Grieve or Live: Part 2 of a Talk on Autism

Nicholas Hemachandra naer Saluda

Nicholas Hemachandra yesterday at the stream and little falls near Saluda, North Carolina, that we have gone to often since he was 6 years old.

[This post is the second in a six-part blog series presenting a talk I gave at the Autism and the Pursuit of Happiness Conference earlier this year at the University of North Carolina. Read Part 1: Accept or Reject here, and you can find links to all the other parts at the bottom of this post. I originally wrote the material for verbal presentation rather than for someone reading it in print or online, so I’ve edited it lightly for content and context. I invite you also to take a look at a list of other popular posts about autism I have written here. I’ve bridged the first two segments in this series by opening this post with the final sentence of Part 1. ~ rah]  

Some of the most urgent work to be done in the autism community is to overcome the dominant cultural model based on cure and to help parents, families, professionals, and organizations make this transition.

Then of course the even bigger paradigm shift will be to have the dominant cultural model be acceptance from the start.

Before I get too far ahead, though, the second value contrast comes at this point of transition: GRIEVE OR LIVE, which I played with calling WOE IS ME OR REALITY. I didn’t quite have the nerve.

Even when you accept your child’s autism, you still may 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, writing of books and blogs, psychotherapy, and individual and group support are dedicated to grieving.

I’ve participated in support groups for years, and family members and especially parents speak eloquently and often movingly about their reactions to their children’s 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 again through the years.

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 may sometimes be 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, of neurotypicality — is one of them.

I understand 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 be better 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.

The author/speaker Ray Hemachandra (right) with his son Nicholas Hemachandra on Sunday, July 12, near Saluda, North Carolina

The author/speaker Ray Hemachandra (right) with his 14-year-old son Nicholas Hemachandra on Sunday, July 12, 2015, near Saluda, North Carolina

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.

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 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, and if you’re so kind as to share the posts on social media or to leave a comment on this page, it is deeply appreciated:
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 Autism as You
Part 6: Independence or Connection

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One thought on “Grieve or Live: Part 2 of a Talk on Autism

  1. Great post, thank you! I know for me, I grieved things more about myself than my child – I grieved losing what I thought I knew about what to do and what to expect as a parent, as well as grieving the feeling of isolation. I don’t recall ever grieving what he was or wouldn’t be.

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