Autism and grief

I am not grieving, despite the concern (?) from CS in a comment on my most recent post.  (Nor am I simply in denial as I’m sure some will tell me about my thoughts on autism and raising an autistic child.)  I have written about grief and autism before, though, and this seemed like a good time to dust that post off and repost it.

From April 2006, Autism and the 5 Stages of Grief:

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For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don’t actively educate themselves about autism before the diagnosis – let’s face it, no one thinks it can happen to them – most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the ‘devastation’ of autism, of how kids are ‘lost’ in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These are the stages, as I understand it, that a person will go through if left on their own, if they don’t receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents [ed: an unfortunately now defunct site] is to present an alternative to these ‘default’ stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I’ve come up with.

• Denial – unfortunately, unavoidable [ed: at least until everyone accepts that it could happen to them and/or that it is not a bad thing to have happen]
• Confusion – again, unavoidable
• Understanding – the process a parent takes to understand the situation. In this step, will answer the questions that come from the confusion stage.
• Plan – based on understanding gained in previous step, make a plan for your life ahead (something parents do with all kids)
• Act – live life to the fullest, adjusting the plan as your understanding grows.

I’m interested in any feedback to help refine the individual steps, or the overall concept itself. I’ll explore each of the steps in a bit more detail in subsequent posts and will consider all comments/suggestions.

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Another comment, this one from Phil Schwarz, talks about the real need for grief in some situations, but also reminds us of what it is we are really grieving.  Phil references Jim Sinclair’s Don’t Mourn For Us, which I discovered, and wrote about, along with Phil’s Cure, Recovery, Prevention of Autism? not long after writing the “5 Stages” post.

To me, the most important stage for parents is Stage 5 – ACT.  In this context I don’t mean act in a “big” way, trying to change the world while all but ignoring your child.  I mean act in a “small” way, as a parent, doing your best with what you’ve got and raising a happy, confident, and self-assured child that becomes a happy, confident, and self-assured adult.

Or, as Phil so eloquently put it in his comment:  It’s what you do beyond the grief that matters.