Lighting the Way: Families, Organizations at Forefront to Shine Awareness on Autism

April 19, 2011
by Joe Dolinsky

Your toddler stares off into the distance instead of at you, is disinterested and now lacks the communication skills he or she had begun to develop. The joy and promise of the life to come is quickly replaced with uncertainty and doubt. This is a nightmare scenario for new parents and one that more and more families are facing every year due to an increasing number of Autism Spectrum Disorders (ASD) diagnoses.

“He went from a child that talked and sang songs to a child that you could hold his face and look in his eyes and his eyes would go everywhere but meet yours,” Scott Rieder, said of his autistic son, Michael, on Saturday at their West Pittston home.

Autism is a neural development disorder characterized by hampered communication skills, social apprehension, and repetitive and restrictive behavior. The disorder now affects a staggering ratio of one out of every 110 children, according to the Centers for Disease Control and Prevention.

“We wondered how we were going to get our son back, and if we were going to get our son back, and how we were going to do it,” added Scott’s wife, Megan.

Doctors and therapists have varying opinions on how to treat autism. Cases are rarely similar and there is much that experts still don’t know about the disorder’s origins. What is clear is spreading awareness about ASD and the challenges that come with the disorder are paramount. The designation of National Autism Awareness Month in April is designed to accomplish this. Across the world organizations and individuals are doing their part to spread awareness about the malady and on an array of topics within autism including acceptance, patience, understanding and, most importantly, early recognition.

Warning signs can vary. Distinguishing behaviors considered normal for a toddler or a greater underlying problem was one issue faced by the Rieder family. Michael was diagnosed with autism at 4 years old. The diagnosis was especially shocking to the Rieder family because, as a baby, Michael was developing normally. At around age 3, however, Scott, and Megan started noticing some unsettling signs. Michael was isolating himself more and had lost his language skills. He no longer sang and was having difficulty making eye contact.

Like most parents, Scott and Megan knew very little about autism before Michael was diagnosed. Megan quickly became the researcher. She scoured the Internet and found it to be a tremendous resource.

“Everything was at my fingertips. It put me in touch with local resources as far as facilities where we could receive behavior intervention for him,” said Megan. “It was an invaluable resource.”

In recent years, awareness is increasing and outreach and more support programs and groups are continuing to take root. One such group is Parents and Professionals.

Parents and Professionals came to be when Julie Miller, a veteran speech pathologist at the John Heinz Rehabilitation Center, sought out ways to improve specific variables of the rehab process. In her attempt to reach out and poll parents on what they thought was missing in their programming one answer kept surfacing: “Socialization,” said Miller. “Socialization was an issue that hadn’t been addressed.”

One of the first parents Miller reached out to was Dolphus Teart, whose now adult son Tevon had been receiving therapy for a number of years at John Heinz. When Miller asked Dolphus for ideas he didn’t hold back.

“He had been thinking the same thing and we just took off from there,” said Miller.

The mission behind Parents and Professionals is “to get the kids and parents out in the community as much as possible so kids can adjust to the community,” said Teart. “But we do it in a comfortable setting where we could work on those things that we need to work on, and actually have a little bit of fun at the same time.”

Some of the events that took place this past weekend include the fourth annual Autism Walk and Community Awareness Fair held Saturday at the Forty Fort Recreation Complex. All proceeds will be granted to local providers to support the development and expansion of services for individuals of Luzerne County who are affected by autism. Last year’s event had contributions and sponsorships of more than $20,000 last year. This year, despite some less than favorable weather conditions, the event went off swimmingly and included prize giveaways, face-painting and free refreshments before and after the walk.

The event was organized by the Autism Coalition of Luzerne County, a non-profit Autism awareness group boasting more than 25 provider members including Parents and Professionals. Members of Parents and Professionals and S.A.F.E. (Supporting Autism & Families Everywhere), in addition to participating in the organization of the walk, also provided a free bus trip to the Philadelphia Zoo on Sunday that included free admission and bagged lunches to individuals with autism and their families.

As awareness catches on, the scope of autism, though still imposing, is becoming a bit more manageable for families and relatives of those with the condition. As for Michael and the Rieder family, things are improving and Scott says Michael, now 17 years old, is no different than any other teen.

As Scott and Michael sit at the kitchen table laughing and smiling, Megan is making a pot of hot chocolate on the stove. As Megan joins her husband at the table she asks Michael to please stir the pot of hot chocolate, which he does. Michael does not speak. As Scott looks at his son he boasts how Michael has an excellent follow-through on his basketball shot. As if Michael’s improvement wasn’t apparent enough, he has recently become fond of a new hobby: riding his dirt bike.

“He’s the same as everyone else. Only his ability to communicate has been hampered,” said Scott.

Groups, websites offer support, resources

National Autism Awareness Month continues through April. Listed are some ways you can help by volunteering, donating and spreading awareness.

• www.autismsafe.org: provides a list of local events for individuals with autism and their families, photos of sponsored events and informational links to autism related websites.

• www.wrightslaw.com: information on the special education law and advocacy for children with disabilities.

• Free Swim: with an adult present, 11 a.m.-noon every Friday at John Heinz Aquatic Pool, Mundy Street, Wilkes-Barre Township. Call 826-3800.

• S.A.F.E. (Supporting Autism and Families Everywhere), a monthly support group at 7:15 p.m. April 28 at John Heinz Patient Cafeteria, Mundy Street, Wilkes-Barre Township. Call 822-7259.

• Kids Helping Kids golf event June 20, and the second annual golf tournament July 8 at Blue Ridge Golf Club in Mountain Top.

Red Flags for Autism Spectrum Disorders

There are three different types of Autism Spectrum Disorder: Autistic Disorder, also called “classic” autism; Asperger Syndrome, and Pervasive Developmental Disorder, also called “atypical autism.”

The many symptoms can usually be observed by 18 months of age. Some features may mean a delay in one or more areas of development, while others may be more typical of autism spectrum disorders. If you think your child shows red flags for autism, talk to your health care provider. The main signs and symptoms involve problems in the following areas:

Communication: both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)

Social: such as sharing emotions, understanding how others think and feel, and holding a conversation

Routines or repetitive behaviors (also called stereotyped behaviors): such as repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways.

Source: National Institute of Child Health & Human Developmen

 

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