You are not alone. That’s the crucial message experts want parents to remember in the days, weeks and months after their child receives an autism diagnosis.
“It’s a lot of coordinating and figuring out how to navigate this new life,” said Tracy Gale, director of Autism & Behavior Services at Easterseals Crossroads. “Families often feel like there has been so much wasted time, and they want to do everything all at once. We encourage parents to take a couple days to be mindful about the process.”
Getting evaluations, starting services, researching therapies and, perhaps most importantly, setting up your family’s support system in the weeks after a diagnosis can help quell feelings of panic, isolation and total system overload, experts say. Here’s where to begin:
Get Services Started
If your child isn’t already receiving services, setting those up should be your number one priority. Who to contact will depend on your child’s age:
Younger than 3: Early intervention services — called First Steps in Indiana — provide in-home therapies, including speech therapy, occupational therapy and physical therapy. You should contact your local First Steps office to set up a free assessment once you have a diagnosis (or as soon as you suspect delays). Call 317-233-6092 or visit indianafirststeps.org.
3 years and older: Children age out of early intervention services on their 3rd birthdays, so if your child is diagnosed after that, you will contact your local school district about services. The school district will set up a free evaluation to determine if your child is eligible for special education services, which could include developmental preschool.
Evaluations can take time, which is why it’s so important to set them up right away. The results will help you identify more specific areas to work on and will get your child’s progress underway.
Pro Tip: Keep a phone log as you set up evaluations and start getting services to keep track of who you talked to when.
Research Other Therapies
Once you learn what services your child might receive, you can start looking at additional outpatient therapies. This can sometimes be a bit overwhelming for families, Gale warned.
“It can be overwhelming to think maybe my child needs ABA (Applied Behavior Analysis), OT, PT, and a lot of times there are waitlists for various therapies,” she said. “Make a priority list, get on several waitlists and use that urgency you feel for good, rather than letting it overwhelm you.”
Once you’ve narrowed down what kind of therapy you’d like to pursue, the next challenge can be sifting through all of the local providers. It’s wise to ask for recommendations from people who know you and your child, such as doctors, therapists or fellow autism parents. The Autism Society of Indiana has Autism Allies across the state who can help. Call 800-609-8449 or email [email protected]
Pro Tip: Investigate your insurance coverage to see what, if any, therapies are covered. Also look at other financial options, including Medicaid, Medicaid Disability and Children’s Special Health Care Services (more info: iidc.indiana.edu/styles/iidc/defiles/IRCA/AftertheDiagnosisBooklet.pdf)
Join a Facebook group for parents of children with autism. Seek out a support group (find a list at iidc.indiana.edu/pages/parent-groups). Befriend other parents who are traveling a similar path. The important thing is to secure your family’s support system, take a breath and make sure you’re caring for yourself, too.
“It’s important to make sure parents are taking care of themselves and their other children, too, during this time,” said Lisa Goring, chief program and marketing officer for the national autism advocacy organization Autism Speaks “You can’t do everything yourself. It’s really important for parents to know that they are not alone.”
Pro Tip: Autism Speaks has several excellent 100 Day Kits, aimed at helping families navigate the first months after a diagnosis. You can download them here for free: autismspeaks.org/family-services/tool-kits/100-day-kit and autismspeaks.org/family-services/tool-kits/100-day-kit-school-age.