Prisma Health Children’s Hospital established the multidisciplinary Autism Wonders program in 2008 to provide families of children with autism spectrum disorder (ASD) in the Upstate of South Carolina a coordinated evaluation and care program of the highest quality.
Our program provides multidisciplinary diagnostic and follow-up treatment services. The core members of this program include our developmental-behavioral pediatricians, pediatric psychologists, nurse practitioners, and nurses. We also routinely collaborate with other subspecialists and ancillary care providers to provide comprehensive care for our patients.
Autism spectrum disorder (ASD)
What is autism spectrum disorder (ASD)?
Autism spectrum disorder (ASD), as defined in the Diagnostic and Statistical Manual of Mental Disorders 5th (DSM 5) Edition, is characterized by “persistent impairments in reciprocal social communication and social interaction…, and restricted, repetitive, patterns of behavior, interests, or activities…” The symptoms must be present in the early developmental period and cause clinically significant impairments in functioning.
Why does it vary in its presentation?
ASD involves a wide spectrum of behaviors that range from mild to severe. People with ASD show different combinations of these behaviors in varying degrees of severity. Frequently associated features with ASD include intellectual disability or varied profiles of abilities, language impairment, motor difficulties, self-injurious behaviors, and disruptive or challenging behaviors. Adolescents and adults with ASD are prone to anxiety and depression. Thus, two people may have the same diagnosis but show very different behaviors.
How common is ASD?
The Center for Disease Control (CDC) reports that 1 in 88 children has been identified with an ASD. ASDs are nearly 5 times more common among boys (1 in 54) than among girls (1 in 252). ASDs occur across racial, ethnic, and socioeconomic groups.
What causes ASD?
Though the exact cause of ASD is unknown, it is generally accepted that abnormalities in brain structure or function underlies the disorder. Research has suggested that there is a genetic component because the risk of having ASD increases to about 1 in 5 if the child has a brother or sister with ASD. ASD occurs more frequently in people with certain medical conditions such as Fragile X syndrome and tuberous sclerosis. We do know that ASD is not caused by bad parenting.
Is there a cure for ASD?
At this time, there is no cure for ASD. However, early intensive behavioral intervention has been shown to help children with ASD improve their socialization and communication skills. Factors that impact individual outcomes for ASD include the presence or absence of associated intellectual disability and language impairment and additional mental health problems.
How is ASD different from the previous DSM 5 diagnoses of Autism, Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified?
There are many similarities between the DSM 5 diagnosis of ASD and the previous DSM 5 diagnoses but also some differences. Rather than the three domains identified in the DSM 5 diagnostic criteria for autism, DSM 5 has two domains:
Social communication and social interaction:
- Difficulties with social communication.
- Failure to initiate or respond to conversation.
- Atypical eye contact, gestures, or body language.
- Difficulties in sharing imaginary play.
- Absence of interest in peers or difficulty making friends.
Restricted, repetitive patterns of behavior, interests, or activities:
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., hand flapping).
- Adherence to routines or ritualized patterns of behavior or speech (e.g., eating the same food every day).
- Interests that are atypical in intensity or focus (e.g., preoccupation with unusual objects).
- Hyper-or hyporeactivity to sensory input or unusual interest in sensory stimuli (e.g., appearing indifferent to pain).
A delay or lack of speech was removed from the criteria for DSM 5 as this was not unique to children ASD. The focus was changed from looking at individual pretend play to whether the individual can cooperatively play with others. Hyper or hyporeactivity to sensory stimuli was added to DSM 5 criteria.
DSM 5 also requires identification of the current severity of symptoms with each domain of social communication and social interaction and restricted, repetitive patterns of behavior. Determination of severity is based upon the level of impairment in an individual with ASD. Severity can range from “requiring support” to “requiring very substantial support” to function in daily activities. The severity of symptoms within each domain can vary based on the situation. The severity of symptoms may also vary over time.
My child was diagnosed with autistic disorder, Asperger’s Disorder, or pervasive developmental disorder not otherwise specified under DSM IV. Do they need to be re-evaluated?
It is important to note that DSM 5 states: “Individuals with a well-established DSM5 diagnosis of autistic disorder, Asperger’s disorder or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.”
Treatment options
There are many treatments for ASD. Deciding which intervention to pursue may seem like an overwhelming decision. When choosing an intervention, it is critical to examine the evidence (or supporting research) for the treatment you are considering. It is also important to consider a child’s needs/skills and the goals for intervention. It will often be necessary to investigate multiple intervention programs available to determine what will best fit the child’s needs.
The CDC breaks treatments for ASD into the following categories:
Behavior and communication approaches
Applied Behavior Analysis (ABA)
- There are different types of ABA. The following are some examples:
- Discrete trial training (DTT): DTT is a style of teaching that uses a series of trials to teach each step of a desired behavior or response. Lessons are broken down into their simplest parts and positive reinforcement is used to reward correct answers and behaviors. Incorrect answers are ignored.
- Early intensive behavioral intervention (EIBI): This is a type of ABA for very young children with ASD, usually younger than five, and often younger than three.
- Pivotal response training (PRT): PRT aims to increase a child’s motivation to learn, monitor their own behavior, and initiate communication with others. Positive changes in these behaviors should have widespread effects on other behaviors.
- Verbal behavior intervention (VBI): VBI is a type of ABA that focuses on teaching verbal skills.
- Other therapies that can be part of a complete treatment program for a child with an ASD include:
- Developmental, individual differences, relationship-based approach (also called “Floortime”): Floortime focuses on emotional and relational development (feelings, relationships with caregivers). It also focuses on how the child deals with sights, sounds, and smells.
- Treatment and education of autistic and related communication-handicapped children (TEACCH): TEAACH uses visual cues to teach skills. For example, picture cards can help teach a child how to get dressed by breaking information down into small steps.
- Occupational therapy: Occupational therapy teaches skills that help the person live as independently as possible. Skills might include dressing, eating, bathing, and relating to people.
- Sensory integration therapy: Sensory integration therapy helps the person deal with sensory information, like sights, sounds, and smells. Sensory integration therapy could help a child who is bothered by certain sounds or does not like to be touched.
- Speech therapy: Speech therapy helps to improve the person’s communication skills. Some people are able to learn verbal communication skills. For others, using gestures or picture boards is more realistic.
- The picture exchange communication system (PECS): PECS uses picture symbols to teach communication skills. The person is taught to use picture symbols to ask and answer questions and have a conversation
Dietary approaches
Changes in diet are frequently recommended as part of popular biomedical interventions for ASD. Removal of certain types of foods (e.g., foods containing gluten, casein, artificial coloring/flavors) and/or additions of certain vitamins and minerals may be included in these approaches. Dietary treatments are based on the idea that food allergies or lack of vitamins and minerals cause symptoms of ASDs.
There is currently insufficient scientific evidence to support the use of dietary changes or restrictions in children with ASD. If you are thinking about changing your child’s diet, talk to their doctor first. If in consultation with your child’s physician you decide to implement any special diet with your child, it may also be important to consult with a nutritionist to be sure your child is still getting adequate amounts of important macronutrients and vitamins and minerals.
Medication
There is currently no medication treatment that has been shown effective in treating all the core symptoms of ASD. There are, however, medications that can help some people manage symptoms related to the diagnosis. For example, medication might be prescribed to help address hyperactivity, attention and focus, depression, or seizures. Also, the U.S. Food and Drug Administration approved the use of risperidone and aripripazole (antipsychotic drugs) to treat severe tantrums, aggression, and self-injurious behaviors in children with ASDs who are over a certain age.
Complementary and alternative treatments
Some parents and healthcare providers use or advocate for treatments that are outside of what is typically recommended by medical professionals. These types of treatments are known as complementary and alternative medical approaches. They might include special diets, chelation (a treatment to remove heavy metals like lead from the body), biologicals (e.g., secretin), or body-based systems (like deep pressure).
These types of treatments are controversial. Current research shows that as many as one-third of parents of children with an ASD may have tried complementary or alternative medicine treatments, and up to 10% may be using a potentially dangerous treatment. Before starting such a treatment, check it out very carefully, and be sure to talk to your child’s doctor.
Please note that this is not an inclusive list of treatment options but are examples of available interventions. Inclusion in this description does not mean endorsem*nt by Autism Wonders, the Division of Developmental-Behavioral Pediatrics, Division of Pediatric Psychology or Prisma Health.
*Information for this section adapted from the Centers for Disease Control and Prevention (CDC) website. https://www.cdc.gov/NCBDDD/autism/treatment.html
Autism therapy resources
ABA: What is Applied Behavioral Analysis?
Applied behavior analysis (ABA) uses a scientific method of identifying and studying behavior in order to then be able to respond appropriately in order to change the behavior. ABA therapy is the only evidence-based treatment shown to improve functioning in children with an autism spectrum disorder.
ABA principles generally are applied on an individualized basis, and therapy usually is carried out one-on-one. ABA can be used both to decrease maladaptive behaviors and to increase adaptive functioning. Communication, social, academic, self-care, motor and play skills all can be targeted for improvement in an ABA program.
How can families access ABA following a diagnosis of autism/pervasive developmental disorder (PDD)?
In South Carolina, families can access professional ABA services after receiving a diagnosis of autism spectrum disorder in four ways:
- They can self-pay for services.
- Children under age 3 may receive ABA therapy through BabyNet.
- Families may receive coverage through their private insurance company if the policy honors Ryan’s Law.
- Children may receive services through the SC PDD Waiver.
South Carolina BabyNet
BabyNet is the state’s interagency system of early intervention services for families who have infants and toddlers, birth to age 3, with developmental delays or conditions associated with developmental delays.
Children diagnosed with autism spectrum disorder who are served by BabyNet may be eligible to receive ABA therapy (at no cost to the family). Families should speak to their child’s early interventionist for more information about applying for this service.
Ryan’s Law
Ryan’s Law requires insurance companies doing business in South Carolina (with four exceptions noted below) to cover up to $50,000 a year in behavioral therapy for children diagnosed by age 8 (coverage is available until a child turns 16). It also prohibits insurance companies from refusing to cover someone because that person has autism.
Coverage exceptions include:
- People employed by the federal government and thus covered by Tricare (military insurance) or one of the FEHBP plans (federal civilian insurance).
- People who get insurance through a self-insured company. Parents/caregivers must check directly with their employer to find out if their company is self-insured.
- People who get insurance through a small business (fewer than 50 people).
- People who buy individual insurance policies.
Families should contact their insurance company to determine if they are eligible for services under Ryan’s Law.
South Carolina PDD Waiver
The Pervasive Developmental Disorder Waiver provides for early intensive behavioral intervention services to children (ages 3–10) diagnosed with autism spectrum disorder or have been previously diagnosed with a PDD, including autism and Asperger’s Syndrome. These services are limited to non-educational settings.
Eligibility criteria include:
- Children must be ages 3–10.
- Children must be diagnosed with a PDD before turning 9 years old. The diagnosis must be made by a qualified professional.
- Families must meet eligibility criteria for either income-based or TEFRA Medicaid, or they must provide documentation of application (even if denied).
Families should talk to their child’s service coordinator or another representative from the Department of Disabilities and Special Needs (DDSN) for a full explanation of waiver eligibility requirements.
To apply for PDD waiver services:
- Families currently receiving DDSN services: Contact the child’s service coordinator and request that the child goes through the intake process for the PDD Waiver.
- Families not receiving DDSN services: Call the PDD Waiver Intake and Referral toll-free number (1-888-576-4658).
Additional resources
Some children who meet educational diagnostic criteria for autism may be eligible to receive behavioral therapies or supports at school. Please speak with your district’s special education department for more information.
Some families choose to design and implement their own at-home ABA program. A helpful resource for helping families create an at-home program is "Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals" by Catherine Maurice. This is a good starting place for many families. This book contains sample curricula and programs, as well as many of the forms needed to track progress.
Community resources
Below is a list of the most commonly accessed resources in our community:
Department of Disabilities and Special Needs:
- Children ages 0–3 years old: Contact BabyNet at 1-800-868-0404 to begin the screening process to determine eligibility
- Children ages 3 and older: Contact 1-800-289-7012 to begin the screening process to determine eligibility
TEFRA Medicaid:
- Supplemental insurance available to some children diagnosed with autism, regardless of the financial situation of the family
- Contact our Clinical Services Coordinators for an application or to ask about applying for this insurance
South Carolina Autism Society:
- Parent to School Partnership program, resource connection, and support
- Website: www.scautism.org
- Upstate SC chapter: 864-241-8669
Family Connection:
- Support groups, educational programs, and resource guidance
- Upstate office located at the Center for Developmental Services in downtown Greenville: 864-331-1340
Child Find
- Screening and evaluation for school-age children to determine eligibility for additional resources, therapies, and individualized education plans in the public schools
- Greenville Child Find office: 864-331-1302 (Clinical Service Coordinators have access to other county contact information)
PDD Waiver List for ABA Therapy
- Medicaid Waiver waiting list to provide Applied Behavioral Analysis (ABA) therapy for eligible children.
- Discuss this opportunity with your early interventionist or service coordinator
- Call 1-888-576-4658 to initiate intake process
Helpful websites
Spending time researching online resources can be helpful and informative. However, be careful to read from trusted and reputable sites; beware of websites that claim to “cure” or “heal” your child. Add useful websites to your ‘favorites’ in your search engine, register for e-newsletters and/or join a list-serv where parents and professionals share information. Below are several reputable websites that you may want to explore:
www.winstonswishfoundation.com
If at any time you should have additional questions regarding these or other resources, please contact the Autism Program’s Clinical Service Coordinators at 864-454-5644.
