The Mighty Logo

Why Parenting Blogs About Autism and Grief Don't Sit Well With Me

The most helpful emails in health
Browse our free newsletters

I am autistic, and I have autistic children — and yes, I get it.

I get that sometimes it can be hard.

I understand that it’s frustrating as a parent not to understand what your child wants, and it can hurt to see your child left out of things by their neurotypical peers.

I used to feel like that. It would sadden me to think that my son couldn’t attend a birthday party without having violent meltdowns and that a simple trip out would prove so problematic.

I’ve noticed on social media recently, there seem to be more and more posts where the parents are lamenting the child they have “lost,” saying autism has taken their joy. That they hate autism and grieve for what their parenthood and their children’s childhood should have been.

They proclaim they are “warrior moms” battling their own children’s autism.

Yet they don’t seem to realize that their children are autistic, that autism isn’t a separate part of their child  it’s not an outside entity that has invaded them.

It’s part of their neurological makeup and affects all that they do, how they react and what they feel.

I can’t say, “Oh I behaved that way because I’m autistic,” or “I’ll just leave my autism to one side for a moment so I can interact more easily.” It doesn’t work that way. I am autistic all the time, happy or sad.

Now I can see how to look at things in a different way: The birthday parties my son couldn’t attend and still cannot would give him sensory overload. Too much noise, crowds of children, bright lights and presents that aren’t for him would have immediately produced a meltdown. No fun for him or the host.

I realized it was myself I was sorry for, not him. For him, it would have meant an overwhelming experience that was unpleasant.

Now we go and see a child a week before the birthday. I discreetly hand over a gift that my son has chosen and he enjoys some time with his friend without lots of other children, singing and overload triggers. There’s nothing wrong with that.

For his own birthday, he has a cake but no candles or singing. It stays cut into slices in the kitchen for him to help himself to. He has his presents wrapped in plain brown paper and he chooses them himself, therefore reducing unexpected surprises and anxiety, as well as no overload with bright colors.

And he’s happy — he’s happy because he’s listened to and he’s comfortable.

The trips out he found hard? Ear defenders for noise sensitivity and a chewy for oral seeking and anxiety. We pick something for him to look for, and if he or my little daughter need to sink to the ground to regulate themselves, I sit right there with them.

I believe these posts and blogs that depict children as missing, lost or to be grieved for do harm. They reinforce the idea that autism is an epidemic, a tragedy and an illness to be recovered from. They show the child as a burden and someone the parent should be pitied for having to raise.

We are not missing, lost, ill, an epidemic or a disease.

Celebrate your autistic children. If they cannot verbalize communication, aid them with signing, picture communication cards, typing or communication apps. There are ways.

Your child is a person in their own right; they have opinions and dreams and should not be written off. Be mindful that what you post on the Internet can and will be found years later. I suggest only posting what you would not mind your child reading about themselves.

Treat them with the respect you would expect to be treated with.

Cherish their neurological difference, and never make them feel “less.”

They are and can be so much more — just believe.

Originally published: August 25, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home