Do Girls Have A Different Expression Of The Syndrome?
The boy to girl ratio for referrals for a diagnostic assessment is about ten boys to each girl (Gillberg 1989). However, the epidemiological evidence indicates the ratio is 4:1 (Ehlers and Gillberg 1993). This is the same ratio as occurs with Autism. Why are so few girls referred for a diagnosis?
So far there have not been any studies that specifically investigate any variation in expression of features between boys and girls with Asperger's Syndrome, but the author has noticed that in general boys tend to have a greater expression of social deficits with a very uneven profile of social skills and a propensity for disruptive or aggressive behavior, especially when frustrated or stressed. These characteristics are more likely to be noticed by parents and teachers who then seek advice as to why the child is unusual. In contrast, girls tend to be relatively more able in social play and have a more even profile of social skills. The author has noticed how girls with Asperger's Syndrome seem more able to follow social actions by delayed imitation. They observe the other children and copy them, but their actions are not as well timed and spontaneous. There is some preliminary evidence to substantiate this distinction from a study of sex differences in Autism (McLennan, Lord and Schopler 1993).
Girls with this syndrome are more likely to be considered immature rather than odd. Their special interests may not be as conspicuous and intense as occurs with boys. Thus, they can be described as the "invisible" child — socially isolated, preoccupied by their imaginary world but not a disruptive influence in the classroom. Although girls are less likely to be diagnosed, they are more likely to suffer in silence.
An important issue for girls is that during adolescence the usual basis for friendship changes. Instead of joint play with toys and games using imagination, adolescent friendship is based on conversation that is predominantly about experiences, relationships and feelings. The young teenage girl with Asperger's Syndrome may want to continue the playground games of the primary school and starts to reduce her contact with previous friends. They no longer share the same interests. There is also the new problem of coping with the amorous advances of teenage boys. Here conversation is acceptable but concepts of romance and love as well as physical intimacy are confusing or abhorrent.
In an attempt to be included in social activities, some teenage girls have described how they have deliberately adopted a "mask" like quality to their face. To others at school they seem to continuously express a smile, but behind the mask the person is experiencing anxiety, fear and self doubt. They are desperate to be included and to please and appease others but cannot express their inner feelings in public.
The author has observed girls with the classic signs of Asperger's Syndrome in their primary school years progress along the Autism/Asperger's Syndrome continuum to a point where the current diagnostic criteria are no longer sensitive to the more subtle problems they face. The author's clinical experience would suggest that girls have a better long-term prognosis than boys. They appear to be more able to learn how to socialize and to camouflage their difficulties at an early age. This is illustrated by Vanessa's poem.
Ironing Out the Wrinkles
Life was once a tangled mess.
Like missing pieces, in a game of chess.
Like only half a pattern for a dress.
Like saying no, but meaning yes.
Like wanting more, and getting less.
But I'm slowly straightening it out.
Life was once a tangled vine.
Like saying yours, and meaning mine.
Like feeling sick, but saying fine.
Like ordering milk, and getting wine.
Like seeing a tree, and saying vine.
But I'm slowly straightening it out.
Life is now a lot more clear.
The tangles are unraveling,
And hope is near.
Sure there are bumps ahead.
But no more do I look on with dread.
After fourteen years the tangles have straightened.
How do you get a school system to pay attention to a child with AS when his/her academic functioning is at least normal, and often advanced?
Many schools, when they look at differences or disabilities, expect you to be in a wheelchair, or intellectually disabled. What they can't conceptually grasp is a child who may be a wiz at math, computers, or whatever, but is socially odd. The first reaction is that it has something to do with the parents — that they obviously haven't raised the child properly, or something like that.
Often I become involved with the schools. After a child is diagnosed at the clinic, I will go to the school, especially high schools, and meet with them. I explain to the teachers what AS is, and how the child expresses the AS aspects, their ability profiles go through some of the heroes, some of the do's and don'ts. For example, sarcasm isn't going to work. You've got to make sure that the child understands the concepts you're talking about. When they do their homework, make sure they are on the right track. Just because he's not looking, is not to say he's not listening. He is very honest, and many of the children with AS will tell you your mistakes. So when he stands up in front of the class and says, "you've missed a comma there," he's not being rude, he's not showing off to his mates, he doesn't realize that you're not supposed to tell the teacher that they have made mistakes. Otherwise, the teachers will review the child as rude, inconsiderate, etc. I go to the schools to do that.
What we have in Australia is a movement by both parents and professionals. Between parents and professionals, they have campaigned for services for such children. The outcome has been that, not only do we have advisory visiting teachers for such children, but we have training programs for the teacher aids so that they can understand such kids.
The way we changed the schools was in part also spotting those AS kids, going into the school and supporting them, then the school staff would say "he's not the only one," and we work from there. We now have a "good school guide" and some parents will actually move so that their children can attend certain schools that have a history of doing well with these kids. So, first you have got to get the Education Department to understand in it's policy and it's training about AS, but you've also got to go through many aspects of working with many individual teachers as to what to do. Kids with AS either get on wonderfully, or atrociously, with their teachers. It's a disaster for both parties if you're not careful. You need to support the teachers, and help them understand. There are certain schools in Brisbane that have more than their fare share of kids with AS, because parents have voted with their feet and moved to that school district where the principal understands.
I say to the parents — you are an expert on your child, you are an expert on their personality and developmental history. Use your gut reaction to know whether that's an appropriate school. If your senses are uncomfortable, don't go! If you feel relaxed and comfortable, your child will probably be relaxed and comfortable in that environment. You need to work with the teachers. We do training programs for parents on how to relate to teachers. I also visit schools on a regular basis. The schools now are less ignorant, less fearful of such children, and there is a better structure for helping them. You will get that in time. However, at the moment, it does seem a bit down the track before you get that.
Should the child be placed in school based on their academic level, or their chronological level?
If he's say, grade 4 chronologically, but grade 8 academically - it depends on the individual child obviously - but generally I would say to place them with the grade 8 kids. Many of the kids with AS aren't there to socialize, they're there to learn. And, one of the things that they hate is other kids disrupting the classroom. But watch out for grade 8 though, because the kids at that level want only to give their teachers a nervous breakdown. You've got to chose their teachers wisely. If you say that if they have got to be with their peer group, you've got to look at each case individually, but you need some flexibility.
Actually, many of these kids have been home schooled, and gone on to university quite successfully. They don't appear to have suffered from the lack of social interaction as teenagers
How do you discipline a child with AS?
I tragically see a number of teachers saying "it's a matter of discipline!" Well, okay. Certainly having AS is not a license to do whatever you want to do, and there must be natural consequences. But my view is, with the child with AS, you must spend more time explaining what they did that was wrong, why it was wrong, what you are supposed to do, and how to know when you are supposed to do it.
Quite often, when the child is very emotional and upset, it is not a good time to explain this. When you've got emotion, you haven't got logic. Look at love. Love is never logical. The same with anger or distress. So, that may not be the time to explain consequences, etc. You may need to deal with the situation when the child is relaxed, possibly a couple of hours later. You say, okay let's learn from this. Let's go through what happened. Often what you find is a miscommunication or a misinterpretation by one or both parties. Both parties need to see the perspective of the other. But the time to do that may be when the person is reasonable, not emotional. We do drawing, pictures, Carol Gray's social stories, all those sorts of things to go through that process.
Often the child won't follow the rules unless they see a logical reason why, or if they see a value to themselves. And, if you talk about "people won't like you" - who cares? Or, "do it to please your teacher" - why should I please her? So what we have to use is, I'm afraid, a very mercenary approach. If you do this, this happens - if you do that, that happens. But it's very logical, it's almost like having a rule book. There are consequences for what you do, this is the logic.
If you start getting into complicated personal relationships, you've lost it. You have to be quite firm in the consequences with that individual, but you do need to spend time explaining things. For example, if we have a child who has hurt another child, or their brother or sister — we may say, "say sorry" and the person says "sorry," and as far as they are concerned, that's the end! If he's done something wrong, he must do, or donate, something to his sister for example — tidy his sister's room, or share a chocolate bar that he was going to have at lunch time, half each — in other words something is lost or given, or they lose their time for the person concerned. They could also make an apology card. They must actually do something tangible, rather than just "sorry," and that's it.
It does mean that you have to explain this to teachers, because they expect the kids to know. You've got to explain that in those circumstances, the child needs more explanation. I also explain to teachers, "don't use the degree of disruption as the measure of guilt." Although the AS child is the one who hit the hardest, he is not the only participant, and between them it was six of one, and half dozen of the other. Many AS kids hate the injustice - that they get all the blame, but the person who called them names gets no punishment. You need to deal with both parties in that situation.
How do you draw the line between an 8 year old trying to get away with something, and a boy doing what he is doing because he has AS?
I think in a way that's been answered. AS is a difference, but not a license to do whatever you want to do. If they want to do what they want to do, then often we use a timer. If they're watching TV, we often say, "you can watch TV for 15 minutes" — one day it's 10 minutes, and other it's 15 minutes — it's very inconsistent. The child knows that if it's your opinion of when it stops, they can use emotional blackmail to get you to change your mind. That's why we get a timer, "okay, you've got 15 minutes, and when the timer goes off, that's the end." I read in a computer magazine the other day about a wonderful computer program that you can load onto your computer, and every so often, it flashes a message across the screen, "time to take a break, you've been on this long enough." That's what they want! It's not you, the computer says "I've had enough, I need a break, you must go have a cup of tea!" And then they'll believe it! So find one of those programs. So, we use a timer in that process, so it's the timer that says you've got to stop, not you in that situation.
What about the child who says no to every proposed appointment - medical, dental, eye, even school at times - as well as to most proposed family outings. Should we force him, persuade him, give up, leave him home alone?
Probably what's happening with that child is fear of new circumstances. Any new circumstance is fraught with danger of making a mistake, hard work of working out the cues and what to do - there's change, there's no script. In other words, where others would like variety and novelty, here the person wants consistency and predictability.
What you've got is a child who needs knowledge and scripting. I talked earlier about Social Stories by Carol Gray. What you would do is create a Social Story about where you're going. If it's to the dentist, you'd write a Social Story about that, why you're going, what the person is going to do, what's going to happen next, etc. By writing that story, illustrating it, and going through it, that child is more likely to be scripted in what's going to happen, so it's giving that information.
It means you have to anticipate. You start off with some minor excursion somewhere that's short and sweet, and keep it successful. It means throughout the process, the parent has got to think ahead. You've got to think like your child, and before you go round that corner, you've got to know what they're going to be concerned about, what's going to happen. So when Auntie Joan comes up and goes "oh, let's give him a kiss," you grab her quick, and just push him off to the side, knowing that will upset him in that situation. You have to think ahead in that, or, you write a Social Story that Auntie Joan is going to give you a big hug, it's going to be very quick, then you pull back, say thank you Auntie Joan, and I'll take you upstairs and you can play.
I meant to say that this boy is 14 years old. . .
If he's 14, I'd also be looking at whether his world is actually shrinking, because he may be aware at 14 of his differences, and retreating from the world, so I'd also be looking at some of the signs of depression as a possibility at this stage. That lack of interest in other activities, etc. may be a sign of depression.
With a teenager at 14, I would look for that because often at 14 not only is it a time of hormonal change - but he may be going through an insight into being different. So, he may need a bit of help in that area too.
What is the best way to handle meltdowns and temper tantrums with youngsters?
With the temper tantrums, you may know with an individual that a certain situation is fraught with frustration, and potential anger. You know that the stress and strain of school days, which are so long and arduous - it's like a compressed spring. It's compressed, and compressed, and compressed, and when they get home, there's an explosion, and there's that Jeckyl and Hyde component. You may know that after school, it may be a time for going for a run, going for a walk, watching a TV program, or whatever it is, to get it out of their system, to debrief or to get rid of that tension.
There are ways that parents may pick up the signs — it may be rigid thinking, it may be being intolerant of imperfection - but there are warning signs that this person is starting to get agitated. So, in other words, the circumstances or warning signs may be a clue.
However, with AS, there are times when it comes out of the blue. When you have no expectation that it's going to occur, that it's out of proportion to the situation - it takes everybody by surprise. Often what occurs is that it's very, very intense, but brief, and at the end of it - "I'm fine, why are you crying? Why are you upset, I'm all right now" - not realizing that with that whole process, everybody else is unstable for some time. What you have to go through is a program on emotions and anger management for that individual, so that they can, hopefully, telegraph their anger before hand in more constructive ways.
We use what we call constructive destruction — it's basically vandalism, and it's what teenagers do because they hate the system, they will wreck things — so we call it recycling. One child we have has major problems with his mood swings, which seem to go up and down quite phenomenally, and includes periods of severe anger. But when he's coming up to those periods of anger, he's got cans to crush, telephone directories to tear up, there are all sorts of things that he's recycling because he's fascinated by the environment, geography, and recycling. He can be channeled to do that and feel better, having done that sort of mini-vandalism to get it out of his system.
Anger is an issue, because it can be the one reason that children are expelled from school. They may be okay with their school work, they may be reasonably coping with their social life, but if you have one or two periods of anger, especially if somebody is hurt, then you're often excluded from school. So, there are a number of kids, especially in adolescence, because of one or two episodes where the person has been teased, or has been wanting to join in a group, or misunderstood circumstances, that the anger and the intensity of it gets everybody frightened about the situation. So there are areas in anger management that need to be gone through, but really it requires someone with expertise in both AS and emotions.
Reprinted with the permission of MAAP Service, Inc. © 2008 MAAP Service, Inc.