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Quick reference medical handouts used by Pediatric offices

Asperger's syndrome:What is it and what do you do about it?

Actually, before we can even discuss that, we have to look at the whole notion of what a "disorder" is.

You see, it is not like the rest of medicine. Most things are black and white, yes or no. You either have broken your arm, or you haven't. You have an infection or you don't.

But when it comes to human behavior there really isn't such a thing as "normal".

What do I mean by that? Well, almost all human behaviors can occur with almost anyone, given the right circumstances. So, rather than behaviors being normal or abnormal in a medical sense (like a broken arm is not normal), they can only be defined as normal or abnormal in either a statistical or social sense.

A statistical definition or normality means that the vast majority of people (usually 95%) would show that particular behavior. So anyone who is outside of that 95% is not normal. By this definition, anyone who is particularly dim (i.e. less clever than 97.5% of the population) would be "abnormal" (we call then "learning disabled") and anyone who is more clever than 97.5% of the population would also be abnormal (we call them "gifted" or "geniuses").

But in a medical sense, (unless they have clear brain damage, such as from an injury or palsy) they are just part of the wide range of "medical normality".

A similar state of affairs occurs with tall and short people. Too tall and we call you a giant. Too short and we call you a midget. But either way there might be nothing actually "wrong" with you - you are just at the extremes.

A social definition of normal refers to what we, as a society, consider to be appropriate and acceptable behavior. Thus stealing and lying are normal considered to be "wrong" and therefore not "normal". Similarly, people who are rude or socially clumsy are often inappropriate (and may offend people) and so, again, are considered not normal.

And this is where Asperger's comes in.

In the past, people who are now labeled as "having Asperger's" would have been labeled either as "eccentric" if they where just strange, but harmless), or else as "maladjusted" or deviant in some other way if they were eccentric and unpleasant with it.

So what is "Asperger's"?

Asperger's Syndrome refers to people who show difficulties in social communication. They have difficulty in recognizing and using social cues, and so are often clumsy or inappropriate in social interactions. As a result, they often come across as rude or insensitive.

The also tend to have unusual interests and behaviors. Typically they may have strong interests about specific topics that border on being obsessive. One picture of Asperser type behavior is the peculiarly British hobby of train spotting. This involves standing for hours on end in train stations, taking notes of the serial numbers of passing trains, with the goal of "spotting" every train in existence. There are even books published listing rows and rows of train numbers!

Asperser children also have very firm ideas of right and wrong, and won't hesitate in arguing the toss with a teacher. They are typically unable to consider shades of grey and will see all issues in black or white terms.

Now, none of these behaviors, in themselves, are so strange or abnormal!

The problem is that society doesn't quite know what to do with people like this. Just as society is very inconvenient for short people (can't reach the desk) and tall people (have to duck through doors), so society is not designed for eccentric people who have a very different view of the world.

Especially schools, who like all children to conform to their view of what children should behave like.
And so these children often rub people up the wrong way, and end up getting frustrated, angry, and in trouble.

In the past, these children were either tolerated as being odd or "loners", or else they ended up in serious conflict with authorities.

These days they are more likely to be "diagnosed" with Asperger's.

So what does a diagnosis mean?

Again, unlike in medicine where there is something clearly something wrong (like a germ causing an infection), there is nothing "wrong" in Asperger's. At least, nothing that can< be identified with any blood tests, x-rays, etc.

A diagnosis of Asperger's is made purely on the basis of the
descriptions of behaviors as provided by family, caregivers,
teachers, etc.

It is usually considered to be part of the Autistic Spectrum, which means as you go along the scale to more and more social difficulties, it gradually blends in with Autism. If you like, Asperger's is like a mild version of Autism.

So does it help, having a diagnosis of Asperger's?

That is the key question!

And the answer can be yes or no:

YES if, as a result, parents and teachers make the effort to learn about what it means and how best to adapt their behavior, and expectations, so as to best help the child to succeed.

No if, as a result, they are simply discriminated against as having "something wrong with them" or if people the think there will be some kind of treatment or cure for it.

Because, the reality is that the diagnosis really shouldn't make any difference at all to what people do - IF THEY ARE PROPERLY CLUED IN TO CHILDREN'S BEHAVIORS. (But they rarely are).

Why do I say that? Because helping an Asperger's child requires exactly the same principles as managing ANY child you get to know your child's individual personality and learning style, you get to know what motivates or doesn't motivate him, and you adapt your strategies and expectations to that. If you do that properly, you will come up with the right strategies for a child whether or not they have the diagnosis.

But the reality is that few parents or teachers are like

For them it may be helpful to have a diagnosis so they can then think in a different way about how to help the child. They can, for instance, find some books about it, and read about strategies that do and don't work with such children.

Because "treatment" of Asperger's consists 100% of adjusting YOUR behavior and expectations so as to create an environment in which the child can flourish.

There is no medication that will "treat" Asperger's (although some medications can sometimes be of some help with aspects of their behavior - see a psychiatrist about that.)

So, given what most teachers are like, the reality is that these children will most likely do best in an environment in which the teachers have had previous experience of Asperser children. These are the teachers that can best adapt themselves to help the kids to succeed.

Also, the reality in this day and age, is that you may be able to get more resources and more funding if your child has a diagnosis than if they don't.

So, how do we put this all together? These, I believe, are the main points:

If someone suggests that your child might "have" Asperger's, don't treat it as some kind of insult or that your child is abnormal in some way.

Instead, go and get some books and read up about it. If, as you do so, the books seem to be describing your child, then you might learn some useful ideas on how better to help him. Share these ideas with the teachers.

If, despite doing all that, your child still has difficulties in fitting in with "normal" expectations, then DO something about it. Don't just wait for the problems to go away, as they probably won't.

Doing something may involve one or both of the following:

1) Changing school to one that has more experience of children like yours. That might mean special school. Don't put up with a school that is constantly labeling your child as a troublemaker. The school is the single biggest determinant of how well these children do as they grow up. Put them in a critical, punitive environment, and they will have major problems later on. Put them in a caring, understanding, flexible environment and the can do very, very well indeed.

2) Getting an official assessment to get the "label". Having the label might open doors to more funding etc. But don't fall into the trap of thinking that "having" the diagnosis means anything different than not having it. Either way, you child is still your child, and will respond to the right management. Just use the label as a tool to get the right school and the right support.

Finally, whether or not you have the official diagnosis, if you think your child might have Asperser type difficulties, read the books! Learn as much as you can about how they think and what they respond to.

And then work hard to give them the best possible environment that you can. It can be hard work, but it WILL pay off in the long run.

Incidentally, the principles of behavior management as described in my book apply to kids with Asperger's just as they do to any child. By understanding first the principles, and secondly the way Asperser children think, you will be able to come up with some effective ways of handling their behaviors that will make a real difference to how they turn out in the long run.

And how do they turn out? Well, they will always be a bit "odd" or "different", just as tall children will be tall adults. But with the right support and encouragement they CAN find their own niche and live successful lives, even in modern society!

written by Noel Swanson, M.D., author and child psychiatrist. Check out his website for useful parenting tips at (posted on 08-03-06)


As a reminder, this information should not be relied on as medical advice and is not intended to replace the advice of your child’s pediatrician. Please read our full disclaimer.

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