Dear
Fellow Sibling of an Autistic Person,
Let’s just be real here. People say
they understand and know what it is like, but they don’t. They just don’t. It’s
not their fault, it’s just that you don’t even begin to understand it unless it
is your day to day reality. The “it” sounds so ominous, so mysterious, so
foreboding. But really, it’s a seemingly simple concept. Your sibling has
autism. Seemingly simple, but in
reality, a whirlwind.
Living with an autistic sibling is a constant
rollercoaster of ups and downs. Of course, you know this better than anyone.
You are an unsung hero. When people come to school and complain about how they
fought with their siblings, you mostly sit quietly. It’s not worth telling them
that last night while they were arguing, you taught your ten-year-old sister
how to hold a fork correctly, or I taught my 15-year-old brother how to have a
conversation.
People ask what
it is like to have an autistic sibling, but you can never describe it. In fact,
what even is autism? Yes, it is a “disorder” where the brain functions
differently, but we know it is more than that. Every autistic kid is extremely
different, and it seems wrong to label all of these unique people with a
simple, one-word term. Autism relates to the very core of a person and affects
every aspect of their life. Communication is not guaranteed. The only
guaranteed aspect of autism is that life won’t be “normal”. Maybe your sibling
functions incredibly and goes to a normal school, or maybe they are nonverbal
and can never be independent. This entire spectrum is covered under one simple
word. Autism. How can one word justify all that come[JP1] s with it? The good days, the not so great days, the
strengths, the weaknesses. It is incredible how one “disorder” can be so
varied. Every human being with autism has different strengths. No two are the
same. Some have lightning fast brains that can do any math equation, while some
can memorize anything they read or see. Some have excellent communication
skills, while others are living in a fast world all inside of their head and
may never form sentences. The brain of an autistic person is a mystery I will
never understand. Always moving, never stopping. When I think about what is
going on inside their heads, I imagine it is like every subway train in New
York City going full speed ahead and never stopping. It is incredible!
Being able to create small talk and have a normal
conversation is most definitely a given for everybody, right? Wrong. Social
skills are arguably the some of the hardest concepts for autistic people to
gain, and the hardest things for me to not stress about[JP2] when it comes to my brother. Sometimes it is
unfathomable how these people don’t understand how to talk to people, or why
certain things aren’t ok to say around certain people. Their awkwardness and
obliviousness seem to rule them as they try to interact with other humans, but
they push through these challenges with an open mind. It is hard to explain to
them how or why social situations don’t always work out for them, or why people
are mean to them, but you fight to teach your sibling.
You, dear friend, are outstanding. You are a combat
soldier disguised as an innocent kid with a different life. The battles you
have fought and the way you have impacted your sibling has more significance
and makes you more mature than some people your age will ever be. While you are
often the one hiding in the shadows, you are a star. No one, maybe not even
other people with autistic siblings, will understand what you go through on a
day to day basis. The battles we often fight for success are battles that
“normal” people don’t even bat an eye at. You have sat through endless doctor’s
appointments, therapy sessions, and much more for your sibling. There are so many times when your sibling is
having a total freak-out, melt-down session, but you stay calm and put their
needs above your own, even if you have a certain want or issue. You are a
rock-solid support for your family. The relationship between you and your
sibling is incredibly unique and nothing like any other relationship, and it is
usually up to you to keep it up. Sometimes it doesn’t seem fair. Why do I have
to grow up so fast and focus on mature topics that most kids don’t consider?
Why do I have to sit through at least one appointment almost every week? Why
can’t my sibling just be “normal?” I have definitely asked these questions
before in my life, and you probably have, too. But what I have realized is that
the pros are way bigger than the cons. When my brother can’t understand why
something isn’t socially acceptable, I remind myself how positive he is
compared to most sixteen-year-old boys. There are so many qualities about these
kids that make them amazing. Even if the relationship between you and your
sibling would fall apart if you didn’t manage it, it is totally worth it. You
understand each other on a very deep level. There were times when I was younger
where I was the only person who could calm my brother down when he was having a
melt-down. And although tensions may grow as you grow older, the amount of love
between the two of you will never weaken or subside.
A lot of times, we focus on how our siblings could
improve, but we have some room to grow too. We definitely aren’t born ready to
be a totally perfect sibling to an autistic kid. For example, I often hold on
too tight. I would do anything for my brother, and I’m sure you feel the same
way. This isn’t a bad thing, but I can be enormously overprotective. I, like
you, want my brother to be accepted almost more than anything in the world.
Because of this, I always stress about things he says or does that might put
people off and make them think he’s weird. If something like that happens, I
spaz and freak out, and then we both get frustrated. I need to improve on this,
and I am sure there are other areas for me and you to improve in our
relationship with our sibling as well. On the other hand, it is not always bad
to be protective over your siblings. I am not a violent person, but if you are
a jerk to or about my brother, I will shamelessly make you pay.
Please take a minute to notice the placement of
quotations in this letter. “Disorder.” Yes, having autism[JP3] is not a perfect situation. But it is entirely
untruthful to say that it is a horrible, horrible[JP4] circumstance. Your sibling has incredible traits that
most people don’t have. They overflow with love and extreme kindness for you,
even though their ways of showing it may be interesting to say the least.
Autism is often a word that makes people furrow their brow and get concerned,
but it shouldn’t be that way! Autism has given these people so much. Life is so
much better when you stop seeing autism as a disorder and start seeing it as an
opportunity. It is an opportunity for your sibling to be unique and
outstanding, and it is an opportunity for you to step up and be the best
sibling and best version of yourself you can be. Though days can seem very
hard, keep fighting. Sometimes, it feels like the last thing you need is for
your sibling to not understand something or be totally oblivious to their
social faux pas. But nonetheless, keep fighting for them. They love you so
much, and I know for a fact you love them.
Another word in
quotation marks: normal. I hate the word normal. It is some vague goal everyone
wants to reach, but no one could actually tell you what it is. People can never
decide what this “normal” is, but we know for a fact what “normal” is not. To
society, a prime example of “not normal” is a person with autism. Well of
course they aren’t “normal,” but that is why they are perfect. In my opinion,
nobody should ever reach for normal, especially not when you have an autistic
sibling. Embrace the quirkiness that makes you, well, you! Love it! Never run
from it. You have been blessed with having an autistic sibling. It is a
privilege, but[JP5] it is not easy. Yet while it is not easy, it is so worth
the journey.
I salute you.
Sincerely,
Madeline Plunk
