When people find out that my youngest brother has autism and is nonverbal, they often tell me the same anecdote: “Did you know that Albert Einstein didn’t speak until he was four years old?” This story (which has never been proven to be true) used to give me a flicker of hope. Nearly nine years after Josh’s diagnosis, this nugget of information is far more frustrating than helpful.
Josh is 11 years old, and he can’t talk. At some point, his birthday celebrations became bittersweet for me because they marked another year of silence. Josh is not Albert Einstein. He probably will never learn to speak or live on his own. He will not discover the next theory of relativity. He will spend the rest of his time in the public school system in life skills classes for students with special needs, where he will most likely be one of the lowest-functioning students in his grade. As much as I want to put a positive spin on Josh’s autism, I can’t. The reality is it sucks, and though there are days when it sucks less, it will always suck.
When your little brother is diagnosed with autism, you don’t get a handy pamphlet explaining his disorder. Scientists have not found a conclusive cause for autism, and so far, there isn’t a cure. Less severe autism often manifests itself in some quirks, but not in symptoms that impede a person’s ability to lead a normal life. For many high-functioning people on the spectrum, autism feels like a part of their personality or identity. But I don’t consider Josh’s disorder to be a personality trait. I consider it a serious illness that affects the quality of his life. Though higher-functioning people with autism might not want a cure, lower-functioning people like Josh need one. How do you build a relationship with someone who can’t talk? How do you accept the fact that all of the grand plans you made for a child’s life will never happen?
Having a family member with severe special needs leads to a slow grieving process. I had to let go of the Josh I thought I would have, one who I would teach to play soccer and drive to band practice. I couldn’t keep holding onto the Albert Einstein dream of a child who miraculously springs out of bed one day speaking in full sentences. I still don’t know if I’ll ever be able to abandon the plans I once had for my brother, but I do know that I am immensely grateful for the brother I have.
My relationship with Josh doesn’t look like other big sister/little brother narratives. His interests include Taylor Swift music videos, swinging off various high surfaces, and tearing paper into tiny shreds. Mine are more focused on thriller novels, arts and crafts, and documentaries. I can’t throw a frisbee with him, but he does love getting piggyback rides. During the 2016 Olympics, we found a shared passion for women’s swimming; mine because of my love for Katie Ledecky, and Josh’s because of his obsession with water. Josh is unlikely to give me a fist bump or hug, but when he jumps onto my lap or tackles me, I know that he loves me. Can I definitively say that I prefer this silent relationship to the one I’d envisioned having with my baby brother? No, but I’m sure that it’s far more productive to build a connection with Josh as he is.
I can’t speak for people with autism, and I won’t pretend that Josh’s experience is representative of all people with autism. I don’t believe that everyone with autism should be cured or changed, but unfortunately, I will never get to ask my brother if he wants treatment. I can only speak to the experience of a sister who loves her sibling and wants him to have a wonderful life. Most of the time, I don’t want to talk about autism because it makes me uncomfortable. I don’t want people to look at me with pity because I already see that every time I take Josh out in public on a bad day. I don’t want to make Josh’s disorder about myself. If autism is difficult for me, I could never imagine how hard it would be to live in a world where you couldn’t communicate your wants and needs.
I watch Josh, and I try to envision how life feels for him, and I am sad. There are people with autism who are high-functioning and live full, rich, wonderful lives. Josh isn’t one of them. He doesn’t need a fake story about Albert Einstein or a puzzle-piece bumper sticker. He needs treatment from doctors, support from his school, and research about what causes autism. Stop telling me about Einstein and start talking about ways we can make the world better for people on all parts of the autism spectrum.