Recommendations for Young Children Diagnosed with Autism
The following recommendations are offered to families of children who participate in research studies at the Duke Center for Autism and Brain Development. Every child and each family has unique needs. Intervention therapies differ in terms of structure, time commitment, service location, approach, and learning goals. We recommend that parents consider which approach may be helpful and work best for your child and your family. Our providers would be glad to answer questions to help you make the best choice for your child. Families are encouraged to discuss intervention therapies and treatments with your primary care provider.
Early Intervention for Infants through Preschool Age (birth through 5 years of age)
Children diagnosed with autism may qualify for early behavioral intervention through their health insurance provider, including Medicaid. In NC, the Autism Insurance Coverage and Mental Health Parity legislation (SB 676) requires large group health plans to offer intensive treatment of autism called, “Adaptive Behavior Treatment,” which includes several, different interventions, such as Naturalistic Developmental Behavioral Interventions (e.g., the Early Start Denver Model), Applied Behavior Analysis (ABA), and TEACCH. For more information about NC’s adaptive behavior treatment coverage under NC SB 676, visit the information found at the Autism Society of NC here: https://www.autismsocietync.org/faqs-related-to-sb-676-autism-health-in….
Early behavioral intervention, sometimes called “therapy,” includes a range of treatments that differ in terms of their philosophy and approach. All evidence-based approaches are:
(1) ones that scientific research has shown to be effective,
(2) individualized,
(3) define clear treatment objectives tailored to the needs, values, and goals of the child and family with regular assessments to determine whether those objectives are being met, and
(4) involve the family in the intervention.
Educational Resources
Children diagnosed with autism benefit from specialized instruction, which supports and helps promote the development of social, communicative, and everyday living skills (e.g., toileting, eating, dressing). They also benefit from additional supports tailored for everyday routines within the home and community settings. It is important that each treatment and educational plan be tailored to meet individual child and family needs, values, and goals.
Parents living in North Carolina may want to share the current diagnostic test results with your child’s primary care provider and their county’s Early Intervention Service Coordinator (birth to three years) or Preschool Coordinator (three to five years). In NC, these professionals assist in determining eligibility for early intervention services through the NC Infant-Toddler Program (Part C) or NC Preschool Program (Part B), through an Individualized Family Service Plan (IFSP) or an Individualized Education Plan (IEP).
The NC Infant-Toddler Program/Preschool Program may be able to help families with service coordination to assist in access to early intervention services, such as speech, occupational, and developmental therapies. NC provides information at the links below:
https://beearly.nc.gov/index.php/families/getting-started https://www.dpi.nc.gov/districts-schools/classroom-resources/office-ear… https://beearly.nc.gov/data/files/pdf/transitionshandbook.pdf For those living outside of NC, similar services may be available in your state. Check with your state’s division of the US Department of Health and Human Services or division of the US Department of Education for more information.
Speech Language and Occupational Therapy
Many children on the autism spectrum benefit from speech language and occupational therapy services to promote communication, social skills, and fine motor skills. Speech and/or occupational therapy may also be helpful when a child has challenges with feeding and sensory differences. These therapies are most effective when families are actively involved, so that they can learn strategies to help the child use these new skills at home, with different people, and in different settings. Speech and occupational therapies may be available through the early intervention support and resource system in place in your state. In NC, these therapies may be included within an Individualized Family Service Plan (IFSP) or Individualized Education Plan (IEP). Speech and occupational therapy services are also available through private providers, and may be covered through health insurance.
Medical Follow-up
Parents are encouraged to share the results of the evaluation(s) completed during the research study with your child’s primary care physician or pediatrician. This will help support care coordination and referrals. Your doctor may recommend additional evaluations, such as genetic testing. Genetic testing should be considered if your child has unusual physical features or if there is a family history of Fragile X syndrome, intellectual disability of unknown cause, or other genetic conditions.
Online Resources and Community Support for Autism
The Autism Society of America, and its state affiliates, such as the Autism Society of North Carolina (ASNC) [https://www.autismsociety-nc.org] works to increase public awareness and improve services for individuals with autism. In NC, ASNC provides many supports to families, such as behavioral intervention services, support groups, summer camp programming, and workshops. In addition, the Interacting with Autism website has videos and resources here: (http://www.interactingwithautism.com/).
Early Start Denver Model (ESDM) caregiver-coaching modules are now available here: https://helpisinyourhands.org. These free, online resources for families of young children with social communication challenges can be accessed via smart phones, tablets, and computers, and share strategies that promote social interaction, communication, and learning during everyday activities.
Early Behavioral Intervention – Frequently Asked Questions
The needs of each child and family are unique. We recommend that parents discuss early behavioral intervention, sometimes called “therapy,” with your child’s primary care provider or pediatrician to help make the best choice for your child and family. High quality early behavioral intervention emphasizes meaningful skill development targeted to your child’s unique needs and goals, in close collaboration with your child and your family.
What is Early Behavioral Intervention?
Early behavioral interventions (EBI) are intervention approaches that are:
(1) evidence-based (meaning that scientific research has shown it to be effective),
(2) individualized,
(3) define clear treatment objectives tailored to the needs of the child with regular assessments to determine whether those goals are being met, and
(4) involve the caregiver in the intervention.
EBI is sometimes referred to as “early behavioral therapy” or “early behavioral intervention therapy.” More information about EBI can be found here: https://www.cdc.gov/ncbddd/actearly/whyActEarly.html. EBI includes many different techniques depending on the type, the training of the therapist, and the skills or needs of your child. Common interventions offered include Applied Behavior Analysis (ABA), Structured Teaching (TEACCH), and Naturalistic Developmental Behavioral Interventions (NDBIs) such as Early Start Denver Model (ESDM), which uses behavioral principles to teach skills in natural environments. Intervention approaches differ in terms of structure, approach, and learning goals. Find out what providers offer in your area and think through which approach would work best for your child and your family.
Does my insurance cover EBI therapy?
Contact your insurance provider and ask if EBI services are covered, now that your child has a diagnosis of autism, also referred to as autism spectrum disorder (ASD). Various early behavioral interventions may be referred to as “Adaptive Behavior Treatment (ABT)” by health insurance providers in North Carolina. It may be helpful to ask for a list of covered, in-network EBI providers from your insurance provider.
Who are EBI providers in the Durham, NC, area? How do I get connected?
The Duke Center for Autism and Brain Development has gathered a list of NC providers. Your insurance provider may have a list of covered, in-network providers. You can also contact individual EBI providers to ask about current services. Do I need a referral for EBI? Call your insurance provider and ask if a referral is required for EBI services. Some insurance providers require a referral from your child’s pediatrician for EBI.
What information does the EBI provider need from me?
EBI providers will need a copy of the evaluation report completed as part of your child’s participation in the research study in order to confirm the autism diagnosis. Providers may also require a written referral from your child’s pediatrician.
Does EBI happen at my home or in a clinic setting?
Therapy may occur at your home or in a clinic setting. This decision is dependent on the type of intervention, needs of your child, your family’s preference, and the availability of the EBI provider. Some EBI providers have taken steps to provide telehealth services to families who need EBI therapy. Each provider can share more information regarding its current service delivery. How many hours of EBI will my child receive? EBI providers will evaluate your child to determine the number of hours of therapy recommended for your child. It is important that the number of hours of EBI be tailored to meet your child and your family’s needs.
How long will the waitlist be to get in?
Waitlists vary from one provider to the next. You may decide it is a good idea to add your child to a few waitlists in order to improve the chances of getting in sooner for EBI therapy. Who can I turn to if I have more questions about EBI therapy for my child? Please contact the psychologist or study team that completed your child’s evaluation with additional questions. It may also be helpful to review your questions with your child’s pediatrician or service coordinator with the Children’s Developmental Service Agency (CDSA).