Everyday Lives of Extraordinary People

  Kevin and Adam, July 2006. Picture: Lindsay

The people in the picture are Kevin and Adam, both 15 when the picture was taken. Kevin has always responded to challenges, and to situations in which he felt threatened, combatively. He was doing this when he was 6 or 7, quite prepared to fight adults and having no real awareness of his lack of size, reach or strength. Because Kevin's future is not precisely mapped out, it's causing him some concern. He'll have no trouble holding down a basic job but will need help for a while with living skills, especially budgeting. It's vital to him that he has support, not just from community agencies, but from another autistic person his own age so that he has a secure place to come home to.

Diminutive Adam has dealt with the world by withdrawing as far as he could from it. For most of his life, he's spent his free time in front of a game console. At school, he has often been a target for bullies and initially sought out Kevin for protection. The two have become close friends and today you never see one without the other. The effect on both has been excellent. Kevin is far more settled and a lot less aggressive. As long as Kevin is around, Adam has the courage to face the world and can even do that for a short time without him. A few months before this picture, it would have been impossible as Adam would never have faced the camera, let alone smiled.


Anton relaxing at home
Anton (right) with his friend Dima

Anton Kalugin, above, lives in Russia and initially preferred to be identified only by his initials, AAK. This is because anyone considered to be too different from the mainstream runs a risk of being considered mad and fit only to be locked up in a secure ward where the only programs are the ones available on TV. Russia is by no means the only place where this can happen to autistic people: all of Asia except for Japan and Singapore can be risky, all of Africa except for South Africa and Botswana, and all the Americas south of the US border except Costa Rica. Some Mediterranean countries had until recently an appalling record which only changed when they wanted membership of the EU.

Anton has a second relevant distinguishing attribute, intellectual giftedness, and has written some software which he has sold commercially. This has helped him because of another simplistic attitude: "You can't make money and be mad." He also has his own server and uses it to run several sites. He is now playing a part in running this site.

Anton has coped with a great deal in his brief life, including depression and suicide ideation but has found support from kids like him around the world. He has one close friend, Dima, (seen in the picture on the right) and is also part of a small group which includes Peter Edlund from Copenhagen (you can find his picture on Everyday Lives 6.) as well as two boys from Ireland, Ciarán Kelly and Michael Beaumont (pictures below). Anton speaks good English which will get even better when he goes to an all-English-speaking school in September 2007.


Brent, December 2006

Brent Conner, from Maryland, USA, has quite a few pictures here but none depicts his level of intellectual functioning as well as this. Although quite autistic he can, in the right mood, be social. Although he doesn't speak, he appears to have a reasonable level of receptive language: in 1998 Lindsay asked him would he mind helping him carry baggage from his car to his motel room and he cheerfully complied. A motivation could have been that he had the chance to flop down on a motel bed, something his father Barry said that he likes to do.

Many individuals who function at Brent's level do not understand society's expectations or even that there is a society at all. Some may never develop this knowledge. Eventually, they become too big either for their families to control, or for people to forgive their social transgressions (they're not cute anymore) or both. Therefore, a full-time school or residential placement is a necessity for a significant percentage of low - functioning autistic teenagers.

A residential placement is an incredibly stressful time for everyone concerned and often parents have great difficulty coping with feelings of guilt. There's no need for these, provided the placement has been made in good faith, but many teachers and carers say that they've never come across an instance where this logic made any difference.

Life can also be difficult for autistic children with gifted-level IQs. Because we don't look like most peoples' ideas of what an autistic person should look like, many people refuse to accept that we are autistic at all, even though we have the "triad of impairments" common to all autistic people. Additionally, we are often hugely fearful of change (YO!!) because it makes the ordered world so essential for our functioning begin to fragment, and we have the usual difficulties in sensory processing.

Ciaran, May 2006
Michael doing his homework, December 2006

   

Ciarán Kelly (above left) and Michael Beaumont (above right), both from Ireland, are cases in point. Although we have been able to use our intellects to determine the basic outlines of social norms, we have been mostly unable to understand the finer, more subtle aspects of social interactions and expectations which has left us both frustrated and angry. Both our lack of social understanding and our resultant anger led to extensive rejection, so by the time we were eight we felt very depressed about the world and ourselves. We manifested this distress very differently.Our self-esteem was essentially non-existent and once it's gone it's very hard to get it back. For around four years we have been able to talk to others our own age in other countries who were confronting the same issues with the same outcomes. There have been some minor changes in personnel along the way and the result has been an improvement in self-esteem for all four of us. We are simply less angry, less depressed, less suicidal, more willing to accept that we have futures, both invidual and together, and more willing to work toward living as successful adults. Successful by our standards which are not necessarily yours and that's important because the first thing we had to understand about "normal" society was that we had to deal with it, it wasn't going away and that we were the odd ones out. So even if we couldn't fit in, life was easier if we appeared to. So a lot of our public life is just acting, really we're quite different, and that's true for all autistic people who function at our level. How could it not be?

Lindsay's role in this was simply to put us in touch with each other and then to act, initially, as a catalyst for discussion and often as a referee. Ciarán, especially, hasn't hesitated to aggressively pursue avenues in Lindsay's reasoning which he suspected were flawed or to challenge him to justify aguments he put forward for approaching people or situations in one way or another. He's sometimes done this in person and very loudly but he's learning to trust others at the same time as he's learning to make the best of his time on earth as the person he is.

Isaac and Jennie

Isaac with his mother Jennie.

Caitlyn is doing some Karaoke2

Here's a picture of Caitlyn Robottom. She's wearing a top of her own creation and pretending to do some karaoke. She feels comfortable being photographed in this way. She has many friends and they are all anime characters from Yu-Gi-Oh, Sailor Moon and so on. Where Cait is functioning, it is impossible for her to distinguish real from unreal. 

   

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