Today is “World Autism Awareness Day.”

I shared this a while back. I actually wrote this 4 months after Jonah was diagnosed…but I thought it appropriate for today.

My 4-year-old Jonah was diagnosed with Autism a little over a year ago.

Diagnosis day for us was difficult. I remember it like it was yesterday. We were given a 19 page summary of two 2-hour evaluations by a complete stranger over a one month period regarding our son’s future.

Out of 19 pages, all I saw was this part:

DIAGNOSTIC IMPRESSIONS
Autism Spectrum Disorder:

With developmental delays
With limited functional communication
With anxiety features
*DSM-5 severity rating of Level 3 (requires very substantial support) is assigned for Social Communication and Restricted/Repetitive Behaviors.

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There are only three “levels” of autism severity under the current diagnostic model. “Three” being the most severe.

Our son has “severe” Autism. That is what the stranger, who had spent all of 4 hours with him revealed to us about how she saw him.

Severe autism.

What did that mean? What DOES that mean?

Certainties about his future became uncertain. And with uncertainty came worry. And worry caused stress. And stress led to anxiety. That’s where I was. For a long time.

Autism is a HUGE spectrum and we had no idea where he would fall on it. We still don’t. And though, we will do all we can to help him succeed in life, he is and will always BE autistic. Things that we cannot control have a direct effect on his successes and failures throughout his life.

There is no guarantee that he will progress developmentally no matter what we as parents do. Developmental regression is a VERY real possibility despite our best efforts and is a reality for many in the autism community.

Uncertainty, in and of itself is not inherently “bad,” but fear of uncertainty can be CRIPPLING.

It was for me. And so what did I do?

I grew despondent, depressed and fearful. I began seeking out the “worst case scenarios” and “awful possibilities” with autism, watching kids uncontrollably melting down, parents unable to do anything to help. I sat there wondering, how long until “that” was us? I looked specifically for autistic regression so I knew what to expect when that happened to us. I asked Jonah’s nanny to send videos of him when he was younger, certain I had already found signs of that regression I had just missed.

I worried about us. I worried about the future. I worried about the burden it would be on our extended family.

When a stranger told me how I should see my son, I discredited everything I already intrinsically knew about him since the day we took him home from the hospital, and saw my son how THEY portrayed him from the few hours they “observed” him.

When I realized that when I had heard the word “AUTISM,” I no longer saw my son… I saw a label. I saw a broken shell of a little boy and all his Daddy’s dreams for him…and it left me…absolutely DISGUSTED with myself.

It’s like God had to kick me in the rear to pull myself out of my self-prescribed misery and look at the beautiful boy He had made.

“In His image.”

And that left me in tears. Jonah had not changed one bit. If anything I was the “broken” one.

I had to look at Jonah from a COMPLETELY different perspective.

I was comparing my outlook on Jonah’s life to the outlook other’s have for their kid’s lives.

I do not want my child to be raised believing that his potential is limited by one section in a 19-page diagnosis.

We all have our own journey in this life. We cannot compare our journey to those of another.

No, we STILL do not know what the future holds, but with or without autism, we are not even promised TOMORROW.

What is it we compete against now? Yesterday.

We are striving to make today a better day than yesterday. Did we have any victories today, we did not yesterday? Are we a better person today, than we were yesterday? Have we helped someone else to be a better person today than THEY were yesterday?

And that is what we have been doing. I choose every day to not limit how I see Jonah’s potential. I will keep pushing him to excel. I will share in his victories and encourage him in his setbacks.

I will continue to push him to be more than he thinks he can be and do more than he thinks he can do. I will grow as a person to be his fiercest advocate, and I will accept him for EVERYTHING he already is, not despairing over the things that he is not.

And though the future is still uncertain, I will look at it as a grand adventure. One unlike any other. I will step out in faith and choose to believe that Jonah will continue to have victories in whatever he puts his mind to.

Where success is measured by lives touched, not by scores on some evaluation or a “diagnostic impression.”

I will be there to support him every step of the way.

THAT is now what “Severe Autism” means to me.

Original Facebook Post.