This diagnosis story was originally posted by Brian in the two part entry Let there be light on his blog Autism: Deal With It! on 7-9 April 2006 and is reprinted here with permission.
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Yesterday at work, I was talking with a coworker who stopped me in the hall. The conversation was about recognizing Autism in an infant/toddler and the parent’s perspective. As we talked, I was asked where on the Internet someone could go for good information. Despite the fact that I have spent countless hours on the Internet reading about Autism and the Pervasive Developmental Disorder spectrum, I could not think of a simple sing source of information. Sure, there are tons of sites, but very few address what is crucial for the parent who is embarking on this journey… instead focusing on what causes Autism, how to work with Autistic children, who to become and advocate, etc. (more…)
[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…)
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:
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.