What I Wish I Knew When My Son Was Diagnosed With Autism

The other day I spent some time talking to a former classmate from grade school. We hadn’t spoken since the summer we were thirteen. We’ve been friends on Facebook for a while but had no interaction until recently. Her son was diagnosed with autism and she wanted to talk.

It’s been more than eight years since Norrin was diagnosed with autism.

Whenever I talk to a new autism mom I am reminded of all those feelings I felt that May in 2008 when I first heard the words: your son has autism.

So I listen, I offer words of comfort and advice but I still hear the uncertainty in their voice. Because no matter what I say, I know that only time will ease their concerns. There are so many things that I know now, that I wish I knew then.

Here are a few things I wish I knew when Norrin was first diagnosed:

A mom raising a kid with autism

In the beginning, I was totally alone. I didn’t know a single mom raising a child with autism. And while I had friends I could talk to, none of them understood what I was feeling. No one could point me in a direction. Since Norrin’s diagnosis, I have created a community of parents – on line and in real life – who not only understand me but understand my kid. And I am grateful that when I have a question or concern, I have someone who will listen to and guide me.

You don’t have to read every book on autism

On the day that Norrin was diagnosed, I ran out to the bookstore. I purchased five books on autism. I may have bought more books the following week. I was googling and reading anything and everything I could find on autism. I was overwhelmed. There are a lot of great books on autism but you don’t have to read them all in that week or that month or that year. Take your time. It’s not a race.

It’s okay if you don’t try every single thing someone suggested

Once someone suggested a certain therapy. This person recommended a place in the Manhattan and when I looked into it, the cost was way more than I could afford (about $10,000). I remember feeling guilty about not being to afford it. I contemplated putting it on a credit card. In the end, I didn’t pursue it. There will be some things that are simply out of your reach, don’t feel bad about it. Especially if there is no absolute proof that it will work. There is NO CURE for autism. It’s all trial and error. Don’t go broke trying everything.

There is no one to blame

For a long time I blamed myself. I may have even blamed my husband. The blame game is a waste of time and energy. Autism is not your fault.

Flapping doesn’t hurt anyone

To flap or not to flap – that is the question when you have a kid with autism. I remember holding Norrin’s arms down whenever he flapped and feeling his whole little body tense up. Every therapist that walked in our door, that was the first behavior I wanted to see eliminated. Now I could care less. If I’m not asking him to do anything, I let him flap. It’s his own way of expressing excitement or happiness. And who am I dictate how he expresses his happiness?

Evaluations are important but don’t read too much into them

The first time I read Norrin’s evaluations I cried. I still have a tough time reading them. It’s not easy to read about all the things your child cannot do. But the thing I’ve come to realize is that Norrin is so much more than an evaluation. He knows so much more than his test scores reveal. I focus on all the things my child can do and how far he’s come.

It’s OK to Wish

Being a special needs parent can be a lonely life. Wishing that things were different, can feel like betrayal. As if you were wishing for a different kind of kid. But it’s not. It’s OK To Wish.