Saturday, April 25, 2015

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.

Friday, April 24, 2015

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.

Thursday, April 23, 2015

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

Wednesday, April 22, 2015

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.

Tuesday, April 21, 2015

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 VaccineEve DubĂ©aDominique 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].

Sunday, April 19, 2015

Vaccine Politics in California

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.