Additional Needs

To the Person Who Told Me That My Son Wasn’t Autistic

Posted by Kate Swenson on 17th March 2017 Additional Needs, Advice & Support, Disabilities

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My son is extremely rigid. He can’t transition.  He doesn’t talk. He flaps. He screeches. He hates to be touched by strangers.

He lines items up. He puts everything in his mouth. He doesn’t play with any toys.

As a baby he never slept. Ever. He cried constantly. Endless ear infections, stomach issues, constipation, hearing problems. The list goes on.

He never babbled. To this day he’s never said a word.

I thought it was obvious.

I needed a doctor to tell me what was wrong so I could fix it.

No one ever told me there is an unknown. And it’s worse than knowing.

I remember thinking…look at him. Look at me. Just believe me. Just put my damn fears to rest.

Confirm that he is autistic so we can start to help him.

But it took years.

We were stuck in limbo. We started speech and occupational therapy. Neither of them helped.

One doctor said he could have a speech delay. Another said sensory issues. One doctor said a hearing loss. His pediatrician called him a later bloomer. She said boys develop slower.

No one would say the word autism. It’s like they were scared to say it out loud.

Honestly, I think they really liked me. And my husband and our little family.

They didn’t want Cooper to be autistic any more than we did. Their feelings got in the way.

So, we continued with therapy. All the while paying out of pocket and slowly going broke.

We waited for a breakthrough.

A year went by in limbo. I can still vividly go back to those days and nights of worry.

I would wait for Cooper to go to bed and then I would watch him in the dark and analyze every moment of the day.

He did ‘this’ that WAS very autistic.

And then he did ‘that’ which was NOT autistic.

And then I would add them up.

I spent hours every night finding blogs about kids like Cooper.

I completed autism checklists online. I asked Google about nonverbal children.

Every answer said autism.

I knew it was true. Except no one believed me. Not Cooper’s dad. Not our parents.

His pediatrician gushed about his eye contact. Because of that eye contact she missed everything else.

Teachers went on and on about how sweet Cooper was. He loved hugs and holding hands. He craved and demanded attention and praise.

And they missed the other signs.

Even at his first IEP meeting the teachers failed us. No one wanted to say autism.

They were torn between that and developmentally delayed.

They went as far as going around the room and taking a vote on whether to label him autistic or developmentally delayed.

It was traumatic.

I sat there watching their faces. They refused to make eye contact with me.

I was screaming in my head…just say it you jerks.

Just say it. What if it was your kid?

The vote came 4 to 3 with a favor of developmentally delayed.

I got the final vote.

I looked at them and thought…you failed this kid. You failed me.

You are supposed to tell me what to do. I am just a normal mom who doesn’t know what to do.

And a quiet teacher spoke up and said…’I think you should pick autism. He will get more services. And you will get more help. And if he isn’t autistic it will surface eventually.’

And the tears came.

The room was silent.

Fine. I will diagnose my own son.

Cooper is autistic.

And then I eventually found the right people. The right doctors and therapists.

And I got the help we needed. And the diagnosis that I so needed to hear out loud.

We moved to a new city with a fantastic autism program. The services started coming in. A few years went by.

Time went on. I started to heal. Cooper started to thrive.

We built a village around this kiddo and watched him thrive.

The autism was still there. No words. Severe sensory issues. Extreme rigidity.

But he was growing. We were a team. And we were making it.

And then it happened.

A teacher looked at me and said, “I don’t think your son is autistic.”

I felt like I had been punched in the stomach. I couldn’t speak. There were no words.

For once I was at a loss. I hadn’t heard that sentence in years.

I felt the sweat on my face.

I looked down and counted to ten before speaking. I had too. I was so angry I couldn’t even speak.

The person went onto say that Cooper was too social to be autistic. He was too loving. He didn’t fit the profile. He obviously had a severe speech delay and sensory processing disorder.

He listed a few other things but I couldn’t listen. I was too angry.

If this person knew what I went through to get to this exact moment in my life they wouldn’t be saying these words.

The countless appointments and time and moments missed. The agony and crying over wondering is he or isn’t he.

How dare he. How dare he play doctor or God with my son.

With my life. With my hope. But most of all with my acceptance.

My son was autistic. It took me 4 ½ years to be able to say that out loud.

Cooper and I were in a good place.

I looked up and smiled.

I told him thank you.

Thank you for getting to know Cooper. For truly spending time with him and creating a bond with him.

But, Cooper is Cooper. Autistic or not. Label or no label. He’s still Cooper.

I asked him to keep fighting for Cooper and raising him up.

That’s what we needed. People that believed in him. Believed in us.

And I left the room. I cried the whole drive home.

There was enough emotion in that once sentence, ‘I don’t think your son is autistic,’ to level me.

I knew in my heart it wasn’t true and hearing it out loud crushed me.

How dare he. Maybe I should’ve been happy. Or hopeful.

But hearing that my son wasn’t autistic had suddenly become just as painful as hearing he was autistic.

We’d come full circle.