Archive
Ask an Autism Society Expert
May 26, 2011
By Lars Perner
Q: It seems that I'll read one book about autism that says one thing, then read the exact opposite in another. About half of the things I read don't seem to apply to my son at all. About half seem to apply but, of course, not completely. Am I missing something?
A: There are large variations among people on the autism spectrum. Ironically, there may be larger variations among those on the spectrum than within the general population. This means that you will probably find some books that are very much “on target” and many more that seem very far off. Many books are written by—or about—specific individuals on the spectrum. In some of these books, you may be able to find some good “models” who match your son relatively well in many ways. Not only can these be helpful in dealing with problems that you are currently facing, they may also help you realize issues that you have not yet thought of and help you prepare for things that may come up in the future.
Q: My daughter’s teacher says that she doubts that Jenny’s “meltdowns” have anything to do with sensory overload. On some days, Jenny does well throughout the day. On other days, with no more noise or distractions, she acts out. I know that Jenny is trying hard to behave and she often comes home from school crying. What can I tell the teacher?
A: Persons on the autism spectrum often have “good” and “bad” days to a much greater extent than ordinary people do. On some days, it is going to take a lot less to trigger frustration than it will on others. Surprises and having to deal with changes can compound the exasperation of a bad day. It should also be noted that certain “sensory violations” may be much more evident to the person on the spectrum than to the detached observer; for example, other students nearby whispering to each other, a custodian handling noisy equipment in the hallway, a light flickering, or, on a rainy day, clothes giving off a vapor or making different sounds.
- Lars Perner, Ph.D., Assistant Professor, Marshall
School of Business, University of Southern California; Chair, Autism
Society Panel of People on the Spectrum of Autism Advisors
Topics:
Simple Checklist May Spot Signs of Autism by Age 1
April 28, 2011
By Autism Society
By Lauran Neergaard
AP Medical Writer
A simple checklist that parents fill out in the waiting room may help doctors someday screen for warning signs of autism as early as a baby's first birthday.
San Diego pediatricians tested the tool with more than 10,000 babies at their 1-year checkups, looking for such things as how the tots babble, gesture and interact with others.
The research, being published Thursday, is a first step in the quest for earlier autism screening. It's not ready for routine use, as more work is needed to verify its accuracy. But it also may prove valuable in finding more at-risk babies to study what causes the developmental disorder.
"There are subtle signs of autism at one year if you just look for them," said neuroscientist Karen Pierce of the University of California, San Diego, who led the study. "Let's just get these kids detected early and treated early."
Recent data suggest about 1 in 100 U.S. children has some form of autism, which ranges from mild to severe problems with behavior, communication and socialization. The American Academy of Pediatrics already urges autism screening during regular doctor visits at ages 18 months and 24 months. Yet a 2009 study found that on average, children aren't diagnosed until they're 5.
Experts say early therapy can lessen autism's severity, even if they don't know exactly what types will prove best. "The earlier you start, the better," said Dr. Lisa Gilotty of the National Institute of Mental Health, which helped fund the study.
Hence the interest in younger screening.
"This is very exciting work, to think we may be able to identify children with autism this early," said Dr. Susan Hyman of the University of Rochester and a pediatrics academy autism specialist, who wasn't involved in the new study.
But, she cautioned, it's not clear how best to do that: "I don't think screening for autism at 12 months is ready for prime time."
Thursday's study uses a 24-question checklist written in easy-to-understand terms that parents can answer in about five minutes. It was developed a few years ago to detect broader signs of language or developmental delays. Pierce signed up 137 pediatricians to use the questionnaire during every 1-year checkup and refer babies who failed for further testing. Those youngsters were re-evaluated every six months to age 3, when a diagnosis could be certain.
Of 10,479 babies screened, 184 who were sent for further testing followed through -- and 32 eventually were diagnosed with autism, Pierce reported Thursday in the Journal of Pediatrics.
That's consistent with expected rates of detection that young; Rochester's Hyman said some forms of autism don't become apparent until age 2 or even later.
Numerous other children were diagnosed with language delay or some other developmental problems, so that in the end, the screening accurately predicted some problem in 75 percent of those kids, Pierce calculated. But there were false alarms for 1 in 4, who had no problems.
The children began treatment at around 19 months. In addition, Pierce's program does MRI scans and other tests as part of broader research into autism's biological underpinnings, studies now limited by the few numbers of babies being identified as at risk when they're so young.
One big puzzle: Only a fraction of the total 1,318 babies who failed the initial screening were referred for follow-up. The study couldn't tell how much of that gap was recording error, or if doctors or parents weren't worried enough to follow up right away, or if families went elsewhere.
Still, the study shows early screening is feasible in the hectic everyday offices of regular pediatricians. That's important as scientists now develop various screening tests, said Geraldine Dawson, chief science officer of Autism Speaks, which co-funded the work.
Pierce says other cities should consider the screening -- but doctors first must know where to send families for follow-up testing. That can cost several thousand dollars, and state programs for free evaluation of at-risk children may have waiting lists.
For now, what should worry parents? Pierce's top concerns:
--Lack of what she calls "shared attention." Around age 1, babies should try to "pull your attention into their world," pointing to a bird and watching to see if you look, for example, or bringing you a toy, she said.
--Lack of shared enjoyment, where a baby may smile at mom but not engage if other people try peek-a-boo.
--Repetitive behaviors like spinning a car wheel rather than playing with the toy.
Language delays are worrisome if they accompany other problem signs, she said: "If they wave and they point, that's a good sign the brain is readying itself to be ready to speak."
Topics:News
Autism Society Applauds the Introduction of the “Safe Chemicals Act of 2011”
Legislation Would Protect American Families from Toxic Chemicals in Everyday Products
April 15, 2011
By Autism Society
FOR IMMEDIATE RELEASE
Media Contact:
Amanda Glensky
Media Specialist
Autism Society
301-657-0881 x 9015
aglensky@autism-society.org
(Bethesda, MD) April 15, 2011 -- Signaling their clear intention to protect families from toxic chemicals linked to serious health problems, Senators Frank Lautenberg, Barbara Boxer, Amy Klobuchar, Charles Schumer and others yesterday introduced the “Safe Chemicals Act” to upgrade America’s outdated system for managing chemical safety. (Click here to watch video of Sen. Lautenberg talking about the bill).
The Act responds to increasingly forceful warnings from scientific and medical experts -- including the President’s Cancer Panel -- that current policies have failed to curtail common chemicals linked to diseases such as cancer, learning disabilities, infertility, and more. The Senate’s Safe Chemicals Act builds on momentum from 18 states that have passed laws to address health hazards from chemicals, and numerous corporate policies of major American companies restricting toxic chemicals, including Staples, SC Johnson, Wal-Mart and Kaiser Permanente.
“Thousands of unchecked toxins in the American marketplace are highly detrimental to the 1.5 million Americans living with autism today because many have immune deficiencies that, when exposed to certain substances, complicate already existing health issues,” said Lee Grossman, Autism Society President & CEO. "As the leading autism organization exploring the link between environmental toxins and autism, the Autism Society thanks Senators Lautenberg, Boxer, Klobuchar and Schumer for standing up for American families.”
The Safe Chemicals Act would overhaul the 35-year-old Toxic Substances Control Act (TSCA), which is widely perceived to have failed to protect public health and the environment. Specifically the Act would:
- Require EPA to identify and restrict the “worst of the worst” chemicals, those that persist and build up in the food chain;
- Require basic health and safety information for all chemicals as a condition for entering or remaining on the market;
- Reduce the burden of toxic chemical exposures on people of color and low-income and indigenous communities;
- Upgrade scientific methods for testing and evaluating chemicals to reflect best practices called for by the National Academy of Sciences; and
- Generally provide EPA with the tools and resources it needs to identify and address chemicals posing health and environmental concerns.
“The whole world has woken up to the ragged holes in our federal safety net for chemicals,” said Andy Igrejas, Director of Safer Chemicals, Healthy Families, a coalition of 280 health, environmental and business groups, of which the Autism Society is the only autism-specific member. “We need a new law to put commonsense limits on toxic chemicals, both to protect American families and to give a leg up to American firms in a world market that increasingly demands safer products.”
Passed in 1976, TSCA’s presumption that chemicals should be considered innocent until proven guilty was a sharp departure from the approach taken with pharmaceuticals and pesticides. Since then, an overwhelming body of science has shown that presumption to be unfounded. Published studies in peer-reviewed journals have shown many common chemicals can cause chronic diseases and can be toxic even at low doses.
“It has been far too long since our nation's chemical substances policy has been reformed. This legislation is a critical first step in addressing the environmental health issues surrounding autism,” said Jeff Sell, Autism Society Vice President of Public Policy and General Counsel. “I am proud that the Autism Society is taking the lead in the autism community in efforts to educate and empower the public on the impact of the environment on their health and the health of future generations.”
About the Autism Society
The Autism Society, the nation’s leading grassroots autism organization, exists to improve the lives of all affected by autism. Together with more than 150 chapters nationwide, the Autism Society increases public awareness about the day-to-day issues faced by people on the spectrum, advocates for appropriate services for individuals across the lifespan, and provides the latest information regarding treatment, education, research and advocacy. For more information, visit www.autism-society.org.
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Topics:Environmental Health, News
Superman of Intelligence
April 14, 2011
By Tracy Thresher
I want my wonderful fans to know I love reading your inspirational letters. I would love to tell you the answers to your thought provoking questions. However, my process of communication takes much patience from all sides. My fan mail is the most important reassurance that I am doing the best work I possibly can. Knowing I am helping people consider the presumption of competence gives me the important feedback I crave. The people who have written me know the path to finding their own lives needs communication that is not limited by the choices presented by others. The most open communication happens when one has the mode to create their own language. Vocabulary is unique to individuals, just look at my friend Larry. To have our own expression gives us freedom to be engaging to others. Without having a full range of words we become mere shells of our intelligent minds unlike the supermen of intelligent thinking that we have become. My advice to my fans is: to continue questioning who you wish to become. Parents, please continue your search for the mode of communication your child needs to be open in their communication. It will be rough to get to the place you dream of. My path was tough too but it was worth the hard work to be in this place of being able to communicate. I hope to have more letters from my fans. Even if I do not answer your great letters it shows me you have the right thinking to find your path. Keep searching. I will see you in Ohio.
To read more from Tracy Thresher, check out his blog at http://www.wretchesandjabberers.org/tracy/. Don't forget to catch the Wretches & Jabberers tour this April: buy your tickets here.
Topics:Living with Autism
Together, We Can Improve Lives
Jeff Sell, Autism Society Vice President, Public Policy and General Counsel, is featured on Disability.gov for National Autism Awareness Month
April 6, 2011
By Autism Society
As published in Disability Blog:
The prevalence of autism continues to rise, and a growing number of families are facing the reality that there will be dramatic cuts to programs and services – unless we do something –NOW.
The Autism Society estimates that the lifetime cost of caring for a child with autism ranges from $3.5 to $5 million, and the United States is facing almost $90 billion annually in costs for autism. (This figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation and employment, in addition to related therapeutic services and caregiver costs.)
The direct and indirect costs of autism are staggering. Cost of treatment can be reduced by 2/3 with early diagnosis and intervention – THIS IS THE KEY. If we do not act, in 10 years, the annual cost will be approximately $200 to $400 billion, in light of the increased prevalence.
With tax revenue still declining from the recession and budget reserves largely drained, the vast majority of states are proposing deep and sweeping budget cuts that will hurt families by reducing necessary and proven services. These proposed cuts come at a time when autism is a national health care crisis, which affects every community throughout America. The current service delivery system is typically ineffective, unresponsive, inappropriate and inefficient for providing seamless and quality lifespan services. Nowhere is this more evident than in the adult services sector.
No person with autism should experience a delay in accessing services that can greatly improve his or her life. There is a clear and present need to expand access to treatments, interventions and services. Individuals with autism have the same rights as others to exert control and choice over their lives, to live independently and to participate fully in, and contribute to, their communities and society through full integration and inclusion in the economic, political, social, cultural and educational fabric of society.
While reducing the deficit is important to everyone, we must continue to work diligently to ensure that this is not done at the expense of the most vulnerable and underserved population of our society.
Reductions and Cuts to Medicaid and Long-Term Community Services and Supports for Individuals with Autism
We need to preserve the most essential programs for people with autism and other intellectual/developmental disabilities. Medicaid is the lifeline for most people with autism and other significant disabilities. Medicaid is the largest funding source of long-term individual and family supports in the federal and state developmental disabilities systems, and, for many, it is the primary source of health care payments.
However, most states are cutting Medicaid spending, which means hundreds of thousands with intellectual and developmental disabilities will remain on waiting lists across the country. Equally disconcerting is the loss of many qualified staff when jobs are eliminated due to Medicaid cuts.
The following services are at risk: dental; physical, occupational, speech and audiology therapies; prosthetic devices; glasses; case management; clinic services; personal care, self-directed personal care; hospice; ICFS; PRTF (psychiatric) for children under 21; rehabilitative services; home and community-based services; and the Program for All-Inclusive Care for the Elderly (PACE)...
Click here to read the rest of this article on the Disability.gov Disability Blog. Please share your thoughts in the comments!
Topics:Advocacy
Larry's Blog
April 6, 2011
By Larry Bissonnette
LARRY'S BLOG
Papers lack printed text to describe our experience of making movie star appearances last week in New York City Allowing time too for Larry and Tracy to try out the new iPad at the mega Apple store and meet J. Ralph at his unusually designed for great music studio, our Wretches and Jabberers crew put on no make up and opened many people's, potentially predisposed towards limited assumptions about disability and intelligence, eyes, minds, and ears to meaningfully presented in text and voice, more progressive opinions about people who love to relay lots of little and monumental messages like any normal person does but who need technology, and moral and physical support to do so.
Tracy and I are performers short on attractive movie star looks but like politicians and news anchors, we push out our lost-in-land-of-limited speech, topping ratings now, and Conan O'Brian-like thoughts and ideas.
We are thrilled that all of you fans continue to race along with us on our magic red carpet ride, penning our words across the country.
You can continue to follow Larry's blog posts at http://www.wretchesandjabberers.org/larry/
And don't forget to check in on Tracy at www.wretchesandjabberers.org/Tracy
Wretches & Jabberers is now on sale for National Autism Awareness Month. Buy your tickets today! http://www.amctheatres.com/wretchesandjabberers/
Topics:Advocacy
Positive Behavior Support
March 14, 2011
By Barbara Becker-Cottrill, Ed.D., Chair, Autism Society Panel of Professional Advisors; Executive Director, West Virginia Autism Training Center
Q: I hear the term “Positive Behavior Support” a lot, but I am not sure what it is and how it is applied to individuals on the autism spectrum.
A: Positive Behavior Support (PBS) is a broad term that incorporates the principles, strategies and techniques of the science of behavior to produce socially important behavior change and to achieve quality of life outcomes. It is typically implemented as a collaborative, rather than an expert-driven, process. While PBS is associated with providing supports to individuals with challenging behavior, in practice it can be applied to everyone, including schools and other large systems. Specifically for individuals on the autism spectrum, a PBS approach would ultimately result in a comprehensive PBS plan that would include conducting a functional behavior assessment (FBA) of challenging behavior. The purpose of the FBA is to find out why a specific behavior is occurring. It may be to gain attention, to escape a situation or to get something desired, and it may be reinforced by something sensory (i.e., picking at skin because it feels good). Once the function of the behavior is understood, a comprehensive PBS approach is then developed using strategies that will best address the function. For example, a young child who tantrums when asked to perform a difficult task may be exhibiting that behavior to escape from doing the task. If, after conducting an FBA, escape from difficult tasks was determined to be the function of the tantrum, plans to address tantrums might include the following: breaking up difficult tasks into smaller and easier steps, developing a system of reinforcement when those steps are achieved, teaching the child to ask for help, providing choices, arranging for a peer buddy to assist the child and reviewing the child’s overall curriculum to make appropriate adjustments. So, in summary, a PBS approach would focus on understanding the reasons for the behavior and would put strategies in place to prevent it and to teach adaptive skills.
In a PBS approach for an individual, the ultimate goal is to help the individual live a life of quality— a life they desire. And that can become a reality for all individuals with autism spectrum disorders if they have the right supports. You can learn more about individual-level PBS and school-wide PBS online. Two recommended sites are www.apbs.org and www.pbis.org.
Topics:About Autism, Living with Autism
Making Friends
March 14, 2011
By Barbara Becker-Cottrill, Ed.D., Chair, Autism Society Panel of Professional Advisors; Executive Director, West Virginia Autism Training Center
Q. My son is 7 now and really has not made any friends. He is mainstreamed into a regular reading group, but he struggles with reading out loud. I thought another student might be able to help him. How do I arrange for this to happen in the school?
A. A “peer buddy” or peer tutor” would be a great support for your son. There is much research on the effectiveness of utilizing peers as buddies and tutors. The benefits to the buddies can be as great as they are for the student who needs additional support. The formal way to arrange for a peer buddy would be to discuss it at your son’s IEP meeting. You can also bring it to the attention of his teacher. The teacher would select the peer tutor(s) (it is sometimes recommended that several peer tutors be assigned) and teach them about their role as a tutor for reading out loud. They can also be taught ways to socially interact with your son. Those strategies can be as simple as setting up the opportunity to play a favorite game of your son’s together. There are many good resources online for teaching classmates how to be peer tutors and buddies. The following link will take you to a review of literature on peer-mediated interventions to increase social skills:
http://uscm.med.sc.edu/autism_project/disalvo_article_mod_4.pdf
Topics:Education
