Posts Tagged ‘ autism speaks ’

Tools for Parents Who Worry About Autism

Friday, September 2nd, 2011


In our October issue, out any day now, we have a special report by Darshak Sanghavi, M.D., called “Understanding Autism.” In it Dr. Sanghavi, a member of the Parents advisory board, explores what is and isn’t known about autism’s causes, how the condition is identified and diagnosed, and the growing trend among researchers to focus on early intervention to help children with autism succeed.

What many parents of young children will want to know, of course, is how they can tell whether their child might be at risk for autism (note that they do not diagnose). And there are two important tools available to help moms and dads do just that—fairly simple questionnaires that take only a few minutes to complete. As we explain in our story:

Perhaps the most common one is the Modified Checklist for Autism in Toddlers (M-CHAT), which can be used on children starting at 18 months of age. It consists of two dozen Yes/No questions such as “Does your child ever use his finger to point, to ask for something?” If two or more answers indicate problems, the test usually is considered positive.

A relatively new tool, the Infant-Toddler Checklist, helps determine whether a child from 6 months to 24 months is at risk for autism or a developmental or language delay. Its reliability hasn’t been studied as extensively as other tools. As with M-CHAT, it does not diagnose; it’s meant to help pediatricians decide whether they should refer a child for further evaluation.

Some of the questions might freak out parents needlessly. For example, the M-CHAT asks if a child seems “oversensitive to noise” or wanders “with no purpose,” which are both normal behaviors for many toddlers. But for the purposes of the screening test, it doesn’t count if the action has happened only once or twice — it needs to happen regularly. If you feel uneasy as you answer the questions, try not to panic. But do talk to your pediatrician, who will help determine what you should do next.

Always remember: A positive test doesn’t necessarily mean your child has autism, just as only a fraction of women with a positive mammogram will go on to have an abnormal breast biopsy. “It’s very likely, though, that a child who tests positive has some kind of delay that can benefit from early intervention,” says Geraldine Dawson, Ph.D., chief science officer of Autism Speaks, the country’s largest autism science and advocacy group.

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New Bill Proposes Update to the Combating Autism Act

Friday, May 27th, 2011

autism-speaks-logoThe Combating Autism Reauthorization Act (CARA) was introduced in Congress yesterday as an update to the original Combating Autism Act (CAA) of 2006 which will expire in September 2011. 

Under the CAA, the government authorized $1 billion to be used for research over five years.  The research helped improve methods for autism screening and detection in infants and toddlers; identify genes associated with autism that may help with early detection; and develop standard care guidelines, training, and treatments to deal with autism issues.

Supported by Autism Speaks and a bi-partisan senate, the new bill seeks to extend government funding toward autism research, treatments, and planning  for three more years.

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New Study Estimates Higher Autism Rate in South Korea

Monday, May 9th, 2011

A new study published in the American Journal of Psychiatry reports that an estimated 1 in 38 children (with a higher number of girls) in South Korea have autism.  The research was conducted on 55,266 school children (between 7 to 12 years old) in the Ilsan district of Goyang city. 23,234 parents participated in a screening questionnaire that was provided.   About 1,214 children tested positive for autism, but less than one-third were evaluated further and officially diagnosed with autism.

Researchers do not believe that more children have autism in South Korea; instead, the higher number is contributed to longer, in-depth research (though only on children listed in the school system).  The study was compiled from five years of research and was funded by various organizations including Autism Speaks and National Institute of Mental Health. Currently, in America, the Centers for Disease Control (CDC) estimates 1 in 110 children have autism.  Most of the data about children with autism are compiled from medical and education records, not from surveys.

The results from this study have encouraged researchers to focus more on global autism research (particularly in India, Mexico, South Africa, and Taiwan) through long-term surveys on children inside and outside of schools.

Read more about the South Korea autism study at New York Times, CNN Health, and Yahoo! News.

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Participate in a Survey About Autism and Pregnancy

Tuesday, April 26th, 2011

In an ongoing effort to understand autism spectrum disorder (ASD), the Interactive Autism Network is launching another online survey (the Pregnancy and Birth Questionnaire) about the pregnancy and birth experiences of mothers raising children with autism.  Researchers will analyze any “potential links between prenatal, pereinatal, or neonatal factors” and autism, such as specific medications, foods, fertility treatments, ultrasounds, pregnancy and birth complications (including illness or infection),  and induced labor.

IAN is looking for mothers  in the U.S. with children (between ages 0 to 17) who do and don’t have autism to participate in the survey.  Mothers who do have kids with autism must have given birth directly to the child. Register for the online survey on the Interactive Autism Network’s website.

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Preliminary Results from Survey on Autism and Wandering

Friday, April 22nd, 2011

Earlier this month, we urged parents to participate in a survey about autism sponsored by the Interactive Autism Network.  The survey aimed to study and understand wandering behavior among children and adults with autism.

In just three weeks, the Interactive Autism Network has received 856  survey participants, primarily parents with children who are autistic.  Preliminary data from the survey, focusing just on children, was released this week in the report, ”IAN Research Report: Elopement and Wandering.”  IAN discovered that about 50% of kids with autism attempted to wander off between the ages of 4 to 10 and about 30% continued to wander between ages 7 to 10.  Half of the parents had kids who wandered off long enough to cause significant worry and concern.  Plus, about 35% of the kids were  rarely able to communicate their name, address, or phone number.  

The survey also reported 58% of the parents ranked wandering as the most stressful behavior related to autism, and 64% were prevented from pursuing family activities because of the wandering.  Only 19% of the parents have  received guidance from a psychologist or mental health professional while only 14% have received guidance from a pediatrician or physician.

A high number of parents (67%) also reported they didn’t see any seasonal pattern with wandering, and the top 5 reasons (in order) they believed wandering happened was because their kids: enjoyed exploring, liked to visit a favorite place, wanted to escape demands and anxieties, wanted to pursue a special topic, and wanted to escape sensory discomforts.  Read the full report of the preliminary results at Interactive Autism Network.

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Participate in a National Survey About Autism and Wandering

Wednesday, April 6th, 2011

The Interactive Autism Network, an online project that aims to collect data about autism spectrum disorder (ASD), recently launched the first nationwide survey to study the experience of wandering (or elopement, bolting, and escaping) among people with autism. 

Individuals with autism have a higher tendency to wander for extensive amounts of time, putting them at risk for trauma, injury, or death.  “Although similar behavior has been studied in Alzheimer’s disease and autism advocates identify elopement as a top priority, virtually no research has been conducted on this phenomenon in ASD,” states Dr. Paul Law, Director of the IAN Project at the Kennedy Krieger Institute.  Recently, 4-year-old Jackson Kastner drowned after wandering away from his home in Monroe County, MI, while four years ago, a 7-year-old boy wandered out of his classroom and ended up at a four-lane highway.  Despite being returned to school safe and sound, poor school supervision continues and he still wanders out of the classroom today.

To understand this wandering behavior and determine who is at risk, IAN is asking all families in the U.S. autism community to participate in the survey, which is funded by the Autism Research Institute, Autism Science Foundation, Autism Speaks, and Global Autism Collaboration.  IAN is asking for information  from families with children and dependent adults who either do or do not wander. To take part in the survey, you must register online at  If the necessary sample size for the survey is reached, preliminary data might be available on April 20, 2011.

The survey will help researchers answer important questions:

  • How often do individuals with ASD attempt to elope? How often do they succeed? Under what circumstances?
  • Which individuals with ASD are most at risk? At what age?
  • What burden do efforts to thwart elopement behavior place on caregivers?
  • What can be done to protect individuals with ASD and support their families?

If you have a child with autism, please consider taking part in this survey.

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10 Best Places to Live for Families with Autistic Kids

Monday, April 4th, 2011

An online survey recently conducted by Autism Speaks, the largest autism advocacy organization in the U.S., cites the greater New York area, Los Angeles, Chicago, Cleveland, Philadelphia, Boston, northern New Jersey, Minneapolis/St. Paul, Seattle, and Milawaukee as the 10 best places to live for families dealing with autism

The national survey was completed by 848 out of 1,400 people across the 48 continental United States and the District of Columbia.  These places ranked higher because survey takers were happy with the local autism services and resources (even if they had to travel an hour), the educational programs, the access to good clinical and medical care, the availability of recreational activities,  and the supportive, family-friendly employer policies. 

The most  negative responses came from the states Texas, Virginia, Tennessee, Ohio, Florida, Michigan, and California.  Plus, in considering the survey overall, 74% (638) of the survery takers were generally unsatisfied with the autism services and resources they were receiving while only 26% (220) were satisfied.  Read the full survey data on Autism Speaks.

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Do You Know a Family Affected By Autism?

Saturday, April 2nd, 2011

With 1 in every 110 children diagnosed, chances are high that you do. And though today is World Autism Awareness Day, it’s a good time to remember that these families can use our support and understanding all year long. That can come in many forms: It might mean attending a walk, such as the ones sponsored by Autism Speaks that are taking place all spring. It might mean simply inviting a child with autism over to play, or including him or her in your own child’s birthday party. Or it might mean supporting a company that promotes the cause. Lindt USA, the chocolate makers, is one such company. Among their initiatives: For every free e-card you send from, Lindt will donate $1 to Autism Speaks.

Earlier this week, two of us here attended an awards luncheon sponsored by Lindt. Every year Lindt recognizes three Unsung Heroes—people who are making a positive, unique, and lasting impact in the lives of families affected by autism—with a trip to New York City and a $5,000 prize. (They’re pictured above, along with Lindt USA president and CEO Thomas Linemayr.) Deputy Editor Diane Debrovner and I were honored to be on the judging panel, and to meet the winners in person:

Connie Erbert (left), who lives in Wichita, Kansas, has long been a champion for families with autism. She directs the Community of Autism Resources and Education program at Heartspring, she founded a camp for children with Asperger’s Syndrome and high-functioning autism, and started autism awareness walks that have so far raised more than $120,000.

Kerri Duncan (second from left), of Springfield, Missouri, realized more than a decade ago that her community needed a school to serve children with autism—so she started one herself, opening the Rivendale Center for Autism and Institute for Learning. She recently partnered with Specialized Education Services Inc. and plans to open schools all over the country.

Bonnie Gillman (far right) lives in Tustin, California, and in 2006 started the Grandparent Autism Network after her grandson was diagnosed with autism. GAN’s mission is to help grandparents better interact with and understand their grandchildren, as well as help grandparents support their own children. Bonnie has planned 42 free events for GAN’s 800 members and serves 34 communities in California.

It was so touching to hear how these women have improved the lives of families affected by autism. To learn more about the condition, including signs and treatment, and real parents’ stories, check out our extensive coverage.

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