- the ignorance of autism,
- the lack of understanding, and
- the sheer frankness of some of the comments and questions people have for me.
I often agree to guest lecture for courses and always accept questions from my fellow students. I am happy to help out.
However, I have heard some of the following statements and hope people never ask or say these things to me because they make me feel hurt and confused. They just seem like the wrong thing to say to anyone with a disability or challenge. It might just be me nitpicking and being sick of some of the same comments, I don’t know, but it doesn’t change the fact I get uncomfortable and come home with emotional backlash and waves of confusion and pain.
1) “You don’t look autistic!” or “You don’t look like something’s wrong with you.”
You’re right, I look like a person out of a textbook – or your best friend – or the girl next door. I have all my body parts, and as you know, autism is not a physical disability. Do you want to count my fingers and toes? And, what does autism “look” like to you? I am just a fellow human being living my life. As far as “wrong”, nothing is “wrong” with me, I just have a different set of abilities and challenges than you do. I am unique.
2) “You know, you’re going to get into college/grad school/etc. because you have a disability” or “How did you get into the University of Florida?”
I have heard variations of this statement since I was a high school sophomore and even now as a college senior. The first time I heard this statement, I was outside of my locker before a college fair at school when a friend said to me, “You’re going to get into college because you have a disability. You could’ve been born a vegetable for all they care, and you’ll still get in because of that”.
I could not have been more offended – I have worked hard to get into that private high school. I worked just as hard to get into college, and am working hard for whatever my next journey post-grad is.
To the student in the class when I guest lectured who asked how I got into the University of Florida – I got in the same way you did. I took the same standardized tests, filled out the same application, wrote a resume, and wrote a good essay. I’m glad that universities had the integrity to not “bend the rules” and had accepted me based on merit and my own accomplishments.
3) “So, you have temper tantrums like a little kid. Grow up!”
The difference between autism meltdowns and temper tantrums: we can’t control ours while some neurotypical little kiddos may know how to use them to manipulate people. It is a physical response to sensory overload or anxiety. My body physically fights off the input from the world around me, and when it gets tired of all the input, it manifests into crying, shaking, or trying to control it with my own output. It is NOT my fault, and it doesn’t make me a toddler, so do not treat me as such. In a previous article, I described having a sensory meltdown more like being allergic to a food than simply disliking it – I physically can’t handle it after a certain period of time.
4) “I would never know if you didn’t tell us since you seem pretty normal.”
Here’s the best way I describe this normal sounding thing as far as being social goes:
Imagine you are a foreigner who moved to America and you’re learning English as a second language. Even after you live in America for most of your life, you still have an accent from your home country and will never be a native English speaker. Except for me, I’m not learning English, I’m learning social cues and interactions, and the accent is instead seen as misunderstanding, taking more time to process things, and some awkwardness. Just because you don’t hear my accent doesn’t mean that typical-social is my native language, because it isn’t. And of course I’m “normal” in a lot of senses – I have varied interests, smile a lot, take pleasure in the little things, have a family that loves me, and a life to live like most people I know.
5) “My friend’s brother’s cousin has Autism too”
How does this affect me? Are you trying to gain my sympathy or compare me to someone I’ll never meet? Do we even know each other? I guess I appreciate you making this connection. If you’re looking for my advice to best handle this person, I really am not much help. I am not a professional, I don’t know this person, and I cannot speak for anyone but myself at this point. Please don’t ask if XYZ therapy or a special diet works because I honestly don’t have the answers – like I said, I can only speak for myself and I am not a professional.
Hopefully, you’ve picked up some tips on what NOT to say to someone with a disability or autism, because all of these things are either wrong, confusing, or make no sense. And, before you ask, no, I am not like Rain Man.
Just remember to treat anyone – especially people with autism or other Isms, with kindness, respect, and ask sincere questions that will heighten your understanding rather than come off as humiliating, or undermining my very real challenges.