There has long been limited knowledge about adults with Asperger's syndrome, and there is a lot of prejudice against people with this diagnosis. Some people with Asperger's syndrome are open about this, while others are more secretive. What really plays into why some people with Asperger's Syndrome are so open, while others are not?

Image: Dreamstime (with licence)



This is the theme of a new guest post from Gustav Koi who himself has Asperger's syndrome.

 

Little knowledge about adults with Asperger's

He writes: 

For me, it has been quite natural to be open, because I like to communicate things with others.





And then I also think it has something to do with personality. Disseminating knowledge is important when it comes to all diagnoses, and Asperger's syndrome is a diagnosis that people have known very little about, since it is a relatively new and complicated diagnosis.

When I received my diagnosis in 2009, I quickly realized that there was little knowledge about adults with Asperger's.





It was children who were most focused on, and most of what was written about the diagnosis was in connection with children and adolescents. It surprised me that the information was so limited about Asperger's syndrome in adults.

 

There are few autobiographies of people with Asperger's

Some time after I was diagnosed, I started writing an autobiography. I did not know who would like to publish such a book, but searched around. When I finally came over Spiss publishing house, they were interested in the book project.

 I had limited knowledge of the diagnosis and the people who had it at the time, but as I wrote, I learned a lot, including about myself.

As I said, there was not much to read from the diagnosed even when I received my diagnosis. Although a good deal had been written about children with the diagnosis, there was little to be gained from the adults with the Asperger's diagnosis, at least in this country. There was also little written by professionals about adults with Asperger's as well.

A few months after I was diagnosed, I started writing my autobiography.

I learned from Spiss publishing at the time that I was the first adult man who had written an autobiography here in Norway. I think this was strange.

It was supposedly a man who was a little older than me who had also written a kind of biography, but he was from Denmark.

 

A lot of prejudice against adults with Asperger's

Then I wrote some articles and other writings about me and the diagnosis, and about what I was doing before I started with my second book.

What surprised me the most was that so few adults, especially men, had so little to offer. Therefore, I wanted to find out more about the diagnosis, and a year later I published my next book entitled "The Hunt for the Truth About Asperger's Syndrome" (i.e., Norwegian book).

One reason why there has been so little openness about Asperger's syndrome in adults may be that there is a lack of knowledge among most people about this topic, also within the health care system.

Many with the diagnosis have been seen as incompetent and unable to perform a normal job. The work rehabilitation service has also been clearly affected by that attitude, but in recent years it has improved.

Some have also been bullied and discriminated, and have been more or less frozen out of a workplace. Some have also stigmatized people with Asperger's as a group of more or less lonely, and irresponsible people.

 

Need for a more nuanced picture

An example of discrimination was the train driver who had worked flawlessly for about 30 years, but he struggled with something he was trying to figure out. He possibly thought it might be ADHD. An examination was performed, and he was diagnosed with Asperger's syndrome. After a while, he was told by higher authorities that he was no longer competent to be a train driver. This example is about lack of knowledge.

Much of this I have mentioned above has given a skewed picture of people with Asperger's. The picture is much more nuanced than that. Therefore, I have wished that my openness could be help for others with the diagnosis, but also for professionals and others who have worked with people with Asperger's.

It is also said that there are at least three types of people with Asperger's syndrome, and that is:

 

  1. The passive type
  2. The active type
  3. The distant type

I think for my part that I can be all three, at least I have been all three before. Now it's mostly about the active part, I would argue. So I think the reason some are more open about the diagnosis than others is about the personality one has and has developed. At least that's how I experienced it.

 

What some mothers have expressed

Here are some statements from mothers of children / adolescents with Asperger's syndrome, where openness about the diagnosis is the theme.

 

  1. We have always been open about his diagnosis. He's a pretty open boy.
  2. They must accept their condition, otherwise they become anonymous.
  3. Our experience is that openness makes everyday life easier in that fellow human beings think "difference" is fine as long as they understand why.
  4. I think it has something to do with the personality type, not everyone is equally outgoing regardless of diagnosis or not.
  5. I was happy to find literature that could tell her about how Aspergers think and reason, and what constitutes their "difference."
  6. Our daughter has never cared so much about what others think of her, and therefore has no objections to telling others that she has Asperger's syndrome.
  7. It is probably even more difficult for a teenager, at an age where it is so important not to stand out too much, to flag oneself as different.
  8. Reasons for this are that some young people with Asperger's have a better self-image than others.
  9. Young people who have been bullied in the past will not say anything about their syndrome.

 

What do the adults diagnosed say about their openness?

Here are some statements from adults with Asperger's syndrome, where openness about the diagnosis is the theme.

 

  1. I have been keen to disclose it where I think it is relevant. As long as the diagnosis has nothing to say in practice, I do not necessarily feel to disclose it.
  2. When I was diagnosed, I only found things written by doctors, and I think there was a lack of information directly from people with the diagnosis.
  3. The diagnosis has always been a side of me that I have accepted and I have had no more need to hide it than other things that I myself have control over.
  4. Basically, for me, it's like talking about a broken bone or why I wear glasses. I think it's a shame that so many people seem to perceive the diagnosis as a behavioral disorder, or something to be embarrassed about.

 

What have professionals observed about openness

Here are some statements from professionals, where openness about the diagnosis among people with Asperger's is a theme.

 

  1. Personality and traits determine a lot about how open they are, but it can also come from experiences: how they have been met in different contexts and what kind of help they have received.
  2. People with Asperger's are different, just like most people. The diagnosis only says something about a person's understanding of and ability in social relationships.
  3. Maybe it has something to do with both temperament and socialization.
  4. It seems that openness about their own diagnosis, has a lot to do with age, self-confidence, self-esteem, experience and not least the personality.
  5. That some are more open about the diagnosis than others, as far as I can see, also has a lot to say about the interest one has in the Asperger's diagnosis. I also believe that those who can see the positive things that the diagnosis entails, find it easier to be open about their diagnosis.

 

My conclusion

Openness varies as it does in other people. Some have a greater urge to be open because they may have a lot to communicate or convey to others, while others prefer to have the diagnosis to themselves. Age, background, personality and the situation one is in come into play.

- Written by Gustav Koi, private researcher and communicator