Archive
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IAN’s Bullying Survey: Addressing a Troublesome Issue
By Connie Anderson, Ph.D. Community Scientific Liaison, IAN Project at the Kennedy Krieger Institute
The Interactive Autism Network (IAN) has launched a national online survey on bullying and children with ASD to begin to address this troublesome issue in the lives of children on the autism spectrum.
As Community Scientific Liaison for this national online autism research project, I hear from families all the time, and bullying is one concern they raise often. Just to make it through a school day, they tell me, a child on the spectrum may have to contend with sensory issues, social challenges, and attention problems. Add bullying into the mix and what was challenging can quickly become impossible, leading to a sense of isolation and failure. I hear of children tormented at lunch or on the playground, when a personal assistant (if any) may be taking a break. I hear of children who are provoked into meltdowns or aggressive outbursts by other children who know how to push their buttons, maybe by attacking a cherished interest. (“Pokemon is stupid.”) I hear about cases where children with meltdowns are accused of being bullies, and may suffer consequences like suspension from school as a result.
I’m also the mother of a teenager with Asperger’s, who has had his sweatpants pulled down around his knees in Tech Ed class, and been tormented at lunch until he wants to hide in the Special Ed Resource room rather than go to the cafeteria. I’m the friend of a mom who decided to home school her daughter with ASD after constant bullying made school a place so wrought with anxiety she could no longer function there.
These stories are all too common. Anecdotes from adults with ASD, children with ASD, and their families indicate that individuals on the spectrum may be especially vulnerable to bullying, and a few small studies have provided some evidence of this. Now, the online Bullying and School Experiences of Children with ASD Survey will collect more in-depth information on a variety of bullying situations from a large number of families to explore the extent of these problems in the lives of children with ASD.
I hope you’ll spread the word about the survey to all who may be interested.
Learn more about the Bullying Survey.
Read an article about bullying and children with ASD.
Wandering Common & Scary; Research & Guidance Needed
The first major study on runaway behavior among children with autism confirms that it is both common and extremely stressful for families. Yet relatively few families are receiving professional help or guidance. These insights are among the preliminary results of the IAN Research Report: Elopement and Wandering, a project of the Kennedy Krieger Institute’s Interactive Autism Network (IAN) funded by Autism Speaks, the Autism Science Foundation, and the Autism Research Institute. For more, see our news report on the Autism Speaks Science page. And please leave us a comment about your experience.
December 14, 2010 IACC Meeting Summary
The Interagency Autism Coordinating Committee (IACC) met on Tuesday, December 14, at the Bethesda Marriott in Bethesda, Md. This is the fifth time the Full Committee has met in 2010. The IACC has made significant progress in the past year in the following areas: 1) releasing the 2010 Strategic Plan for Autism Research (February 3); 2) publishing the 2008 Portfolio Analysis Report (January 19); 3) releasing the 2009 Summary of Advances in ASD Research; 4) hosting first annual IACC Services Workshop, Building a Seamless System of Quality Services & Supports Across the Lifespan (November 8); and 5) updating the 2011 Strategic Plan for Autism Research.
IACC Chair and NIMH Director Thomas Insel, M.D. opened the meeting with a presentation on research developments since the last IACC meeting. Dr. Insel reported that autism was a “hot topic” at the recent Society for Neuroscience meeting with a 30 percent increase in abstracts focused on autism. The meeting also included a Public Symposium, Autism: Progress and Prospects, chaired by Gerald Fischbach, M.D., Scientific Director, Simons Foundation Autism Research Initiative.
The IACC meeting agenda was devoted primarily to consideration of updates to the Strategic Plan for Autism Research. Members of the Strategic Planning Subcommittee presented the IACC with modifications to the existing plan with appendices of new research advances, funding gaps and new research opportunities for each section of the plan. The Committee approved most of the recommendations made by the Subcommittee.
The Subcommittee’s recommendations included objectives to better understand wandering and fever in persons with ASD to Question 2 of the plan.
The Committee voted to retain the title of Question 3, “What caused this to happen and how can it be prevented?” Updates to Question 3 include reference to a Workshop “Autism and the Environment: New Ideas for Advancing the Science,” held September 8, 2010, which was co-sponsored by Autism Speaks and NIEHS. The meeting involved environmental scientists who have successfully identified environmental risk factors for other conditions, such as Parkinson’s Disease, in an effort to develop better strategies for discovering environmental risk factors contributing to the etiology of ASD. The committee voted to accept new research objectives, including in the following areas: epidemiological studies that take advantage of special populations or expanded existing databases to inform our understanding of environmental risk factors for ASD, to include adverse events following immunization (such as fever and seizures), mitochondrial impairment, and siblings of children with regressive ASD; and the role of epigenetics in the etiology of ASD, including studies that include assays to measure DNA methylations and histone modifications and those exploring how exposures may act on maternal or paternal genomes.
Recommendations for Question 4 were also accepted. These included research objectives to assess the effectiveness of interventions and services in broader community settings by 2015; to study interventions for nonverbal individuals with ASD; and to focus on research on health promotion and prevention of secondary conditions in people with ASD. Secondary conditions of interest include overweight and obesity, injury, and co-occurring psychiatric and medical conditions.
The IACC’s review of the Subcommittee’s recommendations for Question 5 included extensive discussion about how the IACC should address issues related to mortality, safety, and health within the IACC. New research objectives were approved to support research on health and safety issues leading to mortality.
The Question 6 recommendations on future needs of adults highlighted the urgent need for additional scientific research specific to this group. In 2010, several national advocacy groups devoted private resources to initiatives on adult services that have been brought to the IACC’s attention.
Finally, Question 7 is focused on the infrastructure and surveillance needs. The committee noted concern in funding availability for these needs. New research objectives were added. These included objectives to establish a robust network of clinical research sites that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g. DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments; and to create an information resource for ASD service providers, researchers, families, and people with an ASD which serves as a portal to obtain the most recent evidence-based reviews and plans for intervention, services, and support.
“Public input has been critically important to the Strategic Planning process,” says Geraldine Dawson, Autism Speaks’ chief science officer and IACC member. “Based on feedback received from both consumer and professional stakeholders during the Request for Information phase, the recommended Strategic Plan will include new objectives that enhance the focus on environmental factors and lifespan issues affecting adolescents and adults living with autism.”
The afternoon session began with the Public Comments portion of the meeting. Ms. Idil Abdull, parent advocate and co-founder of the Somali American Autism Foundation, thanked the IACC for its decisive action on exploring the Somali autism issue and urged it to sustain this effort. Also presenting during Public Comments was Mrs. JaLynn Prince, President and Founder of the Madison House Foundation, based in Montgomery County, Md. The mission of the Madison House Foundation is to identify the lifelong needs of adults with autism and fill those needs through education, awareness, and advocacy. Mrs. Prince encouraged the IACC to explore the expertise of organizations like the Madison House which have been dealing with adult service issues in local communities throughout the country.
The agenda also included several updates on issues raised during recent meetings. At the October meeting, the IACC asked Autism Speaks, NIEHS and CDC to investigate issues raised concerning the Somali population in Minnesota. Coleen Boyle, Ph.D., Acting Director, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention and IACC Member, Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences, and Autism Speaks’ chief science officer and IACC member Geraldine Dawson, Ph.D. provided an update on their efforts with respect to this issue. It was reported that collectively $350,000 has been committed to begin to study this issue, with Autism Speaks contributing $100,000 to this effort.
In response to a presentation on Wandering and Autism at the October meeting, the IACC created a subcommittee on safety issues the first task of which is to write the secretary of HHS on the recommendations that were made during the meeting. Lyn Redwood, R.N., M.S.N. Co-Founder and Vice President, Coalition for Safe Minds and Co-chair, Safety Subcommittee, and Alison Singer, President, Autism Science Foundation and Co-chair, Safety Subcommittee, reported on the Subcommittee’s recent meeting. The IACC authorized the Subcommittee to proceed with its information gathering in order to finalize the letter to the secretary. To inform this letter, the Subcommittee’s representatives will meet with the Departments of Education and Justice and will develop a Request for Information (RFI) on wandering. It was also announced that Autism Speaks and the Autism Science Foundation will fund a study utilizing the Interactive Autism Network (IAN) on this issue.
Services Subcommittee Co-chairs Ellen W. Blackwell, M.S.W., Centers for Medicare and Medicaid Services and Lee Grossman, President and CEO, Autism Society, reported on their Services Workshop on November 8 and subsequent subcommittee meeting. The goal of the workshop was to determine a set of recommendations to make for the Secretary of HHS. The Subcommittee is using slides from the workshop to inform the recommendations to be sent to the Secretary. The Subcommittee believes another workshop on services will be necessary next year.
Finally, the IACC solicited the input of IACC member Alan E. Guttmacher, M.D., Director Eunice Kennedy Shriver National Institute of Child Health and Human Development, on the implications of the proposed addition to Question 1 of the Strategic Plan to conduct five studies on the ethical, legal and social implications of autism screening research, including at least one study on the implications of potential future genetic testing. The committee agreed to look at what other diseases have done in this area and will convene a workshop next year.
The IACC is scheduled to meet again on January 18 and will finish its update of the Strategic Plan’s Introduction section at that meeting before approving the plan.
How can families participate in research studies?
“Got Questions?” is a new weekly feature on our blog to address the desire for scientific understanding in our community. We received over 3000 responses when we asked what science questions were on your mind. We answered a few here and the Autism Speaks Science staff will address the other themes we received in this weekly post.
Great question! We hope more families wish to get involved in research. One easy way to get started is through an online portal called the Interactive Autism Network (IAN) at ianproject.org. This site allows you to participate in research from your home. You can also find studies and participate in programs supported by Autism Speaks. If you are interested in a clinical trial (which is not just about treatment, but also diagnosis, identifying subtypes, etc.) you can find more information at clinicaltrials.gov.
Grandparents: Near or Far, Still Amazing
This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.
Here’s an interesting family photo from 1934. In it is my mother at age four, my grandmother, my great-grandmother (who was partially paralyzed by polio), and my great-great grandmother. It was the Depression. These four generations lived together in a small row house in Philadelphia. Like many other multi-generational households, they cooked and ate meals together, shared economic resources, and raised the children. Though the percent of the population living in multi-generation households has declined since then (although it is now on the rise), grandparents and other members of the extended family still play a large role in helping raise children – especially when a child has special needs.
With the help of grandparents, who wanted to share their experiences and learn about the role of other grandparents, the researchers at the Interactive Autism Network (IAN) developed the Grandparents of Children with Autism Spectrum Disorders Survey. We knew that grandparents played a major role in helping their adult children and their grandchildren. But, we wanted to learn (using scientific methods) how grandparents support the emotional and economic needs of their adult children and their affected grandchildren. We also wanted to know how having a grandchild with ASD had changed their lives.
More than 2,600 grandfathers and grandmothers of grandchildren with ASD participated in this survey, which we administered on the Internet. They came from all 50 U.S. states and the District of Columbia, and every kind of locale, with 17% from cities, 23% from rural areas, and 60% living in the suburbs. They represented a wide age range, from people in their 40s to people in their 80s, and had varied educational backgrounds. Though the goal of the survey was to gain knowledge about the nature and extent of the role of grandparents, we also wanted to find out the support, services, and information needs of grandparents.
Participating grandparents told us some very interesting things:
- So that the grandparent could help his/her grandchild, 20% of the families had moved closer to each other. Nearly 8% had combined households.
- About 30% were the first to notice that there was a problem in their grandchild’s development.
- Nearly 90% felt that the experience of facing their grandchild’s situation together had brought them and their adult child closer.
- About 6% of the grandparents told us that a family situation had become so untenable they had taken on the role of parent.
- While 86% of the respondents were coping very well or fairly well, 14% reported that they were coping poorly.
Find out more IAN’s two-part series, Grandparents of Children with ASD.
Learn about the Interactive Autism Network (IAN) and how you can participate.
Interested in statistics on the multi-generational household in the United States? Visit the Pew Research Center’s The Return of the Multi-Generational Family Household.
How Cool is That?
This is a guest post by Cheryl Cohen, who is the Online Community Director of IAN Project at Kennedy Krieger Institute.
A few weeks ago, in northern Maryland, we received the gift that kept on giving: two back-to-back blizzards that delivered nearly four feet of snow. Housebound for several days, I began to gain a better understanding of the phrase stir crazy, and I turned, like many people, to the Internet for solace. Next time you are snowed in, stir crazy, or even simply curious about what families are saying about autism spectrum disorder (ASD), you should know about the Interactive Autism Network (IAN) and IAN State Stats, in particular.
IAN State Stats is a tool that shows you how families have responded to questions administered by IAN Research, the largest online autism research project. IAN State Stats summarizes data on complex issues to indicate the overall status and trends in autism treatment, diagnosis, and expenditures. People involved in policy and public health decisions use these tools to compare state performance against national performance and to signal key issues to be addressed through policy interventions and other actions. The data used for analysis reflect the current IAN Research data.
Here is one of the charts from IAN Stat Stats:
This graph shows the mean (average) amount of time in months between the time that parents first felt that something was wrong with their child’s development to the time that the child was first diagnosed with an ASD. It compares the data reported by research participants in Maryland (the state that I selected) to the U.S. as a whole. Considering the vital importance of early intervention, this lag time (gap) between the time parents of children with ASD recognize that something is wrong and when they are able to get a diagnosis is of interest to policy makers and advocates.
The information presented is based on an analysis of responses from the questions:
- How old was this child when you FIRST became concerned that something was wrong with his/her development? (Choices include a range of ages)
- What was this child’s FIRST autism spectrum disorder (ASD) diagnosis?
- When did this child receive this FIRST ASD diagnosis?
You can see that the lag time is very long, and that it varies widely by ASD diagnosis. You can also see that the lag time in Maryland is not very different than that in the U.S. as a whole.
If you look at a state in which people have less access to care, such as Louisiana (below), you can see that the lag time for most ASD diagnoses is much longer there than for the U.S.
Though these results are discouraging, exploring the IAN data is a pretty cool way to spend a snowy day.
Find out more about IAN State Stats and how you can participate in the IAN Project.
5|25: Celebrating Five Years of Autism Science Day 22: Combined Therapies Hold Promise for More Effective Treatments
In honor of the anniversary of Autism Speaks’ founding on Feb 25, for the next 25 days we will be sharing stories about the many significant scientific advances that have occurred during our first five years together. Our 22nd item, Combined Therapies Hold Promise for More Effective Treatments, is from Autism Speaks’ Top 10 Autism Research Events of 2009..
Just over three years ago the FDA’s landmark approval of risperidone for the treatment of ASD represented a significant breakthrough for the autism community. Since then other large-scale autism studies have sought FDA approval for drugs that target core or associated symptoms for autism, but unfortunately few of these trials have proven successful. In 2009, taking a cue from other disorders such as ADHD where a combined effect of both medication and behavioral therapies has proven fruitful, researchers published the first successful combined randomized controlled trial for ASD. The paper in the Journal of the American Academy of Child and Adolescent Psychiatry demonstrated that combined pharmacological and behavioral treatments was more effective than pharmacological treatment alone for reducing challenging behaviors.
Risperidone is approved for reducing aggression and irritability in children and adolescents with autism. However, its use still presents a number of challenges to clinicians. Like other atypical anti-psychotics it can have adverse side effects including weight gain, potentially leading to increased risk for obesity, and GI symptoms such as diarrhea and constipation, which can already be problematic for children with ASD. Clinicians must therefore balance the benefit of treating the problem behaviors with the potential for creating new health challenges for the child. On the other hand, behavioral therapies have been shown to be one of the most reliably effective treatments for improving problem behaviors with limited side effects. Combination therapies create a synergistic therapeutic environment in which medication allows a child to get more from behavioral therapies and, at the same time, the benefits of behavioral therapy may mean lower doses of medication are required.
A new multi-site study by the Research Units on Pediatric Psychopharmacology Autism Network, the same group that conducted the pivotal studies leading to the approval of risperidone, investigated whether combining risperidone treatments with a simultaneous behavioral intervention would be more effective than medication alone. Their 24-week study of 124 children ages 4-13, compared a treatment regime of risperidone alone with a combined treatment regimen of risperidone and a parent training program that followed the principles of applied behavioral analysis. While both the combined and medication-only treatments reduced the severity of non-compliant behaviors, the combined therapy resulted in a significantly greater reduction while using lower doses of risperidone. The combined therapy was also better at reducing other challenging behaviors, such as irritability and hyperactivity.
This study provides hope for a wider range of available treatments and greater flexibility for clinicians who should be encouraged to use combined approaches in cases where medications or behavioral interventions are not effective on their own. Confirming the effectiveness of coordinated treatments that take full advantage of the benefits of both pharmaceutical and behavioral approaches also demonstrates the continued need to support research establishing the most effective treatments in all realms. Finally, the vast majority of clinical trials conducted to date have only addressed how an individual treatment compares to a placebo. Very few studies have been conducted that make head-to-head comparisons of two or more treatments as was done here, so the success of this trial will also serve to highlight the utility of “comparative effectiveness trials” for determining the best treatments for ASD.
Did you know?: Autism Speaks’ funded Interactive Autism Network (IAN) is a web-based family registry and social network that brings together thousands of families with autism research and provides a forum for families to report information about their experiences. In a recent study on over 5000 children in IAN, 35% of parents reported that their children were taking at least one psychotropic medicine and the use of these drugs increased with age. The incidence of a comorbid condition such as seizures, ADHD or anxiety increased the likelihood of medication use. The IAN authors also reported on correlations between insurance access and use of multiple medications, noting that those children using public insurance plans (such as Medicaid) tended to be on more medications, possibly due to an inability to get coverage for behavioral therapies.
