It’s World Autism Day (okay, it’s a few days past, but it was when I wrote this), so let’s talk about the World of Autism. The real one – the secret world of autism that not many people see. As an autism parent, this is the world I live in.

The Blue-Washing Of Autism

I’ve written before about my mixed feelings regarding Autism Awareness in April and the Light It Up Blue campaign (here and here). I love to celebrate my child but I will never celebrate autism. The white-washing (or blue-washing) of autism has always been around, but it seems lately to have gotten particularly bad. It is one thing to view autism as simply a brain working differently, but it is another to shame and vilify we parents who actively seek to address the medical issues and minimize the struggles of our children.

It is because of this and personal experiences like the story below that I feel it necessary to shine that bright blue light on the secret world of autism. So, this April I’ll be sharing a This Is My Autism series of guest posts from autism parents telling their real life stories. {Please check out the guest blogs and the Autism Expert Panel series from previous Aprils!}

Why Do You Need To Know?

Why Can’t Everyone Just Feel Good In April and Celebrate Autism?

One time a few years ago I was at away on a work trip. I mentioned something about how it is difficult to leave because my husband has all the kids and, you know… autism. One of my work friends suggested that maybe my high expectations were just too high.

She didn’t say this with any malice and I know that she meant well. She was giving me what she thought might be helpful advice, from a seasoned mother to a newer mother.

But it still felt like a punch in the stomach.

Christopher was about 5 at this time. He was not potty-trained. He had not uttered a single word since his regression at 14 months of age. Frequently, he would wake up screaming in the middle of the night, rolling around on the floor as though he needed to get out of his own skin, while my husband and I felt completely helpless.

I was exhausted, rarely sleeping through the night and spending days researching his medical issues and driving him around to therapies. I was going broke trying to pay for therapies and supplements and doctors. Both Christopher and I were working so very hard. To have all of that minimized to my too-high expectations was nothing less than crushing.

But I don’t blame her. Why would this friend think otherwise?

Myth Versus Reality – The Secret World Of Autism

The autism on television shows usually features quirky high-functioning kids who just need the world to adjust a little better to their thinking. The news features feel good stories about sports inclusion and schools blowing bubbles for autism.

And we autism parents trudge along pretending everything is fine and trying to look like some version of normal to the outside world. Rarely is that office “How are you?” greeted with, “Well boss, I’m actually doing pretty crappy. My wife and I spent the night scrubbing shit off the walls while our kid banged his head into his headboard until 4am. When I get home I’ll be patching the holes in the wall… again. But at least he hasn’t had a seizure in a few days. My wife just sold her engagement ring to pay for more therapy. Fingers crossed that the bank doesn’t forclose on our house this month! And you?”

And if you’ve read the lovely Welcome to Holland poem, well then you probably think of autism as exactly that – a change in expectations. But that is not the reality for us or for many of those we know here is the real autism world.

The reality is often children is constant pain who are functioning at the level of toddlers. Aggression and meltdowns and seizures. Mothers who give up careers, friends, and any semblance of a normal life to care for their children – forever. Fathers working multiple jobs just to stay afloat. Parents who can’t fathom what will become of their kids when they die. And sometimes, the reality is much darker. Violence and hatred against our children. Master escape artists who wander and drown. Accidental killings by police. Murder and murder-suicides because families can no longer cope.

Great Expectations

I don’t think my expectations are to blame for the difficulties autism has brought to my life. The expectations I held weren’t of a perfect child, an ivy league education, a successful career. They were the hopes of my child having a friend, of hearing him say “I love you,” of knowing his hopes and fears and dreams. In fact, all I’ve ever wanted for my children is for them to be happy, healthy, and kind.

I’m not giving up on those expectations, by the way. I will keep working and fighting for Christopher, no matter how difficult it is. But it would be easier if people understood what autism often really is.

If you really want Autism Awareness this April, I invite you to read the upcoming guest posts in the This Is My Autism series this month. Please take them in with open eyes, an open mind, and an open heart. Take a moment to appreciate what autism families really experience daily. And please take that with you when April is over and the blue lights are off, and offer kindness and compassion going forward. And if someone trusts you enough to open up to you about their secret world of autism, just listen.