Autism Awareness Month 2012 Re-Post

(Originally posted in April 2012)

Every year when April comes around I think about how I should contribute to Autism Awareness Month. A lot of folks are lighting up blue this year.....there's always lots of blogs......charity fundraising events, etc. Now that I don't participate in a local support group, I wasn't sure what I wanted to add to the conversation.

And then yesterday, I got my answer.

About a year ago a husband and wife subcontractor team came into our construction company to complete some work. I chatted with the wife for a while and she noticed some autism-related info on the bulletin board in my office. This got us started talking about Little Boy and she shared with me that her niece had recently shown many signs but hadn't yet been diagnosed. I gave her some info about local groups, jotted down a book she should read, and gave her the general spiel I used to share with new parents. I could tell that she and her husband both really took it in and appreciated the knowledge.

Yesterday when she came back, she told me her sister had read the book I recommended, got a diagnosis, and had gotten proactive. It reminded me that we all have our small parts to play in this strange club that many of us belong to but never wanted to join.

Now that I have lived and learned with a diagnosis for about 7 years, I can see the rise and fall and the changing needs of the children and families affected by it. When your child is first diagnosed, you need someone to let you cry. Then you need information and services.....and lots of it! Next you need a plan and people around you to help put it into place. The support you and the child need is ongoing, but the type of support you need is what changes. And then one day before you know it, blam, you are offering support to someone else.

If there is anything I could impart for this year's autism awareness it would be directed at two groups of people:

You Suspect Your Child May Have Autism

~If you suspect your child may have a disorder on the Autism Spectrum or any other developmental or learning disability, talk with your pediatrician immediately. Nothing will happen until the testing starts. So may parents say they don't want a label. But getting that label will be the best and worst day of your life because from then on you will have a path to get what your child needs. If you're wrong and your child doesn't have a diagnosis, who was hurt? At least now you know for sure.

~There are many different typical symptoms of early autism mainly characterized by lack of verbal skills, difficulty in communicating simple needs, difficulty in play with other children, difficulty in following directions, etc. These symptoms sometimes look like bad behavior or even like a hearing impediment. And some symptoms are so unexplained that you may not even be sure you should be concerned like when I used to watch my son line up all of his trucks instead of scooting them across the floor. The fact is, you're not an expert and nobody expects you to be. Reach out to the places that can help you and your child and let them help!

~Don't let fear and guilt hold you back from seeking services. Whether it is autism or not, you didn't cause it. You weren't the cause but you can be the first steps in a solution.

~I will repeat something I heard once in an autism conference that stuck with me ever after, "there will come a time when autism will not be all you think about, when you will realize that everything will be okay, and it really will be......." Seven years later, I know this to be true.

Your Child Has Been Diagnosed with a Disorder on the Autism Spectrum

~Share your knowledge with newly diagnosed families. Participate where you see fit, but don't feel the need to lead every group, walk in every walk and raise every dollar. Your child is still your first priority.

~Don't get rooted in doing things only one way. What might have worked for the first 3 years may be inappropriate for the next 3. Learn from other parents, teachers, therapists, books, groups, doctors, online resources, etc. We have more information centers out there now than ever before.

~Another piece of advice I learned early on: don't get too far ahead of yourself. If your child is 5 years old, don't spend a lot of time worrying about puberty. Get prepared as you get closer to each milestone, but don't let yourself get wound up in it years before.

~Let people in and let them help! One of my biggest issues has always been the fear of sharing my child with too many people. I know now that this sharing has helped him learn and do more and become more of what he can be. Those therapists, teachers, nannies and other loving friends and family members can contribute more than you know.

~Even years later, it's still okay to cry now and then. To be disappointed. To be scared. There are still going to be pitfalls and times of jealousy of the "normal" families. Find a trusted person that you can vent to without judgement.

And for anyone else out there that simply wants to learn more, know more and be active in the ASD community, reach out for the resources.....they're everywhere! A good place to start is with the Exceptional Children's Division of your local school system. And the Internet is full of links to support groups, chat rooms, message boards, websites and social networking for all manner of diagnosis.

Autism doesn't run my life, but it does color every decision I have made in the last 7 years. I feel pretty sure it always will. But like a lot of other parents, I don't look at my child and only see the autism. I see the boy I love, quirks and all, and all the hope I have for him and his future.