Sunday, April 26, 2009

The Human Side of the Aspergers Diagnosis: Part 2 How Aspies Feel about the Label

The Age Differential
Most people with Aspergers seem to be "born with a knowlege of their difference", though in truth this awareness develops over time, mostly during their primary school years.

The age at which the label of aspergers is used to describe these differences seems to have significant impact upon the way in which they are received by the aspie. Of course, there are other factors too, particularly the way in which others around the aspie take the news.


The Very Young
As you would expect, telling an "under 8" year old child that they have aspergers is pretty similar to telling them that they are wearing a blue cardigan or that they were born in Australia. Their reaction is pretty minimal.

Of course, the fact that you have now disclosed this "secret" will cause them to pay a little more attention whenever the topic is discussed in the household. As a result, parents who have "disclosed" need to be responsible for maintaing a positive view of the condition. At age 8, it's the way that others describe the label rather than the label itself that matters.


The Teenage Years
We all know that teenagers are generally rebellious and angsty, they don't take criticism well and they struggle with self-image. If you attempt to diagnose a teenager with aspergers, they will either, "not want to know" or they'll take it onboard in a negative manner. The teenage years are probably the worst time of all to press a diagnosis.

When teenagers decide not to accept the diagnosis, they'll rebel not only against the label but also against any support you manage to obtain for them. They'll reject the idea of "remedial classes" or "special teachers" because they don't want to be seen by their peers as "different". There's not a lot you can do about this and they can't be reasoned with.

Worse still, is when teenagers take the label in a negative way. They can sometimes decide that the label defines their life and limitations. As a consequence, many diagnosed teenagers simply stop striving for academic or social goals.

Much as I don't favour withholding a diagnosis from a child, I'd be more inclined to keep things quiet if the child was a teenager. It's still worthwhile organising special classes but it's not a good idea to the let teenager in on the reason why these classes are being arranged. If you don't tell, they'll draw their own conclusions.


Early Adulthood
Like the teenage years, early adulthood can be a dicey time to reveal a label. Young adults are struggling with a different set of social issues such as dating, tertiary education and starting work. Rebelliousness isn't as problematic at this age but depression is. Handing out a label at this point is almost like handing out an excuse to stop trying.

Many young adult aspies seem to like putting "road blocks" in front of themselves. They'll talk about a problem, such as not being able to find a job or a partner. Then, when given advice, they'll find a reason why they can't use it. For example, they'll say that they can't get a job because they haven't got a suit. You'll offer to buy one, but they'll find some other excuse like "I don't look good in a suit". If you press against this logic, they'll resort to less and less sensible/logical arguements. In reality, they're depressed.

The label of aspergers should really be presented when the person affected is feeling positive. Aside from study assistance, it's generally uncommon for financial assistance to be given to "early adult" aspies. In that sense, it doesn't really help anyone to reveal the label.


Mid Adulthood and Later
By about mid-adulthood, people are settled into their ways and nothing is likely to have a great deal of negative impact on their self-confidence. They've either been successful (or unsuccessful) in life, love and work already.

It's quite common for adults to discover that they have aspergers because one of their children is labelled with the condition. That's how it happened with me. The initial reaction isn't one of shock, though a little bit of denial is common. The main reaction however seems to be relief. The label finally explains things that have occurred throughout our lives.

Adults in this siutation often say that they wished that they'd known about it earlier. I know that I did. Unfortunately, the truth is that we probably wouldn't have accepted it had we known earlier. Worse still, knowledge of what we are may have changed "who" we are. It may have resulted in depression or other negative emotions.


Summary
I guess the main message of this post is that the best times to reveal a label are either early childhood or mid adulthood. Anything in between increases the chance of depression or non-acceptance. Since most adults would have preferred to know about the condition earlier in life, it follows that the best time to tell is probably around ages 5 to 10. If the condition is given both a positive spin, and a healthy dose of "indifference" (ie: telling the kids that it doesn't matter - and that it doesn't change who they are or what they can be), then the overall reactions and long term effects are positive.

Friday, April 24, 2009

Article: Reading Facial Expressions (Smile Spotting Test)

The BBC has a really interesting test on its web site at the moment. It's all about whether or not people can spot fake smiles versus real ones.

I figured that since it's part of the diagnostic criteria for aspergers that we have problems reading non-verbal cues, it would provide some insightful results.


Real versus Fake Smile Test

The test shows you 20 videos of people smiling either real or fake smiles. You can't replay the smiles until you've finished voting but you can spend as long as you like thinking about them before you choose your answer.

I expected to do badly but in fact, I did really well. I got 19 out of 20 correct.

You'll need a flash enabled browser/computer to do the test.

My Secret (Don't read this until you've done the test yourself)
At the end of the test, it asks you to indicate what clued you in.

In my case it was not the smiles at all. It was other head movements (like shaking it) which indicated that the person had just heard a joke. It was also the speed of the smile. A fake smile is slow and controlled whereas a real smile is spontaneous and fast. It's out of the persons's control.

What it all means
Ultimately, this article causes me to question whether or not people with aspergers have as much difficulty with non-verbal cues as the literature suggests.

  • Perhaps we just take longer to think about it. In this case, the length of time available to us matters and the test results don't show the outcome of high speed selection.
  • Perhaps we learn as we get older - and I'm doing much better now that I would have done ten years ago?

  • Perhaps it's just a function of our naievity. I'd been told that some smiles were going to be fake, so I was expecting them - and suspicious of all.

Whatever the reason, the test and the results are very interesting.

Monday, April 20, 2009

Another Personality Test: Enneagram

I'm always interested in personality tests, mainly because when a lot of aspies do them, patterns start to emerge. I'm not entirely a believer in them but that doesn't make the patterns any less fascinating.

Anyway, here are my results from the Enneagram test.
There are a couple online.

In this test, I got equally 1 (Perfectionist) and 5 (Detachment). I've already noticed that a lot of aspies who do this test seem to score 5.
http://similarminds.com/test.html


Main Type
Overall Self
Take Free Enneagram Personality Test


Enneagram Test Results





Type 1 Perfectionism

||||||||||||||||||||
90%
Type 2 Helpfulness |||||||||||||||| 62%
Type 3 Image

Focus
|||||||||||| 50%
Type 4 Hypersensitivity |||||||||||||||| 70%
Type 5 Detachment ||||||||||||||||||||

90%
Type 6 Anxiety |||||||||||||||| 70%
Type 7 Adventurousness

||||||||||
34%
Type 8 Aggressiveness |||||||||||| 46%
Type 9 Calmness |||||||||||||||||| 78%
Your main type is

5

Your variant is self pres
Take Free Enneagram Personality Test


In the other test I tried,
http://www.9types.com/newtest/homepage.actual.html

I scored 4 (The Artist. The intuitive, reserved type).

The second test isn't quite as good as the first.


In the end, there's a lot more detail about what each of the personality types means here;

http://www.enneagraminstitute.com/descript.asp

Unfortunately, since I seem to be types 1, 4 and 5, it's a bit difficult for me to figure out exactly what kind of "beast" I am.

Monday, April 13, 2009

The Human side of the Aspergers Diagnosis - Part 1: Parents

Introduction
The aim of this series is to examine the parts of the aspergers diagnosis which are normally overlooked in the textbooks. There's always a lot of information on the criteria and the tests but there's not a terrible lot of material on the reactions.

I'll try to cover the reactions of parents, others and the diagnosed aspies themselves. If I think of some other groups along the way that need to be covered, I'll try to do them justice too.


Parental Reactions
Parents often have very extreme reactions to their child's diagnosis. Depending upon the parents, their reactions could be opposite. Indeed, when my son was first diagnosed, my wife and I experienced the "opposites" reaction described under "relief".


The Quiz and Denial
One of the biggest problems with aspergers is that there is no "litmus paper" test. On the face of it, Aspergers often gets diagnosed with a quiz and a bit of observation. This makes it very easy for parents to deny the condition.

After all, it's like someone doing an "am I a good lover?" quiz in dolly magazine. You can skew the results any way that you like. It doesn't look all that professional.

No parent ever wants to admit that there's something "wrong" with their child. It's hard enough when it's a broken arm or cancer or something else that you can see or x-ray but when it's mostly "invisible" and it's "incurable", it leads to denial.


The Sins of the Fathers
One thing that Doctors often leave out of the initial diagnosis is any mention of the condition being hereditary. This isn't left out because it's incorrect but rather because it can provoke strong reactions in the parent.

Initially, the parents are upset and in denial about their child but once the "genetic truths" come out, the finger starts to point squarely at one parent or another. The finger pointing generally isn't done by the doctor and it's usually implicit but neverthless, it's often taken as a "threat" by one or both parents. They'll often strengthen their denial by pointing out that "I never had these sorts of problems", either forgetting that they in fact did, or forgetting that aspergers presents quite differently from one person to another.


Relief
Often, for the mother, the diagnosis can reaffirm a feeling that "there has been something not quite right". Mothers tend to have an instinct about these things and they spend enough time with their own children and with other people's children (in mother's groups, school and preschool groups), to know that there are developmental differences between their child and others.

This is much more difficult for working fathers to spot. They're not home as often and they rarely see their children in social situations. The problem is exacerbated if the father unknowingly has Aspergers himself. For a start, he will probably have avoided many of the social gatherings which provide opportunities to see his child relate. He will be less likely to pick up non-verbal cues and may not necessarily see danger signs in his child's play. He will also tend to see only a repetition of the same sorts of things that happened to him in his youth. This makes it easy to dismiss the condition as "normal".

Having one parent who needs the diagnosis to explain issues with their child while the other parent dismisses/denies it as "normal" can lead to all kinds of unsettlement. You should not allow this to continue for long as it's detrimental to "family health". In my case, the cure was simply for me to be asked to read parts of the textbooks which I responded to with; "this sounds more like me than my son".

After passing that response, I was told about the genetic link and it all began to make sense. After all, even aspies who unknowningly have the condition can relate to feeling "alien".

Settling Over Time
As a general rule, parents settle over time, though for some the denial continues and they don't ever use the label. This is particularly true for grandparents. In the case of grandparents, it doesn't matter that they don't accept the condition because the label itself won't change their love for their grandchildren. In time, they'll learn to overcome many of the issues of aspergers (such as not using metaphors/figures of speech), just as the child will improve their interpretation.


Non-Acceptance
There is a problem with parents who don't accept the label. Non acceptance of a label by a parent translates to non-acceptance of funding and assistance. This can be quite damaging to a child's education and social development. Similarly, such non-acceptance can lead to some abusive parents attempting to "bully" their children into normality - or worse, attempting to "cure" the behaviour with dangerous therapies such as chelation.

Working with the label provides a lot of benefits, not the least of which is a settled home-life for everyone.

Thursday, April 9, 2009

Article: Just Plain Fed Up

The Curebie debate continues to rage and while it's not normally a thing I'd get involved with, there's quite an intelligent article from Tiff on Life on the Spectrum

The article is called;

Just Plain Fed Up
http://lifeonthes.blogspot.com/2009/04/just-plain-fed-up.html

It walks the fine line between curing and acceptance and advocates neither. If it advocates anything, it's an end to advocacy. There's no doubt about it Tiff would certainly investigate a cure if one came along but it's this line that makes her different;

I'm not shinning a positive light on autism, I'm shinning a positive light on my SON who happens to have autism. He has a lot of gifts and I refuse to walk around looking like I've just attend his funeral so people can throw money towards a cure

I'm not sure that I agree with a cessation of all advocacy. After all, it's advocacy that gets ideas off the drawing board and into real life. I do however agree with Tiff's sentiments. Those with the condition or those who are caring for a family member with the condition are best placed to present their "individual faces" of autism. Nobody is really up to the task of presenting a single unified "face of autism" because there is no unity. Everyone is unique.

The Cure
Right now, there is no cure for autism, just a bunch of dangerous and untested theories and therapies. There's no point in a curebie debate (to cure or not to cure) simply because there is no cure.

I'm also not terribly interested in throwing money towards the search for a cure because I'm not convinced that one will be found. I'm even less certain that I or my children would want it if it were found.

Of course, I accept that there are people out there who would do anything for a cure but lets face it. If they announced a cure tomorrow, it would still be ten years before it reached the common people and by that time, most of our affected children will be grown up and able to make the decision for themselves.

I'd much rather see the "search for a cure" money being put to use providing better facilities for the children and parents with autism. They need support now, not dreams tomorrow.

Acceptance
Tiff puts her finger on the crux of the whole thing. Acceptance. That's what makes the difference between a good parent and a great one. It's obvious that she's not only accepted her son's condition but is also able to enjoy the little touches that his unique gifts bring.

There's also great followup article on Saved Aspie, called;

The Cure Debate Continues
http://savedaspie.blogspot.com/2009/04/cure-debate-continues.html

This has some interesting real-life recollections about meeting the parents with the wrong attitude and it's well worth a read.

Normal is just so over-rated. Instead of trying to force your aspie to fit into the "normal box", why not try to see them for the amazing people that they are. There's a good reason why many aspies don't want to be cured.