By Sally Burke
The reality of an Autism Spectrum Disorder (ASD) diagnosis can have a tremendous emotional impact on parents. You may feel anger, frustration, and sadness, or perhaps even relief in this long-suspected diagnosis.
According to the Centers for Disease Control and Prevention, it has been estimated that 1 in 68 children have ASD. Know that you are not alone; support and resources are available to you.
With your child’s diagnosis, your pediatrician will direct you to helpful resource material such as the “100 Day Kit for Newly Diagnosed Families of Young Children” published by AutismSpeaks and available for download.
“Sound Advice on Autism,” a collection of interviews with pediatricians, researchers, and parents that addresses specific questions about autism spectrum disorders, is offered by the American Academy of Pediatrics.
Within the diagnosis letter, your pediatrician will recommend services for your child. Among them may be educational, behavioral, and consultative services based on the principles of Applied Behavioral Analysis (ABA). Your child may need instruction across a variety of domains, from activities of daily living, functional and augmentative communication, and functional academics, to community outings, safety awareness, and social skills.
Your pediatrician will also recommend a specific number of treatment hours (for ABA, speech therapy, occupational therapy, etc.), which varies on a case-by-case basis.
To help you find service providers, the Early Intervention Program within the Department of Public Health offers a list of autism support centers that provide the services your child needs. It is recommended that you and your child visit at least three service providers prior to making a decision on one. Each provider will conduct an intake session, which is essentially a mini-orientation that enables you, your child, and the service provider to get acquainted. You will also learn more about the types of services offered.
During your initial consultation with each service provider, be sure to ask whether they will be able to offer the number of hours your child needs within the parameters of your schedule. Do not be shocked or dismayed if they cannot offer all the hours recommended. With an increasing number of children diagnosed with ASD, many service providers are faced with the challenge of not having enough staff with specialized training to meet demand. To give you an example, the number of clients our organization is able to work with is dictated by the number of Board Certified Behavior Analysts (BCBA) we have on staff. (It is important to note that many insurance companies will only cover treatment with BCBA supervision, so it is imperative that you determine insurance coverage prior to the start of your child’s treatment plan.)
You may find that some service providers simply cannot accommodate the number of treatment hours recommended by your pediatrician. In this case, you may decide to start your child right away at fewer than the prescribed number of hours rather than wait until the provider can accommodate all the hours your child needs.
Asking the right questions
Along with availability, your comfort level and their expertise are other critical components to consider when selecting a provider. Below are several key questions to ask each provider during your initial consultation (and make note of their answers):
* What are the qualifications and certifications of each staff member who will be working with my child? (For example, BCBA certification requires a master’s degree.)
* Will your staff share techniques and provide specific training to our family members and caregivers?
* Will you help us navigate special education and instructional services at my child’s school?
Once you complete each intake session, consider each provider’s answers to the above questions and jot down your thoughts and feelings. Whom did you have a rapport with? Were you comfortable with the overall environment — the staff and facility? Did you feel your questions and concerns were appreciated?
Be sure to seek feedback from peer parents or from each service provider’s references. Your local autism support center may also be able to connect you with other parents who are already working with those providers.
Remember, there are many resources available to you, including other families in similar situations. Be proactive. By learning all you can, reaching out to your peers, and building a strong support network, you will enhance the journey for you and your child.
Sally Burke, M.S. Ed., BCB, is director of Early Intervention Services at Behavioral Concepts, Inc. BCI has two locations, Worcester and Fitchburg, and serves children with autism from communities within a one-hour radius of its Worcester location. For more information, visit bciaba.com.