Letter to a young friend with Asperger’s

Hello there,

This is a letter just for you, from your mum’s friend in Canada! (Yes, I’m the one that sent you this piece of music the other day. 🙂 ) You and I have never met — your mum and I started chatting on Twitter a few weeks ago because I have Asperger’s and you do too! (Don’t worry, no one will find out who you are from this letter!)

Anyway, your mum has told me that you sometimes have a hard time with your Asperger’s and I thought maybe I could help with a few things because I’ve been through a lot of it myself.

(The pink flower has Asperger’s!)

Like you, I have a very hard time controlling my temper sometimes (yup, even now as a grownup!). I can be awfully impatient, I sometimes say and do impolite things even when I don’t mean to, and I actually swear quite a bit too! (I know some really bad ones, but I use ’em in private! 😉 )

And, on the positive side,  just like you, I’m very smart (I belong to Mensa, which is an organization for people with a high IQ), and I love music. (There are lots of good things about having Asperger’s, as you’ll find out, although right now it probably feels mostly like it sucks.)

Anyway, every person with Asperger’s is different, just like every person without Asperger’s is different. Every single person on Earth has different talents (some are good at math, some people are great dancers, for example), likes different foods (I like almost everything, but especially pizza, steak, and sushi!), and is bothered by different things (I used to be very scared of spiders, and I have always hated sudden loud noises).

Sometimes getting along with humans can feel impossible.

But the one thing that EVERY person with Asperger’s has in common is trouble getting along with other people. We definitely want to get on, and have friends to hang out with. But Asperger’s can make us act in ways that prevent this, even if we don’t mean to: other people can think we are bossy, or “know-it-all”, or they are scared of our bad tempers.

I don’t know why this is; it just IS, and it can really suck sometimes. Our brains are like super-powerful computers with one malfunctioning program (the “social” one!). I sometimes describe it as “I’m really smart with math, music, languages, and science, but I’m really, REALLY dumb about people.”

It’s true.

For example, I have trouble figuring out if someone is being sarcastic or mean to me. I used to just assume they were being mean, and be mean to THEM, and then of course it would blow up into a fight! 😛 But now I just ask them.

For another example, I have a dreadful temper (that is another common thing with Asperger’s, unfortunately!). But I have learned to know all the “danger signs”, and I excuse myself from the situation before I explode in someone’s face. (I’ll talk more about this in a minute, because it’s super-important.)

Anyway, all this stuff means having Asperger’s can be very lonely, and very, very frustrating. Sometimes having Asperger’s feels like trying to control a crazy, wild, unpredictable horse that’s taking over your whole life.

Asperger’s can feel “out of control” sometimes.

However, it doesn’t always have to be like this, and here’s why: remember that big super-computer brain I mentioned? Well, we can learn to use it to our advantage!

So the “social skills” program  is malfunctioning? Well, that kind of sucks (OK, it sucks big-time) but it’s not the end of the world: we can use the rest of our giant super-intelligent brain to build ourselves a “social skills” program. That’s what I did, and that’s what most successful people with Asperger’s have learned to do.

It’s a lot of work because we have to figure out, step by step, how to do the things that the “normal people” seem to do without any effort at all. But it’s definitely not impossible: we do it by watching them closely, and seeing what sorts of things they do that work best, and then copying those things. (Your mum tells me you’re an excellent mimic: this will be a HUGE help!)

For example, when I started my first job, my social skills were not very good. So I spent a lot of time quietly observing the girl who sat next to me — boy, was she ever good at getting along with the boss and the other people in the office. She was calm and polite and quite businesslike. And after a while, I started to just do what she did, even copying her tone of voice — and to my astonishment, it WORKED. Even though I felt like a big phony at first, people started treating me differently and trusted me more. And then acting that way just felt normal after a while.

You can also learn to use your big giant mega-brain to help with things like your temper. I did it too — it takes a little more work because sometimes that temper just comes roaring up from nowhere, right? And once it’s started, sometimes there’s no stopping it.

Uh oh — here comes a meltdown!

So… your mission is to try and remember what you feel like just before that huge “temper volcano” starts. You might be able to remember now, or you might want to start recording your data around the time of the next “explosion”.

For example, Are you bored? Is there a noise bugging you? Is someone asking you to do something you’d rather not?

After you’ve gathered data from a few explosions, you might notice a pattern and some clues. For me, I noticed that I get a weird feeling just under my ribs, like being very nervous and scared. My teeth clench a little bit and the muscles in my legs feel tight.  (Everyone’s “Danger Signals” are different!)

And for me that means “Red alert!” I get up from what I’m doing and go somewhere else. Sometimes just moving around to a new spot helps to stop the volcano. Maybe I’ll go out for a walk (there’s a nice path by a river that I like). And usually I feel better after. Not perfect, but better.

But if the meltdown can’t be stopped, I go somewhere private and safe.  I don’t want to smash my computer or terrify my cat or hurt myself, or embarrass myself in front of my friends and family. (I used to smash my head with my fists: not smart. You can get a concussion that way. 😦 ) Now I smash my leg with my fist (leg muscles are strong), swear, clench my teeth, and jump up and down.

Meltdowns are (unfortunately) one of the Asperger behaviours I will always have. But now I can control them better.

Anyway, I know that right now you are probably feeling like Asperger’s is the crappiest thing in the world. Partly that’s true. It can be especially hard for kids because your brains are still growing and changing and adjusting.

Hmmm…I must gather my data….

But the bottom line is, you’re pretty much stuck with it. Just like someone who’s born with diabetes, or no legs, or who is blind. (One of my best friends, Jim, is blind, and he is really funny. I wish I could introduce you to him!) Sure, they’re probably mad about it sometimes. But after a while they realize that being mad about it all the time is kind of pointless, and they start figuring out how to just live with it.

Asperger’s is like that: you CAN learn to live with it. And other people will help you. Like your mum, and like me. 🙂

It does get better: lots of us have grown up with Asperger’s and learned to focus on what’s good about it, and fight against the bad stuff. It’s very hard work sometimes, and you will have bad days and mishaps like everyone else. But you’re smart and stubborn 🙂 and you CAN do it.

Have a look at this list of famous people with Asperger’s Syndrome and you’ll see what I’m talking about: click here for the list.

Well, it’s time for me to sign off now and do some work, but I really wanted to write this for you because I think it’s really important for us “Aspergians” to stick together and help each other. Your mum knows how to get in touch with me if you have more questions.

So hang in there, my friend. Use that giant brain of yours to find out more about Asperger’s (there is LOADS of information out there in books, TV shows, movies etc.). Learn how to ask people for help — my blind friend Jim asks people to read the menu for him in restaurants, for example, and it’s no big deal. Lots of people know about Asperger’s now and most people will be forgiving and patient and helpful with you if you give them a chance.

And I guarantee that after a while this won’t seem so weird or horrible. Asperger’s is just part of who you are, and who I am, and one of the many, many ways of being a human.

It will get better, my young friend, and you are not alone. Don’t ever forget that.

Your friend,

J.

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7 thoughts on “Letter to a young friend with Asperger’s

  1. Oh wow, that is beautiful! I am going to share this with my wonderful almost 9yo aspie daughter. Thankyou for writing it 🙂

    • Thank you for that — the letter was actually written to a girl who is 9, coincidentally! I really hope it helps, and that your daughter is doing OK. It’s so hard for children b/c their brains are growing & changing every second, no?
      Best,
      Asparagus Girl. :o)

      • My daughter is doing great, we homeschool, so she is pretty chilled…but 9 seems to be a time of great brain change (more so than any other time up till now anyway!) and while I can help her with some things (I am an undiagnosed adult Aspie), we arent alike enough for me to know how to help with everything. I am loving your blog. Thankyou so much 🙂

      • So glad you & your daughter have found what works — I think a lot of young Aspergians are home-schooled & it does seem to be ideal for some kids! (especially if they have Aspergian parents 😉 ) I was put in the gifted classes when I was 9 and it was a godsend. I was a quiet, obedient kid (seriously) (strict family…) but the gifted classes let me put my brain in gear & let ‘er rip! And I think it was loaded with Aspergians (no great coincidence there!).

        Are you on Twitter? That’s where I meet a lot of Aspergians — it’s a good little community & I find now I check Twitter on my iPhone before I even get out of bed in the morning. 😀 I’m @AsparagusGirl if you’re on it.

        Cheers,
        A.G.

      • I’m not on twitter, facebook is enough, but if I ever get there… I will look you up 🙂 thanks!

    • Oddly enough, so do I. At least things are changing slowly now for kids with Asperger’s. Thanks for reading. 🙂

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