One in 88
The odds of having a child with autism
Autism is a developmental disorder marked by impairments in a person’s ability to communicate and interact socially and by the presence of repetitive behaviors or restricted interests. In South Carolina alone, there are more than 52,000 people with an Autism Spectrum Disorder. There are varieties of ways the autism disorder can affect someone, including Asperger’s Syndrome and Pervasive Developmental Disorder, and it knows no racial, ethnic or economic boundaries.
Several key indicators have been established that can help a parent recognize whether evaluation by a professional is needed. Many of the indicators are based on the general behavior present at a certain age. According to Kim Thomas, interim director of the South Carolina Autism Society, key indicators include: a lack of facial expressions such as smiling at 6 months or earlier; a lack of reciprocal sharing of sounds, smiles or other facial expressions by 12 months; no pointing, showing, reaching or waving by 12 months; no words by 16 months; no meaningful, two-word phrases (not including imitating or repeating) by 24 months; and any loss of speech, babbling or social skills at any age.
Among the most promising treatments is the use of empirically supported procedures based on Applied Behavior Analysis (ABA), which research shows can have a major impact on changing the prognosis of people on the autism spectrum. It’s an intervention approach that Pat McCarthy, Ed.D, BCBA-D, founder and director of the Autism Institute of South Carolina, has been providing in Columbia since 1980 to help children overcome difficulties related to autism.
ABA is a scientific approach to analyzing and changing patterns of behavior by offering behavioral and educational support using evidence-based strategies. It sounds difficult, even daunting, but Pat’s behavioral approach to treatment involves embedding instruction of communication, social skills, academics and daily living in play, naturally occurring events and community outings. The Autism Institute provides behavioral training for parents and other significant adults in the child’s life to ensure a consistent approach in the delivery of support.
“Often a child just beginning services with our program will use disruptive behavior as a means to communicate requests, frustration, anxiety, disappointment and/or excitement. The messages are typically valid and appropriate; however, the means that the child is using to communicate these messages are not socially appropriate and result in barriers to learning, successful social interactions and development of close bonds with friends and family,” says Pat.
Small changes can have a large impact on a child with autism; therefore, Pat’s team takes an active approach in teaching children to handle transitions from preferred to less preferred activities, as well as major transitions within a day. They work with these children to help them effectively cope with changes in routines, interruptions of ritualistic behaviors, delay of reinforcement and acceptance of being told “no” by a parent or other adult.
“A major part of our programming involves identifying the functions of these undesirable behaviors in order to teach the child more socially acceptable and productive means of communication, typically through spoken language,” Pat says. “Some children come to us with no speech or a very limited vocabulary. Others do have speech, however, they are not able to initiate or maintain a conversation, so we help them to develop those social communication skills.”
The areas of focus through ABA therapy are significant and quite detailed, and they are implemented based on the individual needs of the child. Areas include basic communication skills, such as asking for attention, having a conversation and following through on directions; play skills, including engaging in independent play and initiating and maintaining social play; social skills, such as using greetings properly and understanding that others have different thoughts and perspectives; restrictive behaviors, such as coping with change and expanding foods in the diet; self-care skills, including washing hands and brushing teeth; and academic skills, including listening to stories, identifying shapes and recognizing numerals.
The ABA therapy approach aims to build new socially valued skills, while replacing barrier behaviors with a more acceptable, age-appropriate means of communication. It’s an approach that has made a tremendous difference in the lives of Casey Snead and her family with two sons, one of whom has autism. In a four-year timeframe, ABA therapy has taken Casey’s son with autism from a non-verbal child who couldn’t hold a crayon to a self-sufficient child who is academically a grade ahead going into this school year.
Casey doesn’t know where she would be without ABA therapy. “The more therapy children with autism get early on, the more successful they are in life,” she says. “My son now has an outstanding chance at being a normal adult who can go to college, get a job and have a family. If each child in this state had access to the same level of intensive ABA therapy, then the long-term benefits would outweigh the costs.”
Casey believes that because of Ryan’s Law, which is a South Carolina law that requires most state-regulated group insurance policies to provide coverage for the treatment of autism spectrum disorder in children up to 16 years old, and Pervasive Developmental Disorder waivers, more families are getting the insurance coverage necessary to provide their children with ABA therapy. “Without this type of help, parents have to pay out-of-pocket for this therapy, which can run several thousand dollars a month,” Casey says. “I believe that more can and should be done to assist parents with the costs.”
Not all families are eligible for ABA benefits and, therefore, are responsible for all of their therapy expenses. For Anaisabel LeMarie, whose son was diagnosed six years ago, the costs of therapy have caused significant hardship. “Until recently, our insurance company did not help military retirees with their costs,” she says. “There is a need for understanding that, financially, this is very hard. It is possible for a child with autism to have a good future, but they must participate in a lot of programs that are expensive.”
And while therapy is expensive, Anaisabel has seen an immense improvement in her son after six years of intensive therapy at home and at school. “I was so blessed to meet Dr. McCarthy. We know my son is going to have autism for life, but we are doing our best to develop a happy and socially active boy.”
The cost of care is just one of the many challenges a family affected by autism faces. For Casey, it is critical to understand that people with autism are just that – people – and they deserve to be treated with respect. “They aren’t scary. They aren’t weird. They are unique, amazing people who have extraordinary gifts to share with the world,” says Casey. “My son may act differently than yours, but the majority of the time he acts and behaves like any other 7-year-old.”
Casey asks that others hold their judgment if they see a child out in public having a meltdown. For many children with autism, crowds or sensitivity to light and sound may be difficult for them to manage. Anaisabel agrees. “Sometimes people see children with autism acting differently and assume they are bad kids. Other kids bother them and make fun of them. Sometimes they have their moments, but they are beautiful, loving kids and have big hearts.”
Thankfully, there are organizations like the Autism Institute, the Autism Society and Family Connection of South Carolina to provide support for parents and their children.
The Autism Society offers extensive support to families affected by autism. The purpose of the society is to enable all individuals with autism spectrum disorders to reach their maximum potential. “Bringing about awareness and education on autism spectrum disorders is critical and what our focus is locally,” says Kim. The Autism Society provides a variety of programs to parents and professionals, including Autism and Informed Response, which includes training for emergency responders, such as law enforcement, EMS and firefighters, among others. The organization also offers a Parent-School Partnership program, which aims to assist children with autism in receiving the best education possible by helping build relationships between the school and the parents.
Family Connection of South Carolina is a statewide organization that hosts support groups for parents and siblings of children on the autism spectrum and provides a volunteer parent-to-parent mentor for families as soon as their child is diagnosed with a disability. Pat currently serves as the facilitator for the Family Connection parent support group in Columbia.
Much support exists in Columbia for families, including several Board Certified Behavior Analysts who provide behavioral support for people on the autism spectrum. A directory of by zip code can be found at www.bacb.com, the Behavior Analyst Certification Board’s website.
Kim stresses that parents should have their child tested as early as possible if they feel their child is displaying signs of an autistic spectrum disorder. They can first talk to their pediatrician or contact the Department of Disabilities and Special Needs to begin the process.
While there are a number of fantastic organizations that support families affected by autism, Anaisabel says that parents, above all, have to be their children’s first advocate. “We are our children’s voice,” she says. And with the positive voice of parents and the support of organizations like the South Carolina Autism Society and the Autism Institute of South Carolina, partnership opportunities and advocacy programs will continue to grow – as will understanding and awareness.
For more information, contact the South Carolina Autism Society at (800) 438-4790 and www.scautism.org or the Autism Institute of South Carolina at (803) 790-9975 and www.autisminstitutesc.com.