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Facing Your Child's Autism Diagnosis

Grief is the appropriate response to loss. It's the emotional suffering you feel when something or someone you love is taken away.

It is natural for parents to mourn the news of their child's incurable disorder and the loss of the child they expected. You may associate grief with the deaths of loved ones (and such a loss does often cause intense grief). But grief can accompany the loss of:

  • relationships
  • friendships
  • health
  • cherished dreams
  • employment
  • attachments
  • financial stability
  • security

Decades ago, Elisabeth Kübler-Ross, MD, identified the stages of grief in her famous book On Death and Dying. Others have built on her work to give us insight into the ways we respond to tragedies in our lives. In coping with the diagnosis of autism, parents may experience many of these stages, in any order. In fact, it's common to have good days and bad--moving back and forth between them--as we struggle toward acceptance.

Stage One: Shock, Denial, Isolation
"My child doesn't have autism. He's just different."

In this stage, we protect ourselves by using denial and isolation as a buffer, to keep us from being overwhelmed by the full extent of this new reality. It is a survival instinct — the equivalent of putting our arms up to cover our face when something rushes toward us too quickly. It allows us to modulate our exposure, so we can take it in at our own pace.

Stage Two: Awareness and Emotional Release
"Is this my fault? Did I do something to cause my child to have autism?"

When we feel safe enough to acknowledge the reality, our emotions take over. We can feel anger and guilt. We may try to deflect those feelings by blaming someone else or even bargaining with God in exchange for a different outcome.

Stage Three: Depression
"Nothing will ever be the same. The future is grim."

Ultimately, we are left to face the reality. Our denial and isolation have bought us a little time to get used to the idea. We've had a chance to vent, but then a feeling of pain and hopelessness can sweep over us.

Stage Four: Acceptance
"Autism is a challenge, but we can cope with it together."

In this stage, we come to terms with reality. Our acceptance gives us enough relief that we can start to engage in social activities again. We're able to talk about the situation without as much pain and find a way to feel hopeful for the future.

Acceptance is the goal, but each of these stages is perfectly normal and healthy.

The most damaging response is to suppress these feelings or hold on to the grief too long. When a parent pushes away any fear, frustration, anger or resentment he may be feeling, those emotions can break out in other ways. Anxiety attacks, insomnia, weight fluctuations and chronic depression can indicate that a parent has been overwhelmed and is not making a fluid progression through the stages of grief. Consultation with a therapist or medical professional can help get things back on track.

It's important to honor your genuine feelings, whatever they are, and not try to make them into something you think you ought to feel. Everyone comes to terms with this diagnosis in their own way. My husband cried with me in the parking lot after we heard Marty's diagnosis, but after that he never looked back. He was ready to move with all deliberate speed to learn about the therapies and treatments, find appropriate programs and wade right into the autism information maze. I needed more time than that. You may too. But the truth is, the longer you spend in guilt and self-pity, the longer you delay the ability to vigorously help your child.

More on: Autism

Excerpted from The Everyday Advocate: Standing Up for Your Child with Autism or Other Special Needs.
Copyright © 2011 Penguin Group.
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