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Local Organization Promoting 'Autism Awareness Month'



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Families United in Newtown (FUN) founder Linda Jones vividly recalls the day she decided to try and bring her late son, Tyler, to a Bethel retail store to gauge his capacity for tolerating the experience. Tyler, who was on the autism spectrum and non-verbal prior to his untimely passing in 2009, still had a tendency to react loudly, even seemingly violently when he was introduced to new social environments.

As expected, a few moments after entering the store with his mom and a friend who also happened to be a special education teacher, Tyler erupted into what Ms Jones described as “a severe tantrum,” eliciting looks and even comments of disapproval from several customers. But Ms Jones would not be deterred from her goal of continuing to orient her son to public situations.

“I knew based on his diagnosis that if I gave in and left the store, it would have immediately become an automatic behavior for Tyler every time he was brought to a store,” she told The Newtown Bee, “but I was NOT going to give in. I knew if I was able to calm him down, that would become the learned behavior — and I wouldn’t have to worry about taking him to those kind of public places again.”

After five attempts, and plenty more angry stares and comments, Tyler finally calmed down and tolerated a trip around the store. “I was right,” Ms Jones affirmed. “Once he settled down, I never had to worry about taking him to the store again. And while I even had a couple of people remark to my face about how I couldn’t control my child, I also had a couple of people walk up and try to help me with him.”

That incident happened many years ago, and thanks to a greater awareness of Autism Spectrum Disorder (ASD) and related conditions like Asperger’s and Pervasive Development Disorder (PDD), Ms Jones is seeing a corresponding reaction from members of the public when they encounter an individual like Tyler, who was on the more severe end of the spectrum, behaviorally-speaking.

Ms Jones believes a combination of more and more young people being diagnosed with ASD and global/community awareness activities like Autism Awareness Month in April and World Autism Awareness Day April 2, are slowly influencing a broader base of the population to be more tolerant about behaviors and idiosyncrasies of those affected.

Increasing Diagnoses

Last April, the Centers for Disease Control and Prevention (CDC) released its biennial update of autism’s estimated prevalence among America’s children — based on an analysis of medical and available educational records of eight-year-old children from 11 sites across the country. Again, that monitoring confirmed that the number of young people being diagnosed on the spectrum continues to increase, with the latest estimate representing a 15 percent increase in prevalence nationally.

That means today, one in 59 children will be affected, versus the ratio of one in 68 just two years earlier (2016).

Throughout Autism Awareness Month this April, Ms Jones, her supporters, and the many Newtown High school Honors Society students who volunteer for the FUN cause are hoping local residents will help celebrate autism awareness all month long by hanging or displaying blue lighting at their homes and businesses.

Regular attendees at Ms Jones FUN meetings, held monthly during the school year, are getting their blue lights ready, and the Newtown United Methodist Church, along with a growing (glowing) number of businesses and buildings, will also be illuminated in blue lighting throughout April, including Newtown Savings Bank and The Bee.

Other businesses are helping boost autism awareness in other ways.

Queen Street Gifts owner Andrea Appelbaum already sells various “autism puzzle piece” fundraising items and has invited FUN representatives to come to the store on select days in April and show off their latest wares to customers. Ms Jones said the newest items her participants and honors students made together are purple ceramic charms and fobs in the shape of the trademark autism puzzle icon.

While all the money raised goes to supporting FUN, Ms Jones says she allocates a percentage of those funds annually as a designated donation to underwrite research toward a cure being performed by longtime friend of the organization, Margaret L Bauman, MD.

Resident Greg Van Antwerp has created a short video featuring images from various recent FUN events using the 2011 song “Light It Up Blue” by Owen Saunders and ten of his classmates in Pellham, New York, as the sound track. It will be shown in April during or after services at the Newtown UMC and the Newtown Congregational Church, Ms Jones said.

Awareness Matters

According to the Autism Society of America, autism spectrum disorder (ASD) is a complex developmental disability; signs typically appear during early childhood and affect a person’s ability to communicate and interact with others. ASD is defined by a certain set of behaviors and is a “spectrum condition” that affects individuals differently and to varying degrees.

There is no known single cause of autism, but increased awareness and early diagnosis/intervention and access to appropriate services/supports lead to significantly improved outcomes.

Some of the behaviors associated with autism include delayed learning of language; difficulty making eye contact or holding a conversation; difficulty with executive functioning, which relates to reasoning and planning; narrow, intense interests; poor motor skills’ and sensory sensitivities. Again, a person on the spectrum might follow many of these behaviors or just a few, or many others besides. The diagnosis of autism spectrum disorder is applied based on analysis of all behaviors and their severity.

With an eye on better awareness, Ms Jones also shared the following points from that 2018 CDC update:

*The gender gap in autism has decreased. While boys were four times more likely to be diagnosed than girls (one in 37 versus one in 151) in 2014, the difference was narrower than in 2012, when boys were 4.5 times more frequently diagnosed than girls. This appears to reflect improved identification of autism in girls — many of whom do not fit the stereotypical picture of autism seen in boys.

*White children were still more likely to be diagnosed with autism than were minority children. However, the ethnic gap had narrowed since 2012, particularly between black and white children. This appears to reflect increased awareness and screening in minority communities. However, the diagnosis of autism among Hispanic children still lagged significantly behind that of non-Hispanic children.

*Disappointingly, the report found no overall decrease in the age of diagnosis. In 2014, most children were still being diagnosed after age 4, though autism can be reliably diagnosed as early as age 2. Earlier diagnosis is crucial because early intervention affords the best opportunity to support healthy development and deliver benefits across the lifespan.

Anyone with a child or teen on the spectrum is invited to attend the group’s next meeting and egg hunt April 7, from 2 to 4 pm, at the UMC lower event room in the rear of 92 Church Hill Road in Sandy Hook center. Just RSVP via e-mail by clicking here — and learn more about FUN at its Facebook site or on the web at familiesunitedinnewtown.org.

For Autism Month information, details, and data, visit autismspeaks.org.

First Selectman Dan Rosenthal is surrounded by Families United in Newtown (FUN) founders, supporters, and volunteers ahead of April — Autism Awareness Month — when all Newtown homes and businesses are encouraged to display blue lights to promote inclusion and autism awareness. Among those gathered at the Municipal Center are, back row from left, Duane Jones, Steve Bennett, Mr Rosenthal, Robbie Morrill, Lina Stubbs; and front row, from left, Linda Jones, Colby Troy, Jackie Mathews, Ava Holmes, Heather Stroili. —Photo Courtesy FUN
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