Autism For Parents

26 May 06

An unexpected childhood – An autism mom asks: What makes a child perfect?

Filed under: Autism,Understanding — Brett @ 1422

Written by Kristina Chew, this essay was originally published September 10, 2003 in the Princeton Alumni Weekly and is reprinted here with permission.

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After my son, Charlie, was born in May 1997, I purchased a sweater with a big orange P on the front. What will he be when he grows up, friends and relatives wondered aloud. And, with a wink: What college?

Charlie is six now. Cleaning out drawers the other day, I took out the sweater, long outgrown. “What letter?” I asked, pointing to that big P.

“Orrwange,” said Charlie. Behind his glasses, both pupils slid into the corners of his eyes. (more…)

9 May 06

Time Well Spent

Filed under: Autism,Understanding — Brett @ 2314

Originally posted in August 2005 by Wade Rankin at Injecting Sense. Used with permission.

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Tonight I took my 15-year old son, one of my non-autistic kids, to the local fishing pier on the shore of Lake Pontchartrain. There was a nice breeze out on the water, making it the type of comfortable evening we rarely see in South Louisiana during the summer months. A night like this brings people out, and the pier drew strollers as well as fisherfolk. One gentleman and his son caught my eye. The boy was about 10-years old, and was obviously autistic. (more…)

8 May 06

Don’t mourn for us: Thoughts for parents from an autistic man

Filed under: Autism,Confusion,Diagnosis,Understanding — Brett @ 2058

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. You can find it online at http://ani.autistics.org/dont_mourn.html.

It is an outline of the presentation Jim Sinclair gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Don’t Mourn for Us
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle. (more…)

The five stages of autism

Filed under: Action,Autism,Confusion,Diagnosis,Planning,Understanding — Brett @ 1929

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 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.

  • Diagnosis – the first step on the journey
  • Confusion – unavoidable for most parents new to the world of autism
  • Understanding – the process parents undertake to understand the situation
  • Plan – based on understanding gained in previous step, make a plan for life ahead (which is, in fact, something parents do with all kids)
  • Act – live life to the fullest, adjusting the plan as your understanding grows

In many cases, posts will overlap between steps, especially the Confusion/Understanding and Plan/Act pairs. With these steps, I hope to share actual stories from parents who have gone through these steps as well as simple (and some not so simple) checklists of things you can do.

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