Understandable Fear With My Child’s Autism Diagnosis

There’s a big difference between ten and two in terms of age. By the time your kid reaches double digits, you have a good idea about who they are. You know their likes, wants, and overall view of life. They continue to evolve, but by and large, they have become people.

A two-year-old is still somewhat mysterious. You’re discovering new things every day. There are phone calls like, “I don’t know. I walked in and she was singing to the cable box. This kid is so weird.” They’re still developing and it’s all unexpected.

Today, my son is ten. When he was diagnosed with autism, though, he was closer to two. In those eight years, my life changed many times over, but my relationship with him remains the biggest surprise.

When people hear that he was diagnosed young, they think it’s a blessing. They’re not entirely wrong. With that professional decree, doors open. You begin to learn what you need to know to be the best parent you can be. Being told your child has autism brings with it a slew services that you didn’t know existed. It is a very positive step when caring for the little one in your life.

However, for me and many others, it occurred during the time that I didn’t really know who my son was just yet. He was this cryptic baby right around the “singing to the cable box” age. The only problem? He wasn’t singing to cable boxes. He wasn’t singing at all. He wasn’t even talking. At that stage of his life, he wasn’t doing much. I could barely get him to look up at me.

This was at the time when other parents in our age-group and social circle were raising their own two-year-olds. You’d hear about the achievements they’ve made or, worse yet, meet the actual kid in person. You get a spotlight firsthand on all the things your own child isn’t doing. In one case, while my son was being held up in a bouncer seat due to his inability to walk, another baby, who was my son’s exact age, went over and held his bottle for him as he drank from it. He turned to smile for all the giggling adults in the room while Lucas obliviously drank. Everyone thought it was so adorable and I imagine it was in their eyes. Me? It made me want to throw up.

Life goes on as your fielding these delay concerns. Other parents to other kids his age would complain about their own children and I’d listen awestruck. They’d start going on about how their kid won’t stop asking questions or how the tee-ball coach says he doesn’t “hustle”. Meanwhile, I’m trying to teach my own son how to balance his weight while walking. It’s at this point where even parents who try to kid themselves about the reality of their own situation have no choice but to let it in.

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The diagnosis, the lead up, the fall out – it’s all scary. Don’t let anyone tell you otherwise. Not only that, but you will feel guilt for that fear. Don’t. It’s real. This is your baby and you’re embarking on an unknown journey that you weren’t prepared for. To not let it frighten you is to not care. Most parents care. It’s heart-wrenching. It doesn’t mean you don’t love your child. In fact, it means the opposite.

There’s little positive news or good things sold to you on the horizon. Instead, all you’re hearing about is what your child is not capable of and the skills they probably won’t have. Professionals will look you in the eye and predict crushing worse-case-scenarios for the rest of your life without batting an eye. They will tell you things you “have to prepare for” and “be ready to accept.” They’ll talk about your child in dire ways while standing in the same room as them. They shake your home to its foundation and tell you to see the nurse on the way out.

You can’t scream. You can’t throw things. You can’t knock the glasses off his or her stupid face. You have to listen, take it in, and do what’s best for your child.

My son was one of the most mysterious babies I ever met. I knew so little about him and, with doctors speaking their pieces early, felt that I might never know him. I was unsure if he could ever communicate with me or know that I was even in the room. I was prepared for and accepted any future that was ahead of me. If that day came and our interactions were minimal, I was ready for it.

Every step of the way, though, I fought to not let that happen. I developed songs and tickle games to let him know I was there. I found ways to get into his world rather than breathlessly pulling him into mine. I found ways to bond with my son based on what I observed him do, rather than what society said we should. It was on me to figure out the best ways to get the most of our relationship and I did just that. Is it everything that other parents might have with their kids? Maybe not. Is it perfect for us? Yes.

Today, we’re happier than ever. I’ve waited my whole life for these kids. It doesn’t matter how they communicate or if they communicate at all. You love people for who they are, not what they do.