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Autism Speaks, Alpha Xi Delta Listens

Autism Speaks is a non-profit organization which raises money for those affected by Autism Spectrum Disorder. (Graphic/autismspeaks.org)

Autism Spectrum Disorder is a complex brain disorder is characterized by varying degrees of difficulty with social interaction, verbal and nonverbal communication and repetitive behaviors.  This disorder often starts to emerge in children ages two or three but unfortunately, there is yet to be a distinct cause which means there is no promised cure.

Since each case of Autism is unique to the individual, the care plan may involve behavioral treatment, medication or both.  The cost of diagnosis, treatment and lifestyle changes become expensive for the families and can cost them around $60,00 a year according to autismspeaks.org.  While there is only a small amount of known facts about the disorder, there have been many strides made over the years.  According to Tessa Cross, Philanthropy Chair of the Gamma Tau chapter, “Autism affects 1 in every 68 children.”  

Autism Speaks is a nonprofit organization that has been funding research, creating helpful kits for families and making huge strides for people affected by Autism in some way since 2006.  It was created by Bob and Suzanne Wright, who wanted to find a way to help their grandson who suffered from Autism.  After a $25 million dollar donation from their friend, Bernie Marcus, the organization was officially launched in February of 2006.

 According to the AS website, 
“Since then, Autism Speaks has grown into the world's leading autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.”

The signs of Autism can show up early and the quicker they are caught, the quicker treatment can begin.  Infants that are not social with others or do not react properly to their parents acts of anger.  Infants with Autism often do not imitate other children and prefer to play alone.  The children often seem disconnected from their parents or siblings but actually are proven to be more attached than usual, just displaying this in a different way.  Sometimes the ability to regulate emotions can cause tantrums among some younger children or even adults.  Another sign that is looked for in young children is the inability to communicate.  The struggle to communicate verbally and nonverbally is associated with ASD.  There can be lacking in speech or understanding; such as the inability to catch onto sarcasm or anger in a person’s voice.  In other situations, there is no use of body language which can cause a monotone voice to become difficult to decode.  The final sign to look for is repetitive behavior.  The behaviors can be mild or aggressive, depending on what the individual needs to feel they have a system.

Since there is such a disconnect between research and care, Autism Speaks creates a liaison between families and the care needed for each step of the diagnosis.  They have created a series of “tool kits” for families no matter where they are in life.  The tool kits include information on challenging behavior, the first 100 days of diagnosis, high functioning or adult kits and everything in between.  Since the diagnosis itself can become pricey, the Autism Speaks Foundation offers grants to families in need.  The money is used for medical costs, living costs while visiting medical establishments and to supplement income of parents who are displaced due to the research happening with their child.  

Autism Speaks is the philanthropy of sorority organization, Alpha Xi Delta.  The sorority announced the partnership in April of 2009.  Since then, the sorority has raised over $290,000 to go toward research and awareness.  Each chapter of Alpha Xi Delta holds events throughout the school year.  At Ohio Northern University alone, Alpha Xi Delta holds multiple fundraising events and sends all proceeds directly to Autism Speaks.  The events are chosen by the chapters individually and each year they hope to raise more than the last.  

The groups can choose from a series of events spanning all categories.  The Gamma Tau chapters at Ohio Northern have already started a few philanthropic traditions that they use to raise money every year.  They start the year off with the fall carnival; they allow people to play carnival games, play with inflatable toys, eat carnival food and smash pumpkins.  During the spring, two more events happen.  The Puzzlepolooza event is a race where teams put together jigsaw puzzles against one another.  The winning team usually receives some sort of gift card donated by a local restaurant or business and the money made from entries go to Autism Speaks.  The other event for the spring takes place in April which is Autism Awareness month.  The Blue Dinner is held every year and the sisters serve blueberry pancakes, sausage and juice for $5.  As far as the 2014-2015 school year, the Ohio Northern girls have “already raised and donated $862 for the fall semester,” says Financial Vice President Breanna Hester.

A majority of people who do not support Autism Speaks are not willing to take the time to hear about the whole mission.  Once they hear about genome sequencing they kind of shut it out,” says Hester.  The organization offers a lot more than genome research but does everything they can to find the “missing piece of the puzzle” to make a difference.  There is no medical detection for the families; they just look for signs that a child may have a developmental disability.  Many parents of Autistic children never realized they had a problem.  

In order to bring the cause to light in a small town setting like Ada, clearly a lot of work has to be put in.  But unlike other causes that are just as important, Autism Speaks is fighting to give the patients of this disorder a fair chance of living a normal life. “Since it is a fairly new disease, there is a lot to be learned and a lot of people are skeptical of the tactics used,” says Hester.  “By getting the word out there and raising money, we’re bringing awareness to a growing issue.  Autism is the fastest growing developmental disorder and is becoming more prevalent in the United States,” she said.  Ohio Northern University is doing their part in getting the levels of awareness up for the help Autism Speaks provides.

Autism Speaks is looking to continue increasing support in order to keep providing care for families, patients, and those who are affected by Autism without a large, crippling cost for them to pay back every year.  As a newer organization for a newer illness, there are many strides that can be made in the area of health care for those with developmental disabilities such as ASD.

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