Grieve or Live: Part 2 of a Talk on Autism

[This six-part series is adapted from a talk I gave at the Autism and the Pursuit of Happiness Conference at the University of North Carolina Asheville.]

In this talk, I’m discussing value contrasts to consider—hopefully to think about deeply—when parenting an autistic child. These value contrasts also have relevance for medical, educational, and therapeutic professionals.

The first value contrast I discussed was ACCEPT OR REJECT. The primary focus of the accept-reject contrast is what parents and professionals direct at an autistic child.

The next value contrast I would like to discuss is GRIEVE OR LIVE, which really is more directed toward the parental response to and experience of a child’s autism. I played with calling this contrast WOE IS ME OR REALITY, for the rhyme and to emphasize the point.

Even when you accept your child’s autism, you may still grieve.

There’s a very well-developed language among parents, among autism organizations, and in support groups about the grieving process around autism, along with many other disabilities. Great amounts of conversation and storytelling, the writing of parental blogs and books, psychotherapy, and individual and group support sessions are all dedicated to grieving.

I’ve participated in support groups for years and led some. Parents and other family members speak eloquently and often movingly about their reactions to their children’s autism diagnoses and then learning about and moving through the stages of grief.

People cry and tissue boxes are passed around as the stories are told, often the same stories again and again and yet again through the years.

Basically, for these parents, hearing an autism diagnosis is like experiencing death—the death of your child, or at least the child you thought you had and the child you wanted. Many parents mourn. Often, they never stop mourning.

But what does it feel like for a living child to be grieved? Essentially to be grieved for another imaginary child who he or she isn’t and will never be—could never be? What child deserves that?

Would you change out your child for another?

The answer, honestly and brutally, for some parents is yes.

That’s sad and tragic for the child and no less so for the parent. By grieving what doesn’t exist, and never did, you injure—and in a fundamental way miss out on—the person who does.

Maybe there are some things you should never get over. Maybe there are some things that are simply true and stay with you always.

But I’ll never believe that grieving your child’s lack of normalcy—that is, in this case, your child’s autism and lack of neurotypicality—is one of them.

I understand that a message of “get over it and celebrate what you have” can ring hollow to people stuck in stories of grief and sometimes some very seriously challenging circumstances.

But grieving is a choice, and parents might better be challenged right from the start to consider consciously if that choice is truly the right one for them and their family. Clinging to something that doesn’t exist and never existed means at least a part of you is missing out on what’s real—on the reality of the person you love and who loves you and on the reality of your shared lives.

It means moving from the very common language of “God doesn’t give you more than you can handle,” so prevalent on autism message boards, to a perspective of “God has blessed you beyond measure—love and treasure your child and your life.”

When I was younger, people in the African American community would sometimes say, “No one would choose to be black.” Or in the gay community, or among parents of gay children or even among advocates: “No one would choose to be gay.”

People don’t say those things so much anymore, thank goodness. But they do say it about other things: autism, transgenderism. Things still on the margins in today’s society in the United States.

My belief—and my hope—is that as the autistic population expands, prejudice and discrimination about autism and against autistics will recede, and, by the time my son Nicholas is my age, people won’t say that about autism anymore, either.

Or about transgenderism.

Here are links to all the articles in the series. Please share posts you like on social media using the buttons below the articles:
Part 1: Accept or Reject
Part 2: Grieve or Live
Part 3: Support or Save
Part 4: Acceptance or Self-Acceptance
Part 5: You As Autism or You as You
Part 6: Independence or Connection