The sweet autistic freedom

The first time I encountered autists must have been in Cambodia.

I was volunteering in an orphanage in Phnom Penh for four months on spring 2007. I've never had much words to descibe the experience: it is like no language was made to tell about things I saw and felt and touched. Most of the kids in the orphanage were disabled or autistic, which of course was the reason they were abandoned on the first place. Caregivers worked 48 hours shifts with minimum wage and had so many kids on their responsibility that they could only take care everyone was fed and dry. Thus kids, who in west would have learned to walk and maybe even talk, were lying on mattresses on the floor day after day until their joints dislocated and the skin on their back started bleeding for rubbing against the mattress.

The first day—or probably the first week—I spent mostly crying. How can people live in such circumstances? How will their life be when they grow up? After a week I, like I guess most of the volunteers, realized that my crying helps nothing. Acting does.

And so I stopped crying. I was trained for a week by the local physiotherapists, and after that started to work with four children individually. One day one of them—a six years old autistic boy with bloody scars on his hand he had bitten in frustration—learnt to walk and started to explore the world. His wavering walk, and his smile, are imprinted in my memory. I did make a change in someone's life.

Some years later I started working as an assistant at a special needs school in Helsinki. I had seen much worse, of course—children who in Cambodia would have been lying on mattresses hitting their head on the floor were in a very different condition in Finland. First of all, they were not abandoned by their parents (and my greatest respect in the world goes undoubtly exactly to their parents). Second, they had been given all the possible help and assistance. They were not (and are not and will never be) like kids at regular schools, but they had had the possibility to grow and develop as themselves, as they are.

Yet my first reaction was emotional. I was standing on the school yard looking at the kids doing the weirdest things, pitying them for not being able to... not being able to... And then, I couldn't quite finish my sentence.

Indeed they do not live a life we easily consider a good life. Indeed they will not achieve certain milestones, learn to read, get friends, fall in love, get a job they like... The list would be endless. But what really stroke me was the realization of the stressless life they lead. While they do not achieve what we often find important, they do not actually care—and, what is even more important, they are not expected to care or to do any of those things.

It's all about expectations. I certainly feel distressed of everything I feel I should accomplish, should achieve, should want to have in life. While it's easy to say that you do not want something that is generally thought desirable—let us say children as it's an easy example—and while it's of course your own choice and (in our society) no-one can actually make you have children against your will, socially it is much more complicated. People who choose not to have children are constantly in a situation where they have to explain their decision, while people who have willingly followed a norm because it suits them, are often socially embraced. The same goes of course with anything slightly out of norm, like having your children too young, not wanting a career, wanting a career instead of a family, wanting a different kind of career, wanting unorthodox relationships, not wanting to be in a relationship... I'm sure everyone could give an example from their own life.

And while I do respect our educational system in many ways, one has to admit that it is full of expectations. There are syllabuses, schedules and norms. And there should be some: it's not like we should all kick others when we don't get what we want or pee in our pants for the joy of it. I just sometimes wonder doesn't our school system raise one mostly to fulfil expectations, and doesn't it encourage us a bit too much to take certain norms given. Why should everyone develop the same speed and be compared to and evaluated against the average speed? Why should we even learn all the same things even as children?

But the thing is that once you've been classified as not valid for this system—that is, invalid—you are free to learn and experience the world on your own speed. In great part autists are liberated from expectations, because it's almost impossible to bend them to do something they really do not want to do. And while ordinary children—or adults—can be persuaded by appealing to some social norms or relations (like not wanting anyone to be angry at you), autists simply just do not care.

As a consequence, my pity suddenly turned from them to myself and everyone else who is not a low-functioning autist. Ah, I thought. What a freedom!

Obviously, the solution wouldn't still be that we would all start behaving like LFA children. Nor would I change my current life to anyone else's. But being sensitive to all kind of expectations, I do wonder if there exists some kind of a middle ground, where we could enjoy all the abilities we have, grow and develop on our own speed without classifications to valids and invalids, learn what we are good at and interested in—and have a minimum pressure in what comes to accomplishing things and following certain social norms. That we would really have a social freedom to choose what we want in life.

I know some people can do that easily, but I also know that I'm not the only one who does not.