As an adult on the autism spectrum, I have been doing advocacy work for quite a while. And there are a lot of things I find myself repeating over and over again, occasionally to the same people. This is a list of some of the things I wish people would remember about me, personally, as someone on the autism spectrum.
1. No two people on the autism spectrum are exactly alike. There is a well-known saying in the autism community: “If you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum.” Each person is unique. This means what might work for me may not actually work for someone else on the spectrum. And what might work for someone else may not work for me.
This also means…
2. Just because one person on the spectrum feels a certain way about a topic doesn’t mean that I feel the same way they do. Perhaps someone on the spectrum has voiced their opinion about how they would rather be accepted for who they are than find a way to prevent autism. Or maybe someone has said that they would rather be called “autistic” than “a person with autism.” I personally don’t always see eye-to-eye with others who are on the spectrum, and feel that some topics aren’t so black or white. So please remember to ask me how I feel before assuming I agree with someone else.
3. I may not always be social, but that doesn’t mean I don’t want to be. I may rarely use the phone. I may not always respond to my texts. And I may struggle to join even a small group of friends in a social activity. This isn’t because I don’t enjoy being social. In fact, I find myself crying tears of joy when I receive an invitation to go somewhere – not because I want to go, but because someone thought of me. And if somehow everything works out and I feel like I can take part, I’m thrilled! So please, don’t forget to include me.
4. Just because I’m able to do something doesn’t always mean it’s easy for me to do. Sure, I can drive a car. But that took years of practice, and I’m limited as to where I can go. I may be able to speak. However, I rarely say things the way I mean to. And forget about understanding what others are trying to get across to me. These are just a few examples. You can give me a small push to try and do things that are difficult, but remember that I do know my limitations as an adult.
Sometimes, I really wish people could walk in my shoes for a day. They might realize just how exhausting life can be for me. I’m not always trying to make excuses. I’m not always just being “lazy.” When I say I’ve had enough, I honestly mean it. I wish more people would respect that and take it seriously. I wish more than ever I could have more energy throughout the day, but I am just not able to. Pushing me too hard will only result in a meltdown.
Which brings us to….
5. A meltdown is just as difficult for me to handle as it is for you to deal with. In fact, when I was younger, it was even more difficult for me to handle because I didn’t know how to cope with it at the time. Now that I’m a bit older, I’ve learned calming strategies. I have a better idea of what will help and what won’t. I really try not to have a meltdown. But when I do, it’s not because I want to. And it’s not something I do to get attention.
6. I don’t mean to be annoying. I’ve apologized for this so much in my lifetime. In fact, I’ve probably annoyed some people by apologizing for being annoying. Sometimes I’m annoying because I don’t realize I am being so. Sometimes it’s because if I don’t say or do something right that second, I will feel like I’m about to explode. I really don’t like that I’m annoying.
7. I am on the spectrum. I know I don’t seem like I am on the spectrum to most people. I don’t fit their usual stereotypes. I make wonderful eye contact. I am very social. I can speak very well. I’m so independent with so many things…but it hasn’t always been this way. It’s taken years of hard work to get to this point, and I’m still working on things you may never know about. Isn’t that what everyone wanted: for me to be able to function (mostly) independently through everyday life?
These are just a few of the things that I wish people would remember about me as an adult on the autism spectrum. I can’t speak for anyone else.