Debbie knew her dad was angry. It wasn’t in the expression on his face or even the tone of his voice. As a child with autism, Debbie often missed the subtle social cues that many of us count on to guide us through complex relationships. The only way Debbie knew her dad was upset was through the volume her dad used when speaking to her and, though she didn’t want him to be troubled, she lacked the tools to say she was sorry.
The communication issue these Las Vegas residents have often experienced serves as just one example of the complexity of autism spectrum disorder, a developmental disability that affects children and adults, and individuals with ASD often have difficulty with social communication and interactions. While there is a wide range of ability among people with ASD, it is not uncommon for some to be gifted and others to need significant levels of support to ensure their health and well-being. Although great strides are being made in the diagnosis and treatment of ASD, there remains no known cause, or a known singular effective treatment for ASD.
For individuals such as Debbie, symptoms of ASD can sometimes present obstacles to achieving and maintaining independence as an adult. This is why it is often important for those with autism and other disabilities to use programs and services that help them develop important skills and receive support for managing their conditions, allowing them to achieve quality of life.
Providing these kinds of services remains a top priority for Easter Seals Nevada, a nonprofit offering comprehensive programs for people of all ages with disabilities and other challenges, including ASD. In addition to providing early intervention and development programs for infants, children and youth, the nonprofit recognizes the importance of also offering supportive services for adults, including employment skills training, job placement assistance and classes that teach skills for everyday living.
“There is a common misconception that individuals with disabilities and other conditions aren’t capable of enjoying an independent lifestyle, but that isn’t true in all cases,” said Brian Patchett, CEO and president of Easter Seals Nevada. “With a comprehensive support system, it is often possible for these individuals to manage their conditions and have fulfilling lives.”
A widespread condition
Recently the Centers for Disease Control and Prevention released new data on the prevalence of autism in the United States, and the numbers are alarming. Reported cases of ASD and other related disabilities show a three-fold increase in autism among special education students between 2000 and 2010. This surveillance study identified one in 45 children (one in 42 boys and one in 189 girls) as having ASD. Moreover, the report shows that less than half the children identified with autism (43 percent) had received comprehensive developmental evaluations by age 3.
This increase is also reported across Nevada. The number of children with autism in Nevada has climbed from less than 500 to more than 5,000 since the year 2000, according to a state autism profile.
“This significant rise in cases of Nevada residents with autism underscores the need for supportive services, not just for children but for adults, as well,” Patchett said. “It’s important to recognize that providing support can make a critical difference in the kinds of lives they lead.”
While increased awareness of autism has helped increase recognition and diagnosis of the disorder, the apparent rise in cases triggers three burning questions for parents, physicians, and scientists. Is autism truly on the rise, or do the numbers simply reflect a growing awareness of the condition? Or do the rising numbers echo an expanding definition of ASD and how more individuals fit the profile? Finally, if autism is on the rise at the alarming rates that recent studies reflect, what is the cause?
“These are questions researchers must continue to look at, as an increasing population faces symptoms of ASD,” Patchett said.
For Debbie and her family, the issue of rising autism rates was far removed from the daily struggle they endured. As Las Vegas residents, they desperately sought services and assistance and, at age 7, Debbie joined the Easter Seals Nevada comprehensive autism program. Serving more than 8,400 children and adults with disabilities and their families in Nevada each year, Easter Seals Nevada is part of a worldwide affiliate organization that addresses disability issues to over 1.5 million clients on four continents.
When Debbie first began Easter Seals Nevada services, she was incredibly withdrawn, sometimes aggressive and unwilling to participate in any of the activities the other children enjoyed. She showed some of the most common characteristics of being on the autism spectrum, including persistent difficulties with social communication and social interaction. She did not know how to begin or carry on a conversation, or how to join in activities with other children, nor did she understand social rules, such as how far to stand from somebody or what things may be inappropriate to say. As a result, Debbie was frustrated and showed this frustration by acting out, often hitting others and herself.
Easter Seals Nevada strives to begin addressing such behaviors among individuals with ASD at a very young age with early intervention efforts, including providing Board Certified Behavior Analysts to develop customized plans that address a child’s needs with play skills, language and communication, self-help, motor skills and problem behaviors. Trained interventionists work with families in their own homes to implement these plans.
“Research indicates that early intervention efforts can play a significant role in addressing symptoms of autism over the long-term,” Patchett said.
With behavior interventionists and a speech therapist working with Debbie in a center-based child care facility and in her home, Debbie and her family learned strategies that would calm her down, help her to communicate, and allow her to interact more appropriately with others. As a result, she was able to make friends, communicate her wants, needs and frustrations in non-aggressive ways, and she was much better equipped to concentrate and learn in school.
Providing support into adulthood
As she aged out of the school system, Debbie still had some challenges to overcome, however. These challenges are inherent to many people with autism. Restricted, repetitive patterns of behavior, quirky interests, or unusual activities are common traits and can become a barrier to participating in social activities or even employment. Some people on the autism spectrum may be hypersensitive to certain sounds, or have an inability to effectively communicate or follow a routine.
Through its employment services, Easter Seals Nevada was able to provide Debbie with career counseling and admittance to the organization’s Community Training Services program where goals could be set for her future success. Designed to support adults with various disabilities and conditions, this program allows individuals to earn wages while acquiring vital employment experience and skills.
Debbie discovered that she was very good at assembling things, as the continuous pattern of assembly made it easier for her to concentrate on one thing, rather than many different tasks. Easter Seals Nevada job developers found a perfect opportunity for Debbie to work in an assembly environment where she assembled and disassembled motorized shopping carts. For Debbie, the work was meaningful and she has been very happy and successful in her employment.
Debbie’s story is very similar to many people with autism. There are barriers that can seem insurmountable. There are situations that seem intolerable. People with disabilities, including autism, can achieve their goals with the help of their natural supports at home and in the community, as well as services such as those provided by Easter Seals Nevada.
“Working with Debbie has demonstrated how much potential people with autism and other disabilities have, if they have access to the right resources,” Patchett said. “We look forward to watching Debbie thrive, and we hope that many more Nevada residents with autism receive full support to accomplish everything they are capable of achieving.”
Easter Seals Nevada services include
• Autism
Easter Seals’ Answers for Autism program provides in home, one-on-one ABA (Applied Behavior Analysis) to children and young adults on the autism spectrum.
A comprehensive plan is written for each family so that the participant receives maximum assistance in meeting their goals, both with the interventionist and skills taught to families.
• Assistive Technology
Assistive Technology is any device that helps someone to work, play or receive education independently, and the process includes a full evaluation, demonstration of devices and training.
• Early Intervention
Early intervention services help children, ages birth to 3 with disabilities, achieve their goals in cognitive, social/emotional, communicative, adaptive and physical development. Services may include occupational therapy, physical therapy, and speech therapy, and usually take place in the family’s home so that parents can take part of their child’s development.
• Adult Day Services
Easter Seals Nevada’s Adult Day Services offers adults with disabilities individualized programs to help them gain greater independence and teaches rehabilitation and self-help skills for social interaction during the day. For many families, Easter Seals Nevada is a home away from home for their loved one with a disability.
• Employment Services
Easter Seals Nevada offers an entire array of employment services for people with all types and degrees of disability. For those individuals with the most significant disabilities, they offer Community Training Services that allow individuals to earn wages while acquiring vital employment skills.
• Respite
Easter Seals Nevada provides a respite reimbursement program to families of children with special needs, which allows a family to choose a care provider that they trust to be with their child so they can have some time for themselves to take part in other activities, such as a date night, attend an activity with another child, grocery shop, attend a class, etc.
• Independent Living
As maximum independence is the cornerstone of Easter Seals Nevada’s services, they assists with home and vehicle modifications that will help someone reach their greatest level of independence.