Over the years I have taken calls from frantic parents wanting guidance as to what to do after their child has received a diagnosis of autism spectrum disorder.
The first thing that I tell parents is to take a moment to grieve, to cry, to get upset and process their emotions. Then, I tell them to develop a roadmap. A roadmap will provide clear next steps to guide them through the initial phases of obtaining support and services.
Here are my top 3 steps for developing that roadmap:
Research your funding options. Funding for services will vary depending on your child’s age and the state that you live in. In the state of California there are three different funding options which include insurance, school districts and regional centers.
Luckily the state of California has enacted autism insurance reform laws which require insurance carriers to provide coverage for autism treatment. If you live in a state that does not mandate coverage or for some reason your plan denies coverage, you can always appeal that decision directly with your insurance company.
California has 21 Regional Centers throughout the state that contract with the Department of Developmental Services to provide or coordinate services for individuals with developmental disabilities and their families. To locate the Regional Center in your community, click here.
If your child is 3 years of age or older at the time of diagnosis, then you can contact your local school district to have your child assessed to determine if they are eligible for special education services.
Schedule assessments. Once you have determined what funding options you have to cover the cost of services, the next step is to schedule assessments in order to access services. Research shows that the earlier services begin, the better the overall outcome. While there are a handful of evidence-based interventions not all will be covered by insurance. I recommend having your child assessed by a speech-language pathologist, and an occupational therapist.
A speech-language pathologist will identify the best way to assist your child in learning how to communicate, whereas the occupational therapist will assist with any feeding or sensory processing challenges that your child may have.
Other assessments to consider include physical therapy and behavioral therapy. A physical therapist can assist with any balance, coordination or motor skills to ensure that your child is able to fully and safely access their home and community. Behavioral therapy or ABA (Applied Behavior Analysis) can assist with helping your child to regulate their behaviors and develop the necessary skills to reach their fullest potential.
Gain knowledge & get support. As they say, knowledge is power. It is important that you understand autism and the comorbidities associated with it so that you can treat any potential conditions that may impact your child’s behavior or learning.
Common comorbidities include epilepsy/seizures, sleep disorders/disturbance, ADHD gastrointestinal disorders, feeding/eating challenges, obesity, anxiety, depression, and bipolar disorder. Your pediatrician should be able to guide you to any specialists that your child may need to see to diagnose or rule-out any of these conditions.
In addition to common comorbidities, it is important to do your research as it relates to the various treatment options available, as not all interventions are created equal. You want to be sure that the services your child receives are evidence based. This means that there has been research conducted that shows that the intervention produces positive outcomes.
Lastly, take the time for self-care and find support. This is a marathon and not a sprint. You need to make time for self-care so that you can be the best advocate, therapist, teacher and parent for your child. So, whether you join a support group, get counseling, or connect with other parents that have children with special needs it is critical that you do not lose yourself in this process. Remember, you are not alone and there can be comfort in reaching out for support.