Four years ago, I sat on the floor of a pediatric neurologist’s office holding my son in my lap while he confirmed what I already knew in my heart was true – my son has autism.
At first, I went into hyperdrive mode. I asked the neurologist what we should do next and pursued every suggestion he offered. I told myself, If we do everything right, we will conquer this! So, we took our son to daily outpatient therapies, including speech, OT, Floortime, and social skills groups. We enrolled him in a specialized early childhood classroom where he received daily behavioral therapy, occupational therapy, and speech therapy. We went to quarterly appointments with a developmental pediatrician, maintained a sensory diet for his sensory needs, and worked diligently each day to expand his eating repertoire from oatmeal to include fruits, vegetables, and animal protein.
We did it all. And then, our son entered kindergarten. While we had overcome many struggles autism presented, many others remained and new ones surfaced. Age six came and went, but autism didn’t. In retrospect, I see that I inadvertently set age six as the year that marked the finish line. But it wasn’t, and there isn’t a finish line.
It was that year when it truly sunk in that the diagnosis is lifelong. This realization made me feel isolated and overwhelmed, until I realized I could actively turn those feelings around. Below are a few approaches that helped me and might help you, too!
Honor where you are in your journey
Everyone processes a life-changing diagnosis like autism differently. Honor where you are in your own journey and be gentle with yourself. Accepting the present will allow you to move toward the future.
Build your tribe (with a positive vibe)
Build relationships with positive people. Reach out to friends, groups, and organizations that will offer you encouragement and support. Avoid groups or people that wallow in their sorrow. If you aren’t sure where to begin or feel isolated at home, here is an excellent resource to help you get started: 60+ Facebook Groups for Special Needs Families.
Make a plan to share the news with close family and friends
Sharing the news with close family and friends may feel overwhelming. You may still be processing the news yourself or feel worried about how family members will react. Just as every parent processes a diagnosis differently, every person does as well. While you cannot predict how someone will react, you can prepare and feel confident in the information you are providing. Here are a few extra tips:
Explain the diagnosis as simply as you can and who provided it.
Offer ways your family and friends can be most supportive of you at this time.
Share with them the next steps you are taking to help your child.
Answer questions to the best of your ability and offer credible links to them for further research.
Though this post is written to autism parents, I think it offers sound advice for any diagnosis, as well!
Appreciate the diagnosis
My child did not receive a diagnosis until a year after I saw the signs because we were in a state that was not as equipped as Massachusetts to handle the influx of autism. Though a diagnosis can be difficult to process, having it opens doors to the life-changing therapies and services your child needs to thrive, and equips you with the mindset to love them for who they are and provide them with what they need. If you are struggling with this or just need someone to talk to, consider counseling. It is unfortunate that counseling often comes with a stigma because it is so wonderful. Our family has received counseling from the beginning and it has helped us so much on our journey.
As always, please reach out to us if you have any questions. We are here to help and encourage!