Looking back at my son's diagnosis 12 years later

By Kathy Hooven | May 9, 2019

Follow Kathy Hooven's blog, The AWEnesty of Autism.

Kathy and Son

So, you finally heard it. The word you may have been both searching for and hiding from. Autism. And with one six letter word, your world tilts on its axis and you tilt with it. Been there. Done that.

It’s been 12 years since my son was diagnosed with autism. That’s twelve years of doing the best I can to right both his world and mine, not by disregarding his diagnosis, trying to “fix him” or make him be someone he is not, but, by learning, advocating and sadly, screwing up. I’m still apologizing for some of my mistakes.

You will screw up. You will second guess yourself. You will make huge progress then with one FB pic of your kid not making the cut to a party, a dance, or some other social event, you will tumble backwards again. You are human. But even with all your human frailty, you will pick yourself up, dust yourself off and move forward again because your kid needs you to be upright and moving forward. Nothing good comes from looking back.

In those weeks when I struggled to get up, I wish I would have had someone to guide me. Someone who has been there, done that. Someone with just a few hints on how to help me help me son in order to try and "right" our world again. If I did, I wish they would have offered me these 11 words.

Breathe. Holding your breath and hoping this diagnosis was wrong and that if you just ignore it, the world will be as you expected once again will cause you to turn blue and pass out. Your son or daughter needs you to be upright and breathing.

Look for parents who have been there, done that. Whether it’s a support group or a friend of a friend, look for support. Better yet, look to an individual with autism. Who better to educate you about autism?

Find your person. You will need one. Someone you can share your child’s triumphs and joys and your progress and setbacks. Find your person and hold them tight.

Care for your child AND for you. There is so much to learn, so many appointments, specialists, therapies and IEP meetings. Don’t forget when you are busy taking care of everything and everyone, to include yourself on the list.

Learn everything you can about autism then tweak what you have learned and personalize it for your son or daughter. Just like neurotypicals, there is no one size fits all for autism.

See your child. I mean really, truly see them. Don’t look at your son or daughter as a collective disorder, see them for the unique individual that they are.

Stop Google searching. In fact, run like hell away from it. Your child is not there. Don’t try and find them on the internet. They are right in front of you. Please don't try and find your son or daughter somewhere else. Let them guide you.

Accept your child for who they are, embrace them, love them, celebrate them so that they will celebrate who they are too.

Remember you are human. You will help your son or daughter feel safe, happy and accepted, but, you will make mistakes, don't belabor them. It's ok, your child will forgive you as long as you learn from that mistake and forgive yourself.

Advocate for your child. No one knows him/her better than you do, however, as they get older, if possible, help them gain the skills to advocate for themselves. 

Laugh often, laugh hard. Many things will throw your world off it's axis, the world is a crazy, spinning, unpredictable place, so when you fall down, stand back up, brush yourself off, laugh a little at your stumble and move forward. Your child is watching you and you need to show them that autism is not bad or less, it's just different and different is not the end of the world, in fact, it's just the beginning of a new one.

This blog post was written by Kathy Hooven, mother to a son with autism. You can read more about Kathy and her family on her blog, "The AWEnesty of Autism." You can also follow her on Facebook.

Autism Speaks does not provide medical or legal advice or services. Rather, Autism Speaks provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks has not validated and is not responsible for any information, events, or services provided by third parties. The views and opinions expressed in blogs on our website do not necessarily reflect the views of Autism Speaks.

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