6 Things I Wish I Knew When My Son Was Diagnosed With Autism

This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a  mom who blogs over at AutismWonderland.

Norrin on Mother’s Day 2009 – 1 Year after his Autism Diagnosis

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 have 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 a little more than four years since Norrin was diagnosed with autism. And 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 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. 

It’s not necessary to read every book on autism, that first week. 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 on 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 City 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. 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.  

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. And 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.

What do you know now that you wish you then

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  1. by Betty

    On December 16, 2012 at 10:48 am

    I wish I knew that not every “expert/professional” is right. I met with a few and was given absolutely no hope. My son was not talking by 3 so they just said to try speech therapy but there was no guarantee it would work. I understood that completely but the way there is little to no hope offered is ridiculous. I’m realistic yet I will never again lose hope in my son. He talks now and is even learning to read. I know this isn’t the case for everyone but why not allow the parents a little hope? False hope? Absolutely not! Don’t expect a miracle cure but be realistic and have hope :-) big hug

  2. by Rory Patton

    On January 12, 2013 at 2:19 pm

    My suggestion is pick up the Thinking Person’s Guide to Autism, it’s a great place to start, easy to read, short articles divided by topic and with a good list of further resources.

  3. by Kim

    On February 3, 2013 at 8:21 pm

    My little girl had downs, not autism, but what I think every parent of a special needs kid NEEDS to know, and hear often, is that you are a good parent, and the right parent, for that kid. If your persuing the books/therapy/help for those kids your doing your best by them. I remember filling out paperwork trying to figure out how the hell an inch thick pack of forms was questioning my abilities as a mother, and then having the therapists those forms were for tell me they could not beleive how far she had progressed, even after seeing it for themselves. For a special needs kid the therapy and work and difficulty makes us feel as though we are doing something wrong, and we are not. If we love them enough to do these things, and show them that love, that makes us great parents.