Your child is on the autism spectrum. The diagnosis is life altering for parents, siblings, grandparents, and everyone else in your child’s immediate life.
You are not alone. Autism is common, and in one way or another, we all know of someone who has been diagnosed with ASD. The Center for Disease Control and Prevention (CDC) estimates that one in 59 children have ASD and it is four times more prevalent in boys than girls.
Still, as prevalent as it may be, it can be difficult to know where to start or what you can do to help your child when you first get the diagnosis. Here’s a guide to the first steps.
The best place to start is the diagnostic report. The pediatrician who diagnosed your child will help direct your first steps by providing their recommendations for treatment. The pediatrician’s report essentially serves as a “road map” for your family.
The pediatrician will list the treatments that would be beneficial for your child based on the skills that were observed during the assessment. Among these, some recommendations are speech therapy, occupational therapy, and applied behavior analysis (ABA).
Most families have heard of the first two therapies. ABA is an evidence-based approach that uses the principles of how learning takes place to teach skills that will increase your child’s abilities in the areas of self-care, communication, social interactions, and play skills. ABA can also work to help decrease challenging behaviors that may interfere with learning and daily life skills.
Finding service providers
The best way to find the services that your pediatrician recommends is through the Early Intervention (EI) program. If your child is not part of an EI program, you can visit the Massachusetts Early Intervention Division website at www.mass.gov/orgs/early-intervention-division and find a certified EI program. The process is as easy as calling the number 1-800-905-8437, and anyone can make a referral (a doctor, teacher, parent, friend, etc.).
Your EI coordinator will help you navigate a list of providers for the services that your child needs. It is recommended that you interview or meet with three to five different providers before making a decision. Each provider will conduct an intake and give you an overview of the services that are available for your child.
Provider intake sessions
Coordinating intake sessions (interviews) with service providers is your next step. Each service provider will give you an overview of who they are and what they offer. Ensuring a good match for your child can really only be determined by getting acquainted with each service provider. Observe their interaction. How well did the provider interact with your child? How well did your child interact with the provider?
The intake session is a great opportunity to ask the questions that are important to you and start learning about the different service providers. Also, asking questions during these intakes will make you feel empowered to start your journey as your child’s “voice.” These are some questions that you might consider asking:
How soon can services start? ASD has become a common diagnosis. Many providers face the challenge of not having enough staff to meet increased demand for services, which means there may be a delay in starting direct care services. Additionally, not all providers will be able to provide services within the schedule that works for the family. For example, you might be looking for services in the evening after you get home from work, which is a very popular time of the day for sessions. Children who go to a full day school program can only receive in-home ABA services at that time, so there might be a longer wait time for that time slot. Don’t get discouraged. Your child can start with as few as four hours per week and then increase their time with a provider when staff becomes available. The most important thing is to start services as soon as possible.
What is the process for starting services? Even though your child has already been assessed by a doctor, a Board Certified Behavior Analyst (BCBA) must also conduct an assessment. After a service provider is selected, the BCBA will request an authorization from the insurance to conduct an initial assessment. This assessment is not meant determine whether your child has autism not, but rather to identify what your child can do. Based on your child’s performance levels, an individualized treatment plan will be developed and submitted to the insurance. Once the initial treatment plan is approved by the insurance (which may take some time), services can begin.
What will happen when my child turns 3 years old? EI services end one day before a child turns 3, which means that everything that a child receives through the program will be discontinued. However, many insurance companies cover ABA services and the BCBA will help the family transition from EI to insurance-based ABA services. Sometimes, there is a waiting list for this type of service, which is why is important to ask providers how they transition from one program to the other. Find out upfront if this continuation of services is available so there is no gap and your child may make this transition with ease.
What are the qualifications of the staff who will be working with my child? A BCBA must have a Master’s degree and a Registered Behavior Technician (RBT) needs to pass a comprehensive exam. In order to maintain this certification, RBTs need continuous supervision by a BCBA. Make sure that your insurance offers ABA coverage. Many insurance companies do not cover ABA services unless they are provided by, or overseen by, a BCBA.
What will my role be in my child’s treatment sessions? Learn strategies to help you carry over what is taught during the session. Every now and then (and especially when the BCBA is present), you can sit and watch the sessions and ask questions about programming. BCBAs will also conduct parent training sessions where you will learn about the basic principles of behavior analysis and how you may use these principles outside of the therapy sessions. In this way, you are helping your child to generalize skills across time, people, and settings. The more opportunities your child gets to practice a particular skill, the more likely he or she is going to master it and move on to something else. Additionally, you will be part of the treatment planning process by sharing with your provider what skills you would like to see your child learn. Although your BCBA will be able to identify appropriate goals through the assessment process, you can also share what you would like your child to be able to do. For example, parents often mention that they would like to see their child increase communication, sleep through the night, eat more foods, and use the bathroom independently. These are all behavioral areas in which an ABA program can help improve.
Will you help us navigate special education services and Individualized Education Program (IEP) meetings with us? Your BCBA can give a professional opinion on how to work together toward similar goals. As your child gets closer to his or her third birthday, it is appropriate for your school team members and the members from your in-home ABA and Early Intervention team to collaborate, as it ensures consistency. For example, if there is a behavior that you’re trying to decrease, make sure everyone is responding in the same manner so that it is consistent for your child.
After your intake with the service provider is complete and you’ve asked all of the above questions, take some time to evaluate your meeting. How did they make you feel? Is there a connection? How many hours can they provide?
Making a decision
Review your notes after meeting with all the service providers and think about who is the best match for your child’s needs. Ask other parents who have been through this process what factors influenced their decision and how satisfied they are with the services that they received from their provider.
Lastly, familiarize yourself with community resources such as Autism Speaks by visiting their website autismspeaks.org, as well as the Massachusetts Division of Health’s website mass.gov/autism-resources-for-families. By learning all that you can, you’ll be the best advocate for your child.
Eilianie M. Alvelo, M.A., BCBA, LABA was born and raised in Comerío, Puerto Rico, and moved to Western Mass. in December 2008 after her family struggled to find treatment for her nephew, with autism. She is a Behavior Analyst based in the Springfield office of Behavioral Concepts (BCI). BCI provides Applied Behavior Analysis (ABA) services to children diagnosed with ASD and their families throughout Massachusetts.