Autism Never Crossed Our Minds

Our son Sullivan is autistic and has Attention Deficit Hyperactive Disorder, Oppositional Defiant Disorder and Sensory Processing Disorder.

Many people ask us, when did you know your son was autistic?

That’s a tricky question because initially we had no idea.

Sully had what we know now as sensory issues early on.

We had to try many different bottle nipples, he threw up a lot, he stuffed food in his mouth till he choked, he would eat and eat and not like the feeling in his stomach and make himself throw up.

As he got older, he started getting into things often, he was fearless, had so much energy, wouldn’t listen and was very impulsive both with his actions and his words.

We talked to his pediatrician and she kept saying, “oh, he’s just two, he’s just three, he’s just four…”

I recall one day in particular where we were having a very hard day and I left the boys with dad because I desperately needed a break.

I drove to the Walmart parking lot, and just sat there crying thinking to myself, where did I go wrong? Am I a bad parent? How can I not help or control my child? What is going on with him?

I am ashamed to admit I didn’t want to go home, in fact I dreaded it.

This moment was when I realized we needed to get help.

In discussing our concerns and trying to figure out what help we needed, some people said perhaps he was just a kid that needed to be active and entertained.

So we signed him up for soccer through our local parks and recreation.

It was during soccer that we realized how different Sully was from his peers.

You see Sully hadn’t been around a lot of kids. He didn’t go to daycare.

Tim worked 3rd shift and then came home and took care of the boys till I got home from work.

We were like ships passing in the night.

At soccer he couldn’t stay in one spot for the different drills to save his life.

He was all over the place and very hyper.

After a couple practices, we realized soccer was not working.

We asked our pediatrician for a referral to have Sullivan evaluated by a psychologist. We were pretty sure he may have ADHD and maybe some type of sensory issues.

We filled out the questionnaires as best we could. Boy there were a lot of questions. We thought to ourselves, we’re we filling out correctly? Were there right and wrong answers? We held our breath until we had our meeting to talk about the results.

The psychologist started off by telling us that he definitely had sensory issues known as Sensory Processing Disorder (SPD). 

Through testing they determined Sully had severe Attention Deficit Hyperactive Disorder (ADHD).

Our psychologist said it was one of the most severe she has seen at that age.  We suspected he had ADHD but didn’t realize it was so severe.

She also said he had Oppositional Defiant Disorder (ODD) which we didn’t know much about but she said was part of why he was quick to anger.

She then started talking about autism and how all of these diagnoses are characteristics of autism.

I think I might have blacked out for a minute and burst into tears.

She assured me she was not diagnosing him with autism but many with autism have these characteristics.

I thought, no way did my son have autism.

All I knew about autism was the severe cases.

I felt heartbroken but kept going back to her saying I’m not diagnosing him with Autism.

But why was she saying this? 

We were gonna to just try therapy but given Sully’s ADHD was so severe and he was scoring below the 10th percentile for his age, she told us it would be like not giving a kid insulin if they were diabetic.

So we opted to go the medication route.

We had to try a couple of different pediatric psychiatrists (the options were very sparse.) before we found one we liked, wouldn’t give up on Sully and thought outside the box.

We would eventually try different medications, different dosages and different combinations of medications before we found the sweet spot.

Sully was reevaluated and scored at or above his age range on medication. We were pleased with the results.

We were about two years in from our initial diagnosis at age four.

I had been doing a lot of research, following different Facebook pages and groups and reading up on everything I could.

The more I researched, the more I read, the more I learned, the more I observed our son. I had this feeling deep down in my gut that there was something else going on with him and I had a feeling it was autism.

I started talking to others about my gut feelings. I asked my husband, teachers, and friends on the spectrum what they thought.

I think I wanted my thoughts validated but I wasn’t getting that.

Eventually I mustered up the courage to call Sully’s psychologist to ask him to be reevaluated specifically for autism.

She retested him and he was right on the borderline and used words like Aspergers and higher functioning.

But what did that mean?

It meant he was autistic. It meant my gut was right.

It meant the medications like an onion, peeled back layers to allow us to see what was underneath and at the core of all his other diagnoses…autism.

I cried even though I knew this was probably gonna be the outcome but, it’s still never easy to hear.

Our psychologist did say something that gave me hope.

No one ever wants this diagnosis but it will open so many more doors and resources for services and support for Sully and she was right.