Moving Through Autism Diagnosis Grief: 8 Essential Steps

Moving through grief is not easy, here are some steps that can help.

I know that many mothers experience grief when they first receive the autism diagnosis of their child, although it’s not often talked about. I was no exception.

I was on my knees when my son Joseph was first diagnosed on the autism spectrum back in 1995. It was life-altering grief to hear those words about my child back then.

I was not ready to hear the “A” word. My grief was huge, messy, and painful, and I stumbled through it.

I have gotten to the other side of grief with my son’s diagnosis after many years, but I couldn’t feel hope when I was in what felt like the middle of the dark forest without a compass. I had no direction. It was my first life experience of being lost in grief.

I grieved because I had to let go of the dream I had for my son. I grieved because the loss of that dream seemed to mean that my son was going to struggle through life. I did not want that.

What I discovered over the years, however, is that I could dream a different dream for my son, and I could experience his beautiful gifts on the path he was given.

If you are grieving from the autism diagnosis of your child, you are not alone. If you feel heaviness in your heart but don’t call it grief, you are not alone.

Although grief was always present for me, I never gave grief my time or attention. The only time I acknowledged that I was experiencing grief was when I could no longer pretend that I was “fine.” Big crashing waves of deep pain and sadness would come out of nowhere.

Giving yourself permission to grieve is essential. In fact, without allowing grief to be a part of your journey, you will only keep yourself from living a fully engaged and joyful life. When you allow yourself to feel grief, it can become an old friend who pops in and out of your life once you lean into it.

Sounds like you want to run, right? It’s natural to want to run away. Why? Because it hurts like hell.

Feeling pain is part of finding your way out of the dark forest. When you lean in, grief will come less and less over time.

Before you start, remember to use this “lean into grief mantra” to create a container of kindness and compassion for yourself: Be Kind. Be Loving. Be Present.

Step 1:

I want you to imagine sitting with your best friend and comforting her. What would you do?

Would you get her a cup of hot tea? Would you offer her a cozy blanket or a box of soft tissues to dry her tears? Whatever nurturing gestures you would offer your best friend, offer these to yourself.

Step 2:

Take a moment and go get your hot tea, cozy blanket, and soft tissues. Then, find a safe, quiet place to sit with your favorite journal.

Step 3:

Once you have settled in, take a few deep breaths and invite grief to come and sit with you.

Step 4:

When you have felt and connected to your grief, describe it in detail. How big is it? What color is it? Write down any and all details in your journal.

Step 5:

Name your grief as if it were a person. Write it down in your journal. Mine, for example, is a green witch like the one from The Wizard of Oz.

Step 6:

Write a letter to your grief, addressing it by name.

Let grief know what you are feeling. Let grief know everything about what you are experiencing, including the pain, anger, and frustration. Lean into your grief.

Step 7:

Let grief know when it’s time to leave. Simply say, “Grief (your grief’s name), thank you for listening; it’s time for you to go now. See ya next time.”

Step 8:

Take a moment to comfort yourself. Sit and dry your tears, sip your hot tea, and wrap that cozy blanket around you. Do whatever feels like comfort to you.

You can sit with your grief whenever you choose to lean into it. You don’t have to come up with any specific rules to sit with grief.

With that in mind, remember that “what you resist will persist.” It’s essential to lean into grief rather than run away from it because you cannot outrun grief. When you make friends with grief, it will move through you and leave you in a state of gratitude.