We Need to Listen to -- and Believe -- Our Autistic Loved Ones

So you’ve started dating a girl with autism? So you just found out your son is on the autism spectrum? So you learned all of those times you felt stranded in a world that doesn’t make sense had to do with your “not-so-typical” brain?

You’re lucky you ran into me!

My mom, my brothers, some of my sons and a few of my friends all landed in various places on this broad spectrum.

You are lucky. I’m guessing you know this, but I want to reiterate it anyway. I, myself, took too long to understand it.

The world needs us to have the kinds of conversations that are encouraged by the challenges of autism. I don’t mean to glorify or belittle or romanticize the challenges; they are real and they are hard. But almost all of them are the result of a society that is uncomfortable with “chaos” and “inconvenience.” Only a few of them are actually because of autism itself.

Sadly, I didn’t know this. I assumed my mom and my brothers were asking too
much of themselves and the world, and that the world (when telling them
to stop being themselves) must be right. After all, there is so much more of the world than us! How could it be wrong?

But I had children, and they stimmed, pulled away from certain types of touch, remained nonverbal for a long time.

By the time I was a mom, my brothers had already proven the ever-doubting
world and me wrong, time and time again. My mom had patiently showed me, taught me, believed in me until I learned to know in what ways I was wrong. By the time I was a mom I was ready to step up and explain things to the world.

I started by admitting my own cruelties. That was sometimes hard but always easier than justifying and defending them. Then, I asked the people I love what was going on in their minds and — this is key — I believed them. When my mom and brothers used to try to tell me about their experiences, I mostly entertained them with nods and pats on the head. Secretly I thought they were being dramatic, not trying hard enough or just plain not smart enough to make sense. I could give you specific examples (I have many!) but suffice it to say, I was “nice” on the surface and saw them as “other” on the inside.

But my sons? I couldn’t do it. I had to believe in them and be interested in them and truly listen when they told me things. Whether they communicated by moving away or toward things, or eventually with words.

Because the world looks, smells, feels and tastes different to everyone, and especially for our autistic loved ones, it’s important to trust them to tell us how they feel, what they see, who they are, what they think. It can be hard to understand (my one brother used to complain about all the “poo flakes” flying at him when I asked about his flinching, and my other brother doesn’t have much language so I’ve learned to listen to his energy and motions), but it’s more than worth it. We all become better people when we learn to do this everywhere in our lives.

Because of my brothers, and especially because of my mom (who adopted my wonderful brothers despite everyone telling her they were unlovable), my life is better and my eyes are open in beautiful ways. I’m kinder, smarter and busier sharing wonderful things instead of hiding away from possibilities.

I’ve learned to listen when people take the time to share their experiences, and to believe them. Sounds simple and obvious, right? Yet pay attention. Most of us assume we know what other people should feel, we challenge their experiences by telling them, “That’s not right, that’s not what it is.” We do this easily and consistently, and it’s dangerous and sad.

So you’re lucky you ran into me! Take a deep breath, and when the world looks at you or your son or your girlfriend or the neighbor girl with judgments, anger or pity, try to respond with a kindness and a teaching. Not always, but when you can. I’ve learned to do this (for the most part), and it’s been enlightening! Often people shift when I’m willing to smile and offer a kindness. And when they don’t, I go ahead and give them the benefit of the doubt. Perhaps they thought about it later and will be less judgmental next time. Goodness knows I’ve gone home and thought about things only to grow kinder for the next person!

The weight of the world is not on your shoulders entirely, new friend, so don’t feel obligated to always take the time to teach or encourage a thoughtful reaction, but you have been gifted with a unique opportunity. Take advantage of it in creative and comfortable ways!

You’re new to autism, which means you’ll be interested and curious to learn from others. That’s great! Please know: The professionals will try to be helpful, but listen first to your autistic loved one. The professionals are lovely but not always right. And when they are right, when they do believe in unlimited possibilities and putting the goals and motivators of the autistic individual first, when they do prove their ideas and actions are effective and kind, hold onto them and learn with them. Those gems of support are your best bling.

While you’re here and we’re chit chatting, I want badly to tell you about all the things my mom does that can help. I want to tell you about my book that is a collection of stories starring parenting and autism. I want to tell you to hire my mom, watch her shows, read her books.

And here’s the thing: So many of us are going to tell you that. You will meet so many wonderful well meaning people with the perfect book, the perfect therapy, the perfect vitamin, the perfect-whatever. I suggest you listen to them because they have experience, and you don’t need to figure it all out alone. But always, always, always take time away from their opinions to think about how it resonates for you and your family.

Your beliefs. Your girlfriend. Your son. Your neighbor.

And also, friend, take the time to consider what beliefs or motivators you might have that are, in your own way, hurting your chances for a valuable and successful experience.

It will surprise you sometimes. We are creatures of our environment, and the environment is imperfect. That’s OK, because we are also creatures of power, and you can make changes. Invest in your happiness and agency.

My brothers are now my friends. My sons are my treasures. My mom is my mentor and kindred spirit. My life is diverse and unpredictable and filled with magic and miracles!

Because of my struggles with society and self, I’m able to share these learnings with you and hopefully save you some hardship. I’m able to explore my mistakes and see they are indeed valuable.

I see that it’s also me who’s lucky.

I’m lucky I ran into you.

Thank you, friend, for exploring our luck with me.

The Mighty is asking the following: What is the best advice your mom gave you while growing up with a disease, disability or mental illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.