Näytetään tekstit, joissa on tunniste autism. Näytä kaikki tekstit
Näytetään tekstit, joissa on tunniste autism. Näytä kaikki tekstit

22 lokakuuta 2012

Pyykkikontiaisen tunnustuksia

Useimmat ystäväni tietävät, että lajittelen pyykkini hyvin huolellisesti. Ulospäin siinä on jotakin autistista. Mutta minä tiedän, tietenkin, että se on vain järkevää. Päinvastaisista käsityksistä huolimatta värit sekoittuvat ja lopulta kaikesta tulee harmaata. Harmaata. Epävärejä.

Hedelmä- ja vihannesvaa'an tarralaput irrotan kasviksista heti kassalla, koska minusta se on ärsyttävää puuhaa ja saan hyvää mieltä siitä, ettei sitä tarvitse tehdä enää kotona. Hedelmät otan heti ulos pusseistaan, koska niitä on ärsyttävää kaivaa pusseista silloin kun niitä tarvitsee eikä koskaan tiedä missä pussissa on mitä. En koskaan ripusta tiskirättiä kuivumaan hanan päälle, koska minua ärsyttää, jos vesi valuu sitä koskien lasiin.

Ylipäätään teen ärsyttävät asiat mieluummin heti kuin myöhemmin. Taidan olla aikamoinen ärtiäinen. Mutta sillä tavoin asiat muuttuvat ärsyttävistä omiksi pieniksi jutuikseni.

Näytän helposti autistiselta. Haluaisin sanoa, ettei tämä ole autistista: kaikella toiminnallanihan on syy ja järjestys. Mutta niin autistitkin taitavat ajatella.

Tänään joka tapauksessa rakensin tämän huomattavan tarpeellisen pyykkiviestintäjärjestelmän.

28 toukokuuta 2012

Down boy timeless boy

A seven years old boy with a Down syndrome walked to me a few days ago.

I've been working on weekend camps for autistic and disabled children and youth. Last weekend was his first camp, and his first nightstay outside his home, except at his grandparents. Most children on the camps are autistic, and he, too, had autistic features. He was extremely cute with his slanted eyes and wide smile, very brave, and as many Down children, disarmingly charming.

And, again as most Down children, he was slow. And when I say slow, I mean slow. Often he didn't have much clue of what he was doing, but equally often it was clear that he had a goal he was heading to. It's just that getting there took some time. It could take three minutes to climb inside a car; sometimes it took a couple of minutes to ponder upon if one should choose to drink water or juice.

My first reaction in this kind of situations is always to hurry. Oh my, why does it take this long? We have to be going already. But how to tell that to someone in whose life hurry doesn't exist? He does not speak and understands only simple sentences, simple words. He can use symbols passively: in hearing and when shown pictures designed for wordless communication, or manual signs. (Signs used by deaf people have been adopted to people with difficulties in communication so that they are used together with speech. Often Down children who cannot speak learn to actively use a limited number of manual signs or pictures.) Yet, any symbol for 'hurry' is not likely to ever be among the signs he understands. In his world, there will never be hurrying.

I don't claim to understand how his mind works (anymore than the mind of that autistic boy who escapes from his assistant only to run to the toilet to drink liquid soap). But I did have a lot of time to wonder about it when I was waiting for him to finish whatever he was doing.

One feature common with almost all the Down kids I've encountered is that they trust the world around them. They don't seem to doubt at all that their basic needs will be satisfied. Again, they almost never hide their feelings: be they happy or bored or sad, they are sure to express it. And when they are determined to something, they go for it.

Oh, I like these children. They have taught me many important lessons of happiness.

What this very boy taught me was that he's right. Hurrying doesn't exist. Or rather, it exists only in our minds. We are having a walk in a beautiful forest, birds singing, sun shining through leaves (and a possibility to spot a flying squirrel), and I worry that we are left behind the group. We are left behind. But what about it? What if it takes three minutes to climb a car? What if it takes an hour to eat a snack? Where are we going with such a speed?

It feels for me that while technology gets faster, the society—us—has to go faster and faster too. We have to work more and with more speed. We always have to be somewhere on certain time. People get upset when their mails, text messages or calls aren't answered immediately. Healthy food is expensive, and thus we have to work more to afford it. Economic growth has to continue—faster and faster—until it crashes (which is hopefully about to happen soon). Even things connected to slow lifestyle have timetables. The main reason I do not take yoga classes or take part in meditation group sittings, which are both things I would enjoy, is that I always end up rushing and feeling stressed because I'm late. And that's not something I like to feel even when I kind of have to, and certainly not on my free time.

My mind doesn't like speed. Neither does my body. Among all the people I know, these Down kids who don't understand the concept of hurrying are actually in many ways the wisest.

Hereby, I make a solemn promise. If it ever happens that a Down child is born to me, I promise I will try to learn every lesson s/he has to teach me.

23 huhtikuuta 2012

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.