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Category Archives: Advice for Parents of Autistic Children

Autism drowning risks tackled with swim program

Paula Tyrie’s family is moving to a house just two blocks from the Rahway River, and she already has her emergency plan:

If her 10-year-old autistic son goes missing, one of her teenage twins will look in the park. The other will head to the river.

That’s because half of all children with autism are prone to wandering, and their fascination with water puts them at risk for drowning.

To address this double-whammy of danger, the advocacy group Autism Speaks is funding private swim lessons in hopes of imparting a life-saving skill.

“High five!” instructor Johanna Safranski urges Nick, her student, at a recent private lesson at the Center for Lifelong Learning in Parlin. By reaching his arm out of the water to slap her palm, he’ll mimic the beginning of the crawl stroke.

“I want him to be able to enjoy himself, and if he’s ever in a situation where he’s in water unexpectedly, to try to save himself,” said Tyrie, watching the lesson from the bleachers.

Parents like Tyrie point to the case of Avonte Oquendo, the severely autistic Queens teenager who bolted from his school last year. After a city-wide search, his remains were found washed up on the shore of the East River three months later.

Autism expert Walter Zahorodny said he doubts children with autism are drawn to water any more that all children are. What makes them different is the inability to grasp its inherent danger, and a delay in processing safety rules, he said.

For example, while Nick Tyrie’s mother said he loves playing in the pool, he really doesn’t distinguish between the shallow end and the deep end — to his peril.

“That’s what scares parents — the lack of fear,” said Safranski, the swimming teacher.

A 2012 study found that half of children with autism had attempted to leave their home, school, or other supervised setting at least once after the age of 4. Of those, half were missing long enough to cause concern. Some parents even reported their child attempted to bolt several times a day.

“Many children with autism, especially between the ages of 4 and 12, have a greater likelihood of walking away”

“Many children with autism, especially between the ages of 4 and 12, have a greater likelihood of walking away, leaving their home, or leaving the secure area where the family is vacationing,” said Zahorodny, director of the New Jersey Autism Study and a faculty member at Rutgers University’s New Jersey Medical School in Newark. “And of course that causes panic with the parent.”

More than a third of wanderers do not have the language skills to communicate their name, address, or phone number.

In another survey, two out of three parents of wanderers reported a “close call” with traffic.

While encounters with traffic caused plenty of concern, drowning caused the majority of deaths from wandering from 2009 to 2011.

The Autism Speaks scholarships pay for four private half-hour lessons.

Nearly 5 years old, Cayden Rinehart speaks only a handful of words, yet appears to understand all of his swimming teacher’s instructions — even if he sometimes ignores them.

His grandparents have a pool that he loves, said his mother, Christy Rinehart, of South Amboy. Yet, they have to put on his swim vest the minute he arrives at their house, because otherwise he’ll jump right in without it.

Safranski said children with autism tend to be visual learners, so she shows them what she wants them to do instead of merely telling them. She may even move their legs back and forth in addition to telling them to “kick.”

“You just have to do it ten different ways until something works,” she said. “We do things over and over and over and over.”

The biggest challenge, it turns out, is discouraging her students from drinking the water. Cayden’s a drinker, constantly trying to slurp up the puddles along the pool edge. He even requires constant parental vigilance when he’s taking a bath, his mother said.
At home, he’s learning how to spit out toothpaste, which they hope will translate into the ability to blow bubbles while under water.

It was Safranski who heard about the Autism Speaks swim scholarships and applied for a $2,500 grant. Aquatics and Fitness Center program coordinator Katelyn Dauphinee said that after handing out flyers, they got 100 applications for 42 slots. They are hoping to run a second set of lessons soon.

“It’s a life skill they need,” she said.


For the original article published on visit the link below:

Online Course for Caregivers of Adults with Autism to Begin Next Week!

The fourth round of the AGI Residential/Daily Living Support Coursewill begin Monday, June 23rd! This first-of-its-kind course, funded by a 2011 Autism Speaks grant to the Autistic Global Initiative of the Autism Research Institute, was developed by a team of 15 curriculum experts from across the United States and is instructed by world-renowned faculty. The Autistic Global Initiative is comprised of a committee of adults diagnosed with autism and is dedicated to fostering the development of adults on the autism spectrum and those who work with and for them.


The 12-week online course, hosted by the Houlton Institute, provides evidence-based practices to those who support people with autism and related disabilities in daily living and residential settings. The course provides parents, siblings, family members, in-home support workers, agency support providers and volunteers from the community the foundational knowledge, competencies and tools necessary to support the daily living needs of transition aged students, young adults and adults with autism. The program is self-paced, facilitated by professors and includes lectures, videos, moderated discussions, activities, chat rooms, reading activities and more.

The 12 topics covered include person-center approach to support adults with autism, learning and implementing evidence-based practices in residential settings, citizenship and community life, supporting safety. The cost of the course is $300 but scholarships are available.

For the original article visit:

My Job Chart: A Great Tool for Families!

My Job Chart is visually stimulating, engaging and most importantly, FUN! Hard work and money management are two critical skills for individuals with autism of all ages and My Job Chart provides an interactive way to learn both!

Here is what one mom had to say:

“One of the tools we found to help my son was My Job Chart. It was so awesome to watch Ian begin to make the connection, to begin to understand, on a limited basis the concept of cause and effect.  With this tool, we were able to give Ian what he viewed as most comfortable and safe, routine and order, while at the same time teaching him concepts that would help him be able to achieve the independence he so desired.”


This great system provides opportunities for both kids and adults to work, manage time and money, while practicing accountability, responsibility and problem solving. My Job Chart also provides parents a perfect environment to have meaningful conversations about how to make smart money decisions and setting priorities.

With My Job Chart, individuals with autism can record their completed chores and jobs and accumulate coins that are then converted to dollars. Then, the child or adult can manage their own money by deciding whether or not to save, share or spend! Sharing allows them to donate to featured charities like Autism Speaks. The money raised for Autism Speaks will go towards funding iPads for financially disadvantaged individuals with autism who have trouble communicating. can also be used through its Apple and Android mobile apps, allowing parents and kids the opportunity to save, share and spend from anywhere!


For the original article, visit Autism Speaks website.

Autism Insurance? There’s Now An App For That

In response to widespread confusion over autism and insurance coverage, Autism Speaks is introducing a new interactive web tool to help families determine whether they should be entitled to coverage through their specific health plan.

Called the Autism Speaks Insurance Link, the new tool leads families through a short series of questions to determine whether their policy covers common autism treatments, such as applied behavior analysis (ABA), and physical, speech and occupational therapy. The application was developed over a period of months and addresses the multiple forms of insurance coverage available to the autism community.

“Understanding basic insurance coverage does not lend itself to simple ‘yes’ or ‘no’ answers. Throw in coverage for autism benefits and the picture grows more confused,” said Lorri Unumb, Autism Speaks executive vice president for state government affairs.

“Families in the autism community have long asked us to help lead them out of this maze,” she said. “We believe the Autism Speaks Insurance Link will help answer many questions for our families.”

Log on to the Insurance Link here

Until recently, such benefits have been largely unavailable through any health insurance coverage because insurers deemed autism a diagnostic exclusion and denied coverage for ABA and other therapies.

Due in large part to the efforts of the Autism Speaks’ Advocacy Team, 34 states and the District of Columbia now have laws on the books requiring coverage of ABA and other autism benefits in state-regulated health plans. These include some combination of individual and fully funded small group (fewer than 50 employees), large group and state employee health plans.

In addition, Autism Speaks has helped fight for changes in Congress to TRICARE, the health care plan for the military, and with the Office of Personnel Management for changes to the Federal Employees Health Benefits program.

But self-funded “ERISA” health plans, typically offered by larger employees, are governed by federal law and are not required to offer any autism-related coverage. Autism Speaks has worked with many large employers to voluntarily offer autism benefits, but there is no legal requirement.

In addition, some state laws set dollar or age caps on benefits, and military families and federal civilian employees face significant gaps in their coverage.

The Autism Speaks Insurance Link helps families sort through the various types of insurance, restrictions and caps to determine if they are entitled to benefits. lf entitled to coverage, the tool will provide details of the coverage required by state law along with resources to assist in claims reimbursement.

If coverage is not available, such as under an ERISA plan, the Insurance Link will equip families with tools to effectively advocate for the addition of a meaningful benefit.

The new Insurance Link follows the release of our web resources for the Affordable Care Act and Autism.


For the original article see Autism Speaks website at the link below.

Autism Speaks: Camps in Indiana

Autism Speaks has compiled a list of camps all over Indiana that cater to children with autism, as well as children and adults with other disabilities. Click on the links below to visit the website of a camp in your area.


Autism Parent CareCarmel
AWSFort Wayne
BLAST Youth GroupIndianapolis
Camp MillhouseSouth Bend
Camp Red CedarFort Wayne
Jacob’s Place Inc.Noblesville, In.
LOGAN Regional Center for AutismSouth Bend
Noble of IndianaRichmond
Noble of IndianaIndianapolis
Noble of IndianaCarmel
Noble of IndianaIndianapolis
Reach High Consulting and TherapyBloomington