About a year before my son Nicholas was diagnosed with Autism, I started following some special needs blogs and autism blogs online. He had developmental delay and sensory processing disorder, so I had a feeling an autism diagnosis was coming. I started reading about people’s experiences for support, but also to educate myself. I think it was my way of preparing myself, but also being in control of the situation.

I learned from reading that autism doesn’t go away. There’s no cure and it’s not something you just grow out of. I learned not every person with autism is alike; when you’ve met one person with autism, you’ve met one person with autism. I realized people with autism have certain looks, but not everybody with autism has those features. I read all the questions or comments people would say that irritated parents with kids who have autism.

I went back and forth about whether I thought Nicholas had autism or not. Sometimes I just felt like he had sensory processing disorder and developmental delay and that was that. But the signs were there. He had meltdowns, speech delay, lack of socialization, no imaginative play, GI issues, sleep problems, and the list goes on. A few months before his diagnosis, he began to self-injure. He started hitting his head out of frustration, sometimes out of excitement. That was when I knew.

We were on a waiting list for a year for our evaluation. Nicholas had just turned 3 years old. My husband Steve took off work because this was an important appointment for our family, plus it was going to take half the day. We went into a room with two doctors; a developmental-behavioral pediatrician and a psychologist. (He had seen an occupational therapist the day before). The psychologist played with Nicholas while the pediatrician asked Steve and I questions about his medical history, likes, dislikes, etc. The evaluation took 1.5 hours, then we took a break for an hour. When the doctors came back, they gave Nicholas an official diagnosis of autism and developmental delay.

My first thoughts were, “Will it go away?” and “He’ll grow out of it someday.” My mind immediately went to the comments that bothered most parents. Even though I had prepared myself for a possible diagnosis, I felt scared and lonely in that moment. Yet I felt relief at the same time. It was nice to finally have an answer. For a long time we didn’t know and it felt good to have understanding for why our son was the way he is.

Two things stood out to me at that evaluation. I learned his autism and developmental delay are two different things. I always thought they coincided. The way they explained it is that his autism gets in the way of his development. I liked how they called it “his autism.” It made it sound unique and shows all autism is different.

I also learned that Nicholas plays in a sensory way instead of a critical thinking way. Nicholas touches things, licks things, bangs toys together, smells things, etc. He likes sounds and movement. He likes the way toys sound on hardwood floor and when a tower of blocks hits in the table. Nicholas will also seek out visual stimulation by kicking the blinds and doors, watching a ceiling fan, or the movement from the car. Despite having difficulties with his vision, he uses it well. Hearing this made me understand him and the way he plays better.

All in all, title or not, at the end of the day, Nicholas was still Nicholas. Nothing changes. We still continue with therapy and giving him the support he needs to grow. He’s still so loved by everyone around him. And that’s what matters.