I have written about World Autism Awareness Day and my thoughts that come to mind on this day before, but I felt the urge to write about what this day means for us and a lot of other autism families I know. True, the entire month of April is Autism Awareness Month, but typically in my experience people are quick to forget after April 2 passes by. Isn’t that the truth about any awareness “holiday”, though?

A single day or month for world autism awareness never feels like enough and sometimes feels a little laughable because every day in our house is autism awareness day. There isn’t a day that goes by that our lives are not affected by autism and its nuances.

Some days are great; some days I giggle at the funny comments Sawyer makes or marvel at his unmatched honesty and I love his autism; I am often fascinated by the way he sees and experiences the world. Sawyer often says things that pop into his mind as an honest observation or thought, and he has no idea how funny, sweet, and precious it can be. He is an endless source of entertainment on days like this. On these days I cherish the endless giggles and cuddles I can get from him, and try to remember all the funny one-liners he throws out unknowingly.

Other days are horrible and hard; some days he hits himself in the face or scratches himself when he gets frustrated, or exhibits rage that is terrifying for a mom who realizes her son will quickly be bigger than she is and harder to calm down in those moments. Some days my son comes home from school asking why people make fun of him for stimming, or intentionally do things to make him upset to see if they can cause a meltdown, because they think his meltdowns are funny. Some days I cry quietly in another room because sometimes autism makes life so hard and torturous for my son. This world is not made for people who can’t handle loud, unexpected noises or bright lights or a lot of chaos at once, and people don’t always accept those who are obviously different. On days like that I hate autism, and feel sad and frustrated that I can’t do more to help him.

I often stress about the day when I can no longer take care of him and I’m forced to make hard decisions for his well being and mine. There also isn’t a day that goes by that I don’t feel immense mom guilt about the fact that eventually Sawyer’s siblings will be the ones responsible for his care. We all know that death is a fact of life, but most parents don’t worry about what will happen to their children when they’re not around to take care of them anymore. And honestly, Sawyer is very independent in most areas so I don’t worry that he’d be able to live on his own some day, but his naivety and trust make him an easy target for people who’d want to take advantage of him and his generosity. I have friends with grown children on the spectrum who have had “friends” steal money from them and more. The girls and I worry about this kind of thing happening to Sawyer when he grows up, and even though they have both reassured me that when the day comes that I can no longer take care of Sawyer and watch out for him, they will. I know they will, too, but there are a lot of emotions that go along with knowing they will need to watch over him through his life. That’s supposed to be my job, not theirs- even though I do feel deeply grateful and immensely proud that they are so willing to step up for their brother.

However, I don’t ever wish that Sawyer were “normal” or “different”. A lot of people ask me if I ever wish Sawyer didn’t have autism. My answer to that is always the same: “No, because autism makes him who he is”. Sawyer is who he is because of the fact that he’s neurodivergent. His brain works differently than most people, and it makes him the deeply empathetic, insightful, and caring child he is. He has struggles just like anyone- that’s true- and he’s not perfect, but the fact that his autism makes him such a honest person means there are no pretenses with him; you never have to wonder if he’s lying or pretending to be something he’s not, and that honesty is refreshing and encouraging. When he hugs you, it’s because he genuinely loves and cares about you and wants you to know that. When he says something, it’s exactly what he means. If he’s not ok, it’s easy to see; he doesn’t hide it. Whereas there were a lot of times I had to guess what was really going on in my girls’ hearts and minds over the years, I’ve never had to do that with Sawyer. The world needs more honesty like the honesty we get from those on the spectrum.

So yes… we are constantly aware of autism in our family. Every day is Autism Awareness Day for us, and while it can make life challenging, I wouldn’t change it. I have no doubt that God gave us this life because He knew we would love and protect Sawyer, and advocate for him and others like him. This is part of our journey and our purpose.