Fighting for an Autism Diagnosis

12049231_1064967266856096_1143352945111793848_nI thought getting a diagnosis would be easy. My son is different. He doesn’t talk. He flaps. He screeches. He hates to be touched by strangers.

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.

There is something wrong. Tell me what it is so I can fix it.

That’s what you do. It’s broken and you fix it.

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

I had to fight for that autism diagnosis. Picture a mom on top of a mountain with a sword in the air screaming. That was me. I remember thinking…look at him. Look at me. Just believe me. Just put my damn fears to rest. Confirm that he is different so I can start to move on.

But it took years.

I was stuck in that limbo.

He could have a speech delay. Maybe it’s just sensory issues. Maybe it’s a hearing loss. 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 I did. Their feelings got in the way.

So we did therapy after therapy. And waited. We waited for a breakthrough.

We lived for years in that hell. Waiting. 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 knew it was autism. I knew from day one. I had no doubt. Cooper was autistic.

I also knew he would never talk. Yes, he was only 2 years old. But it didn’t matter. I knew.

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 went around the room and took a vote on whether to label him autistic or developmentally delayed.

I sat there watching their faces. They refused to make eye contact with me. I was screaming in my head…just say it you assholes. 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. And then the services started coming in. A few years went by. Time went on. I started to heal. Cooper started to thrive. We built a community 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 the fight I went through to get here. To get to this very moment in my life. 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. And put his idea out of my head. I didn’t tell another person what the man had said. Neither friends nor family.

There is enough emotion in that once sentence, ‘I don’t think your son is autistic,’ to level team Super Cooper. So, I am going to hold onto that for a while. Bury it deep down. And keep fighting for my autistic kid.


15 thoughts on “Fighting for an Autism Diagnosis

  1. I totally get this! I had well meaning friends and family tell me my son can’t be autistic because he loves socializing and was so smart….but I was like ” he’s 3 1/2 and still doesn’t say a word people!!!” He also flaps and toe walks and is not potty trained and blah blah blah. It’s exhausting when you as Coopers mother just gets dismissed by people. You know him best!!!

    Btw, I love your blog and I found it just in time as we had just received our diagnosis. I was at my lowest point and reading your blog makes me feel like I have found a friend!
    Thank you!

  2. Your school gave you a vote? That’s unique. Our school system doesn’t recognize autism until 5. From 3-5, kids are classified as delayed. At 5 they have the ados and IQ testing to see if they autism, intellectual disability etc. I already have accepted my son has autism too. Keep up the fight!

  3. I think people just assume if a child is social they cannot be autistic. Mason is very social. He says hi to every single person in his school when he walks in. he knows who everyone’s parents are too and says hi to them when they pick their kids up lol.

  4. Also Mason’s EI team did not think Mason was autistic and thought he would not get a dx when decided to have him evaluated. My advise is don’t listen to anyone other than the people who specialize diagnosing autism! No one else really knows.

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