From Sesame Street to Pennsylvania Ave, Autism Awareness & Advocacy Take Hold

This article was originally published here

Like most American kids, my daughters loved Sesame Street growing up. The show’s cast of Muppets have made learning fun since 1969, helping to teach our children how to count, read and be a good person who shares and cares for others.

According to one study by researchers at the University of Maryland and Wellesley College, children who live in places with easy access to Sesame Street are 14 percent less likely to fall behind in school. The show’s positive influence on America’s youth is why I was so pleased to hear that the creators of Sesame Street have taken an important step forward with the introduction of their newest Muppet, Julia.

Julia is on the autism spectrum. She has already made her YouTube and Sesame Street online debuts, and during April’s Autism Awareness Month, she’s appearing on television for the first time. In the initial episode, Julia doesn’t make eye contact or speak when she meets Big Bird. She is unsure if she should shake his hand, so she keeps coloring her book. Julia is sensitive to loud noises, and becomes overly excited during a game of tag.

Through Julia, the show’s creators are illustrating certain behaviors of children with Autism Spectrum Disorders (ASD). The idea is to combat stigma and promote greater understanding among young peer groups. Julia provides educators and parents with an accessible, non-threatening way to discuss the social and communications difficulties common among those with ASD.

Autism awareness reached the highest levels of government this Sunday when the White House was lit up blue in recognition of World Autism Day. The decision to turn the White House blue was made by President Trump himself. He promised Bob Wright and his late wife Suzanne – who founded the research and advocacy organization, Autism Speaks, in 2005 – that, if he won the presidency, he would honor their grandson with ASD.

President Trump tweeted and released a statement encouraging Americans to learn the signs of ASD to improve early diagnosis and to help more people “understand the challenges faced by those with autism spectrum disorders.”

There’s a reason autism public awareness is popping up everywhere from Sesame Street to 1600 Pennsylvania Avenue. Ten years ago the Centers for Disease Control and Prevention (CDC) estimated autism’s U.S. prevalence at 1 in 166 kids. Today, it’s 1 in 68 – an increase of more than 100 percent over the last decade. Boys are four and a half times more likely to have ASD.

Why are diagnoses rising at such an alarming rate? Has there been a large increase, or are we just learning to better identify and count the number of people who are on the spectrum?

Certainly, medical professionals are more aggressive with diagnoses today. Many cases that used to be diagnosed as an “intellectual disability” are now recognized as autism. The medical community also changed the clinical definition of autism. The “spectrum” of conditions has expanded to include Asperger Disorder, which can appear to be a milder form of autism without impairment of language and cognitive skills. Children with autism are often seen as aloof, according to the Autism Society, while those with Asperger’s Disorder usually want to fit in but may not be sure how because of difficulty picking up on social cues or subtleties like sarcasm in conversation.

Doctors say diagnosing a child with ASD can be difficult since there is no medical test. Autism Speaks notes that one-third of individuals with autism are non-verbal and/or have epilepsy. Half of children with autism have gastrointestinal disorders and trouble sleeping. By asking the right questions early, a child can be diagnosed before the age of two. Then, a combination of speech, occupational, sensory integration and behavioral therapies are among the treatments that can be used to stimulate brain development and activity. The earlier the diagnosis, the better the chance for a positive outcome.

Scientists are now studying gene variations in the hopes of one-day developing medicines to treat the root cause of ASD. Studies by the CDC show if one identical twin has autism, there is a 75 percent chance both do. The disorder occurs more often in people who have certain genetic or chromosomal conditions like Down syndrome and Fragile X syndrome. Fragile X refers to one part of the X chromosome that is defective. Doctors say it is the most common form of intellectual disability with symptoms similar to ASD. Children born to older parents are also at a higher risk of having ASD.

At BIO, we are encouraged by Autism Speaks’ MSSNG genomic database and the recent news they’ve identified 18 gene variations linked to an increased risk of autism. This could be a very significant research discovery. To date, the project reports, 80 percent of the five dozen gene variations discovered through MSSNG affect biochemical pathways that have clear potential as targets for future medicines.

The genomic database project began over a decade ago as a collaboration between Google and Autism Speaks. Using a state of the art technology called DNA microarray, scientists can scan the human genome in search of autism’s genetic causes and risk factors.  The DNA of more than 10,000 families affected by autism was sequenced and made available for free to researchers worldwide. Autism Speaks is doing critical genetic analysis work that could one day lead to biopharmaceutical treatments for ASD.

In the meantime, society is developing a greater understanding that every child on the spectrum has his or her own unique set of strengths and challenges. That’s why the White House became the Blue House for an evening and why Sesame Street fans are meeting Julia this month: to raise awareness that people with ASD are exceptional and worth getting to know.

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