What I Would Have Told Myself The Day I Was Diagnosed With Autism


Dear Kerry,

When you arrived at the hospital today, you may have thought it was just for another checkup. Over the past year now we have been very used to these visits. Going to doctor after doctor throughout the tri-state area, some with funny elephants on their walls and others with what feels like an entire toy store for you at your disposal. What will make today’s visit different than any other though is today your parents will find out for the first time that you have something called PDD-NOS, pervasive development disorder not otherwise specified, a form of autism.

unnamed-2

You won’t learn what those initials and autism are for six more years but what I can tell you now is that there is a long road ahead for us. There are going to be many ups and downs along the way. You’ve already had to deal with some of the downs from being non-verbal until you were 2 and a half and now having sensory integration issues, emotional difficulties, a stutter and not being able to speak in complete sentences. The emotional issues are heightened for you because more than anything, you are often in overload because of the anger you’re feeling about not being able to communicate.

I wish more than anything right now I could go back to those days of your growing up and take that anger away. That I could take that feeling of self-doubt away from you while growing up when you had those difficulties that you thought may have gone on forever.

Why can’t I communicate?

Why can’t I make friends?

Why do I scream when someone tries to touch me?

Will I ever be loved for who I am?

And then finally…

Why me?

I know the road seems dark right now but what I can tell you is this:

You will learn to communicate.

You will make friends.

You will become someone who loves to be touched to the point that you’ll even want to go to Central Park one day in New York holding a “Free Hugs” sign.

You will find out that you were loved all this time by your family, your friends and later, by several girls in romantic relationships.

And then, when you see that there is a light at the end of the tunnel, you won’t question why you have autism. You will love the fact you were put on this planet with something that you have been able to embrace, which has made you a national speaker and role model to countless in the autism community today. Because, today, you have learned what your weaknesses are and what strengths your autism brings to your everyday life–like being able to focus on key interests for long periods of time. That at other times, you will be one of the most genuine and truthful people that you will ever meet.

So, Kerry, today you may have been diagnosed with autism, and the road may indeed be long, but don’t let autism define who you are.

Define yourself.

Different, not less. — Temple Grandin

Autism is a very wide spectrum. If you’ve met one person with autism, you’ve met one person with autism. I can’t say that my story above will be similar to the next individual, or that we will see autism in the same way. What I do know though is that we were all put upon this earth with challenges to face and overcome. For everyone in our community, what I ask is that you stay true to the therapies and supports our loved ones may need and always try to do right by them.

It took me almost 16 years after being first diagnosed to see this message the way I do now. After the occupational therapy, the speech therapy and the physical therapy, I have a much different outlook, and I wouldn’t have been able to do that without our community.

Always believe great things are possible. We know more about autism than we did yesterday, and we sure will know more about it tomorrow.

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

The Movie Scene That Unexpectedly Helped Me Understand My Son's Autism

I wish I had a dime for every time someone told me my son doesn’t look autistic. No, really, I would have a pretty hefty bank account. I’ve heard it from strangers, friends and family. I’ve actually heard more than once that I’m lucky he doesn’t act as autistic as some children with autism. To [...]

Why I Was Proud When My Son Yelled That He Was Mad

Boys who cry can work for Google. Boys who trash computers cannot. I once was at a science conference, and I saw a NASA scientist who had just found out that his project was canceled — a project he’d worked on for years. He was maybe 65 years old, and you know what? He was crying. [...]

New App May Help Children With Autism Get Better at This Crucial Skill

Some people with autism struggle to make and maintain eye-contact. This can make it more difficult to connect with those around them and to accurately read people’s emotions and facial expressions. To help combat this problem, Samsung and a team of scientists developed an interactive camera app called Look At Me. In a study, 20 children trained [...]
father's hand holding his son's hand

Why My Son's Long Fingernails Are a Huge Reason to Celebrate

My son’s fingernails are a little long. Mental note: Trim them during bath time tonight. But wait. I haven’t trimmed his nails in a long time. I haven’t needed to — he’s been chewing them himself. In fact, he was even chewing his toenails (flexible little bugger). Anxiety. The past couple of years brought a lot [...]