I’ve written before about Asperger’s and working, and today I saw this pop into my feedreader (feedreaders allow you to subscribe to blogs so that you can read them all in one place). A blogger I thoroughly enjoy reading, Penelope writes about being someone with Asperger’s syndrome, working, running a very successful business.  She’s putting together a series this week and if you check back you’ll see each of her posts.  Brazen Careerist, the business she founded is also very interesting – it is described as “a career management tool for next-generation professionals” and is also worth a look if you want to see one of the ways career management, recruitment and networking are developing.

Anyway, I thought the series she’s writing at the moment  might be of interest to some readers.

*UPDATE*

The other posts of this series

30 September 2009

29th October 2009

And slightly related – this post talks about how we can learn from people with autism or aspergers syndrome when it comes to developing social skills.

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(yes, the title is vague, but read on, it makes sense, honestly!)

Recently I read two articles about Aspergers Syndrome in the context of education. And as I went from one to the other I noticed something, and while only small, it bothered me. And I began to wonder whether anyone else would notice it, and if so, what they thought about it.

You see, one article was in the Guardian on July 4th and the other in the Sunday Business Post on July 7th . So, similar time frames. Both write about Aspergers Syndrome in an educational context. Both talk to the parents of kids with AS. Both talk to people involved in education of people with AS (admittedly for different reasons) Both articles talk about the challenges and difficulties there can be in educating someone with AS.

Only one article quotes anybody with AS. Only one article talks to someone with AS about their experiences. Which gives you a better idea about AS?

I know which one I understood. And liked.

So yea. 2 ways of skinning a cat. 2 ways about writing about the same topic.

Following on from previous posts about sharing personal experiences, a reader sent me an email outlining their experiences, to share with you.  It’s long, but I highly reccomend reading it all. The author (anonymous by request) simply titled this “College”

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The best way to describe my situation is with a picture. Here’s a scale. It’s a simple explanation of the different levels Asperger’s syndrome can effect people (not an official scale but it illustrates the concept). At one end are neurotypicals (“normal” people whose brains have developed in the typical way) and at the other are people who are quite heavily Asperger. Then there is a gradual transition from one to the other with people populating each grade. A little bit of movement by people is possible along the scale.

AS diagram

Right now I would describe myself as having residual Aspergers. I still have a handful of traits but none of them are obvious and would not at this stage fit the diagnosis of full Aspergers. It usually causes confusion if I say I had a developmental delay now because I’m fairly “normal” at this stage but I wasn’t always so. When I started college I was mildly Asperger and had a diagnosis of Asperger and as a child I was quite noticeably Asperger. So in short I had a developmental delay, but its effects have lessened significantly over the years. I moved left in the scale above. This is not unheard of, for example it has been documented by people like Dr. Tony Attwood. The brain is plastic especially when young and can adapt and make new connections. However the more severe Aspergers is in childhood, the less likely people are to adapt. Furthermore Aspergers effects people differently so one person’s account will differ greatly from another’s.

The biggest challenge in college for me was socialization. When I reached college I had become better at conversation than I used to be but it was still a challenge. For example as a child I used to just go up to people and start talking one-sidedly about whatever interested me. One time I went up to a cub scout leader and just started explaining to them how to find the centre of a lego board in the quickest possible way. I also hated wearing the cub scout uniform because the badges on it were not arranged in a symmetrical pattern. Another time I went up to a classmate and started talking about my five favourite songs and began singing them. He ran away. I also compiled lists of things like metals and enjoyed cataloguing things like hazelnuts and national geographics and putting them in lines and piles.

When I first started noticing I was a bit different I didn’t care, I genuinely thought everyone else was crazy following things like trends in clothes and in the language they used. Someone once said in a game of chasing, yeah I caught you, I caught you like a million times and I got really angry with them because they obviously couldn’t catch them a million times so why would they say that? Though I often spoke to people in school I was not fussed about understanding them because I preferred my own perspective as it made more sense to me, I began to want to understand people later.

So when college began I had gotten to a stage where I had rote learned conversation. I had developed this in school. I would begin by saying Hi, what’s the craic?/How’s the form? Then bring up something about lectures or recent sport, e.g. that lecturer is a load of crap/that exam was easy/how did you find that class? Then I would sign off with something like: Take it easy/ all the best/ See you round. This was what I had seen people saying to each other so I replicated it but it was stressful. I was fine at making acquaintances at this stage because I went up to  people and spoke to them in this way, but making friends or meeting up with people outside class hours was still beyond me. It was like everyone else knew something that I didn’t about conversation. My conversation would usually be very formal too because I didn’t understand banter or the emotional side of conversation.

So I joined loads of college societies in an effort to socialize more. Some were great, some were cliques but bit by bit I became better at understanding neurotypical conversation. I basically trained at it in the same way people would train for a sport. I made a deliberate effort to start conversations with people. I didn’t really know how it worked. I was never sure about the boundaries of how long or how short conversations should last, I was never sure if people were looking for a serious conversation or just smalltalk when I was talking to them, or even what subject they wanted to talk about while I was talking to them, but I knew what I was looking for and that was to learn how this conversation thing worked. I joined lots of oddball societies as well thinking that the eccentric ones would be easier to meet people in.

I crashed and burned many times. I ended up on my own on nights out, I started conversations with people that became increasingly awkward as they went on and I went to events alone because I had no group at the time to go with, but I wanted to get out. I would start conversations with people I knew which went ok only to have a new person come along who would evoke a much greater emotional response from the person I had been talking to and I had no idea how they did it. I was not embarrassed by this, it was not really logical to be embarrassed. The only thing I didn’t like was when people asked me if I was ok. They would spot that I was having difficulty integrating, but this also took away from my autonomy. I didn’t want charity.

I began to become parts of groups. Not socially at first, but parts of society committees where people recognized me. Also in the faculty people recognized me. My first social activities outside college or clubs or societies was with a member of a club I was in. We went booze shopping together. I also began to meet some of his friends. My ability to understand people became better. Then about halfway through college we began to socialize with another guy we both knew so then I knew two people I could call up and socialize with. Now I can call many people.

At this stage I understand close enough how neurotypical people talk. It’s like Aspergers is my first language and neurotypical my second and I speak both fluently. However I don’t think I could have learned it if I had been more severely Asperger as a child.

While I think it is useful for people with AS to learn how neurotypical conversation works, AS people shouldn’t have to be chameleons. AS shouldn’t be made to believe that they have something wrong with them by not being able to communicate and that they should learn the proper way. Rather it’s better to say that most people communicate in a different way and that it may be worthwhile to learn this way. It’s not about fitting in, it’s about understanding, both AS people understanding NTs and NTs understanding AS. It’s about recognizing us and them but not making a divide between “us” and “them” (and those in-between).

It is one thing for an AS person to learn how to speak neurotypical, but learning how neurotypical relationships work is a bit more complicated. Maintaining, building and closing neurotypical relationships takes more than just an understanding of neurotypical conversation. The main thing however is for AS people to get acceptance in society. Learning the neurotypical language and relationship system can be useful in terms of increasing communicative options, but then again many seriously socially impaired people have gone on to marry and have friends and families. So understanding by society is far more important. Developing a strong self-image is also good. AS people also need to know that they have AS because some don’t.

So here’s a few ideas for colleges: Feel free to modify

-Social group for developmental disabilities which effect social interaction such as AS and Dyspraxia. A space where people can just talk without having to worry about the “rules” of conversation. These would ideally have some NTs involved at a later stage for integration.

-Courses for AS in how to speak neurotypical (as long as it doesn’t get patronizing)

-Courses for AS in how neurotypical relationships work

-Courses for NTs in how AS conversation and relationships work

-Training for lecturers

-Raising awareness among students and staff

-Student advisors – AS may not want to talk to strangers though

-Sports or other activities -great for self esteem and self-direction also enjoyable, ideally would be integrated.

Last but most important: I learned neurotypical, will you try and learn AS?