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Autism Awareness- One Family’s Story

It’s Autism Awareness Month, in case you haven’t heard. As a family who has been living with autism, our observation of this month has changed over time.

Our son was diagnosed with autism three days before the very first Autism Awareness Month. The timing couldn’t have been better, and, in some ways, worse. The continual media coverage was immensely helpful in educating our families, our friends, and ourselves about what autism means, what it looks like, and how to treat it. However, at times it felt a bit suffocating—as though we weren’t given any space to process our son’s diagnosis on our own time. Every time Larry King or The View featured a story about autism, our phone rang off the hook with well-meaning loved ones wanting to share what they had just learned.

However, despite the occasional discomfort we may have felt, we are appreciative that our son’s diagnosis occurred at a time when so much attention was being given to kids like him. This new spotlight on the disorder has benefited him and us, because it meant that in a short time period, science and education have made massive strides in understanding and treating what can be a very mysterious diagnosis.

Those first few Autism Awareness Months were also very helpful in enabling us to educate our other kids, as well as neighbors and friends. Each year, we noticed the schools did more and more in that month to inform the community about autism, and our family reaped the benefits of the resulting inclusion efforts.

In the past few years, however, the focus has shifted a bit for our family. While we still acknowledge the importance of awareness and education, and we certainly appreciate the boost in research funding that comes as a result, we have taken a less hands-on approach to the annual awareness efforts.

I can’t quite put my finger on exactly why that is. I suspect it is probably a combination of things. First, anyone who has ever met us at this point has come to learn a great deal about autism, either on their own or through contact with our family. So we have less of a practical need for teaching people the basics.

In addition, because this month comes right at the anniversary of our own diagnosis, it is often a time of personal reflection for us. What have we accomplished, as a family, in the past seven years? How far has our son come? Where do we see him in one year, or five, or ten? Notably, some of the media coverage this month provides has given us some exciting possibilities. For example, the Wall Street Journal just ran an article describing how some companies are actually seeking out individuals with autism for employment, due to their precise nature and attention to detail.

Finally, sometimes we use this month to give ourselves a little bit of a break. Let the world take care of autism for a few weeks, so we can take just a little time off from constant advocacy. Coincidentally, last week my husband and I did just that. Somehow the planets aligned and, through the kindness and generosity of friends and family, we found ourselves on a brief kid-free vacation.

Maybe that’s the best thing that Autism Awareness Month can do for us right now. For a month, let CNN and The New York Times educate and inform the world about autism. Let those of us who deal with autism daily take some time to recharge and refocus (either through a physical vacation or just a psychological one), and take a moment to appreciate the great strides in awareness that have already been made. We know that, without the annual information blitz from autism advocacy groups, our lives would be more difficult. Yes, we have a long way to go, and the day-to-day struggles are not for the faint of heart. But when I look at how far we have come, and how much support we have received from our community, I can truly appreciate what those awareness efforts have done for us.

Posted in : Autism, Blog
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