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Sunday, May 31, 2015

A College Transition Program

Though we have scant data, it appears that more and more ASD people are going to collegeAP 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.”

Saturday, May 30, 2015

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?

Friday, May 29, 2015

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.

Thursday, May 28, 2015

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.

Wednesday, May 27, 2015

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.

Tuesday, May 26, 2015

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.

Monday, May 25, 2015

Autism and Crime: A Review of Studies

Many posts have discussed autism and crimeKatie MarasSue 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.

Sunday, May 24, 2015

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.

Saturday, May 23, 2015

Voting Rights in Los Angeles County

Stephen Ceasar reports at The Los Angeles Times on Teresa Thompson, who learned that her autistic son could not vote if he were under a guardianship.
Thompson complained to a local disability rights group in Los Angeles, setting off a chain of events that led this week to federal authorities announcing they are investigating allegations that California has systematically and illegally denied intellectually disabled residents such as Lopate the right to vote.

The group, the Disability and Abuse Project, filed a complaint last year with the U.S. Department of Justice contending that the Los Angeles County Superior Court has wrongly stripped people under limited conservatorships of the right to vote if they could not fill out a voter registration affidavit.

Nora J. Baladerian, the group's executive director, said the issue impacts some of society's most vulnerable citizens, including people with cerebral palsy, autism spectrum disorder and traumatic brain injury, among other intellectual disabilities.

"Naïve me. I thought in the courtroom the law was followed," Baladerian said. "It wasn't so. The rights of individuals with disabilities were not being upheld in court."

It is unclear how many people under conservatorship have their right to vote taken away each year. A spokesman for the county's Registrar of Voters said 123 voters had their registrations canceled since January 2014 for "mental incompetence."

A lawyer with Baladerian's group conducted a review of 61 conservatorship cases involving adults with developmental disabilities in L.A. County and found that nearly 90% of the people had been disqualified from voting, according to the group's complaint.

Friday, May 22, 2015

Physicians and Autistic Adults

Michelle Diament reports at Disability Scoop:
A new survey finds many health care providers admittedly know little about how to care for adults with autism...The issue is significant as an increasing number of individuals with autism are expected to enter adulthood in the coming years, Maria Massolo with the Autism Research Program at Kaiser Permanente Northern California and her colleagues said in their findings.
The abstract:
A Mixed Methods Study of Physician Knowledge and Experience with Autism in Adults
Friday, May 15, 2015

M. L. Massolo, O. Zerbo, Y. Qian and L. A. Croen, Division of Research, Kaiser Permanente Northern California, Oakland, CA
Background:  As children with autism become adults their primary medical care will move from pediatrics to adult medicine. There is little evidence of knowledge about autism among adult healthcare providers, and of their readiness to provide optimal care for this adult population.
Objectives:  To determine adult healthcare providers’ general knowledge about autism, and gain an understanding of their experiences and needs in providing healthcare to adult patients with autism.
Methods: This mixed methods study consisted of a brief, online survey sent to Kaiser Permanente Northern California (KPNC) providers in adult medicine, mental health and Ob/Gyn, and semi-structured follow-up interviews with physicians in adult medicine. The 11-question survey assessed healthcare providers’ ability to recognize autism, knowledge of autism, comfort level treating patients with autism, and training and resource needs.  Follow-up interviews focused on autism training in medical school, experience caring for patients with autism, resources and training needs, challenges of clinical care, impact on visit schedule, screening for sex, drugs, and alcohol, concerns brought up by patients or caregivers, and transition from pediatrics to adult medicine.  
Results: Overall, 922 providers completed the survey (response rate 25.3%). More than 90% indicated that they would explore the possibility of ASD in a patient who had limited eye contact, and the majority recognized other autism characteristics. A high proportion under-reported the actual number of patients with ASD in their panel and rated their knowledge/skills in providing care to ASD patients as poor or fair (77%).  Only 13% agreed/ strongly agreed that they had adequate tools/referral resources to accommodate patients with autism in their practice. The majority indicated the usefulness of the following: an autism conference (66%), a checklist of community resources (77%), training on effective communication strategies with autistic patients (70%), a special primary care clinic to serve adults with developmental disabilities (64%), and training about use of psychotropic drugs for autistic patients (56%). Finally, 43% indicated willingness to participate in a follow-up telephone interview.
 Nine primary care physicians were interviewed.  The majority reported receiving little or no ASD training in medical school or residency, yet many said they were comfortable treating their patients with ASD.  Communication difficulties, primarily with patients with limited verbal abilities, were the most frequently experienced frustrations.  Some made adaptations for their patients with ASD. Many indicated that longer office visits with low functioning patients were not a problem.  Conservatorship and privacy issues were mentioned by physicians treating patients who bring caretakers to visits, and several stated that they did not bring up questions about sex, drugs and alcohol with their patients with ASD. All physicians stated that the hand-off between pediatrics and adult medicine requires improvement, and all highlighted a need for training.
Conclusions: Most adult healthcare providers recognized basic autism characteristics but reported not having adequate skills and tools to care for this growing population of adult patients. Provider training, resources, and improvements in the transition from pediatrics to adult medicine are essential to support the delivery of adequate and effective healthcare to adults with ASD.

Thursday, May 21, 2015

Anti-Vax Stalkers

Jeremy B. White reports at The Sacramento Bee:
The California Medical Association has sent a letter warning a California Chiropractic Association official who they say encouraged opponents of a mandatory vaccination bill to stalk lobbyists advocating for the legislation.

The emotional debate over Senate Bill 277, which would make vaccinations compulsory for California schoolchildren and passed the Senate last week, has taken a personal turn in recent weeks. Lobbyists championing the bill on behalf of the California Medical Association and the California Academy of Family Physicians have attracted the attention of bill opponents, who have begun sharing information on the lobbyists and disseminating photos of their locations on social media.
California Chiropractic Association President Brian Stenzler has spurred them on, according to a letter signed by California Medical Association CEO Dustin Corcoran, with a video in which Stenzler tells an SB 277 opponent who asks about the two lobbyists to follow them “all day long – follow them to a T.”
Also at The Bee, Shawn Hubler picks up the story:
[Stenzler] says now that he meant “follow the money.” But the video, posted on Facebook (and recently removed), sent the campaign against Hicks, a 43-year-old mother of three, into warp speed.
“Hey, Jodi!” someone yelled as she crossed the street. When she turned, a bevy of red-shirted “No on SB 277” women snapped her picture. Moments later, it was up on Twitter.
“#wheresJodi,” the caption sneered. “#DevilWithTheBlueDress.”
“There’s a special place in hell for you, just waiting,” warned the mean tweets.
“People were on blogs saying, if somebody shoots my kids with needles, maybe we should shoot these lobbyists,” said Hicks’ understandably distraught husband, Paul Mitchell. “And here’s the president of this association, actually inciting people to stalk my wife.”

A Forthcoming Book

From Rowman and Littlefield:

The Politics of Autism

Navigating The Contested Spectrum


In The Politics of Autism, John J. Pitney, one of America’s leading experts on public policy, explains how the political issues of autism have emerged and analyzes the accompanying disputes in the areas of science, education, and social services, among others. The result is a fascinating look at how public policy is made and implemented at the federal, state, and local government that will also be of vital interest to the network of concerned parents, educators, and researchers in the autism community.
Rowman & Littlefield Publishers
Pages: 180 • Size: 6 x 9
978-1-4422-4960-8 • Hardback • August 2015 • $38.00 • (£24.95)
978-1-4422-4961-5 • eBook • September 2015 • $37.99 • (£24.95)

Wednesday, May 20, 2015

Early Childhood Inclusion

The Departments of Education and Health and Human Services have a draft joint statement on inclusion in early childhood education.  At Disability Scoop, Michelle Diament reports:
While the majority of preschoolers with disabilities attended general early childhood programs as of 2013, more than half of these children received their special education and related services in segregated environments, the Education Department said.
Four decades after the passage of the Individuals with Disabilities Education Act, the Obama administration is calling the current state of affairs “troubling” and is looking for change.
“Children with disabilities and their families continue to face significant barriers to accessing inclusive high-quality early childhood programs and too many preschool children with disabilities continue to receive special education services in separate settings,” reads the statement which is up for public comment through Friday.
Specifically, the federal agencies are urging states to create task forces focused on early childhood inclusion, implement policies and allocate funding to facilitate such programs and set and track goals for expanding inclusive learning opportunities.

Tuesday, May 19, 2015

ABLE in Montana

A former student of mine is governor of Montana.  Last week, he signed a bill bringing ABLE accounts to his state.  Autism Speaks reports:
Montana Governor Steve Bullock signed the Achieving a Better Life Experience (ABLE) Act, SB 399, at a signing ceremony to allow families the opportunity to set up tax-exempt 529A savings accounts for disability-related expenses. Montana is now the 10th state to enact ABLE legislation and a clear indicator of the national momentum for implementing the savings accounts for families with disabilities.
The federal ABLE Act enacted in December of 2014 amended federal law to disregard ABLE account funds for means-tested federal programs such as SSI and Medicaid, which cap (usually at $2,000) the amount an individual with a disability may save. The savings accounts are managed on the state level and require state implementation. Montana’s ABLE legislation, SB 399, was sponsored by Senator Fred Thomas ((R) SD 44).
“We are incredibly grateful to Senator Fred Thomas and Governor Steve Bullock for their leadership on this important legislation that empowers families to invest in the future of their family members with disabilities,” said Stuart Spielman, Senior Policy Advisor and Counsel at Autism Speaks. “Today’s victory would not have been possible without the hard work of grassroots advocates across the state who reached out to their legislators on the importance of ABLE programs for their families and loved ones.”

Monday, May 18, 2015

China and Autism

Shirley S. Wang writes at The Wall Street Journal:
There isn’t a reason to think China’s rate of autism, a developmental disorder characterized by social and communication deficits, is very different from that of other countries, experts say. That means that there likely are millions of people in China with autism, though researchers are unsure about exact numbers.
China has a long way to go in providing high-quality autism intervention to everyone who needs it, experts say.
For instance, ABA improves children’s communication and social skills by reinforcing desired actions and ignoring unwanted ones. In all of mainland China, there are only four board-certified behavior analysts—an internationally recognized credential—to treat autism. By contrast, there are 101 in Rhode Island and more than 3,100 in California, according to the U.S.-based Behavior Analyst Certification Board.
The services that do exist in China are largely for children up to 6 years old, and there are no services for adults, says Yanhui Liao, president of the Shenzhen Autism Society.
For now, many therapists in China, even at the most respected clinics, learn ABA from a book, says Karina Cheung, one of the four certified behavior analysts in China, who started the Starrysky Education and Research Center in Beijing in 2012.

Sunday, May 17, 2015

The Importance of Self-Care Skills

From Autism Speaks:
Researchers tracking children with autism into middle adulthood have found that the single most-important predictor of success is the mastery of self-care skills such as bathing, dressing, cleaning and cooking.
According to their analysis, these skills prove more important than language, intellectual ability or the severity of autism symptoms when it comes to maintaining employment and achieving life satisfaction.

The researchers presented the early findings of their studyfunded by Autism Speaks and Foundation of Hope – at the International Meeting for Autism Research (IMFAR).
“Autism symptoms, language ability and intellectual function certainly contribute to adult outcomes,” says lead researcher Laura Klinger, of the University of North Carolina’s TEACCH Autism Program. “But the single most important predictor of adult employment turns out to be the basic skills of daily living.Being employed, in turn, is strongly related to adult quality of life.”
Dr. Klinger calls the results “tremendously hopeful.”
“We can’t necessarily change IQ or symptom severity,” she explains. “But we can teach daily living skills.”
Along these lines, Autism Speaks is funding the TEACCH program to develop and deliver programs that help teens with autism develop the skills they need for into adulthood and employment. (Learn more about these research and community grants here.)

Saturday, May 16, 2015

Task Forces and Insurance Mandates

Mark Ritchey andSean Nicholson-Crotty have an article in Policy Studies Journal titled “Blue Ribbon” Commissions, Interest Groups, and the Formulation of Policy in the American States."

Despite the prevalence of state-level commissions convened to make policy recommendations, research to date has not systematically investigated the ways in which these bodies impact policy or degree to which state-level interest groups can use these institutions in that process. We argue that less powerful groups will favor these mechanisms and use them to get issues onto the institutional agenda and to increase the likelihood of legislative success. We also suggest that traditionally powerful groups will oppose the creation of reform-minded task forces, but will likely use them to hinder policy change once they are formed. We test this assertion in an analysis of the creation and recommendations of task forces convened to study autism insurance mandates, as well as the eventual adoption of such mandates, in the American states between 2001 and 2010. The results suggest that public and industry groups influence the formation and recommendations of task forces, but that the latter appears to have a relatively larger impact. They also suggest that a task force recommendation has a large impact on the likelihood of adopting an autism insurance mandate and that neither the insurance industry nor autism advocacy groups have a direct influence on adoption after controlling for the presence of a recommendation.

Thursday, May 14, 2015

Self-Advocates and Police Training: A New Maryland Law

In Washington, DC, WUSA-TV reports:
The state of Maryland took a big step forward for people with intellectual and developmental disabilities on Tuesday.
Governor Larry Hogan signed a bill that turns up the volume for the voices of people with intellectual and developmental disabilities by mandating that self-advocates become involved in the training of police officers.

For more than two years, Patti Saylor of Frederick, Maryland has been channeling her pain into fueling change. Patti Saylor says it was done in her son Ethan's honor,"This will be the Ethan Saylor alliance for self-advocates as educators and its essence is to recognize that people with intellectual and developmental disabilities should be at the table for anything we discuss."
It was January 2013, when Ethan died in police custody after being removed from a movie theater by three off-duty Frederick County Sherriff's deputies moonlighting as security, for not having a $12 movie ticket.
The Medical Examiner ruled Ethan's death a homicide by asphyxiation. A grand jury found no wrongdoing on the part of those deputies.
Patti Saylor's fight for justice and police training has included a civil lawsuit, petitions and the appointment of the first-ever Commission for the Effective Inclusion of Individuals with Intellectual and Developmental Disabilities. Now the people she's fighting for will be able to help train police and have a voice.

Wednesday, May 13, 2015

Graduation Rates and Disabilities

America's Promise has a new report titled Building a Grad Nation.  The section on disabilities shows that there is room for improvement:
Students with disabilities, specifically those students receiving special education services under the Individuals with Disabilities Education Act (IDEA), make up approximately 13 percent of all public school students nationwide.
The percentage of students identified for special education varies greatly from state to state, ranging from less than 9 percent of public school students in Texas to more than 17 percent of the students in Massachusetts and Rhode Island. Students with disabilities constitute significant portions of K-12 public school enrollment, so driving improvements will rest heavily on raising their graduation rates.
What percentage of students with disabilities are graduating from your state? Use this interactive chart to find out >>

The graduation rate for students with disabilities hit 61.9 percent in 2012-13, an increase of 2.9 percentage points since 2010-11, but still nearly 20 points behind the national average. Estimates show that the graduation rate gap between students with disabilities and students in the general population ranges across states from 3.3 percentage points to 58.8 points.
State variations of ACGR data, coupled with variation in state allowances for special education guidelines, contribute to the disparities keeping special education students from reaching their full potential. In addition chronic, negative misperceptions and disciplinary disproportionalities add to the challenge of keeping these students in school and on track to graduate.

It is estimated that 85 to 90 percent of special education students can meet regular diploma requirements with the right supports.

Tuesday, May 12, 2015

Putin, Again

At Ozy and the Huffington Post, Sean Braswell writes:
Despite the benefits and the aura of mystery surrounding him, Putin’s daily routine as a one-man brand, by some accounts, is rather pedestrian. Divorced, with two grown daughters, he lives a regimented existence of swimming, weight lifting, briefings, appearances and pre-written speeches; a cocoon in which others speak in hushed tones and never laugh in his presence and all food must be prepared by his own chefs to avoid poisoning. The 62-year-old president loves ice hockey and animals, but is usually distant. Pentagon analysts think he has Asperger’s, a form of autism. Perhaps he’s just bored or tired. “He looks emotionless, as if nothing really touches him,” one former interpreter told Newsweek. “As if he is worn out … [and] has spent so long as an icon he is not used to anyone penetrating.”
An earlier post quoted a piece in which political scientist and autism dad Mark Schrad demolished the Pentagon speculation.  Short form:  Russian leaders -- especially those from a KGB background -- tend to be a bit standoffish.

Monday, May 11, 2015

Class and Barriers to Service Use

Katherine E Pickard abd Brooke R Ingersoll have a article in Autism titled "Quality versus Quantity: The role of Socioeconomic Status on Parent-reported Service Knowledge, Service Use, unmet Service Needs, and Barriers to Service Use."  The abstract:
Research within the autism spectrum disorder field has emphasized the role of socioeconomic status in shaping parents’ ability to access services for their child with autism spectrum disorder. However, research has yet to explore the possible mechanisms underlying this relationship. This study sought to address this research gap by examining the following questions: (1) Does parents’ service knowledge mediate the relationship between parent socioeconomic status and parents’ autism spectrum disorder service use? (2) What are parents’ reported service needs and service barriers, and do these needs vary across higher and lower socioeconomic status groups? Quantitative results from 244 parents of a child with autism spectrum disorder indicate that parents’ autism spectrum disorder service knowledge partially mediates the relationship between parent socioeconomic status and parents’ autism spectrum disorder service use. Qualitative findings helped to clarify this relationship by suggesting that both high and low socioeconomic status parents are aware of their child’s basic autism spectrum disorder needs. However, low socioeconomic status parents more often report needing more information about services and more in-home services and emphasize that a number of structural barriers impede their ability to meet their child’s autism spectrum disorder needs. On the other hand, high socioeconomic status parents more often report a need for “higher quality services,” possibly reflecting their better recognition of best practice guidelines. These results highlight the need for a multi-pronged approach to tackling unmet service needs within the autism spectrum disorder field.

Sunday, May 10, 2015

Watering Down a Vaccine Mandate Bill

Tracy Seipel writes at The San Jose Mercury News:
A bill originally aimed at ensuring that virtually all schoolchildren are fully vaccinated is getting watered down -- but in a politically astute way that will most likely ensure its historic passage.

The authors of the incendiary legislation, Sens. Richard Pan and Ben Allen, plan to amend the bill in a way that essentially "grandfathers in" many public and private school students whose parents have claimed "personal belief exemptions" to vaccination requirements.

If Senate Bill 277 clears the Legislature and is signed into law by Gov. Jerry Brown, the amendment will mean that more than 13,000 children who have had no vaccinations by first grade won't have to get their shots until they enter seventh grade -- possibly exposing their classmates to infectious diseases such as measles and whooping cough. And nearly 10,000 seventh-graders who today aren't fully vaccinated may be able to avoid future shots all together because the state does not always require them after that grade.

More on the JAMA Study

An earlier post described a JAMA study reconfirming that vaccines do not cause autism.  Steven Salzberg writes at Forbes:
We’re still spending vast amounts of time and money trying to counter the ill effects of a discredited, retracted paper from 1998 that claimed to find a link between the MMR (measles, mumps and rubella) vaccine and autism. Even after the The Lancet retracted the study, and even after the British Medical Council revoked the medical license of its lead author, Andrew Wakefield, many people continue to withhold vaccines from their children because of a fear that somehow, despite all the evidence to the contrary, vaccines might cause autism. Vaccines, I hasten to add, have saved millions of lives and are probably the greatest medical advance of the past two centuries.
Now another study has appeared to add more weight to the evidence about the safety of the MMR vaccine. The new study by Anjali Jain and colleagues, just published in the Journal of the American Medical Association, looked at a huge number of children–95,727–for evidence of any link between autism and the MMR vaccine.
The results were not surprising, to those who have been following the science. To quote the conclusions directly: “Receipt of the MMR vaccine was not associated with increased risk of ASD [autism spectrum disorder], regardless of whether older siblings had ASD. These findings indicate no harmful association between MMR vaccine receipt and ASD even among children already at higher risk for ASD.”
That should settle it, right? But then, dozens of previous studies should have already settled this question. Unfortunately, due to the ongoing activism of anti-vaccine groups such as Age of Autism, (which already attacked this new study) and to conspiracy theorists such as Robert F. Kennedy Jr. (whom I wrote about last summer, and who was campaigning against vaccines in Vermont just last week), misguided claims that vaccines cause autism or neurological problems persist

Saturday, May 9, 2015

RFK Jr. Compares Vaccines and Cigarettes

At ThinkProgress, Sam P.K. Collins reports:
As Vermont lawmakers mull over the elimination of the state’s philosophical exemption for vaccines, a member of an American political dynasty is making a case for keeping them in place, arguing that the Centers for Disease Prevention and Control (CDC) has become a complicit partner in the spread of lethal substances.
Robert F. Kennedy, Jr., son of the former U.S. senator, attorney general, and presidential candidate, told state lawmakers that while he supports vaccination policies, some of the vaccines contain thimerosol, a mercury-based compound that could harm children.
However, those assertions — particularly the 1998 paper that said a vaccine-autism link exsisted — have been debunked. The CDC, American Academy of Pediatrics, and the Institute of Medicine, say that no evidence supports the view of some that Thimerosol causes autism and other brain disorders. In the 1990s, the Food and Drug Administration recommended its removal from vaccines given to infants as a precautionary measure despite the release of a report that dispelled any notion that the substance was harmful.

Vaccines have been effective in the near-eradication of many infectious diseases — including smallpox, polio, hepatitis A, tetanus, and varicella. Last month, a group of public health organizations announced that rubella had been eliminated from the Americas after 15 years. This happened due to the availability of the shot that protects against measles, mumps, and rubella (MMR).
During his testimony before the Vermont House Health Care Committee, Kennedy derided the CDC’s oversight process and said the agency has acted as a puppet of pharmaceutical companies, buckling under the pressure of highly influential pharmaceutical companies.

“You could design an epidemiological study that shows that cigarettes don’t cause cancer or sex didn’t cause pregnancy,” Kennedy said. “You just get rid of all the pregnant people or you get rid of all the people who have cancer and then you present your study,” he said. “That’s what CDC has been doing with these nine epidemiological studies that they point to.”
Despite their platform, anti-vaxxers don’t represent the sentiment of most Americans. A poll conducted by C.S. Mott Children’s Hospital earlier this year showed that more than 80 percent of parents believed that all children in daycare should be up to date on vaccines. Anti-vaxxers faced scrutiny after a measles outbreak among people who visited Disneyland earlier this year affected nearly 200 people over the course of three months. A study later confirmed that those who were infected had vaccination rates well below the recommended threshold, putting thousands of people at risk with just one sneeze.

Friday, May 8, 2015

Education Department Report on Civil Rights Complaints

Christina Samuels reports at Education Week:
Disability issues made up close to half of the complaints received by the U.S Department of Education's office for civil rights over fiscal years 2013 and 2014, far outpacing the next highest category for complaints, which was sex discrimination.

The figures come from a recently-released report from the civil rights office that was submitted to the White House and Secretary of Education. The report said that 19,939 complaints were filed over the two fiscal years, of which 9,941 were alleged violations of the Americans with Disabilities Act or Section 504 of the Rehabilitation Act of 1973. Both laws prohibit disability discrimination by public entities. Fiscal 2013 saw 9,950 complaints filed in all categories, and in fiscal 2014, 9,989 complaints of all kinds were filed.

That compares to 6,933 total complaints filed in 2010, and 5,533 complaints filed in 2005, to give an idea of the pace of the growth. But the report also states that OCR has also been resolving cases at a record pace; nearly 20,000 were closed in fiscal years 2013 and 2014.

Thursday, May 7, 2015

Autism Research: What Needs to Happen

LiveScience has an essay by Francesca Happé, president of the International Society for Autism Research (INSAR) and director of the MRC Social, Genetic and Developmental Psychiatry Centre at the Institute of Psychiatry, Psychology and Neuroscience at King’s College London.
Autism is a myth-magnet. You can barely look at a newspaper, magazine or newsfeed without finding something about autism: a new "miracle cure," a claim that "the gene for autism" has been discovered, or talk of scientists creating autistic mice. The reality, of course, is very different.
For autism research to take the next leap forward, we need perhaps three big initiatives. First, we need genetic research on the scale seen for schizophrenia : tens and eventually hundreds of thousands of participants, with good information about each one's skills and difficulties. This scale of research is needed to deal with that heterogeneity in the autism spectrum, in order to discover gene pathways, and hence mechanisms, to optimize the outcome for each individual.

Second, we need people with autism and their families to donate brain tissue when they die. These two aims are underway, thanks to initiatives (MSSNG and Autism BrainNet) funded by Autism Speaks and the Simons Foundation.

The third initiative is arguably even more important: Create open-access, globally accessible diagnostic tools for low-income settings. More than 80 percent of research is carried out in high-income countries, with a bias of samples for wealthy white individuals, but 80 percent of those living with autism are in low-income countries. Diagnostic tools are currently highly expensive and impractical in these settings.

Making ASD diagnosis and services available to all is not only a moral imperative, it is a scientific one — establishing rates and developmental trajectories in very different environments will shed light on the etiology and nature of autism. It is time for autism researchers to look outwards and think globally.

Tuesday, May 5, 2015

Study from Sweden: No Real Increase in Prevalence

Sebastian Lundström and colleagues have an article in the BMJ titled "Autism Phenotype Versus Registered Diagnosis in Swedish Children: Prevalence Trends over 10 Years in General Population Samples." The abstract:
Objective To compare the annual prevalence of the autism symptom phenotype and of registered diagnoses for autism spectrum disorder during a 10 year period in children.
Design Population based study.
Setting Child and Adolescent Twin Study and national patient register, Sweden.
Participants 19 993 twins (190 with autism spectrum disorder) and all children (n=1 078 975; 4620 with autism spectrum disorder) born in Sweden over a 10 year period from 1993 to 2002.
Main outcome measures Annual prevalence of the autism symptom phenotype (that is, symptoms on which the diagnostic criteria are based) assessed by a validated parental telephone interview (the Autism-Tics, ADHD and other Comorbidities inventory), and annual prevalence of reported diagnoses of autism spectrum disorder in the national patient register.
Results The annual prevalence of the autism symptom phenotype was stable during the 10 year period (P=0.87 for linear time trend). In contrast, there was a monotonic significant increase in prevalence of registered diagnoses of autism spectrum disorder in the national patient register (P<0 .001="" br="" for="" linear="" trend="">
Conclusions The prevalence of the autism symptom phenotype has remained stable in children in Sweden while the official prevalence for registered, clinically diagnosed, autism spectrum disorder has increased substantially. This suggests that administrative changes, affecting the registered prevalence, rather than secular factors affecting the pathogenesis, are important for the increase in reported prevalence of autism spectrum disorder.
From the article:
We believe that our findings indicate that the prevalence of autism spectrum disorder is not increasing in childhood. The research and clinical resources currently devoted to dealing with these problems relate to the possibly mistaken notion that there is an actual increase. This allocation of specific resources to study “the epidemic of autism” should not be allowed to spiral out of proportion. Other developmental disorders, such as intellectual developmental disorder, language disorder, and attention-deficit/hyperactivity disorder may recently have become overshadowed and seem to be missed diagnoses in many instances, where now only autism spectrum disorder is diagnosed (even perhaps when the autism symptomatology is relatively mild). There is growing evidence that these other developmental disorders are at least as good as or perhaps even better indicators of outcome (and hence, sometimes, need for intervention) as autism spectrum disorder in itself.42Research and clinical practice need to refocus on the child’s overall clinical situation and to acknowledge that autism is but one of the many Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations (ESSENCE).43 Children who are clinically impaired at an early age and who meet the criteria for autism spectrum disorder almost always have other developmental disorders and problems that need to be tackled.44 Clinics specialising in autism spectrum disorder are unlikely to be able to cater to all the needs of affected children and their families.

Monday, May 4, 2015

Bob Wright to Step Down

Autism Speaks announces:
Bob Wright, Co-Founder of Autism Speaks, the world’s leading autism science and advocacy organization, will step down as Chairman of the Board of Directors on May 1st. Mr. Wright has served as Chairman since he and his wife, Suzanne, founded Autism Speaks in 2005 when their grandson was diagnosed with autism. Brian Kelly, an original member of the Autism Speaks Board of Directors and its Executive Committee, has been elected Autism Speaks Chairman of the Board. Mr. and Mrs. Wright will remain on the Board as Co-Founders.
“Ten years ago, we started Autism Speaks because we were shocked at the lack of research, awareness, and access to care for the fastest growing developmental condition in the world,” Mr. Wright said in making this announcement. "We set out to change that from the bottom up, by giving a voice to parents and families, and from the top down, by pressing the medical research community, policy makers, and corporate leaders for action. We have made progress, but there is still work to be done. Brian Kelly has been a big voice at the Autism Speaks table and, as the new Chairman, he is prepared to carry the torch forward on behalf of our families.”

Mr. Kelly, 53, served as Chair of the Audit and Family Services Committees until his election as Chairman of the Board. In 2005, he and his wife, Tricia, donated $2.35 million dollars to The Autism Research and Training Center at UC Santa Barbara's Gevirtz Graduate School of Education that provided enhanced facilities for what is widely recognized as one of the nation's leading centers for the diagnosis, evaluation, and treatment of autism. In 2006, Mr. Kelly was a leader in the property acquisition and development of the Melmark New England campus in Andover, Massachusetts, a school that services individuals with autism and other disabilities. In 2013, the Kellys established the Brian & Patricia Kelly Postsecondary Scholarship Fund at Autism Speaks to support vocational and educational opportunities for young adults on the spectrum.
Mr. Kelly is co-founder of Eastern Real Estate LLC, a leading commercial real estate investment, development, and asset management firm. Mr. Kelly was raised in New York and then Boston, where he met his wife. They now reside in Santa Barbara, California with their six children. Their eldest child, Patrick, has autism.