DaFEAT gearing up for Autism Awareness Month events

PUNXSUTAWNEY — What is Autism? That is the question that runs through the minds of many individuals.

And the answer is: autism and autism spectrum disorder (ASD) are terms for a complex neurological disorder that is characterized by communication difficulties, social impairment and repetitive behaviors.

Children who are autistic may have difficulties with motor coordination or attention span, have trouble sleeping and potty training and have intellectual disabilities.

Autism is rooted in early brain development, and signs can begin to emerge when a child is 2 to 3 years old. It is currently the fastest-growing developmental disability in the United States.

Centers for Disease Control and Prevention conducted a recent statistics report that found that the autism spectrum disorder now affects one in 50 children nationwide.

According to the report, boys are four times more likely to be affected than girls.

Perhaps the biggest question, though, is, " What causes autism?"

The truth is that scientists are trying desperately to find the answer.

What they have discovered so far is that there is no one particular cause of autism and no one type of autism.

After years of extensive research, they have identified a number of rare gene changes that may be associated with autism. They have also discovered that a combination of risk genes, as well as environmental factors, may influence the early brain development of a child.

Presence of a genetic predisposition and environmental stresses may increase a child's risk for autism, and some other factors include stressors that happened before or during birth such as illness during pregnancy, difficulties during birth and oxygen deprivation to the baby's brain.

Though these are merely theories, the fact of the matter is that scientists are still trying to pinpoint the exact cause of the disorder and find a way to prevent it.

When people think of autism, they usually picture a child who is non-verbal and doesn't make eye contact. Movies and television may have skewed the view of autism and shown just one side.

Autistic children may appear to be functioning normally, but could have difficulties learning or interacting. Every individual who is autistic is unique, and it is possible he or she may have exceptional skills.
They may excel in music, art and even academics.

Though some autistic individuals are unable to live independently, others are able to go on to graduate from Ivy League colleges. So the spectrum of the effects of the disorder is a broad one.

According to a packet distributed by DaFEAT (DuBois Area Familes for Effective Autism Treatment) — a non-profit autism advocacy organization centralized in DuBois — many famous and historic people of our past and present may have had or have autism, including:

• Albert Einstein— inventor;

• Thomas Jefferson —President of the United States, as well as one of the founding fathers of our country;

• Temple Grandin — professor, author, architect;

• Donna Williams — author;

• Bhumi Jensen — Thai prince;

• Crispin Glover — Actor best known for his role as " George McFly" in Back to the Future;

• Jonathan Lerman — artist;

• Satoshi Tajiri — creator of Pokemon;

• Stephen Wiltshire—photographic memory artist.

Parents are often the first to notice that something isn't right when their children have signs of autism. They may notice that the child isn't making eye contact, doesn't want to be held, doesn't
respond when talked to, doesn't respond to his or her name, may not be interested in playing games and may place toys in repetitive ways.

It is important for parents to speak with a pediatrician if they notice that their child is not making eye contact or showing any signs of delay, as it could be an early sign of autism.

Some children with autism may begin speaking at the same age as other children, but then suddenly lose those language skills. It's almost as if they take a few steps forward but then are pulled backwards, DaFEAT literature said.

Children with autism have trouble socially interacting with other children, and they may have trouble establishing friendships with peers the same age, have trouble reading facial expressions and display a lack of empathy.

Individuals with autism may have trouble starting and continuing conversations and may have a repetitive use of language, repeating the same phrase over and over again. They also have a need for sameness and routine. Furthermore, if something prevents them from that routine, they may become agitated or angry.

Autistic children often will focus on one specific toy or part of a toy — an example being the wheels on a toy car. They may become preoccupied with certain things such as trains, trading cards or puzzles.

And of course, there are the stereotype behaviors associated with autism, which include flapping of arms and body rocking.

Autism is detected by specifically trained physicians who administer autism-specific behavioral evaluations.

Treatments for autism include, but are not limited to specialized therapies, behavioral training and management, medication, community support and parent training.

Currently, there is no way to prevent autism and no cure, but resources do exist for those caring for an autistic child or adult.

One of those resources is DaFEAT, which was founded by Uzma Shah and co-founded by Amanda Kuklinskie.

"We both saw a great need for parents and professionals to connect and work together more closely. There are quite a few sayings that many people think about when they hear the word autism, one of them being 'Always Unique, Totally Interesting, Sometimes Mysterious,' said Kuklinskie, adding, "That describes why I am passionate about autism."

For the past four years, Kuklinskie has been working with a child on the autism spectrum who has taught her a great deal about life.

"When I started working with this particular child, I knew I wanted to be a part of helping children on the spectrum and seeing them reach their individual goals," said Kuklinskie.

DaFEAT's goal is to support every individual with autism through the people who care for them, whether that be parents or caregivers.

It also supports individuals through lifespan, creative programming, community collaborations and raising awareness of autism. With each year, the organization continues to grow.

"Children may improve by learning new skills, but they will never be completely cured of autism. Individuals with autism may learn skills that will help them live a full life in society," said Kuklinskie. "They may look and act like their peers."

Many children with autism have to be taught social skills. What may come naturally to other children is more difficult for them to learn, at times. One may have to go out of the way to teach them how to interact and how to read expressions.

"DaFEAT is working on creating a social skills group," said Kuklinskie.
In honor of April being the National Autism Awareness Month, DaFEAT is hosting a series of Autism Awareness events throughout the month of April.

Shine a Light on Autism — which runs April 1 through April 7 — is an event where people are encouraged to get involved. Businesses, neighborhoods and local churches are encouraged to decorate their buildings in blue.

The various events associated with National Autism Month include:

• April 2 is "World Autism Day," and people can show support by either decorating a window in blue or putting a blue lightbulb in their front porch or windows.

DaFEAT is even turning to online media groups such as Facebook and asking people to "tell them who they think has the best blue window in town!"

For anyone in need of a blue lightbulb, DaFEAT has them for sale at $3 each.

• April 6 will bring another autism awareness event in a Saturday workshop from 9 a.m. to 4 p.m. at the DuBois Middle School.
Speaking at the event will be Dr. Keith Williams, who will be presenting on the topic "Addressing Eating and Toilet Problems in Children with Autism Spectrum Disorders: Help for Caregivers and Care Providers."

Dr. Williams is the Director of the Penn State Hershey Children's Hospital feeding program. He is an associate professor of pediatrics at the Penn State College of Medicine, and specializes in the behavioral treatment of feeding disorders.

He also treats a variety of behavioral problems found in children with developmental disabilities.

His workshop will focus on three different areas: eating problems, toileting and ingestion of non-nutritive substances.

The workshop will also provide suggestions and techniques that can be used to address these areas in the home, school and community.

Cost to attend the workshop is $20, which includes a lunch provided by Fort Worth Restaurant.

Registration forms may be found at www.DaFEATpa.org.

• April 7th—DaFEAT will host a dine-in dinner event at Luigi's Ristorante in DuBois, to help kick-off Autism Awareness. How a dine-in works is that you order a meal and part of the bill goes to the DaFEAT organization. The Luigi's dinner event will feature a silent auction and a 50/50 drawing.

• April 12th— Dine-in or carry-out at Fort Worth Restaurant from 11 a.m. to 10 p.m. Proceeds will go to DaFEAT.

• April 26, 27 and 28—Dine-in at Ruby Tuesdays.

• April 27th— The 4th Annual Autism Awareness Fair at the DuBois Mall.

The fair will be from 11 a.m. to 3 p.m. and will feature various professionals from DuBois and surrounding areas, who will be on hand to explain the different services that can be beneficial to those with autism and the caregivers who provide for them.

Kids will have the chance to participate in activities and games. M & M Magic will be performing for children and families.

• A lecture series will also be held every Tuesday evening in April at the DuBois Middle School Auditorium from 6-8 p.m.

The lectures are as follows:

— April 9th—Executive Functions for Atypical Student, presented by Karen Duncan, M.A. SLP;

— April 16—Adolescence and Autism-Current Needs and Proactive Responses, presented by Dr. Larry Sutton;

— April 23—"Nutritional Interventions for Autism," a functional/ integrative approach, presented by Dr. Ferraro;

— April 30—Using Precision Teaching to Foster Fluency: True Mastery in the Curriculum, presented by Richard M. Kubina, Ph. D, BCBA-D.

The lecture series is free and open to the public.

This June, DaFEAT will be co-hosting with iCan Shine, a non-profit company that helps children with disabilities learn how to ride a bicycle.

Other programs that DaFEAT is currently working toward include peer buddy programs, SibShops and monthly family outings.

For more information on autism, check out the following:
• National Institute of Neurological Disorders—www.ninds.nih.gov;

• KidsHealth for Parents, Children and Teens—www.kidshealth.org;

• WebMd— www.webmd.com/brain/autism/autism-symptoms;

www.autismspeaks.org, www.dpw.state.pa.us/ucmprd/groups.

To contact the DaFEAT organization go to www.DaFEATpa.org.