What is life really like on the spectrum? Sometimes I think the key to a happy life, when we’ve been diagnosed with something like autism spectrum disorder, is more about how we manage our expectations than anything else.
When I was a child I remember sitting in the back of a car with a classmate, we were about 8 I think and both of us outsiders. I think, even though we were never friends, we found some solace and support in that we were both bullied at school, and I will never forget how he would sometimes act as the class jester to get the teachers attention away from punishing me and focus on him. He was the second protector I had in my life, but because of how he always made a fool of himself I will call him Mr. Jester. I like sound of that. I remember sitting in that car and dreaming about a different life with him, and he was as hopeful of what the future held as I was.
You see, work has always been my life. I love to work. I am not like most people, I think. Neurotypicals tend to need people in their life and want to work. I am quite the opposite. I need work and I want people in my life.
I don’t need social interaction, but that doesn’t mean I don’t want it – I do. It’s just not something I need. I could live life all alone if I was able to sit down and write every day, work in the garden and cook and read. I would prefer to have people in my life, but they are not a necessity. Work is what gives my life purpose and meaning. I need it, even though I sometimes struggle against it. I think I’m afraid to be pulled in and never be able to let go anymore.
So, when I was sat in the back of that car with Mr. Jester, me on the left and him on the right, we were dreaming of a better and different future. We had both not had the best of luck with friendships, so we never talked about people. We talked about work. We mentioned all the things we wanted to grow up and do – it didn’t matter if we wanted to both dig up dinosaur bones and simultaneously travel to the moon. We could do anything, and we wanted to do it all.
I believed that for a very long time. I thought, like most others of my generation, that we could be anything we wanted to be. Of course, that’s not true, and yet, people always tell you not to say that. They say silly things like: ‘It’s never too late.’ or ‘Never give up on your dream!’
They keep forgetting one rather important fact – sometimes, what we want is not really who we are.
Not just because we have a diagnosis, but because we sometimes get a little confused as to who we really are. In fact, I would argue, most of us never really find out who we are. That might be because we stop trying to figure it out, and just do what we can to be as comfortable as we can be.
We’ve all tried this. We want something really bad and think that our lives will be greater because of it. Then, when we get it, it doesn’t change anything or maybe we even realise we don’t want it now that we have it. The fact still remains, that we wanted it desperately, thinking it would make a difference, right up until that moment when we get it. What then?
People react like I’m some kind of pessimist or that I must be depressed when I say that we can get too old to do something we want and that there are times when we have to give up on a dream. They somehow understand it like I am saying we should never try and go after what we want, but that is not what I am saying at all.
I’m saying, if you want something, go get it now, because if you don’t it might be too late.
If it’s not worth getting now, then it probably won’t ever really be worth it. If you can’t get it now, do all that you can to work towards it until you get it. Start right now, not tomorrow or some other more comfortable day to begin, do it now, because tomorrow might be too late.
I have wanted things I no longer want. I want things I can never get. I have dreams that will never come true. This doesn’t make me sad, not now. This isn’t the same thing as saying none of my dreams will ever come true and it should never be interpreted as such. It means I will fight so much harder to make the dreams that are still possible come true. I have to let some dreams go, because I can’t do everything at once. When we were in that car, Mr. Jester and me, we thought we could be archaeologists and palaeontologists and still travel the universe in a spaceship, but since I don’t have access to a TARDIS, I think probably only one of those is possible right at this moment. Although, I won’t tell you which one to choose.
Of course, I will never really let go of my dream of being an archaeologist in space, however illogical that dream was, because it was and always will be my first ever dream – a dream I thought possible and I will treasure the memory of that car ride forever. All children grow up, however, and sometimes bad things colour our dreams and makes them seem like nightmares instead. That’s what happened to me.
Nightmares so dark that we don’t see them for what they are. Nightmares. We forget that dreams can be good and we hide away behind masks. I chose to hide in the darkness, because I thought I was safe there. It was silly and because of that choice, I ended up with a degree that I didn’t want.
I don’t know how life happened this way, but I made so many bad choices I forgot I even had dreams to chase at all.
Now, I’m at a point in life when I am starting to remember those dreams again. I smile when I think about that little girl, the girl who thought life would be beautiful once she got out of her hellish school years because she still believed in dreams. She also makes me sad, because she doesn’t exist now. She died a long time ago.
The problem with dreams is that they create expectations. Expectations are impossible to meet, but not impossible to exceed.
We all have to manage our expectations, whether it be expectations in romantic relationships, work, friendships or even in ourselves. Living on the spectrum means we sometimes have to manage things in different ways than neurotypicals do.
You see, even though some of us knows that we are different, we dream of our future and have hopes and expectations about work and love and friendship, just like everyone else. Only difference is, we can’t do what others can, not just because we are different, but because a lot of people don’t believe that we can.
How are we supposed to believe in ourselves when everyone tells us two opposing ideas? They say we can become whatever we want, and yet even if we get a degree and excel at what we do, no one will hire us because of whatever label we have been given?
I have a masters degree, granted not in a field I ever dreamt of being in, but life just happened and while I was struggling to blend in, time passed. In spite of my degree I’ve been unemployed for more than two years and I can’t even get hired doing jobs that doesn’t require a degree.
I don’t do well in interviews and I don’t do well when selling myself. I always try not to sound arrogant, because I do that quite easily and unintended, but that means I often come off as uncertain as to my skills and abilities. I also don’t exaggerate, I am completely honest when I explain what I can and cannot do. I have a lot of issues that most people don’t have, but I can do things beyond what most people do too. People tend to focus on what I can’t do and forget what I can do.
My expectations were more a hindrance than anything else, I’m afraid. I expected too much of life, perhaps.
When we live on the spectrum, we have expectations like everyone else. On or off the spectrum, expectations are a part of life. I had expectations before I was diagnosed, and now that I have been diagnosed a long time, I have a different set of expectations as well as those I had before.
I’ve had to let go of my expectations about my life in many ways, even though I was not able to let fully go of it all. I know I have to let go of a lot more one of these days. If not today, perhaps tomorrow. If I could let go of it all now, I would, but it feels like tearing of part of myself off– it’s part of my identity. When I let go of it I will no longer be who I am now, but someone else. I do what I can, but I’m not ready to let go of all of it yet.
What do we do when we can’t let go of the expectations we have? The dreams, no longer possible, and the emptiness they leave behind? We do the only thing we can – we manage our expectations.
There it is. This is why I feel like my life these days is more about managing my expectations than it is about finding a way towards happiness, even though many people are trying to convince me it isn’t. I don’t really understand why we can’t just stop pretending we live in a magical kingdom of fairies and knights in shining armours and start living the life that we actually have. Sure, we all need to dream, even if they sometimes turn to nightmares. But, we can’t get lost in there, that’s not healthy either.
Some things are not possible, and that has to be okay.
It’s because some things in life is not possible that we should fight for what is. We have to give up on things too, because we have to make a choice to fight for what we want. Giving up on something that we want in pursuit of something we want more is not a bad thing. It means we have even more of a reason to fight for what we want.
We manage our expectations, because until we let them go entirely, that’s all we can do. Best thing would be to not have any expectations at all and just fight for what we want without needing it to unfold in a particular way, shape or form. That way, we remove the limitations we put on our imagination and mind. Because, that’s kinda what expectations is, right? Self-enforced limitations on how we want things to be.
Remember, expectations cannot be met, but they can be exceeded, if we let it happen.