Autism Speaks but let’s talk Williams Syndrome!

Special Contribution by

Julia Sanchez

 

“Knowing is not enough, we must apply. Willing is not enough, we must do.’ – Bruce Lee

What is Williams Syndrome?

Autism spectrum disorders (ASD) and Williams syndrome (WS) are neurodevelopmental disorders (a disorder of brain function that affects emotion, learning ability, and memory that unfolds as the individual grows), each with a unique study into a single organism.  Both have learning disabilities, many need support throughout their lives, and have medical issues.  So what makes them different?  It’s in the genes! WS individuals have chromosome #7 genes fall out before birth, Autism out of Factor-X.

Williams Syndrome was discovered in 1961 by Dr. J. C. Williams and Dr. A. J. Beuren.  WS affects 1 in 7,500 people and has no discrimination properties.  What makes WS so different than Autism is WS can be life threatening by medical problems like cardiovascular disease, hypercalemia (elevated blood calcium levels), and Kidney abnormalities.  Unfortunately, some don’t live long due to these problems.  Other medical issues are ADD (Attention Deficit Disorder), eating disorders, and dental deformities.

 

Like Autism, they have developmental delays and learning disabilities.  Unlike Autism that can make connecting with your child difficult, WS are highly social, friendly, endearing and have an affinity for music and many need costly and ongoing medical attention, early interventions (speech or occupational therapy) that are not covered by insurances or state funding.  As adults, WS individuals need supportive housing to live to their fullest potential and adults contribute to communities as volunteers, working at senior homes, libraries, store greeters or veterinary aides. As research continues, they are a handful of colleges geared toward WS.  So of course, very few are attending college, exploring their talents and abilities.

Unlike Autism, facial features are present in the WS individual like full pouty lips, wide mouth, starburst or lacy pattern in their irises and puffiness around their eyes.  Just like people, Autism and Williams Syndrome individuals need inclusion with people.  People need to understand the underlining of both syndromes not just look at the outside.  It’s like the old saying goes, “Never Judge a Book by its Cover.” Persons of diverse backgrounds with disabilities often face multiple barriers, including access to support services and discrimination in community, education and employment settings.  TASH is a leader in disability advocacy for more than 35 years, their mission, promotes the full inclusion and participation of Individuals with significant disabilities in their community, and to eliminate the social injustices that diminish human rights.

Overall, it’s time to listen and speak about all disabilities and syndromes, not just Autism.  This is where awareness is highly needed, to listen and speak for these wonderful amazingly, gifted individuals.  The Month of May is WS Awareness Month.  If you would like to know more about Williams Syndrome, please go to www.wschanginglives.org.