Editor's note: The above video features an app developed by WSU students that hopes to improve early autism diagnosis
My name is Megan. I am a digital producer and reporter at KREM, a graduate of Gonzaga University, a singer, an avid bookworm, an outdoor enthusiast, a friend, a daughter and a sister. A fiercely loving and protective sister to a brother with autism.
My 23-year-old brother Brandon was diagnosed with autism when he was a toddler. I was very young when my parents first received the diagnosis, so I don’t remember much about those early years. But I do know what my mom has told me about that time.
Brandon’s speech slowly began to regress. He expressed less interest in things he used to enjoy. He became fixated on certain things. He was not the same happy-go-lucky, bouncing baby boy they had welcomed into the world.
Needless to say, my childhood was different than most. My brother was my best friend growing up – and we did a lot together. But our bond was solidified by something different than reminiscing on silly fights, talking about our day-to-day struggles and spending time with mutual friends.
My brother and I grew close through our hugs, our shared love of Hot Wheels, "Barney" and "Blues Clues," and swimming. We grew close as I introduced him to my friends, who he usually communicated with through a gentle touch on the arm or a smile. We grew close as I learned to protect him and advocate for him.
I have shared the story of growing up with my brother many times, often through tears. He is my hero. But I think about it even more when World Autism Awareness Day comes around each year on April 2.
My family’s journey with Brandon has never been easy and, sometimes, it hasn't been positive. People who have cared for him let him fall through the cracks. People have hurt him, both emotionally or physically.
We soon realized that, though Brandon was not “normal” by any means, he would still experience the growing pains of adulthood. He was different from me but the same on a fundamental level: he understood that growing up was hard and processed it in his own way.
My full life story – and my family’s story, along with my brother’s personal history – could fit into a book, so I won’t expand anymore here. But I do want to offer some lessons I have learned from being Brandon’s sister and some advice to those who do not have a family member with a disability.
My brother has taught me compassion – and the cliché phrases you hear as a child: “Don’t judge a book by its cover,” for instance.
It helped me to realize that I could never understand someone’s trials or pain unless I walked a mile in their shoes.
Growing up with my brother gave me a willingness to know others for all that they are, accepting them faults and all. I will admit that this is a hard lesson to learn – and I relearn it every day – but I think about the way I would want people to treat my brother and it helps me adopt this mindset.
Again, it’s cliché. But you really don’t know how much kindness can do for a person. A smile, a compliment, a positive affirmation.
My family has struggled time and time again as they take care of a nearly non-verbal adult. Sometimes, the gestures that have meant the most to my mom and dad are those where someone offered to buy them Subway sandwiches or told them they were doing a great job as parents.
It’s the phone calls to check in or the encouraging text messages that go a long way for our family when we are struggling.
Take it one day at a time
If you love someone with Autism, you know this is one of the most important lessons you learn.
Life can be different every day. Your loved one may experience sensory overload and have a meltdown in the middle of Target. They may pee their pants. They may flap their hands and scream at the grocery store. They may run into the street.
Some days are good and others are tough almost every minute.
That knowledge has helped me adopt this philosophy in my everyday life. Some days are going to be awful but you never have to live that day again. You get up, dress up and show up for the next day and whatever it may throw at you.
Be a voice for the voiceless
My brother has taught me that it’s so important to advocate for others and stand up for those who would otherwise be voiceless.
When I saw the way people often treated my loving, kind and beautiful brother, it made me angry. It made me want to help others living with disabilities.
I volunteered with Gonzaga University Specialized Recreation in college, which pairs adults with disabilities with Gonzaga students to play games or sports, put on a play and develop lasting friendships. I still talk to many of the participants from GUSR, as those relationships in my life are an important piece of who I am.
If my friends from GUSR ever needed my help, I’d be there in a heartbeat.
Advice for those wondering how to approach someone with a disability
I have always wanted to write an exhaustive list of advice for someone who may be scared to approach someone diagnosed with a disability. Here is a short one.
Don’t stare. They are people, just like you and me. They don’t like receiving stares from you as much as you wouldn’t like it. It also makes their families upset and leaves them feeling self-conscious.
Don’t treat them like a child. You don’t need to speak to them in a “baby voice” if they are not a baby. My brother is an adult and, even though I do have to treat him differently in some ways, I try to treat him like one as often as possible.
Do listen. Families need a shoulder to cry on and a judgment-free zone. Finding care for your loved one as they age out of the school system is tough. The guilt of being a family member to someone with a disability is tough. Am I doing enough? Am I failing them?
Most people just need an ear to listen, a hug and a genuine friendship to help carry them through the tough times. That’s what’s helped me the most.
These are only several pieces of advice and I will refrain from giving more for fear of rambling.
If you made it through this, thank you for reading mine and Brandon’s story. I hope this helped shed some light on this World Autism Awareness Day.
Don’t forget to “light it up blue!”