Californians Support Vaccination

A new survey from the Public Policy Institute of California:

The legislature is debating a bill that would eliminate personal-belief and religious exemptions to the requirement that parents vaccinate their children before enrolling them in kindergarten. Asked how they feel about requiring children to be vaccinated to attend public schools, two-thirds of Californians (67%) and public school parents (65%) say children should not be allowed to attend unless they are vaccinated. Majorities of adults across all regions and demographic groups say children should be required to be vaccinated. Overwhelming majorities also say that, in general, vaccines given to children are very safe (57% adults, 54% public school parents) or somewhat safe (30% adults, 34% public school parents). This view holds across racial/ethnic groups, though Latinos (49%) are much less likely than whites (65%) to view vaccines as very safe.

Life After Special Ed

A release from Education Week:

Today, the nation’s public schools serve nearly 6 million students with disabilities from ages 6 to 21, accounting for about 9 percent of all individuals in this age range. The large majority of these students (82 percent) are “mainstreamed” and spend a substantial share of their school hours in the same classrooms as their non-disabled peers. Four decades ago—before the federal Individuals with Disabilities Education Act (IDEA) and its predecessor legislation existed—the experiences and opportunities of this population were vastly different. In the early 1970s, these youths were marginalized both in school and in life, with only one-fifth of children with disabilities even enrolled in public schools.

The 2015 edition of Education Week’s Diplomas Count report—Next Steps: Life After Special Education—explores the experiences of students with disabilities, who are coming of age at a time when they, like all high school students, are increasingly expected to perform to high academic standards and to prepare for further education or training and a productive role in the workplace. This tenth installment of the annual report highlights the challenges and opportunities awaiting these students as they transition from the K-12 education system to a more independent adult life.

“Despite the significant progress witnessed during the past generation, students with disabilities continue to face significant hurdles as they follow their paths through school and beyond,” said Christopher B. Swanson, Vice President of Editorial Projects in Education, the nonprofit organization that publishes Education Week. “These challenges are particularly evident as these youths reach the end of the high school years and take their first steps into a wider world, often without the resources and supports they
had received through special education programs.”

As Education Week’s reporting underscores, early and comprehensive transition planning that fully involves the youths and their families can be a crucial step in identifying ambitious but realistic goals for students with disabilities, and helping them navigate the often-unfamiliar terrain of the post-high-school world. Teaching these young adults to be effective advocates for their own needs and interests can further support successful transitions into adulthood.

The report brings the diverse experiences of students with disabilities to life through a series of five profiles of young adults with a range of disabilities. They powerfully share, in their own words, their struggles, successes, concerns, and hopes for the future.

As always, Diplomas Count also features the latest graduation rates for the nation and states, this year with a particular focus on the outcomes of students with disabilities. According to the most recent data from the U.S. Department of Education, 81 percent of the high school class of 2013 graduated with a regular diploma, marking several years of improvement for the nation as a whole and a large majority of states. With a graduation rate of only 62 percent, students with disabilities lag considerably behind their peers. 

Results vary greatly from state to state, with graduation rates for students with disabilities ranging from a low of 23 percent in Mississippi to a high of 80 percent in Arkansas. Among the factors that may influence patterns of high school completion are school discipline practices that disproportionately affect special education students, as well as significant state-level discretion in setting graduation requirements that may be less rigorous for students with disabilities than for their peers.

Tech Employment

Olga Kharif reports at Bloomberg Business:

Last year, a team of testers from New York-based Ultra worked to find software bugs for the company behind the Webby Awards, which honors Internet excellence.

"They found five-to-10 times more things than we found ourselves. We were astonished," said Steve Marchese, executive producer at Webby Media Group. "This is a really smart way to utilize the gifts that people on the spectrum have."

Businesses also have an incentive to employ people with autism because it helps them comply with Labor Department rules that went into effect last year. The regulation calls on companies that get federal contracts to increase hiring of people with disabilities so they make up 7% of staffing.

Integration can be challenging. Managing autistic adults often requires enhancing training, adapting work stations, adopting new communication skills and accepting non-traditional work methods. Employees need to adjust to the physical workplace with its noises and layout and social interactions with colleagues. Both sides need to be aware of comparable salaries to avoid exploitation.

An Epidemiologist Speaks

Uncertainty is a major theme of The Politics of Autism.  It also comes across in SFARI's recent interview with epidemiologist Maureen Durkin:

SFARI.org: Can epidemiological studies explain the increase in autism rates?

Maureen Durkin: Epidemiology is good at capturing autism’s rise, but not necessarily explaining it. The reasons have been tough to capture using epidemiologic studies, because they’re only as good as the data available. The studies cannot easily separate out whether the rising rates stem from changes in awareness or other reasons.

S: What progress have you made so far in explaining the rise?

MD: Traditional epidemiologic efforts have identified risk factors and causes. We then see how much of the increase in autism prevalence could be attributed to those factors. So far, nothing that we can identify and measure would be enough to account for the magnitude of the increase we’ve seen.

As an example, the age of parents has increased pretty dramatically in the past four decades. The average age of first birth for mothers has increased by about five years, for example. That trend is coincident with the rise in autism. But when you do the numbers, at most, 1 percent of the increase in autism prevalence could be attributed to parental age, perhaps even less.

One thing we wondered: Because older parents are usually more educated and have more resources than younger parents, maybe they’re better able to get an autism diagnosis for their child. So the contribution of parental age might be more than just the numbers of older parents. It might also come from tSheir ability to advocate and raise awareness. That’s difficult to capture in epidemiological data.

We’ve also measured perinatal factors. Improvements in the survival of very premature babies have probably contributed to autism prevalence becausethese babies are at greater risk for autism. But again, these factors cannot explain the dramatic increase.

Other issues involve diagnosis, including ‘autism’ expanding to a spectrum and other changes in diagnostic criteria. But from 2000 to 2010, when there were no such changes, we still saw more than a doubling in the prevalence of autism.
...

S: Is autism on the upswing worldwide?

MD: We see disparities in autism prevalence worldwide. But that is largely because we lack information for most of the world, not because autism is changing at different rates in different places. But everywhere that prevalence has been measured over time, it seems to be increasing. Those areas are mostly restricted to Western Europe, the U.S. and a few Asian countries. That’s changing, however; the map is filling in as more studies come out.

TRICARE Changes

From Autism Speaks:

TRICARE, the Department of Defense healthcare program, announced improvements to its coverage of applied behavior analysis (ABA) for beneficiaries with autism. The improvements were announced as amendments to the TRICARE Comprehensive Autism Care Demonstration (ACD).

The newly published federal register notice describes the changes, including aligning ABA cost shares with other outpatient services under the TRICARE Basic Program and having cost shares accrue to the annual family catastrophic cap. ABA provider reimbursement rates will be based on “geographic practice cost indices.”

The notice states, “As a result of this adjustment, all TRICARE beneficiaries receiving ABA for ASD under the ACD will now be protected from excessive out of pocket costs by the applicable catastrophic cap based on their sponsor’s status and TRICARE plan under which covered.”

The ACD goals are to evaluate ABA under TRICARE and determine appropriate delivery models, cost sharing requirements, and provider reimbursement rates while increasing access to ABA services.

“This is a very positive step to ensure ABA services are affordable to military families,” said Karen Driscoll, Associate Director, Federal Government Affairs & Military Relations. “We applaud TRICARE and DoD leadership for listening and responding to the concerns from the community.”

All changes go into effect on October 1, 2015.

Read more on Tricare coverage of ABA HERE.

A College Transition Program

Though we have scant data, it appears that more and more ASD people are going to college. AP is carrying a story from Bloomington's Herald Times.  It describes the College Internship Program.

CIP worldwide is a comprehensive postsecondary support program for young adults on the autism spectrum and with other learning differences, according to the organization’s website. Karen Thomas, program director of CIP Bloomington, said the program offers 24-hour-a-day support as students make the transition into adult life.

Students can pursue degrees at Ivy Tech or Indiana University while receiving support and direction from CIP’s academic support team. CIP’s career department helps students with their resumes and finding an internship. Many of the students start out living in the Smallwood apartments located above the center. Independent living support offered for students in the apartments includes menu planning, grocery shopping, cooking and cleaning, assistance with time management and organization.

“We look at it as a transition program,” Thomas said. “It’s the first time these students have been away from home, and they feel really overwhelmed.”

What Is a Community-Based Setting?

At The Atlantic, Amy S.F. Lutz writes of the housing problems of autistic adults (h/t Gene):

Congregate settings for people with intellectual and developmental disabilities (I/DD) have been discouraged for years. During the 1960s, around the time Ken Kesey published One Flew Over the Cuckoo’s Nest, patient advocates began rejecting the idea of the mental institution, arguing that people with disabilities should and could live in their communities. Since that time, the institutionalized I/DD population has dropped by more than 80 percent.

It seemed pretty simple: community good, institutions bad. But these two terms have proven extraordinarily difficult to pin down. Is the difference merely one of size? In 2011, the National Council on Disability defined “institutional settings as housing situations in which more than four people with I/DD” live in a single home. Some autistic people and their families have embraced this definition: The four-person size limit was included in “Keeping the Promise: Self-Advocates Defining the Meaning of Community Living,” a 2011 paper jointly issued by three self-advocacy organizations.

In some states, this guideline is poised to become law, which means such congregate settings may all be excluded from the waiver program. This could prove disastrous for the autism community, which is facing a housing crisis that is only expected to get worse. Right now, 80,000 autistic adults are on waiting lists for residential placements that can be up to 10 years long, and the nonprofit advocacy organization Autism Speaks estimates that half a million autistic children will transition to the adult state-by-state funding system over the next decade. Shortages aside, there are plenty of parents who feel that large facilities like Lakeside are truly the best places for their children and bear no resemblance to the institutions of the mid-20th century.

This sounds like a technical debate, and one limited to a very specific community, which may explain the public’s relative lack of interest. But it touches on a larger question: While many Americans may never need food stamps or unemployment, virtually everyone eventually benefits from Social Security and Medicare. What level of control should the government have over how these subsidies are used? In the case of disabled adults, who should decide what kind of housing best suits their needs? Should it be those individuals and their families, or should it be the state?

Texas Truancy

A news release from the National Center for Youth Law:

Texas school districts are using truancy courts to force students with disabilities out of school, according to an administrative complaint filed May 27 with the Texas Education Agency (TEA). The complaint also accuses TEA of failing in its responsibility to ensure that Texas districts are complying with state and federal law that allows students with disabilities to receive the supports and services they deserve to promote regular attendance and appropriate education.

The complaint was brought against 13 school districts and TEA by Disability Rights Texas, the National Center for Youth Law (NCYL) and Texas Appleseed, on behalf of all students with disabilities who have been funneled into the truancy courts and then forced out of school. The complaint is against these Texas school districts: Abilene, Austin, Clear Creek, Conroe, Ector County, Fort Bend, Fort Worth, Galena Park, Galveston, Houston, Pasadena, San Antonio, and Victoria Independent School Districts.
According to the complaint, students are being pushed out in various ways including being forced into GED programs, alternative schools, and being coerced into mandatory homeschooling.

...
“Texas is notorious for prosecuting more than twice as many truancy cases as all other states combined, driven in part by our treatment of students with disabilities,” said Deborah Fowler, executive director of Texas Appleseed. “It is especially egregious that our most vulnerable youth are being pushed out of a system that is supposed to provide opportunity and support only to be forced to defend themselves in adult court without the assistance of an attorney.”

The threat of criminal charges and fines alone result in some students accepting deals to leave school rather than going to court. In many cases, the school districts’ court representatives make recommendations to the prosecutor or judge regarding the case outcome, including ordering students to withdraw and prepare for the GED test. Many courts routinely follow these recommendations, so the school district’s recommendation becomes a court order.

Earlier this year, Texas Appleseed released TEA data that highlights these force outs. According to that data, over a three-year period between 2010 and 2013, 6,423 students were ordered by Texas courts to drop out of school and take the GED, which they subsequently failed. Of these, 1,247 — about 1 in 5 — were students with disabilities. Eleven of the school districts included in the complaint were responsible for close to half of all the general and special education students ordered to drop out during the 2012-13 school year who then failed the GED exam.

“Texas sends students to truancy court for not attending school,” said Michael Harris, Senior Attorney at NCYL. “Yet districts ask the court to resolve these cases by forcing their most vulnerable students into GED programs, boot camps, alternative schools or home schooling. That’s a recipe for feeding the School-to-Prison-Pipeline.”

The complaint charges the districts and TEA with failing to comply with the federal Individuals with Disabilities Education Act (IDEA). The federal law ensures all students with disabilities receive individualized educational services to make progress on their educational goals. Districts cannot meet this standard by forcing students out of the school system entirely. The districts named in the complaint have chosen to force out students with disabilities by filing truancy cases rather than providing the federally mandated services that would enable students with disabilities to fully participate in their education.

TEA has told districts that they will be scrutinized if they identify more than 8.5 percent of their students as eligible for special education services. Consequently, even though the national average is 35 percent higher, Texas school districts identified exactly 8.5 percent of students eligible for special education in the 2012-13 school year.

“TEA has given the districts an incentive to reduce the number of students in special education,” said Dustin Rynders, Supervising Attorney with Disability Rights Texas. “Denying services and referring students to truancy court is clearly a way the districts do that.”

The students and their advocates have filed this complaint to ensure that districts develop and follow procedures for identifying, evaluating and serving students suspected of having disabilities who are missing school. The complainants want districts to stop using the truancy process to force out students with disabilities. Further, they want TEA to bring itself into compliance with IDEA and provide guidance and monitoring to districts regarding the illegality of using the truancy process to force out students with disabilities.

More Silly Speculation about Asperger's

There has been much silly speculation that certain famous people may have been (or are) on the spectrum. Nicola Harley writes at The Telegraph:

Field Marshal Montgomery's "high handed" approach to his superiors and "strange" behaviour may have been an indication he had Asperger's Syndrome, one historian has suggested.

Historian Antony Beevor believes Montgomery, who was once described by Dwight Eisenhower as a "psychopath", showed signs of the condition in the way he misjudged situations and people.

Montgomery, one of the best known British generals of the Second World War, became famous after his victory at El Alamein in November 1942.

During the Second World War he commanded the British Eighth Army from August 1942 in the Western Desert until the final Allied victory in Tunisia, this command included the Battle of El Alamein, a turning point in the Western Desert Campaign. He subsequently commanded the British Eighth Army during the Allied invasion of Sicily and then during the Allied invasion of Italy.

Montgomery's step-grandson Tom Carver also believes he may have had Asperger's Syndrome, which is a form of autism where people find it more difficult to communicate and interact with others and can lead to high levels of anxiety and confusion.

Mr Beevor said: "I believe he had high functioning Aspergers Syndrome. Montgomery was always very, very strange in his behaviour. He had no idea how people would react to him.

This explanation is highly unlikely. A more sensible theory is that his brittleness came from his background in a highly dysfunctional high-class  family.

Research on Autism and Aging

A release from San Diego State University:

In the public consciousness, autism spectrum disorder (ASD) is a disorder that affects only children. In truth, ASD is a lifelong condition. But how it affects older adults is a gaping unknown in autism research. Now, a new and significant grant from the National Institutes of Health (NIH) will help researchers at San Diego State University understand how the disorder plays out across the lifespan.

“Developmental disorders do not end after childhood,” said Ruth Carper, a neuroscientist at SDSU and a co-investigator on the project. “Development is a lifelong process, and there is a real need to know what happens later in life for people with autism.”

For a variety of reasons, it’s a subject sorely in need of study, added SDSU psychologist and principal investigator Ralph-Axel Müller. For one, autism spectrum disorder was only recognized as a unique disorder about 70 years ago. Over the years, what we now describe as autism has been referred to as childhood schizophrenia or the catch-all, mental retardation. Only in recent years has medical and public awareness grown to the point where it can be reliably diagnosed.

“It’s hard to even find older adults who have been diagnosed with autism,” Müller explained. “Diagnostic criteria have changed enormously over the decades.”
Another reason is that research and treatment has typically focused on children, Carper added. Part of this has to do with the instinct to protect children, which plays out in research and funding, she said. But it’s also because behavioral treatments and interventions seem to work best in young children, making childhood autism a natural research target.

Educational systems also tend to serve as de facto mental health support systems, meaning children who are still in school receive more institutional attention. Once people with autism leave school, their welfare falls to their families and to the California Department of Developmental Services. Many wind up living with family members or in care facilities for the rest of their lives and those who are able to live independently often struggle with employment or social acceptance, but don’t qualify for support services.

“Fortunately, there’s nothing about autism that shortens the lifespan, as far as we know,” Carper said, but this also means that adults with ASD may require care and special assistance for many decades.

It remains completely unknown whether some of them may be at risk for accelerated cognitive or neurological decline later in life. This has been seen, for example, in the case of people with Down syndrome, who almost always develop Alzheimer’s disorder as adults, as well as in some people with Fragile-X related disorders.

For years, families and advocates have been calling for more research into older adults with autism so that caregivers can ground their support services in hard data and understand what’s happening cognitively and emotionally with their loved ones and patients.

“There’s really no literature to guide hypotheses in this area,” Müller said.

To that end, Carper and Müller recently were awarded a five-year, $3.5-million NIH grant to recruit older adults with autism and perform a series of cognitive and neuroimaging studies. In collaboration with scientists and health workers at the University of California, San Diego, and Alliant International University in San Diego, they are seeking to recruit 70 adults between the ages of 45 and 65 with autism spectrum disorder and an additional 70 control participants.

Using a variety of functional and anatomic brain imaging techniques, the researchers will explore the brain connections of adults with autism to see how they might differ from younger people with the disorder and from adult peers without ASD. They will also give participants assessments of cognitive, social, and language abilities, and measure their executive functioning, motor functioning and memory. Participants’ families and caregivers will respond to questionnaires about their daily living skills.

Though this work is still in its earliest stages, Carper said that people are excited about the research’s potential.

“Families are excited that anyone is looking into this,” she said. “A lot of them feel like they’ve been forgotten.”

Even though very little scientific research has been done in adults with autism, there are smatterings of anecdotal reports that suggest certain aspects of the disorder might improve over time. For example, Carper noted, some parents have reported that their children’s language abilities continue to improve into older age, as do their social skills. Determining whether these improvements are related to normal aging or the natural course of the disorder could help guide therapeutic and support services and suggest new avenues of research.

“We don’t know what’s in the future for these folks,” Carper said, “but we know they need support. Understanding the brain mechanisms at work in older adults with autism can help us improve their lives and the lives of those who care about them.

Autism and Marijuana in Michigan

At AP, Ed White writes of 6-year-old Noah Smith, whose autism symptoms seemed to improve after he took oral doses of an oil extracted from marijuana.

Noah is registered to use marijuana to control epileptic seizures; the effect on his autism was an unexpected benefit. Based on that success, Smith is asking the state of Michigan to add autism to the list of conditions that qualify for medical marijuana.

A public hearing is scheduled for Wednesday in Lansing. A committee mostly composed of health professionals will make a recommendation to the director of the Department of Licensing and Regulatory Affairs.

“I know parents who are desperate. They’re missing out on something that could enhance their child’s life,” Smith said. “A lot of children with autism don’t have another qualifying condition like Noah does with epilepsy.”

Since Michigan voters approved medical marijuana in 2008, it has been used to relieve the side effects of cancer, glaucoma, HIV, hepatitis C and a few other conditions. Post-traumatic stress disorder was the first addition a year ago. Nearly 200 people under age 18, a tiny fraction of the total, are approved to use marijuana.

In 2013, the state’s Medical Marijuana Review Panel voted against making autism eligible, 7-2. There was skepticism about the effectiveness and a concern about adding more children to the registry. But the new effort seems more organized with more doctors willing to speak in favor, including Noah’s doctor, Dr. Harry Chugani, chief of pediatric neurology at Children’s Hospital of Michigan in Detroit.

Earlier this year, Scott Hadland and colleagues looked at the research for an article titled "Medical Marijuana: Review of the Science and Implications for Developmental-Behavioral Pediatric Practice," in The Journal of Developmental & Behavioral Pediatrics.  Their conclusion:

Given the current scarcity of data, cannabis cannot be safely recommended for the treatment of developmental or behavioral disorders at this time. [emphasis added] At best, some might consider its use as a last-line therapy when all other conventional therapies have failed.90,91 As marijuana policy evolves and as the drug becomes more readily available, it is important that practicing clinicians recognize the long-term health and neuropsychiatric consequences of regular use. Although a decades-long public health campaign has showcased the harms of cigarette smoking, similar movements to illustrate the hazards of cannabis use have not been as rigorous or successful. As a result, accurate information on regular cannabis use remains poorly disseminated to patients, families, and physicians. Furthermore, there are especially few studies examining neurocognitive and psychiatric outcomes among children and adolescents with developmental or behavioral concerns who are exposed to cannabis, and this remains a critical area for future study. In coming to the decision to use marijuana for medicinal purposes, all parties should be fully aware of the long-term hazards of regular cannabis use, recognize the lack of evidence on its efficacy in developmental and behavioral conditions, and incorporate this information into a careful risk-benefit analysis.

Autism and Crime: A Review of Studies

Many posts have discussed autism and crime. Katie Maras, Sue Mulcahy, and Laura Crane write at Autism:

The journal, Autism, enjoys a wide readership that extends far beyond academia. We set out here, for the benefit of the whole readership, to debunk the myth that autism causes criminal behaviour. We review the little research on this topic and describe how easily negative stereotypes can be reinforced by press reports.

King and Murphy (2014) conducted a thorough review of the research in this area. They found that on the whole, there is no evidence that people with autism are more likely to engage in criminal activity than people without autism. The studies they reviewed presented conflicting information, however. Some studies have found that people with autism are less likely to commit offences such as probation violations and property offences (Cheely et al., 2012; Kumagami and Matsuura, 2009), and another study reported that people with autism are no more likely to commit violent crime than the general population (Woodbury-Smith et al., 2006). On the other hand, some people with autism may be more likely than the general population to commit certain types of offences such as arson (Hare et al., 1999; Mouridsen et al., 2008), sex offences (Cheely et al., 2012; Kumagami and Matsuura, 2009) and assault and robbery (Cheely et al., 2012).

Research on autism and offending needs to be interpreted with caution, however. Most studies rely on information from small samples that do not represent the general population. These studies also rarely include people without autism for comparison. This makes it inappropriate to attempt to generalise these studies to the autism population at large. For example, two studies found a disproportionately high prevalence of autism in high security hospitals (e.g. Hare et al., 1999; Scragg & Shah, 1994), but this does not mean that the autism population as a whole includes a disproportionate percentage of people who present a danger to society.

There are also several case reports of people with autism engaging in criminal behaviour (e.g. Baron-Cohen, 1988; Mawson et al., 1985). However, generalisations cannot be made on the basis of individual cases regardless of whether these reports originate in the research literature or in the press, not least because it is often the unusual characteristics in such cases (e.g. the bizarre and random acts of violence noted by Mawson et al., 1985) that initially draw attention for analysis.

Vaccine Exemption Limit in Maine

In Maine, the Portland Press-Herald reports:

Maine parents would have to consult with doctors before exempting their children from vaccinations required by public schools, under a bill that won endorsement from a legislative committee Friday.

But despite Maine’s relatively high vaccine opt-out rates, the Legislature’s Health and Human Services Committee voted unanimously to reject a separate bill that would have eliminated the philosophical exemption that has sparked a heated debate over vaccine safety and “herd immunity.”

The committee voted 9-3 in support of L.D. 471, the bill that would require any parent who seeks a philosophical exemption from vaccines to first consult with a medical professional and obtain a signature. Lawmakers from both parties supported the measure; the three dissenting votes were cast by Republicans.

“There are risks in every medical procedure and other things that we do in life, and I think parents have a right to weigh those risks,” said committee co-chair Rep. Drew Gattine, D-Westbrook. “But I think this is an important step to make sure that important conversation happens with respect to something that doesn’t just protect the child being vaccinated, but other children as well.”

The bill could face tougher votes in the House and Senate, and a potential veto by Gov. Paul LePage.

Maine now allows parents to opt out of required vaccines for their children on both philosophical and religious grounds. The vast majority of exemptions are for philosophical reasons, a trend that reflects concerns in some segments of the population that childhood vaccinations could trigger autism or health problems.