7 Things I Wish I Knew About Autism

What I wish I knew as a sister, a daughter and a therapist

Nivee Madan
Family Matters

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My brother graduating from High School

Autism has been a part of my life since the day I was born. Although I did not know that until later in life. My mother and brother are both on the spectrum. My mother grew up in India in the ’70s and ’80s, when there was no such diagnosis. But my grandmother always knew something was different. My brother was not diagnosed until he was 11, because my parents did not know any better. Not until a high school chemistry teacher spoke to me about her child with Autism. That’s when it all clicked and I pushed my parents to investigate my brother’s delays. Here are all the things I wish I knew about Autism growing up, that no one told me.

Be Clear

People who live with autism typically have trouble learning by observation. This was the case with both my mother and brother and most of the clients I have worked with.

Although “Modeling” is a teaching tool therapists use a lot as the least intrusive way to teach, it has its challenges. Directions and expectations must be clear. There were and still are a lot of frustrating moments in my day when I am not clear with my requests for my mom.

For example, today my mom and I went to the store. She said her mask was too loose, I suggested she twists the ear bands and then place them behind her ears to tighten the mask a bit. WRONG. What I should have said was “take off the mask, hold one ear loop, twist towards yourself, and then place it in that position behind your ear. Do the same on the other side.” I know, I know, it sounds like a lot. It is. Some may even need even more specific direction. So be clear.

Talk About Emotions

It’s so easy to take for granted that neurotypical people around you are able to understand your emotions through empathy, experience, linking facial expressions to the tone of voice, linking tone of voice to consequences, and so many other ways we decipher emotions.

Some people who live with Autism find that very difficult. In the case of my brother, he had a hard time understanding “annoyance”. I’m his sister, we’re 7 years apart, I was a teenager when he was a kid, safe to say I was annoyed by him sometimes. He was not able to put together that my facial grimaces and grunts meant that I was annoyed and wanted to be left alone.

So how did I teach him that? Well, we talked about it. I had to use examples of feelings he was familiar with, and try to relate it. He understood what it meant to be tired, and angry. I thought the simplest way to break down annoyance was to land somewhere between anger and tiredness.

We talked about how I felt a little angry sometimes when he came into my room when I was spending time with my friends. I gave the feeling a name, annoyed. I showed him my facial grimaces and expressions to teach him the physical feedback he would receive and when he sees it, he should tie to annoyance.

Later in life, he was able to generalize these expressions from me to other family members, and then to a larger part of society.

Whoever You Thought You Were Going To Be, Throw it Away.

Prior to my brother being born, I was an only child for 7 years. All I wanted was to be a mentor and to have a partner in crime. I idolized being a big sister and I really wanted a sibling to bond with and take care of. I thought I was going to be the most insightful, fun, and coolest big sister ever.

WRONG.

About 2 years into it, I knew something was wrong and different. He was not responding to his name, he exhibited self-injurious behaviors, he had aggressive tantrums and rarely followed directions. Everything I thought I was going to be a big sister or mentor was out the window very quickly.

I went from partner in crime, to caretaker. I went from “Daddy’s Little Girl” to a third parent practically overnight. I wish someone had taught me to rework that schema in my head.

It was a struggle over the next 21 years to reimagine my role in his life. And that’s okay. You don’t have to stick to one role. There were and still are many moments throughout the day, when I’m the third parent, and when I’m just a big sister trying to cover up for him or buying him the next cool thing.

Living with someone with Autism means you have to adapt to their worldview as they learn, sometimes slower than you expect.

You Are Enough.

You are enough. Take a deep breath, you’re killin’ it. Even though it doesn’t seem like it, you’re doing great.

Survivor’s Guilt

This one may apply to siblings more. At least, in my experiences working with families over four years in school settings and home programming, I find that siblings have a great sense of survivor’s guilt. I do too. Every day I think about a time in the future where I might want to live my life independent from my brother. It makes me very sad. I’ve struggled with it for the entire 21 years he’s been a part of my life, if not, my life.

I’m not going to tell you how to shake it off, because I’m no one to dictate your relationship with your loved one. But I tell myself the benefit of my exploration outside of and away from my brother, helps both of us. I get to live my life and enjoy it, and then I get to teach him all the things I learned, just like the mentor I wanted to be. I get to do it and guide him in the same direction and watch him grow too.

While that may be a highly romanticized version of it all, I realize it’s harder in practice. Which is why I also go to therapy.

Go to Therapy

You need an outlet other than your own mind. You have to talk to someone about you. While Autism consumes your life and the life of your loved one, both of you deserve to have an outlet outside of each other.

My relationship with therapy began when I was 15 and in high school. We had licensed therapists in my school, and we were able to visit them during lunch and that is what I did. I’d have lunch with my therapist twice a week. We talked about me. My struggles, my dreams, my hopes, and my life. While a lot of my conversations were centered around my brother and mother, some were not. But both types of conversations were needed.

Thirteen years later, and I still attend therapy regularly. Now it’s only twice a month.

Be Patient

With yourself. Be patient with yourself. Where there is a person, there is an opinion over what, who, when, how, and where you should be doing something. Be patient with yourself. No one knows what to do all of the time.

Even when I was a therapist, we had a team of at least five people to brainstorm a few options to present to parents and then be open to modifying those options consistently. Tap out if you need to tap out. Sometimes it may feel like it’s not possible. But it’s possible. Surround yourself with a team of professionals, supporters, friends, and family.

I personally did not have friends and family that understood or able to help. I had my dad, who worked about 15–16 hours a day. But I always found ways to tap out, even if it was for 30 seconds during a meltdown in the grocery store.

You’re not going to have all the answers, and that’s okay. I don’t have all the answers. But you’ll learn to create the answers. And for that, you have to be patient.

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Nivee Madan
Family Matters

Occasional rule breaker, but avid new rule creator. I have ideas that shoot for the stars, but land on the moon. I write about autism, and career development.