U.S. Senate Health, Education, Labor, and Pensions Committee passed, on a bipartisan basis, an amendment introduced by U.S. Senator Chris Murphy (D-Conn.) to the reauthorization of the Elementary and Secondary Education Act. Murphy’s amendment, which would require states to establish policies to prevent the unnecessary use of seclusion and restraint for disciplinary purposes in schools, will be included in the revised 2015 version of the Elementary and Secondary Education Act.

“The facts tell us that locking kids up in padded rooms and limiting their movement with tape or rope hurts our children instead of helping them,” said Murphy. “These horrific practices cause physical and psychological trauma not only to these kids, but also to their peers, and there is absolutely no excuse for this kind of treatment of children. Instead of using these ineffective methods to change a child’s behavior, we should be developing support services for schools and educators that care for kids in a compassionate way, and I’m relieved that my colleagues agree. This is a big step forward towards improvement and accountability in our schools, and will ensure that all students receive the positive support they need to reach their full potential.”

Providers, Diagnosis, and Reassuring/Passive Responses

As I point out in The Politics of Autism (forthcoming later in 2015 from Rowman and Litlefield), pediatricians have long been slow to react to parental suspicions of autism.  (Talk to autism parents, and you will hear of false reassurances about "late talkers," among other things).  At The Journal of Pediatrics, Katharine Elizabeth Zuckerman, Olivia Jasmine Lindly, and Brianna Kathleen Sinche have a study titled "Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis."  It confirms that the problem persists. From the article:

I n this nationally representative sample of children with ASD, we found that despite early parental concerns, ASD diagnosis was delayed by nearly 3 years after the first parental conversation with a provider. In addition, despite evidence suggesting that parental concerns strongly predict child developmental risk both overall and for ASD in particular, more than one-half of children with either ASD or ID/DD had passive/reassuring provider responses to parental concerns. Finally, among children with ASD, diagnostic delays were longer when the child’s provider had a reassuring/passive response to parental early developmental concerns.

Although the literature suggests that early signs of ASD may be difficult for parents to detect, this analysis shows that compared with parents of children with ID/DD, parents of children with ASD reported concerns earlier and had earlier provider conversations about these concerns, but were more likely than to receive reassuring/passive provider responses to those concerns. This finding suggests that the particular presenting characteristics of ASD may predispose affected children to longer diagnostic delays. Because the longest delay between initial parental concerns and ASD diagnosis occurred after the first provider conversation about parental concerns, the health care system in general and health care providers specifically may play substantial roles in these delays.

Providers may have different reasons for not acting on parents’ developmental concerns; for example, they may not elicit these concerns in the first place, or may underestimate the importance of concerns that parents raise. Providers also may share parents’ concerns but lack screening, referral, or diagnostic resources overall, or may experience significant delays in attempting to access such resources. Although children with ASD were younger than those with ID/DD at the time of initial parental concerns, our analyses controlled for age, and so differential provider responses cannot be solely explained by age differences. However, children with ASD and those with ID/DD may have differed in content of parental concerns or in provider observations; for instance, some ID/DD-related conditions are apparent at or before birth, allowing providers and parents to enter into early conversations with more information.

Threats

As I discuss in The Politics of Autism (forthcoming later in 2015 from Rowman and Littlefield), adherents of the anti-vaccine movement have sometimes made threats against vaccine proponents. Alexei Koseff reports at The Sacramento Bee:

The impassioned debate surrounding California legislation to remove the personal-belief exemption for vaccinations has bubbled over into threats against lawmakers and heightened security measures for at least one state senator.

Sen. Richard Pan, a Sacramento Democrat who introduced SB 277, said the in-house law enforcement unit has provided him with extra security in recent weeks, after his office began receiving alarming phone calls, e-mails and Facebook comments from opponents of the bill.

“They’re basically trying to silence us,” Pan said. “It’s disturbing.”

The messages range from images depicting Pan as a Nazi to posts on his Facebook page calling for him to be “eradicated” or hung by a noose. Pan said his staff has forwarded all of the threats to the Senate Sergeant-at-Arms office, as is procedure, which has assessed them and responded as needed. Additional guards attended a community forum last month, for example, after bill opponents discussed throwing things at Pan.

Read more here: http://www.sacbee.com/news/politics-government/capitol-alert/article18533915.html#storylink=cpy

NBC Covers the Cliff

In the Politics of Autism (forthcoming from Rowman and Littlefield later in 2015), I discuss the "cliff" that autistic adults reach on their 22d birthday.  At NBC Dateline, Kate Snow reports:

Federal law guarantees an education for children with developmental disabilities like autism until the age of 21. But after turning 21 (each state determines the exact date), those young adults lose the specialized help and structure they've had for most of their lives. And there is no equivalent state or federal support required to take over.

Parents of children with autism compare it to falling off a cliff.

Learn more: Autism, the Hidden Epidemic

"Happy graduation," Lenore Kubiscko said with sarcasm in her voice. "Everything that we've worked for we are taking away and you will leap off a cliff into nothingness. Right now the picture is nothingness, it's black. Absolutely black."

Mary Clancy was feeling the same way. Her son Eric was about to turn 21 too and graduate from a specialized school for children with disabilities called the Rebecca School — a place he loved and thought of as his family away from home. After a legal battle, the Clancy's won the right to have their local school district reimburse them for tuition, which averaged about $100,000 per year. But that would stop at graduation.

"Without purposeful things to do, he will fall back into the autism world. Into his own inner world," Mary said. "He's so much happier out of it. But that's where his brain takes him. It's hard."

For three years, Dateline followed these two families as their sons graduated from the education system and moved into uncertain terrain.

We watched as these mothers navigated bureaucracies, made phone calls for hours on end and got on waiting lists that were filled with thousands of names already.

As adults, their sons are eligible for Social Security and they can apply for services funded by Medicaid. But they were warned by parents and other advocates that many of the programs offered would not be tailored to autism. And even for programs that they didn't think were ideal, there are waiting lists. Every state decides how to spend its Medicaid dollars and so there are great variations from state to state. In Florida for example, there are waiting lists that contain as many as 20,000 people.

Autism prevalence rates have more than doubled over the last decade. And according to Linda Walder, Executive Director of the Daniel Jordan Fiddle Foundation, an advocacy group for adults with autism, an estimated half a million young people with autism will age out in the next ten years.

"It's a tsunami of children who are aging to adult life," Walder said. "And we really have no safety net for them, or very few safety nets."

Walder emphasized that people don't stop having autism when they turn 21. "That is one of the general misconceptions about autism — is that it only affects children," she said. "You do not outgrow autism."

California Vaccine Developments

The Guardian reports:

Robert Kennedy Jr apologized on Monday for describing the growing number of children identified with autism, which he links to the use of vaccines, as “a Holocaust”.
Kennedy, the nephew of President John F Kennedy and son of his murdered brother Robert Kennedy, is campaigning against a bill introduced in California that seeks to stop parents opting out of having their children inoculated against diseases such as measles and whooping cough.

When he addressed the audience at a screening of a documentary on the subject, Trace Amounts, in Sacramento last week, the high-profile vaccine skeptic made remarks that set off a firestorm of protest.

Kennedy said that pharmaceutical companies and the government could not be trusted over the ingredients in vaccines and added of children that he claims get sick as a result of having their jabs: “They get the shot, that night they have a fever of 103 [degrees], they go to sleep, and three months later their brain is gone. This is a Holocaust, what this is doing to our country.”

On Monday Kennedy expressed regret for his choice of words.

“I want to apologize to all whom I offended by my use of the word to describe the autism epidemic,” Kennedy said in a statement. “I employed the term during an impromptu speech as I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families.”

Tracy Seipel reports at The Contra Costa Times:

As he seeks to push his controversial vaccine bill through another committee vote Wednesday, Sen. Richard Pan, D-Sacramento, is expected to confront a legion of even more determined opponents than he witnessed last week when Senate Bill 277 cleared its first hurdle.

But this time, adversaries of the bill -- which would repeal the state's personal belief exemption and require that only children who have been immunized for diseases such as measles and whooping cough be admitted to a school in California -- are returning with what they say is a powerful trump card.

Parents like San Jose resident Elaine Shtein are being encouraged to bring a son or daughter to stand with them before the eight-member Senate Education Committee on Wednesday with a warning: If the bill passes, they pledge to yank their children out of public and private schools, and home-school them, something they believe will deprive both the state and private school systems of money for every student enrolled.

"This next hearing is going to be a key one for us because of the financial stakes,'' said Shtein, 34, who said her 5-year-old son was diagnosed with autism after receiving a vaccine as a baby.

The tactic is unlikely to succeed.  Home-schooling is hard, and very few of these parents will actually be able to do it.

Gestational Diabetes

At one point in The Politics of Autism (Rowman and Littlefield, forthcoming later in 2015), I review the long list of possible risk factors and correlates of autism.  A press release from Kaiser Permanente suggests an addition to the list:

Children whose mothers developed gestational diabetes by the 26th week of pregnancy were at increased risk of developing autism later in life, according to a new Kaiser Permanente study published today in the Journal of the American Medical Association.

Researchers examined the electronic health records of more than 322,000 ethnically diverse children born between 28 and 44 weeks at Kaiser Permanente Southern California medical centers between January 1995 and December 2009. They followed the children for an average of 5.5 years and found that those exposed to gestational diabetes by the 26th week of pregnancy had a 63 percent increased risk of being diagnosed with an autism spectrum disorder than children who were not exposed. After taking into account maternal age, education, race and ethnicity, household income and other factors, the increased risk of autism associated with gestational diabetes was 42 percent.

“The exposure of fetuses to maternal hyperglycemia may have long-lasting effects on organ development and function, but whether this can disrupt fetal brain development and heighten risk for neurobehavioral developmental disorders in offspring is less clear,” said study lead author Anny H. Xiang, PhD, of the Kaiser Permanente Southern California Department of Research & Evaluation. “Future studies should address whether early diagnosis and treatment of gestational diabetes can reduce the risk of autism.” She noted that this was an observational study, therefore the findings reveal associations between gestational diabetes and risk of a child developing autism rather than proving a cause and effect relationship.-

See more at:  http://share.kaiserpermanente.org/article/kaiser-permanente-study-finds-gestational-diabetes-associated-with-greater-risk-of-autism-in-children/#sthash.1aRzB2Cw.dpuf 

  Association of Maternal Diabetes With Autism in Offspring by JAMA »

Progress on Brain Scans

A release from UC San Diego:

Using functional magnetic resonance imaging (fMRI), University of California, San Diego School of Medicine researchers say it may be possible to predict future language development outcomes in toddlers with autistic spectrum disorder (ASD), even before they’ve been formally diagnosed with the condition.

 The findings are published in the April 9 online issue of the journal Neuron.

A major challenge of ASD diagnosis and treatment is that the neurological condition – which affects 1 in 68 children in the United States, mostly boys – is considerably heterogeneous. Early symptoms differ between each ASD toddler, as does progression of the condition. No uniform clinical phenotype exists, in part because the underlying causes for different subtypes of autism are diverse and not well-understood.

“There is no better example than early language development,” said senior author Eric Courchesne, PhD, professor of neurosciences and co-director of the Autism Center of Excellence at UC San Diego. “Some individuals are minimally verbal throughout life. They display high levels of symptom severity and may have poor clinical outcomes. Others display delayed early language development, but then progressively acquire language skills and have relatively more positive clinical outcomes.”

In other words, said Courchesne, in some children with ASD language improves substantially with age; but in some it may progress too slowly or even diminish. The neurodevelopmental bases for this variability are unknown, he said. Differences in treatment quantity do not fully account for it. But numerous studies have shown that early, accurate diagnoses of ASD can improve treatment benefits in many affected children.

“It’s important to develop more and new biological ways to identify and stratify the ASD population into clinical sub-types so that we can create better, more individualized treatments,” said co-author Karen Pierce, PhD, associate professor of neurosciences and co-director of the Autism Center of Excellence.

In the Neuron paper, Courchesne, first author Michael V. Lombardo, PhD, a senior researcher at the University of Cambridge and assistant professor at the University of Cyprus, Pierce and colleagues describe the first effort to create a process capable of detecting different brain subtypes within ASD that underlie and help explain varying development language trajectories and outcomes. “We wanted to see if patterns of brain activity in response to language can explain and predict how well language skills would develop in a toddler with ASD before that toddler actually began talking,” said Courchesne.

The researchers combined prospective fMRI measurements of neural systems’ response to speech in children at the earliest ages at which risk of ASD can be clinically detected in a general pediatric population (at approximately ages 1-2 years) with comprehensive longitudinal diagnostic and clinical assessments of language skills at 3-4 years of age.

They found that pre-diagnosis fMRI response to speech in ASD toddlers with relatively good language outcomes was highly similar to non-ASD comparison groups with robust responses to language in superior temporal cortices, a region of the brain responsible for processing sounds so that they can be understood as language.

In contrast, ASD toddlers with poor language outcomes had superior temporal cortices that showed diminished or abnormal inactivity to speech.

In sum, the study found entirely different neural substrates at initial clinical detection that precede and underlie later good versus poor language outcome in autism. These findings, said researchers, will open new avenues of progress towards identifying the causes and best treatment for these two very different types of autism.

“For the first time, our study shows a strong relationship between irregularities in speech-activation in the language-critical superior temporal cortex and actual, real-world language ability in ASD toddlers,” said Lombardo.

The scientists said fMRI imaging also showed that the brains of ASD toddlers with poor language development processed speech differently, including how neural regions governing emotion, memory and motor skills were involved.

“Our work represents one of the first attempts using fMRI to define a neurofunctional biomarker of a subtype in very young ASD toddlers,” said Pierce. “Such subtypes help us understand the differences between persons with ASD. More importantly, they can help us determine how and why treatments are effective for some, but not all, on the autism spectrum.”

Co-authors include Lisa Eyler, UCSD and Veterans Affairs San Diego Healthcare System; Cindy Carter Barnes, Clelia Ahrens-Barbeau, Stephanie Solso, and Kathleen Campbell, UCSD. Funding for this research came, in part, from National Institute of Mental Health grants P50-MH081755, R01-MH080134 and R01-MH036840, the National Foundation for Autism Research and Jesus College, Cambridge and the British Academy.

Oils and Accommodation in Florida

Sheli Muniz reports at WKMG in Orlando:

A Central Florida mom has won a battle with a Lake County School which once threatened to suspend her son because of the essential oils she uses to treat his autism.

[MORE: Local 6 talks with mom, son ]
The company who makes the essential oils describes them as being "beautifully and powerfully fragrant." The family uses oils with scents like lavender, chamomile and sandalwood.

"These are the three he gets in the morning. We put it behind his ears and on his neck," said Jessica Kemp, as she showed Local 6 the oils.

Logan Kemp, 5, will tell you that he loves Seminole Springs Elementary School, but his mother said this week the Eustis school threatened to suspend the kindergartner over the essential oils. Kemp said the oils help Logan's behavior issues that come with his autism.

"Why is it not OK? Nobody is telling me. I'm just being told that he smells," said Kemp.

The family has been using them all school year. Kemp said a teacher's aide once complained about it, but never any students.

Success After School

Christina Samuels reports at Education Week:

Emerging evidence suggests that students with disabilities have better outcomes after school if they set their own goals, have parents who expect them to be self-supporting, and are able to travel independently outside the home, according to a new review of postschool transition research presented Wednesday at the Council for Exceptional Children convention here.

Valerie Mazzotti, Dawn Rowe, and James Sinclair, all associated with the University of Oregon in Eugene, were presenters at a session on recent research from a federally funded longitudinal study of students with disabilities. (Mazzotti and Rowe are research associates at the university; Sinclair is a doctoral student.)

Previous studies have found that certain factors are linked to postschool success. Among them are inclusion in general education, social skills, and paid employment and work experience. The University of Oregon researchers wanted to expand on those older studies to find if additional factors are tied to positive outcomes. Eleven studies published between 2009 and 2014 were deemed to be of high enough quality to include in the review.

"We have to think about how we support parents in having high expectations," Rowe said.

Related stories:

• Study: Postsecondary Transition Programs Lack Effectiveness Evidence
• More Students with Disabilities Heading to College
• Life Paths Diverge for Students With, Without Disabilities

RFK, Jr. on a "Holocaust"

Jeremy B. White reports at The Sacramento Bee:

With lawmakers preparing to vote on a bill blocking parents from skipping vaccinations for their children, prominent vaccine skeptic Robert F. Kennedy Jr. arrived at the Sacramento screening of a film linking autism to the vaccine preservative thimerosal and warned that public health officials cannot be trusted.

“They can put anything they want in that vaccine and they have no accountability for it,” said Kennedy, who walked onto and left a Crest Theater stage to standing ovations, of the federal Centers for Disease Control and Prevention.
...
“I think it is dangerous that he is spreading misinformation about something that’s very important for public health,” Sen. Richard Pan, D-Sacramento, a pediatrician, said in an interview. “Autism rates have continued to rise even though we are not using thimerosal in vaccines for children,” he added. “We still haven’t figured out exactly what causes autism. We do know it’s not vaccines.”

But some parents fear information about the hazards of vaccines has been suppressed, largely because of what they call the pharmaceutical industry’s influence over health officials. Many parents believe their children have been damaged by vaccines. When Kennedy asked the crowd of a few hundred viewers how many parents had a child injured by vaccines, numerous hands went up.

“They get the shot, that night they have a fever of a hundred and three, they go to sleep, and three months later their brain is gone,” Kennedy said. “This is a holocaust, what this is doing to our country.”

Read more here: http://www.sacbee.com/news/politics-government/capitol-alert/article17814440.html#storylink=cpy

...

Read more here: http://www.sacbee.com/news/politics-government/capitol-alert/article17814440.html#storylink=cpy

Wandering and a Neglect Citation

Lenore Skenazy blogs at Reason:

An autistic 4-year-old wandered away from his home in Omaha, Nebraska, without his mom's knowledge. She did the right thing: she called the cops. And what did she get for it? A neglect citation. KETV 7 reports:

911 dispatchers received a call around 8:15 p.m. Thursday about a child standing on the corner of Northwest Radial Highway and Hamilton Street. The child had been there about 10 minutes with no adults nearby, according to a police report.

The child was unable to tell police where he lived or the names of his parents.

At 8:33 p.m., 911 received another call from a woman reporting her 4-year-old autistic son was missing.

According to the police report, officers went to the woman's home. She said her son had left the house without her knowledge and she went looking for him.

When the mother failed to find her son, she returned home and called 911.
The 31-year-old mother was cited on suspicion of child neglect.

Humans cannot be perfect. Humans cannot see all. Why don't the authorities seem to understand that?

"Wanderings" by kids with autism are fairly common, by the way (see this piece), and often the children are drawn precisely to the most dangerous places: bodies of water and busy streets.

I can't even imagine how many challenges the families of kids with autism face. A suspicious and unforgiving legal system should not be among those challenges.

Different Views

 Duke student Manoj Kanagaraj writes at The Washington Post:

The mistake that neurodiversity advocates often make is to equate autism research with a modern form of eugenics. Yes, there are people who donate money to autism research thinking that it will help prevent the disorder. But science is unlikely to reach a point where a child’s risk of developing autism can be conclusively predicted before birth. Instead, researchers — at least the ones I’ve spoken with — hope more than anything that the search for autism genes will help reveal the biology of brain development. Gaining this type of understanding is an opportunity to identify where, when and how to intervene to help people with autism improve their lives.

But what neurodiversity advocates have right is the need for a cultural change. If autism weren’t seen as something to be universally cured, future therapies could be focused on better alleviating the conditions that lead autistic people to physically and emotionally suffer, such as meltdowns and sleep problems.

Scientists and neurodiversity advocates need not be pitted against each other. There is a false dichotomy in the autism world that suggests we must choose between studying the origins of the disorder and accepting autism as natural personality variation. This divide creates unnecessary tension between the scientific and autism advocacy communities, whose interests actually often overlap. We can work together to secure more resources for people already living with autism without attacking critical research efforts. To dismiss all autism genetics research out of hand is as shortsighted as treating autism as a single monolithic condition in need of a cure.

At io9, Gretnablue has an open letter to the Autism Society about Autism Awareness Week:

First of all the Jigsaw analogy, dear god the jigsaws. Can we please stop with this? Autistic people aren't a puzzle that needs fixing. We aren't some strange group that needs to be understood. Many of us are people like anyone else and all you're doing by perpetuating this jigsaw analogy is ironically making it harder for people to accept us as normal.

Secondly, the attitude. This is something that has driven me mad about the Autistic Society before but this year is the worst. The way the group writes its campaign is unbelievably patronizing, making it sound like all Autistic people are helpless victims that need your help. This is again, not at all helpful and again, perpetuates the notion that we are all like Rain Man, incapable of human interaction and are unsociable.

Microsoft and Autism

At Microsoft, a blog post from Mary Ellen Smith, vice president, worldwide operations:

In honor of World Autism Awareness Day, Thursday, I had the privilege to attend and speak at an event held at the United Nations in New York City, where the theme was “Autism, The Employment Advantage.”

This theme resonates with me on two levels.

First, as a parent. I am the proud mom of Shawn, now 19, diagnosed with autism when he was four years old. Secondly, as a proud executive at Microsoft. A company that believes strongly in diversity.

At Microsoft, we believe that diversity enriches our performance, our products and services, the communities where we live and work, and the lives of our employees. We provide an inclusive environment where everyone can do their best work and have been investing in these programs for many years. In fact, this was one of the things that attracted me to Microsoft.

We have been committed to enabling people with disabilities to be successful for a long time. We also work with Supported Employment and vendor partners to hire people for roles in event services, transportation, and food services. In these roles, we see only 1 percent attrition level. Today, people can consider a wide range of opportunities in supported employment with our vendor partners at Microsoft.

This week, we announced another exciting effort, a new pilot program with Specialisterne, focused on hiring people with autism for full-time, Redmond-based Microsoft positions. It’s early days but we’re excited to get going and we know we’ll learn a lot along the way. Why are we so passionate about this space?

It’s simple, Microsoft is stronger when we expand opportunity and we have a diverse workforce that represents our customers. People with autism bring strengths that we need at Microsoft, each individual is different, some have amazing ability to retain information, think at a level of detail and depth or excel in math or code. It’s a talent pool that we want to continue to bring to Microsoft!

This represents only one of the ways we are evolving our approach to increase the diversity of Microsoft’s workforce. We believe there is a lot of untapped potential in the marketplace and we are encouraged by the strong level of readiness from the vendors who cater to this segment.

Our effort goes beyond autism. We are passionate about hiring individuals of all disabilities and we believe with them, we can create, support, and build great products and services. Our customers are diverse and we need to be as well.

At Microsoft, we encourage all employees to realize their full potential. This belief and the inspiration I get from my son is what drives me personally and why I was honored to speak.

The day my son was diagnosed I distinctly remember the final words of two doctors I overheard as my husband and I left the medical center, “I think they understand.”

I also remember how we walked to the car, pulled onto the road, drove 15 miles to our home, and entered the house. All in silence. We did not know what to say.

But we do now. What we learned over the last 15 years was to find our voice. To model what a unique advantage a young man like my son Shawn can offer. To think of where he is now, a college freshman and part-time employee, and where he has the potential to go, makes my husband and I so proud.

I am also proud of how our society and our workplace is moving forward with the commitment to help support people with autism and disabilities in general.
Candidates interested in our pilot program can email resumes to msautism@microsoft.com. Find out more about Microsoft’s commitment to diversity and inclusion.

Impact of DSM-5

Isaac C. Smith, Brian Reichow, Fred R. Volkmar have an article at The Journal of Autism and Developmental Disorders titled "The Effects of DSM-5 Criteria on Number of Individuals Diagnosed with Autism Spectrum Disorder: A Systematic Review."  The abstract:

A growing body of research has raised concerns about the number of individuals diagnosed with autism spectrum disorder (ASD) according to DSM-IV-TR who may no longer qualify for diagnoses under the new DSM-5 criteria, published in May 2013. The current study systematically reviews 25 articles evaluating samples according to both DSM-IV-TR and DSM-5 ASD criteria. Consistent with previous reviews, the majority of included studies indicated between 50 and 75 % of individuals will maintain diagnoses. We conducted visual analyses of subgroups using harvest plots and found the greatest decreases among high-functioning populations with IQs over 70 and/or previous diagnoses of PDD-NOS or Asperger’s disorder. We discuss the potential research and clinical implications of reduced numbers of individuals diagnosed with ASD.

One major limitation of such studies is that actual clinical practice might be very different. Also note that the shift might not affect services in schools, since educational determinations are different from medical diagnoses.

Mississippi Mandate, But Not Enough BCBAs

At the Clarion Ledger, C. Todd Sherman reports:

A state law requiring health insurance plans to cover autism therapy goes into effect in July, but it could take years before its benefits are fully realized.

Mississippi has only a few dozen people certified in applied behavior analysis, or ABA. Considered the holy grail of autism therapy, ABA can diminish or reverse symptoms associated with the disorder but costs parents as much as $200 per hour out of pocket.

A minimum 20 hours a week of ABA is recommended. But with an estimated 10,000 children in Mississippi with autism, which causes mild to severe problems in communication and socialization, those scant ABA therapists can’t meet the demand.

“We could easily quadruple our staff and not meet the demand,” said John Damon, CEO of Mississippi Children’s Home Services.
...

The University of Southern Mississippi plans this fall to offer a master’s level Applied Behavior Analysis-emphasized curriculum in the school of education and psychology, said assistant professor Jim Moore.

Moore said interest is high in ABA but limited funding may allow only a few students into the program. With autism rates on the rise — the disorder affects one in 68 children now — Mississippi needs more therapists.

Ava's Law: Final Passage

The Atlanta Journal-Constitution reports:

Insurance companies would have to provide coverage to children with autism under legislation on its way to Gov. Nathan Deal’s desk.

The House voted 161-0 on Thursday to give House Bill 429 final approval, ending a years-long struggle by parents and advocacy groups to gain a level of coverage offered in many other states.

The vote in the House came after a negotiated end to a stalemate last week. House leaders had fought the bill for years, arguing it would hurt small businesses that provide insurance coverage for employees.

The compromise version passed the Senate unanimously last week.

The final bill requires insurance companies to provide up to $30,000 a year of coverage for children age 6 and under.

Medical Assistance to Pay for ABA in Minnesota

Chris Serres reports at The Minneapolis Star-Tribune:

A Somali immigrant mother’s relentless campaign to expand care for poor children with autism has achieved a major triumph, as Minnesota becomes one of the first states in the nation to subsidize a broad range of intensive therapies for the developmental disorder.

The federal government has approved Minnesota’s request to pay for expensive one-on-one therapies designed to improve language and social skills in children and young adults with autism. As a result, hundreds of low-income families on Medical Assistance, Minnesota’s health plan for 1 million poor and disabled Minnesotans, will benefit from treatment that previously been available only to wealthier people.

The approval by the federal Centers for Medicare and Medicaid Services (CMS) marks a major victory for Idil Abdull, whose 12-year-old son has autism and who fought a relentless, five-year battle to gain coverage of intensive early interventions for young children with the disorder. Abdull made so many trips to the State Capitol in her distinctive red and blue hijabs that she became known as the “Autism Lady” and was on a first-name basis with state commissioners and influential legislators.

“I wore them down,” an ebullient Abdull said in an interview after the CMS announced approval last week. “This wasn’t a case of ‘Minnesota Nice.’ I let my emotions for my son and for the thousands of other poor kids with autism drive what I was doing.”

One of the more controversial therapies that will now be covered by public insurance is applied behavior analysis, which emphasizes simple tasks and repetition as a way to control impulsive behavior common among autistic children. The therapy, which costs up to $100,000 a year, has been offered to some middle-class and wealthy families who petitioned for state coverage, but not to many poor children on Medical Assistance whose families lacked the legal tools to pursue coverage. Minnesota is now just the third state to cover applied behavior analysis in its public insurance program, according to the CMS.

Controversial? What does the Minneapolis Star-Tribune have against ABA?  Another headline referred to ABaq -- the therapy with the most empirical validation -- as "unproven."

Kaiser Researches Genetics

Victoria Colliver writes at The San Francisco Chronicle:

Kaiser Permanente is about to begin what is believed to be the largest genetic research project ever conducted by a health organization into the causes of autism, gathering biological and other health information from 5,000 Northern California families who have a child with the developmental disorder.

Scientists have long suspected that autism results from a combination of genetics and environmental factors, but no one knows for sure. They hope a study of this size will reveal the root causes that could eventually lead to improved diagnoses and new treatments.

“This is an opportunity for the families who are affected by autism to really contribute their expertise and experience and help find answers,” said Lisa Croen, director of the autism program at Kaiser’s Division of Research in Oakland and the study’s principal investigator. “It’s definitely a huge scientific contribution in enhancing our understanding of autism, what causes it, how to treat it in the future and possibly even prevent it.”
...
Researchers hope the Kaiser study will help them understand what’s behind the acceleration in autism cases. They will begin recruiting families in July.

“There have been a lot of genetic studies done, and the one thing we know for sure is it’s very complex,” said Neil Risch, study co-investigator and the director of UCSF’s Institute for Human Genetics. “It’s not likely there are just one or two 'smoking gun’ genes contributing to it.”

The study, called the Autism Family Research Bank, was funded by a $4.6 million grant from Simons Foundation, a charity that supports a variety of health and social welfare initiatives. The grant will fund the recruiting of families and the collecting of detailed genetic, medical and environmental information, all of which is expected to take three years.