I live in Sweden where I was born. I have been living here and there though, the US, Japan, and I’ve travelled extensively. (Looking back, I travelled so much because it was easier to be a stranger in a foreign country than a stranger in my own) My parents divorced when I was 11 years old. It was a very messy divorce.My father slipped into his own world, my mother into hers. My sister and I fended for ourselves.
Looking back now I can see the early signs of Aspergers dating back to preschool.
For those of us who have never heard of it before, could you tell us about Aspergers syndrome?
First of all, I will refrain from using “we” when speaking about Aspergers other than in this section. The width and depth of problems are wide. What is “my” Aspergers is not someone else’s. Yet, those diagnosed do share a lot of similarities.
Aspergers syndrome is, clinically speaking, part of the autism spectrum disorders. It was first identified in 1943, by Hans Aspergers. Then it was practically forgotten. Autism came to be, not about autism as a ‘brain disorder’, but autism as a ‘mother and child bonding problem’. Tons of parents were vilified.
Diagnostic criteria are dull and quite honestly, I still find them horrific to read. Anyone who wants to read about the specifics included in an Aspergers diagnosis can search DSM-IV, the code is 299.80.
It is characterised by “qualitative social inadequate behavior” (as it’s stated). Let me tell you that this is a huuuuuge area and the variation is very wide. This can mean avoidance of eye contact, gestures or facial mimic, wrong speech intonation, many describe themselves as clumsy and with sensory impairment. All will have some sort of intense interest or fascination in something. This may be the world’s flags, the geology of volcanic rock, cooking, or some special historical event.
Diagnostic criteria are required to classify who has what illness and who hasn’t. Yet, seeing yourself described in the dry and clinical tone of medical lingo, I always feel “That Is Not Me.”
Yet it is. I have some intense interests and when I get interested in something new I am like a sponge, soaking up knowledge. That made me very academically successful. I fail to understand the subtext of social environments or I don’t get what is the ACTUAL topic until waaaay too late. I’ve dropped the ball so many times that I’ve gone home and pulled the blankie over my head and stayed there.
Do you remember a moment when you realized that you interacted with people differently and viewed the world differently than other people?
I’ve been considered an odd bird all my life. I never did well in team sports, or team activities for that matter. I was always content doing things on my own, in school I was partially bullied and partially excluded, picked last in team selections in gym class. I was born in the 70’s, the idea that you could have a neuropsychiatric disorder was barely thought of.
I did seem normal but beneath the surface it was a struggle. Whatever I tried to do, in terms of social activities and to make friends, I always failed. And I couldn’t understand what I missed and why I failed.
I studied behavioral science at university along with Asian languages. Behavioral science is a perfect thing to study for someone with Aspergers. I’m great at it, I’m a great observer. In hindsight, I can see that I was teaching myself proper social behavior.
The real understanding for myself and a new found kind of acceptance came with the diagnosis. Wow, I was normal! By Aspergers-means I had done well. I have two university degrees and I can discuss anything. Growing up, there were so many things you were supposed to like and do. I did tag along with others but found little or no enjoyment in it. I just didn’t get the point of doing stuff just because everyone else did them. I tried, but I guess I looked too out of it to be taken seriously.
When were you diagnosed? What led to that diagnosis?
I was diagnosed last year, at age 33. I’ve suffered from relapsing depressions for years and my psychiatrist suggested a neuropsychiatric evaluation so that we had covered everything. I couldn’t keep a red thread in much of anything, she suspected ADD or ADHD which can be medicated to provide some relief. I wasn’t prepared. With the diagnosis conference came shock, then dismay, then relief.
A lot of people seem to think that a neuropsychiatric diagnosis is made quickly. Nothing can be further from the truth. My own took 3 months with some interviews and psychological tests.
What happened after you were diagnosed? Did you start taking medication or going to therapy?
I was quite surprised after the diagnosis. I had envisioned many things, but Aspergers was not one. I had imagined ADHD, ADD, sensory overload. It was a relief that my odd-bird-behaviour and that all the years of exclusion and feelings of not fitting it had a name.
With the diagnosis came a new approach to life. Since Aspergers is life-long you’re not prescribed medicine unless you have a sub-diagnosis of an OCD-kind nature. With illness, medicinal science assumes that you are sick – you take medication – cured. There’s no cure for Aspergers. At this point, I can’t say I’d want to cure myself either. As intriguing as the human being is, this is who I am. Odd bird or not.
How does Aspergers affect your daily life?
It affects everything in one way or another. But first of all, it should be said that you can demand so much of yourself that you suppress your own needs completely.
I like it when things have a beginning, a middle and an ending. I’m not overly thrilled by surprises. I can handle them but I’m not thrilled. When someone says I’ll be there “in a bit”, I want to know what “in a bit” is. Is it 5 10 20 minutes? Or I’ll see you later in the week. What is later? Is it Thursday at 10? Wednesday at noon? A decisive time and place is better.
Recently, I’ve had more incidents where I notice that I completely missed the gist of a conversation. I didn’t understand any of it – I couldn’t read between the lines. The topic of conversation and the response didn’t make sense to me. The social codes of society run in some kind of code that I don’t understand.
My cognitive function is low – my working memory. During my evaluation I was asked to draw a picture from a copy of that picture. I did. Then I was asked to draw the same picture from memory. I couldn’t. After 15 minutes and a bunch of stuff in between I could draw a perfect copy from memory. Since I don’t trust my memory I don’t drive, I carry notebooks and cellphone at all times. It becomes worse when I’m tired – everything from speech to memory.
I have a small group of “real” friends. I love to meet them out for coffee but after about an hour I can no longer filter out my friends’ voices from background noise. This is really disappointing because it has become progressively worse.
I am very particular on certain things. It’s important that clothing “feels” right, the same with food. For some reason cereal is disgusting, yogurt isn’t and for periods of time I can live on a specific food and then move on. The need to eat the same thing has lessened, my live-in-boyfriend is not so happy about the two weeks of chicken tikka.
How do feel when people say that Aspergers and other Autism spectrum disorders can be cured?
It pisses me off. It pisses me off so much. But then people have suggested to me that all this is a mistake. “There’s fish oil to improve memory. You’re so talented, all the time you spent at university. You should see another doctor for a second opinion.”
There are attempts at “curing” people with CBT, cognitive behavioral therapy. On a social level, some people are being taught how to keep eye contact, hold body posture, use voice intonation. correctly. Scientists are identifying the causes of autism to be on neurological level. People with Autism are wired differently. Any Autism spectrum disorder presents at around 4 or 5 yrs of age. Around this age the demand on children for more social activities begins. There are children, like me, who just doesn’t understand what the point of being with others if you find them needless. I understand that parents want their best for their children. They hear “syndrome” or “Autism spectrum disorder” and they just panic and go looking for any attempts for a cure.
Some people do suffer greatly though. I do understand their desire for cure. They usually have several diagnosis. Loneliness and social isolation along with ADHD can be devastating.
Now, knowing what I know, if you’d take away Aspergers from me, I wouldn’t be me. That’s not to say that Aspergers is a peachy existence. Life would ultimately be easier without it, but it wouldn’t be me. I’d like to see more research on women with Aspergers, or women with any neuropsychiatric disorder. Research to date has focused on men. There’s a high degree of evidence that it manifests differently between genders.
Any advice for anyone struggling with a spectrum disorder? Or for those of us interacting with someone who has a spectrum disorder?
Ask for help on where to find local resources available to provide assistance. Ask for help remembering or keeping a schedule or eating or showering. Needing help is not shameful. I’ve been getting a lot of help, especially in regards to memory. I was losing a lot of weight since I was forgetting to eat.
Don’t spell Asperger wrong. It is Asperger, this is a touchy subject. Aside from many being word police, this is really a thing. Forget whatever B you want to put in there, remember the P.
Remember that Aspergers isn’t always obvious. It doesn’t show with me which surprises people when I tell them. “But you um eh, uhum, look so… um, normal. ” Well yeah!! Of course, there are people with the more classic Aspergian features like voice intonation, lack of eye contact. Just let it be.
Just because you have Aspergers doesn’t mean you’re a geek. Don’t imply that it was your assumption. It’s already well known that the common idea is that of the geek hermit found in front of a computer.
If someone goes off on their special interest, it’s okay to interrupt, but do it with some compassionate understanding though. This person just opened their heart to you.
A person with Aspergers, who finds social codes difficult, will show empathy differently. It is a common misconception (very common and it makes me furious!), that Aspergerians lack empathy. I’m a very empathic person, I will do anything for people I care about. Most often I need to think about the proper approach, making what some might consider an inappropriate break, other times I act intuitively. First I think pragmatically, then emotionally.
Do you know anyone with Aspergers? Any questions for Jessika?
photo credit: Sara