Friday, August 22, 2014

A Forum in South Dakota

In Sioux Falls, SD, the Argus Leader reports on a public forum about insurance coverage.
Some spoke of their surprise to learn that Wellmark, the state’s biggest insurer, would be dropping its coverage of the ABA therapy. The therapy costs more than $100,000 a year.
“We’re a middle-class family. If you’re an autism family, you’re going broke fast,” said Richard Zeck, a Brookings resident whose 12-year-old son lives with the disorder.
Zeck said his family lived 11 years in North Dakota, where state policy mandated generous coverage of applied behavioral analysis, then moved to South Dakota, where there was no help.
“The difference is appalling,” he said of the two Dakotas.
...
Dr. Tim Gutschall, chief medical officer for Wellmark in Des Moines, then addressed the group. He listed several forms of less intense autism therapy that Wellmark covers, then told why Wellmark does not cover the ABA therapy.
Autism is not entirely a medical issue, but also an educational issue, and the ABA therapy has had inconsistent results, he said. He asked why coverage should be mandated when the science is changing so fast.
With that comment, Ron Larson, hurried back to the microphone to scold Gutschall.
“We’re not here to be lectured,” Larson said. When insurers such as Wellmark take a position on legislation, “they’re going to make money off it,” he added.

Thursday, August 21, 2014

Down Syndrome and Abortion

There is currently no prenatal test for autism.  If there were, as in the case of Down Syndrome, the issue of abortion would come up.  The Guardian reports:
The scientist Richard Dawkins has become embroiled in another Twitter row, claiming it would be “immoral” to carry on with a pregnancy if the mother knew the foetus had Down’s syndrome.
The British author made the comment in response to another user who said she would be faced with “a real ethical dilemma” if she became pregnant and learned that the baby would be born with the disorder.
Dawkins tweeted: “Abort it and try again. It would be immoral to bring it into the world if you have the choice.”
He faced a backlash for his comment, with one mother, who has a child with the genetic condition, saying: “I would fight till my last breath for the life of my son. No dilemma.”
Dawkins later defended his view, saying he would not apologise “for approaching moral philosophic questions in a logical way”. He went on to point out that Down’s syndrome foetuses are aborted in many cases, and that abortion was a woman’s choice.

Important New Review of Behavioral Therapies

The Agency for Healthcare Research and Quality has a new report, Therapies for Children With Autism Spectrum Disorder: Behavioral Interventions Update.  An excerpt:
Since our previous review in 2011, there has been a significant increase in the quantity and quality of studies investigating behavioral interventions. These new studies add to the prior report and strengthen our ability to make conclusions about the effectiveness of behavioral interventions. Of the 45 comparative studies of behavioral interventions (29 RCTs [randomized controlled trials]) in the 2011 review, we considered only 2 as good quality. Among the new studies described in this current review, 19 studies are good quality, and 48 of the 65 included studies are RCTs.
Evidence from the original report and this update suggests that early behavioral and developmental intervention based on the principles of ABA delivered in an intensive (>15 hours per week) and comprehensive (i.e., addressing numerous areas of functioning) approach can positively affect a subset of children with ASD (Table B). Across approaches, children receiving early intensive behavioral and developmental interventions demonstrate improvements in cognitive, language, adaptive, and ASD impairments compared with children receiving low-intensity interventions and eclectic non–ABA-based intervention approaches.
Since our previous review, there have also been substantially more studies of well-controlled low-intensity interventions aimed at parent training for comprehensive impact on social communication skills. Although parent training programs modified parenting behaviors during interactions, data are more limited about their ability to improve broad developmental skills (such as cognition, adaptive behavior, and ASD symptom severity) beyond short-term language gains for some children.
A growing number of studies of improved quality demonstrated positive effects of social skills interventions on at least one outcome measure, but a lack of consistency in the interventions studied and outcome measures used makes it difficult to understand specific effects of different intervention modalities.
A growing evidence base also suggests that children receiving targeted play-based interventions (e.g., joint attention, imitation, play-based interventions) demonstrate improvements in early social communication skills. Children receiving targeted joint attention packages in combination with other interventions show substantial improvements in joint attention and language skills over time. There is also evidence across a variety of play-based interventions that young children may display short-term improvements in early play, imitation, joint attention, and interaction skills. However, evidence that these short-term improvements are linked to broader indexes of change over time is not substantial.
CBT [cognitive behavioral therapy] for associated conditions such as anxiety had the largest number of high-quality studies in the current review. A strong evidence base now suggests that school-aged children with average to above average intelligence and comorbid anxiety symptoms receiving manualized CBT therapy show substantial improvements in anxiety compared with wait-list controls. Table B summarizes the strength of the evidence for each category of intervention.

Wednesday, August 20, 2014

A Center for ASD Adults

In Seattle, KING-TV reports on a program for adults with autism:



The report discusses the need for community centers for ASD adults:
Now that place exists: The Alyssa Burnett Adult Life Center in Bothell.
Program manager Tammy Mitchel said the approach is loosely based on the parks and recreation model. Goals are modest but also monumental.
The focus is on learning but also on fun.
Dr. Gary Stobee said the need for social connections increased in the 20s.
"They're still not that good at it and they need places to practice. And what better place than this safe environment to potentionally meet others that have similar interests, and to continue to grow socially," Stobee said.
Word has gotten out about the community center. Seattle Children's has received calls from Alaska, Colorado, California, Idaho and Montana asking about these services. That's how great the need is.
More information on the Alyssa Burnett Adult Life Center.

Tuesday, August 19, 2014

Trends in Childhood Disability

The percentage of children with disabilities due to neurodevelopmental or mental health conditions continues to rise, particularly among children in more socially advantaged households, according to a Children’s Hospital of Pittsburgh of UPMC analysis that appears in the September issue of Pediatrics.
Results of the study, led by Amy Houtrow, M.D., Ph.D., M.P.H., chief, Division of Pediatric Rehabilitation Medicine at Children’s Hospital, found that while there has been a decline in physical health-related disabilities by approximately 12 percent, there was a large, nearly 21 percent rise in disabilities classified as neurodevelopmental or mental health in nature.
The researchers studied data from the National Health Interview Survey conducted by the U.S. Centers for Disease Control and Prevention between 2001 and 2011, evaluating each child’s ability to perform activities at home and school.
Although children living in poverty have the highest rates of disability, children living in families at or above 400 percent of the federal poverty level reported a 28.4 percent increase in disabilities over the past 10-year period.
Dr. Houtrow and the researchers offered four reasons that may explain the increased rates of disability related to neurodevelopmental or mental health conditions:
  • shifts in diagnostic criteria
  • overall increases in rates of certain problems including autism
  • increased awareness of these conditions
  • the need for a specific diagnosis to receive services such as early intervention 
“This study demonstrates what a lot of pediatricians have been noticing for several years – that they are seeing more neurodevelopmental and mental health problems in their clinical practices,” said Dr. Houtrow, who also is an associate professor of Physical Medicine & Rehabilitation and Pediatrics and vice chair in the University of Pittsburgh School of Medicine’s Department of Physical Medicine and Rehabilitation. “As we look toward the future, the pediatric health care workforce and system needs to adapt to assure the best possible health and functional outcomes for children with disabilities related to neurodevelopmental and mental health conditions.”

Monday, August 18, 2014

Study Finds No Increase in Prevalence

A release from the University of Queensland:
A University of Queensland study has found no evidence of an increase in autism in the past 20 years, countering reports that the rates of autism spectrum disorders (ASDs) are on the rise.
The study, led by Dr Amanda Baxter from UQ’s Queensland Centre for Mental Health Research at the School of Population Health, was a first-of-its-kind analysis of research data from 1990 to 2010.

Dr Baxter said she and her colleagues found that rates had remained steady, despite reports that the prevalence of ASDs was increasing.
“We found that the prevalence of ASDs in 2010 was one in 132 people, which represents no change from 1990,” Dr Baxter said.
“We found that better recognition of the disorders and improved diagnostic criteria explain much of the difference in study findings over time.”
Part of the Global Burden of Disease project, this is the largest study to systematically assess rates and disability caused by ASDs in the community, using data collected from global research findings in the past 20 years.
ASDs are chronic, disabling disorders that stem from problems with brain development.
They affect people from a young age and are among the world’s 20 most disabling childhood conditions.
The study shows that about 52 million children and adults around the globe meet diagnostic criteria for an ASD.
Dr Baxter said researchers hoped the study would help guide health policy and improve support for those with ASD and their families.
“As ASDs cause substantial lifelong health issues, an accurate understanding of the burden of these disorders can inform public health policy as well as help allocate necessary resources for education, housing and employment,” she said.
The study, a collaboration with the University of Leicester and the University of Washington’s Institute for Health Metrics and Evaluation, is published in Psychological Medicine journal.

Sunday, August 17, 2014

The Aaron Hill Beating

Too many posts have had to mention violence, bullying, and abuse of people with autism and other disabilities.

The Huffington Post reports:
Two people have been arrested after a vicious beating of a child with autism went viral.
Andrew Wheeler, 18, was arrested last week for allegedly beating 16-year-old Aaron Hill at a party in Okeechobee, Florida last Friday, according to WPTV.
...
Evadean Lydecker Dailey was also arrested in connection with the party. She is accused of giving the teens at the party alcohol, according to WPBF.

Outrage over the video spread quickly and sprouted the Facebook group and hashtag #JusticeForAaron.
The campaign has attracted the attention of tens of thousands, including celebrities like Breaking Bad's Aaron Paul.
In a follow up report, WPTV says Wheeler's family now fears for their lives.