As Autism Awareness Month comes to an end, I’ve been thinking a lot about the realities of autism versus the perception of autism. The number of those affected by autism continues to increase at an alarming rate, and the public response seems to be to celebrate -Vive La Différence! I featured the This Is My Autism series this month because I wanted to shed light on what individuals and families living with autism face on day-to-day basis. There are serious medical issues. Constant vigilance is required to prevent wandering and accidents. Often, a Herculean effort is required to complete the most basic of tasks. And every victory, every milestone was earned with blood, sweat, and tears.

But I want to write about one of the biggest difficulties that comes with autism. It weighs on me daily. I can only imagine how it affects my son, Christopher. And it might even be THE biggest issue for me – the main reason why I refuse to commemorate April with blue lights, and why I want to obliterate autism and send all the puzzle pieces of it flying out to space.

This Is MY Autism

That reason is that I want to KNOW my son. Like to really know him and understand him. Of course I love him. I love him with all of my heart and I would do anything for him. And just by being his mom I have a sense of who he is and what he needs. But I don’t know him in that way that allows me to bask in his unique awesomeness and him to shine his own bright light on the world.

When I talk to my other kids, I am often amazed – by their insights, their perspective, their goofy ideas and their interesting take on the world around them. I love that part about watching them grow – getting to know them and helping them develop and cultivate who they are and who they want to be. But it is so much harder to do that with autism.

Christopher, trying to communicate with his dad.

With autism, much of my interaction with Christopher is trying to figure out what he wants and needs. Are you hungry? Do you want to take a break?  Do you want to play outside? His communication is improving. But our big breakthrough is him saying short sentences, like “I want drink.” or “I want ball.” If he had a field trip or a party at school, he can answer “yes” that he liked it, but I don’t get to hear what happened, or his thoughts on it, or if he found something funny or surprising.

And the disappointing part about that isn’t that I don’t get to know it. It’s that I KNOW that it’s in there. I’m sure he thinks about deeper things. And I think he wants to be able to communicate those things. But he can’t. All of those thoughts – his deepest fears, his hopes and dreams, his interesting observations and best ideas – are locked inside, trapped by autism.

Can you imagine if you had a secret you wanted to share, or something you wanted to get off of your chest, or a burning question about the world, or a great idea that you wanted to tell someone … and you couldn’t? Would it eat you up inside? And what if you couldn’t EVER share those things? What if you just had to live like that, knowing that no one would ever really know you? It must be so, so difficult … and frustrating … and lonely.

I think about that all the time.

And the best I can do is try to figure it out. Try to read his mind. And pray that I’m on the right track. If he is crying, I’m guessing about what is wrong and how to help. Even if he can communicate to me that it is his stomach that is bothering him, I’m not sure what it is. I don’t know if his pants are too tight or if he ate something that didn’t agree with him or if his appendix has ruptured. I have to figure out if he is having a tantrum or a medical emergency. And if I’m often struggling with these basic things, how can I ever get to that deeper level?

So much of my mom job is hindered by autism. How can I alleviate fears, instill confidence, comfort worries if I don’t know what they are? I am supposed to support and protect my kids and sometimes with Christopher I am left feeling so helpless and useless.

So what can I do? I don’t really know the answer, or if there even is one. I tell him and show him that I will always be here, that I will always do my best for him, and that I will never give up on him.

And when I am really at a loss to understand what it going on with him, I pray for guidance and clarity. Hopefully, we can communicate on a deeper level that still provides that comfort and assurance he needs.

Christopher, with me earlier this year

I tell Christopher that I know he has things that he wants to tell me, and that I really, really want to understand them, and understand him. I tell him that I am sorry that I can’t figure it out now. And I ask him to please forgive me for that, and to please keep trying to communicate with me. I ask him to not give up on me either.