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5 Essential Tips for Parents Starting the Autism Journey

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My son was not diagnosed with autism until he was 5 and a half. He has a high functioning form of autism known as Asperger’s syndrome. For some people, a diagnosis can be sad moment. For us, his diagnosis was a relief. We finally knew what was wrong and how to approach it.

I have learned quite a bit in our four years post-diagnosis, but there is always more to learn. I think the very beginning is the hardest part. So here are some tips for those of you just starting the autism journey.

Tip #1: Don’t be afraid of the diagnosis.

Having a child with autism is not the end of the road. You need to do what you have always done: adapt to the situation. Yes, certain things will have to change, but now that you have a clue what you are dealing with, the changes are more readily known. Adapt, live and love.

Tip #2: Don’t believe everything you read, hear and see.

I fell into this trap at first. I was given books, sent links to articles and listened to stories from doctors and on forums. Don’t do it. Just don’t. At least not right away. No child with autism is like another, so all of the “advice” people give you might scare you and stress you out. Nobody knows your child like you do, and now you have another layer to get to know.

Tip #3: Do start looking into programs that can help.

There are a lot of programs that can help children with autism and their families. I’m talking about beyond the doctor. Local play places sometimes hold sensory nights for kids with special needs, plus there are wonderful OT groups, respite (help for parents) programs and PCA programs. There are also grants and more available. The list grows every day as the awareness does.

Tip #4: Prepare yourself for questions and judgmental stares.

I can’t count how many times someone has asked me, “Are you sure your son has autism?” A lot of people fall into the cookie cutter trap. They think if they’ve seen one child with autism that they’ve seen them all. I get questioned all the time. It comes with the territory. I mainly get questioned by family and friends. If your child has a more severe diagnosis, you may get questioned by complete strangers.

The judgmental stares happen daily. When my son shrieks in excitement because a store carries blenders. When we eat out and he has more food on his face and shirt than my 3-year-old. When he can’t figure out if he should push or pull a door or how much force he needs to use. When I bend down and give him a stern warning, through gritted teeth, that he needs to knock it off. People stare. People judge. Just perfect your fake smile or if you are like me, your major stink-eye!

Tip #5: Your child has autism, but autism doesn’t have to have your child.

We set expectations, goals and rules for our son. We know it can make certain things harder for him, but we know he can achieve whatever he sets his mind to. I know that my son is capable of great things, so I don’t want him to be defined by his diagnosis.

Again, adapt, live and love.

A version of this post originally appeared on BecominNeurotic and The Mad Mommy.

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Originally published: May 19, 2015
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