Wednesday, February 25, 2009

Article: When should I tell my son about his diagnosis of Aspergers?

Hot on the heels of my recent articles comes Dave Angel's take on the subject;

When should I tell my son about his diagnosis of Aspergers?
by Dave Angel

I get the feeling that Dave supports the idea of telling children in an age-appropriate manner. He also cautions against the self-image issues which can arise from allowing a child to think that they are "defective".

It's critical that if and when you do tell your child, that you make the experience a positive one.

Sunday, February 22, 2009

Coping with Social Anxiety

This topic was suggested in a recent comment and I figured it was something I haven't covered properly in the past - so here goes...

Defining Social Anxiety
Social Anxiety isn't something that only affects people with aspergers, it affects people with all kinds of mental conditions as well as those with physical issues, weight issues and other differences that mentally or physically distinguish them from the general populace. The distinction may not necessarily be a real one but could, and often does, only exist in the subject's mind. Social Anxiety is so great an issue, that it's considered to be the third largest psychological problem in the world today.

Social anxiety isn't limited to difficulty meeting people in face to face conversation but also includes;

  • Telephone Conversations
  • Social Occasions
  • Simply Going Outdoors in Public Places
  • Being Watched
  • Recording (video and photo Cameras, Microphones etc)
  • Instant Messaging, Chats, Facebook and other Web 2.0 Systems

Aspies tend to walk a line that varies between total fear and no fear, depending largely upon the individual. Some aspies aren't afraid of face-to-face verbal interactions but just aren't very good at it. Constant negative feedback however can often tip the scales.

Acting and Public Speaking as Ways to Reduce Social Anxiety
The best ways to reduce social anxiety, particularly in the school years, revolve around "jumping straight in" - regardless of how scared the individual might be. This doesn't work well at younger ages, where such fears can lead to meltdowns but it's quite acceptable for the mid to late teenage years.

When I was at school, I had "buddy" teacher (a teacher who became a good and trusted friend). One day this teacher picked me out of the class and said that he had noted that I was good with history and thought that I should join the debating team. He gave me a couple of days to sign up on my own - but I didn't. Then he joined me up and informed me that I was now committed. At first, I was a little annoyed but he made it clear that he thought it would be good for me and that he would be supporting me all the way.

The teacher led me on with the promise of replacing me when a suitable person could be found. Of course, now I can see that it was all a ploy and I went on "debating tour" and was forced to confront my demons.

Around the same time, the teacher suggested that I take "drama" as one of my elective subjects. I had absolutely no desire to act and I really couldn't see the point of drama but he told me that it was an essential skill. In retrospect, I have to agree.

There's absolutely no mistaking the importance of public speaking and acting for people with aspergers. Amongst other things, it helps you to lose the "monotone" in your voice - a feature that aspies are famous for. It also prepares you for "acting the rest of your life".

If you're interested in reading about acting therapy for aspergers, you might be interested in the following book;

Teaching Asperger's Students Social Skills through Acting: All Their World's a Stage
by Amelia Davies

Unlike most NT's aspies tend to "act" every day, often faking emotional reactions, tones and gestures in order to appear more like the NTs that surround them. It's no surprise therefore that there are a lot of famous actors with aspergers.

More to come...
There's a lot more to discuss in relation to social anxiety. Next time, I'll give some more concrete examples of how social anxiety displays, how the quality of an individual's interactions can increase or decrease social anxiety and tips for improving on a day to day basis.

Tuesday, February 10, 2009

Do Aspie Children know at they are Different? - Part 4: Letting Your Child Know

There are at least three levels of recognition involved with the discovery that a child is different.

  • Adult Awareness
    This invariably seems to come first - from parents, teachers, relatives, other parents and doctors. Usually these adults have enough discretion to avoid talking about the differences in front of the child - particularly if the child is unaware of the problem.

  • The Child's Personal Awareness
    I hope that this series of posts has served to highlight an important truth - that the aspie becomes self-aware at a fairly early age. They won't know anything about aspergers itself but they will at least sense that they are different.

  • Peer Awareness
    It also doesn't take long for a child's peer group at school to begin recognising the differences and, depending upon the environment and levels of supervision, taking advantage of them and/or bullying.

To Tell - or not to Tell
There is a very real fear on the part of aspie parents with aspie children that to tell their child would be to change them. Our personalities are all heavily influenced by our experiences and unless we learn to cope with "who we are" by ourselves, there's a chance that we may never gain total independence.

The question is really whether it is possible to tell without losing this independence and without permanent damage to your child's self-esteem.

I can't pretend to know the answers to these questions. I didn't find out about my aspergers until my late thirties, by which time I was fiercely independent - most would say, too independent. It's too early to say whether the approach I've taken with my children was the correct choice or not.

I know a few people who were diagnosed in late childhood and early teens, who have major dependencies. Their self-esteem has never recovered from the implication (by parents and practitioners) that they were something "less than normal". Many of these people spent (and in some cases, are still spending) their teenage years as prisoners of over-protective or curebie parents.

When To Tell
It's my opinion that parents should let their child in on the "secret" soon after self-recognition and well before it becomes an issue. It becomes an "issue" when either the child becomes emotionally affected by their differences (eg: depressed) or when their peers not only perceive the differences but start actively taking advantage of them.

It is probably appropriate to tell your child around age six. This is young enough to avoid the self-esteem problems of unexpected revelation. Waiting until the teenage years to tell your child is possibly "cruel" and potentially self-damaging.

How to tell your Child
Of course, the most important thing about the actual telling is "giving them the correct message".

Here are my tips;

  • Find a real-life Idol
    Aspergers is a hereditary condition and as such, it shouldn't be too much of a stretch to find other aspies in your family - diagnosed or not.

    Try to find someone who has qualities to be admired. If they have a mix of good and bad, then be sure to concentrate only on the positives. Your child is going to find the negatives by themselves soon enough.

    Hopefully your Idol will be able to tell your child about mistakes they made, or things they learnt. Stories about embarrasing blunders that others have made can help to drive home the real meanings behind those confusing metaphors that NTs use. Certainly my own children will learn from my experience that "Bring a Plate" means, bring some food on a plate - not just a plate by itself.

    If you can't find a related aspie to suit (or even if you can), you should be able to point to one of the many self-confessed or suspected aspies who can easily be found on the internet. Obtaining a book like "Different Like Me: My Book of Autism Heroes" is also a good starting point.

  • Educate Others to be Positive
    Again, the most important message you can convey is "different" - not "worse". Your child and people around your child need to know that he is "wired differently" and that as a result, his learning and interaction styles will be quite different. Probably one of the best materials for achieving this is the book "All Cats have Aspergers". This book can be read in under 30 minutes and provides one of the best guides to how aspies feel and behave. It's equally suitable for parents/teachers and classmates though I'm not convinced that it should be used in a classroom to highlight a child's differences - that sounds a little close to discrimination.

  • Work "with" the Condition
    Parents, relatives and teachers need to become "evangelists" for the child. There are plenty of positives which need to be highlighted and the child will need praise/rewards when they successfully negotiate the negatives (for example; when they successfully control a meltdown).

    Your child's IEP should be tailored specifically towards Aspergers and in particular, it should use the strengths of the condition to assist in addressing the weaknesses. It is critical that you, your child and your child's teachers recognise these strengths. An example of this would be a greater reliance on visual and experiential learning - aspies remember events and sequences better than facts. It's well worth using historical and science programs on TV to your advantage in this regard.

    Then there's the special interest. It's a major driver of aspie behaviour and learning. Allow your child to read and write about their favourite things. Don't worry that they're stuck reading only a single genre or series but instead seek to find more complex materials that bear a passing link to the special interest. That way, they'll keep learning and their special interest will drive that learning.

  • Maintain Positives
    Above all, you must always maintain the positives. Your child should be encouraged to give things a try but on their own terms. For example; they should be sent to get things from shops under minimal supervision. The only way that they're going to learn about human behaviour is to be exposed to it - both good and bad.

    If your child makes a mistake during play or conversation, teach them how to "fix it", how to apologise and how to regain lost friends. You'll also have to teach them when to "cut their losses" with regard to unreliable friends. One of the worst things you can do is decide that having friends is "too difficult" for them and keep them locked up away from friends.

I don't think you should stop merely at "being positive". Instead, you should teach your child to be proud of their condition. My eldest has already pointed out some of his abilities to his teachers when praised. Reportedly saying; "I can do this because I'm good at it. I'm an aspie, like my dad". That's the kind of attitude I like to hear.

Wednesday, February 4, 2009

Do Aspie Children know at they are Different? - Part 3: The Teenage Years

It seems that aspie children are well aware of their differences from an early age and that at the very least, this has significant impact on their ability to make and retain lasting friendships. So far however, the long term negative impact has been minimal but during the teenage years, this will begin to change.

When I first started at my new "secondary school", quite a large number of my primary school classmates came with me. Unfortunately, since my only friends by that stage were girls and since I was starting at a (then) all boys school, I started off with a lot of familiar names and faces but no friends.

The Comedy Act
My earliest forays with my classmates were in the form of comedy routines. I had no fear of acting stupid in front of others (aspie naievity) and I would be constantly harrased to perform my "invisible flea circus" act for others. I did this instead of conversation and I quickly earned a reputation for being weird. My new classmates had quickly marked me as different.

At last, part way through the year, I started to make a friend - or rather, the friend started to make me - since I remember having no idea why he was inviting me to his place. I'd obviously missed all of the signals. It turned out that both of us had a healthy interest in Science Fiction and Star Wars in particular.

Loss of Innocence
Sometimes events which are traumatic and life changing for the aspie can be completely missed by everyone around them. Such an event occurred in my first year of secondary school. The class were building diaoramas and we'd been asked by the teacher to bring in a shoebox to make it in and various toys to put inside. Naturally, I decided to build a Star Wars one but within a day or two all of my figurines had been stolen. I don't remember if a meltdown manifested externally at the time but I know that I was inconsolable for months. All of my most prized posessions had been stolen in one go.

That one terrible event made me lose faith in humanity as a whole and I've been cagey with my posessions ever since. My trust was broken and it has never fully been restored. When nobody was fingered for the crime, I set my sights upon my new-found friend as he was the only person I'd met who showed any interest in Star Wars. That friendship was terminated before it had really begun.

New Friendships
The Star Wars event caused me to write off my entire class as friends and I resigned myself to a depressing future without friends. The school had a rule that every single student had to play some sport and I was quickly enrolled in soccer. Unfortunately, my lack of co-ordination made this impossible and I don't think I kicked the ball during gameplay more than a couple of times in the entire season. I quickly became bored with the game.

There was another boy in our team who disliked soccer. He was very loud and not at all the sort of person I'd normally be involved with but again he started being friendly and invited me over to his place before I even knew that we were "friends". Again, I had misread the signs. This new boy introduced me to a bunch of like-minded friends (other boys who didn't quite fit in) and I ended my first year of secondary school in good spirits.

Two years later, we were all still friends although I had never been in any of their classes. At that point, we were allowed to use the "big kid's library" and were asked if we wanted to become library monitors. Completely disregarding my friends, I jumped at the chance and signed up immediately. They were a little miffed when they found out but all of them signed up within a day or so.

For the next four years, we spent every lunchtime in the library together. We were rarely ever harassed by bullies because they never caught us wandering the playground. My group still thought that I was weird but little by little our respective differences rubbed off and we all developed a healthy respect for eachother. Today, we are all approaching our fourties and are still the best of friends.

As for the boy who introduced us all to eachother, he left school two years earlier than the rest of us but one of his last introductions was to a girl. The girl who became my wife.

Closing Thoughts
There are a few important things to remember here. First of all, it took less than six months at a new school for students to recognise me as something different and take advantage of my naietivty. Secondly, that I never recognised the start of a friendship - everything had to be initiated from the other side. Thirdly, that the concept of friendship meant so little to me that I was willing to sign away my lunchtimes without even consulting my friends.

Parents of aspies should take note that if your child is suffering from bullying, "out of sight, out of mind" is the best remedy and it may expose them to like-minded friends.

In the next part of this series, I'll actually discuss the title question and give my thoughts on when and how children with aspergers should be told about their condition.