I Am Only The Expert On My Own Autism

I grew up in France and moved to the US when I was 21. Actually, until I was 26, I didn’t know I had autism. 

I’ve always felt different and struggled a lot as a kid, but things didn’t get much more manageable as I grew up. I had a hard time maintaining friendships and doing things that seemed so easy for everyone else, like going to the grocery store — I’ve never liked crowds and loud noises. Anyway, it all started to make sense after my son was diagnosed with autism. I decided to go through a therapeutic assessment to get answers about myself and came out of it with an autism diagnosis at the high-functioning end of the spectrum.

What do you do for a living?

I’m a content creator, author, and photographer for my blog and social media called The Autism Cafe.

What is the difference between awareness and acceptance?

To me, you don’t get acceptance without awareness. Awareness is part of acceptance, the beginning stage where one is educated on what we hope they’ll then accept.

What does it mean to be “only human?”

All of us, without exception, are imperfect, emotional beings. I use this saying a lot when discussing my own experience. I feel like, in too many contexts, we’re not expected to be fully honest or to share our difficulties — we’re expected to smile through it all. It’s okay to be not okay. It’s okay to make mistakes. It’s okay to fail. What do you expect? We’re only human.

How has living with autism helped you parent your children, who are also living with autism?

It helps in some ways and not in others. Dr. Stephen Shore, the first guest on our new podcast, Adulting on the Spectrum, famously said, “if you know one autistic person, then you know one autistic person.” I think that sums it up nicely. Even with this common thread of autism, we autistics have as wide a range of personalities as humans do — a group, of course, of which we’re a part! 

Naturally, I emphasize with autistics’ struggles more on certain things due to my first hand experience. For instance, when Charlie shields his ears from some noise, I can tell which noise it is that’s bothering him — often, a noise that most people subconsciously tune out.

Tell me a bit about the letter you wrote to your son.

I was frustrated. After another assessment came back where Charlie scored in the 1st percentile, my mama-heart was hurting, even though the tests, I know, are necessary. I wanted people to see behind the numbers on that sheet of paper. And if Charlie could one day understand, I wanted him to see past those numbers too.

What advice would you give to those living with autism? 

You are the expert on your own autism. Don’t shut out opposing or uncomfortable views, and don’t forgo traditional therapeutic or psychological means to better understand yourself. Still, ultimately, it’s you who is the expert on your own autism.

What advice would you give to advocates for those living with autism?

For the newly diagnosed, don’t focus solely on verbal language — communication can take so many forms. Ask your child’s therapists about AAC devices (Augmentative & Assisted Communication) and sign language to give two examples. Also, don’t feel guilty for having hard days. Caring for someone who’s limited in their ability to self-care or who can’t communicate even basic needs can be heartbreaking, can be frustrating, and can genuinely drain you. Take care of yourself so you can take care of them. You want to be able to appreciate the small victories when they come, and an elevated perspective like this does not come easy to a worn, frazzled soul.

Why is it so important to have authentic representation of those living with autism?

There are so many of us out there, and many of us can express ourselves and our experiences. I think it’s nice for people to get insights from autistic people themselves. The more we talk about autism and the more genuine it is, the more familiarity, help, and resources will come our way.  Again, it’s difficult to represent everyone because the spectrum is so broad, and so too are the personalities across it. The key, I think, is variety.