A Sister’s Perspective


I first met Amanda Ezechi in the fifth grade, when our assigned seats found us next to each other. A friendship quickly developed, and we have remained close ever since. When I first chose to write about autism, I instantly thought of Austin, Amanda’s 18-year-old brother. Austin is autistic, and I have had the pleasure of watching him develop over the years. To shed light on how autism affects more than just the diagnosed individual, Amanda opened up about her brother’s disorder, and the impact it has had on her life.

The Humanology Project: How old were you when you found out Austin had autism? What was that like?

Amanda Ezechi: I was about five years old when Austin was diagnosed with severe autism. He was two-years-old. I don’t really remember how I felt when I first found out. I don’t think his diagnosis had as much of an immediate impact on me as it did my parents. I do remember, quite clearly, the moment I was told that Austin would have to switch schools. My favorite part of the day in preschool was always going downstairs to visit my brother and his nursery class. My teachers let me do it because I would cry until they took me to see him. I think my first experience of heartbreak was learning that I wouldn’t be able to visit him during the school day anymore.

THP: Could you describe some of the therapy Austin has received throughout his life?

AE: My brother was immediately enrolled in the Developmental Disabilities Institute (DDI). DDI is a special school for children on the autism spectrum up until the age of twenty-one. During his first few years at DDI, he was learning a lot of the same things you’d imagine any child his age would be learning in school like reading, forming sentences, and writing. At the same time, was also learning some of the basic skills that typical children would pickup outside of the classroom, like folding clothes, putting food away, and using the bathroom. We were also teaching him a lot of these things at home, but children with autism require a lot more repetition in order to master certain skills.

Austin also started One-to-One Applied Behavioral Analysis, which is an early intervention program specifically for children with autism. A teacher would come to our house and work with my brother for about two hours. The point of this home therapy was to apply what he was learning in school to a home setting.

THP: As you’ve watched Austin grow up, what would you say his biggest challenge has been?

AE: I think my brother’s greatest challenge, and also the most devastating one, is communicating what is bothering him. My brother is generally a very happy kid. He’s extremely expressive; we always know when he is excited, having fun, or even simply pleased with his food. We can also tell when he’s upset, scared, or annoyed. The problem was that it was always difficult for him to tell us the source of his frustration or sadness. He is nonverbal, so abstract or complex feelings were nearly impossible for him to communicate.  [Communicating his frustration] has improved as he’s grown older, and as we’ve gotten used to his way of expressing his emotions.

Sometimes it’s difficult for him to express sadness about a particular situation. After I moved away for college, Austin would walk into my bedroom at home and just sit on my bed sulking, sometimes even crying. At first, no one made the connection as to why he was doing this, but eventually my parents realized it was because he missed me. Now whenever he does this, they call me so I can talk to him on the phone. He’s always happy to hear my voice, but I know it frustrates him that he can’t properly communicate why he is upset in the first place.

THP: Were you ever concerned about how other people would treat your brother because of his disorder?

AE: When he was first diagnosed, I didn’t understand that there was the possibility that he could be treated differently until I watched it happen. I was so young when he was diagnosed, I remember my biggest concern was whether or not we’d be able to play together the way I saw my school friends play with their siblings. My brother was not socializing the same way other children his age were when we were younger. I think what made me want to visit him in school so much was the fact that he was always alone and playing by himself. Apparently when I was a kid I attributed this to his “being too cool for the other kids.” I always knew that if people spent at least five minutes with Austin, they’d fall in love with him immediately. I knew that once they got to know him, they would treat him with respect and compassion because that’s how he treats everyone. The real concern for me was that people would use his autism as an excuse to not get to know him.

THP: How was your family impacted by Austin’s diagnosis?

AE: It’s impossible for any family to not be radically transformed after a child is diagnosed with a developmental disability, and I think anyone who says otherwise is lying. We all had our different reactions to my brother’s diagnosis. It’s definitely a test of resilience. There’s always the temptation to wallow in pity or to get lost in denial. I think all of us—my father, mother and I—did our fair share of both. It takes a toll on the family. Every time you reach a milestone, you have to be prepared for the next set of roadblocks.  

Looking back, I really see the detriment of us all not always being on the same page [in regards to] the best way to get past those roadblocks. It’s tough because there is no medication to take for autism and there is no step-by-step guide on how to deal with an autistic child. A lot of it is following your gut instinct, but every decision you make, as rational and pragmatic as it may be, is fueled by emotion—love and fear. Navigating this has been really hard, and we’re still not always on the same page.

THP: Would you say it’s made your family stronger or…

AE: Absolutely. The test of resilience has made us stronger. That sounds so cliché, but it’s honestly so true. There is still the temptation to let the pain that comes with [autism] take over. At the same time, I think my family quickly saw that focusing on all the joy my brother brought into our lives was much more fruitful. I’m not saying that we decided to just look on the bright side and ignore the negatives, because you can’t. You really need to look at the reality of the situation in its totality in order to move forward. We just realized that when we looked at the reality of the situation, we were beyond lucky to have Austin in our lives.

THP: What is your favorite memory with Austin?

AE: My parents love music, so there was always music playing in our house. They used music to teach us everything. We listened to and sang along to every genre. I think Motown is Austin’s favorite genre. My proudest childhood accomplishment was getting him to dance and sing along to every Jonas Brother song with me, much to my parents’ dismay. My brother and I were singing songs before we were talking and this was so important for our relationship.

My brother has a phenomenal memory when it comes to music. He can reproduce any song after hearing it once. This would actually sometimes frustrate me because I would take lessons to be able to do what he could do, and he was just born with this ability. We used to play this game where I would start to hum any song, and I would honestly pick the most obscure songs, and after one line he would finish the verse. We would run around the house playing this game; he absolutely loved it. We still play it to this day.

THP: Autism is increasingly more common, and yet, people may not know much about the disorder. What is the one thing you want people to know about autism?

AE: I think I’ve learned more about life and humanity from my brother than anyone else. My brother has this overwhelming desire to welcome and love everyone he meets. I think I can speak for my whole family, and anyone who has had the pleasure of knowing Austin, when I say that his joy and compassion forces you to reciprocate and pass it on. I’ve been lucky enough to work with other children at DDI over the years, and each of them have taught me to pay more attention to the simple beauties of life. My brother looks at everything with wonder. In his eyes, everything has the potential to be magical. Children with autism still have a certain innocence about them. Growing up around that outlook transforms your perspective of the world, so long as you let it. Perhaps this sounds idealistic, maybe even borderline utopian, but I sincerely believe that people would be monumentally happier, and the world significantly better, if everyone could learn to look at life the way children with autism do.

 

This interview has been edited and condensed.


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