A personal experience with Asperger's

I wish people knew 2

2012-01-29T13:17:00.000+01:00

- That some people enjoy alone time

Itactually feels strange writing this post, because for me it is hardto imagine how people can not know now this (Theory of mind, yeah Iknow). But time after time I have been reminded that the world isfull of people, who cant grasp this simple concept.

For me, enjoying solitude is as naturalas it gets. I can relax with a weekend of reading, eat my lunch in aquiet corner of the lunchroom or simply solve the group-projectassignments enthusiastic on my own.

Parents can be a realnut here. At least for me, who grew up undiagnosed, they cant seem tohelp asking me every time we talk “How you found some new friends?Have you tried to attend any parties?”. Each time receiving myexpected answer with an slight disappointment. “But your a student,you must enjoy that time!”. I'm sorry, but my idea of study relatedfun is reading about a exciting bias of human cognition or theprevalence rate of psychopaths rather than consuming toxins in atechno-hell-hole. A bit negative there I admit, but it gets the pointacross.

Recently I was in some corner by myself someoneapproaches with a smile: “Can I sit here”? This was not the firsttime it happened. Now, don't get me wrong. I am not anti-social, I amperfectly capable of sitting next to someone or endure an hour ofconversation. But the point is, that what follows is usuallyinfluenced by the fact that I was approached because this person wasfeeling sorry for me. They simply thought that I had to be miserablesitting there alone so they abandoned there group to be with me. Inone way I admire it. I admire the fact that such loving, caring andempathic people exist, because there are lots of truly lonely peopleout there. But we find our self in this bizarre situation. She issoon surprised that I don't manage to keep up with her attempts atsmall talk and is starting to feel uncomfortable. I was really betteroff before she approached me, but would never say something thatcould possible offend her for her kind hearted action. I think tomyself that even though I preach honesty it's not that simple. I justwish people knew that some people enjoy alone time.

Your child has the right to know

2012-01-19T19:19:00.000+01:00

Photo: imagerymajestic

Several studies empathize the importance of early intervention programs for children on the spectrum. Now, for you someone to be able to benefit from these programs you obviously have had to been probably diagnosed first. That again requires that you crossed path with someone which has the proper knowledge about Asperger's. Unfortunately, as I myself experienced, this is far less common than it should be.

But even for those who have been diagnosed, and who are getting the right attention, problems can occur when parents are reluctant to tell the child about his or hers diagnosis. A few months back I learned about a 11 year old boy who did not know. His parents told his substitute teacher so he would get the proper treatment, but not him! Parents stopping by Wrongplanet to ask if they should tell their child is also a recurrent topic, so this is obviously something parents feel insecure about. I understand that, they may not have lived it, but I have.

The decision not to tell your child (no matter how young he/she is) has three fundamental flaws.

1: As long as the teachers and professionals working with the child knows, and provides the resources, there wont be a problem. So the child does not need to know.

- Wrong. The biggest issue for the psychological health of the child is the feeling of being alienated. The feeling of being from another planet so to speak. No matter how much follow-up your child receives social rules can't be learned in a day. The social interactions will not be properly understood. Even though the child is not likely to say it, he or she will feel different. And without the proper explanation this is a highly negative kind of different.

2: By not telling my child, but protecting him or her, I can keep the child from feeling different.

- Wrong. The child is different, and unless you isolate him or her in a dome with other autistic children, he or she will notice. From your experience belonging to a group might have been highly important, but it probably is not for you child. Tell them they are different in a positive way, rather than trying to hide it. Another important point is that you may not be able to sense that your child is feeling different. It does not matter how good a parent you are, you're not psychic. Realize your own limits.

3: My child is too young to understand at this point. It is better to wait.

- This is an important one. Because this is, I suspect, the initial logic that leads many parents down the path of secrecy. But it is wrong. If your child is old enough to have been diagnosed it is old enough to understand. Your child does not need to understand the mirror-neurons theory or be able to memorize the DSM-IV diagnostic criteria; The message can easily be adapted to the age of the child and is, in it's simplest form: If you sometimes feel different, it is OK. It is not your fault, - you have this wonderful thing called Asperger's.

I grew up without knowing and had several episodes of depression (with suicidal thoughts), social anxiety, and self-harming. My parents did not know about my mental health, but they did not know I had Asperger's either. If they did, and chose not to tell me, I would not forgive them.
Your child has the right to know

The social rules of an aspie-society

2012-01-16T18:23:00.000+01:00

Photo: Stuart Miles

Inspired by my friends at Wrongplanet this post will contain the social rules of my ideal society that differ from the current norm. It's currently 12 but more might be added later.

1: Remember not to look people in the eye, it's rude

2: When speaking to someone at your university or in your class, don't speak about anything that's not directly related to the subject you study, it's rude to bring up your private/social shit.

3: Speak your mind! If you ask someone "how are you doing?" you ask for a report of the persons state at this time, it is not a greeting. If you want to greet someone say "hi" or "greetings".

4: Do not engage in pointless social conversation at any time. Comments like "have you seen those new ugly shoes Jennys wearing" or "I think Jims gained some weight" are so socially unacceptable that people will spit on you.

5: When speaking to someone, take your time. It's rude to not give the other people time to think about their respond. Up to several seconds is common.

6: It is rude to call someone if you don't have a very personal relationship. Email exist for a reason, use it for everything!

7: It is so looked down on as a social concept to just show up at someones door that doorbells have been removed and doors sound padded so there is no way to know if anyones there anyway. Send an email a week in advance if you want to visit someone! And explain what you want. "I'm coming to visit" is not an explanation but an intent.

8: Any form of action intended to reducesensory input are accepted regardless of the situation (the picture).

9: When employers interview someone for a job, which does notdirectly include customer service, it is incredible rude to asksomeone about their personal life or their social skills. Employersare looking for someone to do the job well, not a new friend or aparty-fixer for the next company Christmas party.

10: Stimming isthought of as a productive and positive recreational activity.Several vacation resorts have classes called “introduction tostimming” as well as yoga.

11: Telling someone that you metyour partner “in real life” and not online on a dating site, orin a game, results in strange looks and mild teasing.

12: When speaking in a group a raise ofhand before you start talking is required. Come on, you learned it inprimary school it's pretty basic.

13: Clothing shall be worn for comfort and functionality. Those who wear fancy clothes that cause discomfort (especially shoes, eg high heels) will be regarded as foolish and wasting their time and energy on such unproductive things.

Back to school special

2012-01-13T14:15:00.001+01:00

Photo: Koratmember

Since this was my first week back at the university, I thought I would write down some thoughts on education.

Several experts have pointed out that if you were to construct the worst thinkable learning environment for someone with Asperger's (or otherwise highly introverted) it would be much like the typical modern classroom.

The school system has gone from an institution where strictly traditional academic skills, like reading, writing, math and memory were appreciated, to put more and more focus on a wide “spectrum” (We like that word don't we?) of skills. We now have teamwork exercises, oral presentations, drama classes and the like. In other words, even though the modern school system is much more including, it isn't necessarily better for us with Asperger's.

From my own memory, I can tell you right away that I found these subjects dreadful. But the main issue was not getting a bad grade in one of these particular subjects. Even though I'm quite the perfectionist I can deal with one bad grade. The problem was how the school incorporated these skill-sets into almost every class. Even where it seemed highly unlikely. Oral presentation in math? - Sure, why not! Oral presentation in chemistry? - Go ahead! A teamwork project in math, yes what a wonderful idea. No, it's not.

If I had been diagnosed at that time, I could probably get some special ed-classes in those subjects. But you know what? - that's not good enough. Teachers need to recognize the fact that by favoring some human traits (extroversion, openness) and incorporate them cross-subjects they are making it impossible for certain individuals too succeed. The irony is, that these are the individuals that would be favored by the old system, and that still will perform the best in university.

Fortunately I'm at the university now, something which I'm very grateful for. Although I have picked one of the few subjects where personal development and talkative traits are still, to some degree, valued. I guess I have myself to blame for that one.

Understanding the social quirks

2012-01-11T14:17:00.000+01:00

Picture by Africa

In his book, The complete guide to Asperger's syndrome, Tony Attwood (p.92) points out that there is a similarity between the process of learning a language and learning to succeed socially for people with Asperger's. This is a point I want to elaborate on in order to explain some behavior and development in Aspergians. In the end I will also take the liberty to assume you’re not Chinese, if this is wrong, feel free to come up with your own example.

When assessing a child for Asperger's a clinician will among other things look for low degree of reciprocity in social interaction and recognition and understanding of social cues and norms. In small children, these characteristics typically stand out and are easy to identify by an adult. In older individuals (youths and adults) however these limitations can be far more subtle, because the normally intuitive knowledge has been learned. Hans Asperger himself wrote “Normal children acquire the necessary social habits without being consciously aware of them, they learn instinctively.... In autistic children social adaptation has to proceed via the intellect...”

It is therefor highly inaccurate when someone makes the assumption that someone can't have Asperger's, or is wrongly diagnosed, because they demonstrate certain social insights and skills, as most (not all) of these things can be learned. This is something not all clinicians are aware of, so if you find yourself wanting an evaluation of Asperger's as an adult, make sure the person you go to has experience with diagnosing adults.

Someone dining in a group can for example notice that the other individuals think they eat too fast. Not because they get an intuitive feeling but because through several years they have learned everything that's needed to identify this potential social conflict. The social norms of dining, the subtle social cues, like a look combined with a light frown and a sudden short break in conversation flow.

Now, you might think that this is not exactly rocket science, and indeed it's not. Formulating a correct sentence in Chinese is not rocket science either. Chinese people do it all the time, without having to think about it even a quarter of a second. However for you to succeed in this task, without first learning the basic words and grammar required or having the natural language intuition of a young child, would either be a tremendous intellectual achievement or an incredible strike of luck.

So do not consider us social retards because we are not. We navigate the social world as a bilingual speaks a second language. Sometimes we make mistakes, we do have to use more mental capacity, we usually have an accent (no matter how subtle) but in the end we can speak fluently.

I wish people knew 1

2012-01-09T19:32:00.000+01:00

Photo: Stuart Miles

-That not everyone enjoys eating with other people

We live in a world obsessed with food. I'm not talking about a relatively mild obsession characterized by difficulty thinking about something else or enjoying another activity, this is obsession at a scale that makes “special interests” seem like something you “almost, kind of, maybe” have some interest in. Food networks, channels, magazines, books, commercials, blogs, stores, “What are you having for dinner today?”, “I just ate the most amazing....”, “What is your favorite meal?”, - Do we really need to incorporate eating as a social activity as well? As the natural foundation of any social gathering? Well apparently.

Some people with Asperger's are known to be picky eaters. As we are sensitive to sensory input this can also affect how we perceive both texture and tastes of different foods. I would not consider myself picky, but I know plenty of others would, since I don't eat meat.

As you probably already know, individuals with Asperger's are also inclined to favor certain routines. Maybe they eat a special dish that day of the week or maybe they are just fixated on those particular dishes at the moment.

Now where am I going with all this? The brightest of you have possibly figured it out. If you haven’t add this to the wonderful cauldron of information; food is generally consumed while being gathered around a table, looking straight at the other people present, and that a lot of us don't like eye contact. In addition add the noise of a group of people having multiple conversations at once, the unwritten social rules of dining, and the potential service-minded waiter hanging over your head. Then there is no need to turn the heat up because in my head that cauldron is already boiling.

I wish people knew that not everyone enjoys eating with other people.

Blog development

2012-01-09T19:04:00.000+01:00

I'm going to include this little post about the development of the blog. That means that if you don't care about the development you should skip this post, as I can assure you that then the following will be rather tedious

- First, thank you for reading the fourth post. I have made a twitter account for the blog which simply is called norwayaspie. I have also changed the left menu so it's no longer in a fixed position (We don't want it to look messy do we?).

In regards to future posts I'm at the moment planning to have four categories or “types” of posts;educational, personal history, amusing and this new “Things I wish people knew”. I will be answering questions in addition to these four types. Now some posts will naturally includes elements of several categories like The path to diagnosis, however I think it is productive to have these categories defined both so you know what to expect and I can try to have some variation in what I post. Keep in mind though that you might strongly disagree with what I consider both “amusing” and “varying”.

Update: There is a problem with displaying the pictures in Internet Explorer, at the moment I don't know how to fix this.

Aspie Alligator

2012-01-08T14:18:00.000+01:00

Aspie alligator is a meme generated from the site memegenerator. Its description says “A relatable meme for people with Aspergers”. Like with all characters on the site, everyone can make a picture, so they vary a lot in quality (some are also made to offend people with Asperger's). I found these four which I both find funny and certainly can relate to.

The path to diagnosis

2012-01-08T12:17:00.000+01:00

Picture by Unidcolor

In this post I will sharemy path to receiving the Asperger's diagnosis. By that I simply meanmy contact with professionals. Tony Attwood has found that it's eightmain pathways to discovering you have Asperger's:
1 Diagnosis of autism in infancy or early childhood
2 Recognition of Asperger's syndrome in early school years
3 The previous diagnosis of another developmental disorder
4 First recognition of the clinical signs in adolescence
5 The suggestion of a conduct or personality disorder
6 Diagnosis of a relative with autism or Asperger's syndrome
7 Recognition of the signs of Asperger's syndrome from the media
8 Employment problems

Mypath was a mixture of four and three. - The first clinicalsigns was indeed recognized in adolescence (although it was certainlynot the first time I felt different) when I was referred to the localpublic child psychiatric clinic for anxiety and phobias. However asmany others I was not correctly diagnosed. Later investigation haverevealed that they didn't even look for it (this was in 2002, andAsperger's was still a relatively new diagnosis).

Instead stimming behaviors(common in autism spectrum disorders) was interpreted as tics (mainsymptom of Tourette's disorder). Now these two behaviors can besimilar, although stimming is usually more repetitive, but there isone big difference: Stimming is voluntary while tics are not. So whenI said that my behaviors were voluntary, they obviously didn’tbelieve me.

My routines, fears, andthe fact that I was very reluctant to travel in the holidays wasthought to be because of phobias. And my lack of social participationwas believed to be because of embarrassment related to tics. Talkabout confirmation bias (the human bias to find what you look for, -confirming your own believes)

I never identified with theTourette's diagnosis (surprise) and it became and extra burden tobear. Not only was it wrong, it also made me to believe thathealthcare professionals knows nothing and only makes things worse.

At the age of 20 (last year) I, as a pure coincidence, read ashort paper on Asperger's. The more I read the more interested Ibecame, because this surely sounded a lot like myself. After lookingup different sites on the Internet I found Wrongplanet (Largestonline community for people on the autism spectrum) and I was amazed.I were reading topic after topic written by these complete strangers,and yet it was like they were writing for me. They were expressingthoughts and sharing experiences identical to mine. Some I had rarelyheard anybody else express, some I thought only I had, and some Ididn't even before realize I had. But here, on this Wrongplanet, theywere a common sight. Like many have said before “the shoe fit”(meaning that I perfectly identified with it).

By now I had outgrown myskepticism towards mental health professionals and went to a privatepsychologist to get evaluated. He confirmed my suspicion: “Youdon't have Tourette's, congratulations you have Asperger's.”Andeven though he didn't say “congratulations”, it sure felt likeit.

Introduction

2012-01-07T23:12:00.000+01:00

The first post. I guess there is always something magical about it. Or rather the opposite actually, they tend to be unstructured awkward posts about how someone have started a blog and yet have nothing to write about. So I'm going to use this post to try to give you (and myself) an idea of what this blog is going to be, and what it's not going to be. I'll also explain one of the choices I've made. If you feel that this is already a bit to long, then scroll down to the last paragraph, you're allowed.

So what's it about

What you probably already know is that it's going to revolve around Asperger's. More specifically my personal experience with it. This is something I want to emphasize as I'm not like everyone else with Asperger's and they are not everybody like me (this should be rather obvious, but you'd be surprised). I will incorporate related things I care about, as well as stuff I think you should check out (Like Tony Attwood's q&a on autism hangout). I will also answer questions if you should want to ask one. As mentioned earlier a lot of the blog will be about personal experiences, but I'm not going to post something new every hour to let you know that “I'm still reading my book” or “OMG I just had the most embarrassing moment”. No. Go somewhere else if that's what you want. Shouldn’t be to hard to find.

Why is it written in English

Yes, it's called norwayaspie and I hope I will get some Norwegians followers since there really aren’t many Norwegians writing about this. However I recognize that we are a small minority and want to reach out to as many as possible. I also want friends at wrongplanet (should they feel like it) to be able to follow this blog.

Just give it to me straight

Personal experiences and opinions. Related information. Answering questions of all sorts.