My son has Autism

MY SON HAS AUTISM

My son has autism.

My son has autism.

My son…has autism.

No matter how many times I say this sentence…no matter where I put the emphasis…this sentence kicks me in my stomach and completely takes my breath away every single time I say it.

We have suspected this for quite some time. We have struggled for so long to find answers. We have seen many, many specialists who are qualified to make this diagnosis. We have tried absolutely everything over the past 7+ years.

And even though we have suspected it, I can’t say that sentence without feeling sick. I’m sure it’ll get easier. I’m sure it’ll soon become part of our everyday vocabulary. But right now, it’s really hard. And I am so incredibly sad for my son.

A little backstory if you’re interested.

We’ve struggled with Connor’s behavior for many, many years. He’s always done well at school and for the most part, saved the difficult behavior for us at home. He’s always been aggressive. But over the past 18ish months, his aggression has become much worse and more difficult to manage.

He has a hard time making friends. This became super obvious (and very painful to witness) in third grade. It was even more apparent when he started a new school last year in fourth grade.

Connor lacks basic social skills. And he definitely has some of the typical characteristics of Autism.

After several months of really challenging behaviors and difficult social situations at school, we decided to have Connor reevaluated for Autism. At the beginning of January, Abe and I had a 2-hour appointment with the clinical psychologist who evaluated Connor. She went over every single test, assessment, and evaluation tool that she used as well as all of the screenings Abe and I filled out. It was extremely thorough. And everything she said made so much sense. I knew she really understood Connor. Finally, someone is seeing what we’re seeing. At the end of the two hours, we received his official diagnosis: Autism Spectrum Disorder, without intellectual impairment, Level 2.

My son has autism.

The very few people we have told have expressed that they’re happy for us. And I completely understand where they’re coming from. The small circle of friends and family that really truly know and have seen our struggles over the years are happy that we have some answers. And overall, I am grateful for the diagnosis, too. For the very first time, I feel like we left an appointment with an actual answer and clear directions for moving forward. So I absolutely get it when friends and family say they’re happy for us.

But I will be honest when I say I am also feeling very sad. And also so freaking pissed off.

I am mad because I know how important early intervention is, especially for kids on the spectrum. I have asked over and over, many different health care professionals if they thought Connor has autism. When he was six years old and had a full neuropsych evaluation, I asked the physician evaluating him to screen for autism. They did and he didn’t meet the criteria at that time. How?! All the signs and behaviors we see now, the behaviors that got him the diagnosis now at 10 were already there at 6! How did they not see it then? I feel like Connor has missed out on years of therapies that could have helped tremendously. Would the last several years have been as hard if we started therapies sooner? I imagine not. If Abe and I knew what we were dealing with, if we were taught how to understand Connor’s brain and were able to see his behaviors as him struggling and not him disobeying, would we have been more patient? I would imagine so. If we had support sooner would I still feel absolutely fried and completely burnt out? Probably not. I am so mad that we didn’t get the support that we needed all along. Yes, I know, it’s great that we will get the services now. It really is. And I hope I can get past this anger very soon. But for right now, I’m mad.

I’m also really sad. I am sad that this is a lifelong diagnosis for him. I am sad that everything has always been so hard for Connor. Kids at school can be really, really mean. Because Connor doesn’t understand social cues, it’s hard for him to socialize with his peers. They find his behaviors and the things he wants to talk about annoying. But Connor doesn’t understand what he’s doing to annoy them. It’s sad to see how hard it is for him to find friends. He prefers being alone and I can’t help but wonder, is he’s lonely?

When I think about his future, I am the saddest. Will he ever have friends? He’s incredibly smart so I don’t worry about him having a career someday. But will he know how to communicate with his coworkers? Will he date and get married? In the very near future, I wonder if the symptoms will get worse. He’ll be moving over to the Prep campus next school year. How will he manage using a locker, switching classes, having multiple teachers, etc.? As he and his classmates get older, will they be even more mean to him? How will he handle that?

This post isn’t cheery or uplifting. It isn’t full of hope and positivity. And this post is definitely not a resource for parents with a new autism diagnosis. These are my real, in the moment thoughts and emotions since receiving the news. I am grieving this diagnosis and the loss that it brings. I am hopeful that I will soon be able to fully embrace the diagnosis. And yes, I am grateful for the diagnosis. But right now, I am sad for my son.