Wednesday, February 27, 2008

The Aspergers Brand (Getting the Aspie Label)

Subjectivity in Aspergers Diagnosis
There is no litmus paper test for Aspergers. The label is applied on the basis of set criteria (DSM IV) which are determined by subjective analysis. Sometimes that analysis is in the form of questionnaires, sometimes as day-long tests and sometimes it seems to be almost arbitrarily applied by practitioners.

The symptoms of Aspergers vary from one person to another both in presence/combination and in intensity and no two aspies are exactly alike. If anything, the aspie label is quite similar to the online "geek tests" and coincidently, there is a high correlation between geeks and aspies.

This isn't to say that Aspergers is an imaginary condition but rather to say that unlike specific tested conditions where the label describes the symptoms, Aspergers is the opposite. Here, the symptoms describe the label.

An Example: Deafness
A deafness label automatically means that one will have certain symptoms - difficulty hearing and as a result, speaking),

Using our deafness example to illustrate how the Aspergers label is different;

Someone has certain symptoms - difficulty hearing and as a result, speaking - therefore, we diagnose deafness.

This doesn't hold water. A person who has the difficulty hearing/speaking symptoms doesn't automatically have deafness. There could be other reasons.

In the Aspergers diagnosis, if you display the syptoms, then you get the label.

Reactions to the Label
Aspies and their Parents, Spouses etc, often have a wide range of reactions to the new "Aspergers" label. These reactions include; Denial, Grief and Frustration. Surprisingly, not a lot of literature mentions happiness as a reaction - presumably because its not seen as a "real" reaction.

As someone who was diagnosed late in life (after all of my main trials; school, university, marriage, kids, work, mortgage), I'd already accepted who I was. My reaction was happiness because now I have an explanation for why.

Should you get Labeled?
This is the million-dollar question isn't it - to label or not to label. The best answer I can give is that you need to decide what labeling will achieve. In school-age kids, labeling will provide them with a lot of benefits, additional funding, extra time in exams etc. There's a very good reason to be labeled.

Adults, on the other hand, receive no such benefits - except in extreme cases, where they probably are already receiving benefits. Unless labeling is free of charge, or would provide considerable personal "satisfaction" benefit, there's no reason for an adult to be labeled as an aspie.


Adi said...

Great article! (as always).

I'm not sure I agree that there is no reason to find a diagnosis as an aspie. It certainly clears up a whole lot of things and helps one adjust one's life to have a more enjoyable, suitable, less stressful environment. And the support structures (e.g. adult aspie groups) have tremendous value. I do agree that there is no need to "label" - it probably still is best to keep it a private diagnosis, shared with close friends and family.

Gavin Bollard said...

Thanks Adi,

There's no doubt that the support structures for adult aspies provide a lot of value and I'm not, for a second, suggesting that any potential aspies should ignore them.

I guess what I'm really saying is that if you're struggling with the label as an adult, then don't label yourself. Use the support structures as a "suspected aspie".

You should get similar benefit - after all, you'd be using the support structures to ask about your symptoms more than the syndrome itself.

MacGruff said...

I would ask that people also think about some of the future effects of a label for a child.

In our case, our son went through a whole series of labels as we all tried to figure out why he was doing poorly at school while having clearly superior intelligence. We went through ADD, ADHD, OCD, PDD, and finally, Asperger. Well, that last one fits the best - but I believe the real reason is that he is simply not that thrilled with school and does not want to apply himself - when he likes a teacher, he gets straight A's...

Nonetheless, the Aspie label is what he has now. The consequence for him turned out to be that at least one field that interested him was denied him. My son was interested in military service and the military flat out disqualified him because of the label.

Oh, I know, he is probably better off not being a soldier; and the military really does not understand Asperger's etc. They were simply reacting to the formula:

Asperger = Autism; Autism = bad soldier.

All of us who know Aspies, and have military experience, can see that the structure, clear procedures, and hyperfocus abilities of an Aspie can make them into excellent soldiers in some areas. So, they should not be summarily dismissed from service.

The point is, that when you are considering getting a label for your kid, think about ALL the consequences!

Meredith said...

I'm not officially dx'd but my shrink has reviewed and privately approved my "suspicion". This is because an official dx costs tremendous amount of money in my country, and it's OK that I don't like to be called a "poser" online as many self-dx'd Aspies are, but I wouldn't like being dismissed as mentally retarded in a job interview.


Anonymous said...

Oh my goodness! I am in a relationship with an Aspie and I know it for sure after reading this blog, Gavin! I would like to know all about marriage with an Aspie. He is such a good man. But there are these issue I want to be sure I can deal with. Will my needs be met by an Aspie who doesn't understand HOW to meet them? How do I educate him and help him accept himself or at least ME learn to accept these traits and know they are just him. We have both been married before and both want our next relationship to work. Would appreciate any information or comments on this. Can an Aspie/NT marriage work happily?

Gavin Bollard said...

I'll try to answer your questions;

Can an Aspie/NT marriage work happily?

No marriage is 100% happy all of the time and the AS/NT marriage is no exception. There are ups and downs plus lots of misunderstandings. Of course, if you've gotten married, there must be a reason. Love. Sometimes it's easy, sometimes you have to work at it.

If you've both been married before this puts the new marriage under even more strain. The fear of a breakup is less because you've actually done it once and have experience. Plus, breakups happen for reasons on both sides. You need to examine your past and isolate the reasons for your respective parts in the breakup. For example; sometimes unwillingness to forgive is as much a cause of a breakup as "unforgivable" actions themselves.

A major rule of relationships is: people don't change their nature. You can't decide what will disappear and what will change in someone's nature when you marry them. You can however impact their behavior to a certain extent.

This doesn't mean that the aspie won't change (even though traditionally they're much more resistant to changes than NTs). It does mean however that they will take much longer to change and need much more instruction. Nobody likes being ordered around though, so those instructions need to be fairly subtle - but not so subtle that they don't pick up on it.

For example:
1. "I want you to bring me flowers sometimes." - too direct.

2. "Mrs Jones says that her husband brings her flowers every second Friday" - too subtle

3. "I'd love some flowers every now and then, it shows me that you're thinking about me."

- mentioned every second Thursday for a few weeks until it happens, it will work.

Self acceptance is difficult and aspies, who are often perfectionists, may not accept themselves at face value. The only thing you can do is encourage them to embrace their aspieness.

Similarly, as an NT partner, you need to approach a behavioral disagreement carefully. Before you start shouting, try to find out what your partner was thinking. You have no idea how much trouble naievity, truthfulness and social misunderstanding can cause for aspies.

Anonymous said...

I've been happily married to a suspected Aspie for 12 years!