True Story: I Have Aspergers

Can you tell us a bit about your background?
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

17 Comments

emma emma!

thank you for this interview! despite it being about a thirty something woman, i could easily relate some of her answers back to children i work with at my childcare centre. what really spoke to me was jessika's part about the background noise when she is with her friends. i immediately thought of this little girl i work with who has severe autism. i agree that there should be more research about female's diagnosed on the austism spectrum.

this interview made me think & it has given me some ideas on ways to work with the child previously mentioned, so thank you both. i'll be sure to share this around!

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Helen

Two of my friend's have Asperger's and I never would have guessed until they told me! People seem to assume that anyone with autism is completely abnormal, and it's just not true. They're a little shy around new people, and you sometimes have to explain things a bit more fully (like jokes), but you really can't tell they have it.

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iris

My youngest brother has Asperger's, and it's often broken my heart watching him grow up. Things he hasn't realized about himself until high school (i.e., he rode a 'short bus' to elementary school, bullying, etc)- things his socially-aware siblings have been painfully observant of. It makes you more sensitive to people bullying others for their 'weirdness' in general.

My colleague is doing some [social] research on "How teens and adults on the high-functioning end of the autism spectrum use social technology"…and it's really cool 🙂

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Michelle

Have you heard of the Son Rise program at all? I just bring it up because you mentioned that you got angry when you heard that autism could be "cured." My boyfriend works for that program and apparently it makes a HUGE difference in kids who are affected by autism spectrum disorders or other mental disorders. I have definitely heard the word "cure" in reference to that program, so I just wanted to know what you thought of it.

I was skeptical, but it's a very different approach from the traditional approach given in schools here, which seems to be basically to teach kids how to act like they can function normally – the typical American problem of curing symptoms but not cause.

I don't have any opinion either way, I just thought it was interesting. I understand what you mean when you say that Asperger's is a part of you, and I understand your not wanting to change that. But for some people, especially children, who really have a hard time functioning on their own at all, maybe there are things that could help?

Anyway…this was a great article. I'm going to save it. I have a piano student with Asperger's and I had a really hard time getting him to focus on certain things at first, but I'm learning along with him 🙂 I actually probably wouldn't have realized he had any kind of disorder if his mom hadn't told me in advance; now that I know, I can see it and work with it.

Woah, sorry for the long comment!

Thank you so much for sharing your thoughts, Jessika!

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Marvin the Martian

Mine is very mild. I like it because it has made me quite successful. She's right – it makes you who you are, so it's not as if you'd even want to be "cured." I'm lucky because it enhances certain abilities while not impairing others much. It works for me. 😉

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Mary

Amazing article. I, too, wish there were more information on women with these disorders. When I think about Aspergers, I tend to picture a guy just becuase it seems that all the research and discussion seems to center on males.

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Jessika

@Michelle
I am familiar with Son Rise & ABA. Both state that the use of the word "treatment" isn't a true depiction of what it's about. Rather it's about learning, re-setting behavior where possible, modifying whatever else while trying to introduce new solutions. This sounds very neat, and in all good conscience, I'm not going to be the one to claim it to be nonsense. My problem is one of definition. What are we "treating"? Why are we "treating" it? What does using words such as a "recovered" autistic actually mean? That you can fix neuropsychiatric disorders if only you have the right approach early enough? Everyone with Asperger has, obviously, been a child and noticable onset is around 5 years of age. It's growing all the notable as the demands of being socially able come to enclose you earlier and earlier. I got by. I found areas that could carry me and help me endure but it was certainly not easy or simple. Only now am I realising exactly how big of impact it has had on my life.

I know people that are severly disabled by their disorder. They experience problems with basic functions such as showering, eating, cooking, cleaning. Holding a steady job is not even a consideration. If they, or parents with a severly autistic child, seeks out a program such as this and emerges with new skills, well, I'm not going to deny them the benefit.

Support resources vary as well but most focus on coping skills and learning new ways to get around in your world.

I've seen, and unfortunately experienced, how you can be mis-used and abused in the name of "treatment" (whatever the definition).

I'll always hold what I deem to be a healthy reluctance and suspicion to the therapeutical world that looks onto the individual with the idea that anything even remotely deviant must be changed. This said, I DO realise how disabling autism spectrum disorders are. A) I've seen them in others and B) experience them myself but in ways less obvious. When you are high-functioning, it is extremely difficult to persuade people that you do, indeed, need help.

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Ginger Jane

Like some of the other people commenting here, I have family members who are on the Autism spectrum. It's awesome to here an individual's insight into their experience. Thanks so much for being so honest!

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Jessika

@Helen. Jokes. All I can say about those is hold the irony please. Especially in writing unless you use emoticons to go with. I can get seriously confused if someone is being ironic without any hints of it being so.

@Iris. Internet is a godsend! As is Facebook etc. I have alot of online friends that has become "real" friends although I hesistate to even make such a distinction. The border between my online friends and those I see in the flesh is fluid.

@Mary. The tendency to focus on men is pronounced within medical science. Now it is becoming evident that heart disease (etc) is manifesting different in women. There's also strong evidence that neuropsychiatric conditions is the same. Whereas boys can develop anger management issues, girls end up hurting themselves. As for me, I saw the computer wiz before myself as well when I got the diagnosis. I was a far cry from that. Hopefully more studies will focus on women.

@Thanks to the rest of you for appreciating the interview. Took a while to get myself organised enough 🙂

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Caiti

Thank you so much for this interview – I am in grad school for speech therapy and work with many kids who are on the spectrum (about 10 years & younger) and wonder how much they pick up on, as well as, what adult life will be like for them…Like you said, you are but one, and each is different, but I loved hearing your story…Thanks much Sarah & Jessika!

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Jessika

@Caiti,
As I understand it we all find ways to compensate for what we are unable to do. I'm terrible with names and with faces (facial blindness). Although emotions are recognizable, I can't really see someone and think oh yeah, I know him/her. Rather I remember details about the individual. I recently attended a big party. Tons of people, I had only met a few before. I identified people by what I heard from them. X was wearing red jeans, Y was a museum administrator etc. When I read a book or watch a movie I need to watch/read twice. First I noice detail, then the overall intrigue.

It might be worth remembering that finding motivation might not be the easiest. I know I've yielded in social settings where I just don't care about the social ritual. Not that I can't do what I find to be boring if it has a point (like cleaning, washing dishes) but some things just run by me. At times I wish things could be different and that I would crave more of that which "ordinary" people do.

To the neuropsychiatrist and others within the field I'm a clear aspergian. To them nothing was really new, which was a relief.
To outsiders it's not really noticable. I've learnt alot of social codes even though participating isn't the easiest.
Knowing that you can get by very well in adulthood is part of my problems with "treatment", use the word learning and/or pedagogy and I'll be happier. There are some literature available now written for aspergians. Handbook on how to handle the world and manage the pitfalls as best you can. Tony Attwood's book The Complete Guide to Asperger's Syndrome is a good resource.

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Lanika

This made me cry a bit. My younger brothers are 13, identical twins, and Autistic, one of them has Aspergers. And he is probably the most empathetic person I'll ever meet. He's sensitive to touch, and does not like to be hugged or cuddled. But whenever I cry in front of him (it takes physical manifestations of an emotion for him to realise what mood you're in. Crying, laughing, etc.) he gives a tiny reluctant sigh and says "Lanika, I know you're upset, so you can hug me." And then he leans in rigidly with his hands at his sides and lets me hug him. On really bad days for me he'll even try to rub my back (it's kind of a mechanic windshield wiper motion because he doesn't quite understand why people do it or how it feels, but he's seen it done and he mimics it)
Thank you so much Jessika for sharing your story, so many people haven't even heard of Autism, I feel like I spend my life trying to educated people about it. I worry sometimes about how my brothers are going to grow up and be treated in this world, but hearing accounts from adults with Aspergers and Autism (like reading the autobiography "Look Me In the Eye" and your story) make me really hopeful. Thank you to all of the other people with Aspergers who posted links. I will be checking them out and sharing them with my brothers.

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Jessika

Lanika:
Before my diagnosis, I DID believe the misconception that Aspergerians lack the ability for empathy. I guess I did so because my idea OF empathy was pretty black and white. Either you have it or you're a sociopath (very simplified). Looking back it seems obvious that it was due to a lack of identification on my part and partly the reason why the diagnosis came as such a shock. Now it is about the first thing I try to relay. Aspergians do NOT lack empathy, they/we just show it differently.

I'm also sensitive to touch, to sudden noise and light. I am not all that fond of the "hugging culture" where you hug just about anyone, even when you meet for the first time. I save body contact for those I know. If someone makes a sudden movement to touch me I'll shy away. This said, I like hugging my boyfriend etc., but it's because we know each other so well. The same goes for my friends. And he knows that my reactions are not due to something he does, it's just a thing.

Most universitites offer accomodations to students with disabilities now (including neuropsychiatric disorders). As hard as it might be to ask for those accomodations, it might just help you through an education. Many excel academically but unfortunately work places have yet to develop sympathy and understanding. I worked in a highly stressful environment for years. Looking back I shouldn't have but I did. I would and could have done much better (long term) in another work setting, something all realised a bit too late. It is not achievement (read actually working) that someone with Aspergers finds difficult, it is the need for social activities. Unfortunately, too many companies/work places, focus greatly on your social ability, even in cases where it is not necessarily necessary.

With help there's also every chance that you can manage a household and living on your own. My biggest problem is time conception. I love being organised but can have problems getting myself organised without someone reminding me. I get lost in other things.

For short, the future for your brothers isn't dysmal. Any and all can thrive given their special circumstances.
To the neuropsychiatric team that I saw I am a very clear Aspergian although very high functioning. Unfortunately I burned myself out on trying to be "normal".

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jprp

What an amazing interview, I have shivers reading it, My fater passed away when I was 3, but I have recently found out that he, and many of his family members have aspergers. I didnt really know much about it. With out belitteling anything youve said, I can relate to so much in here, and wonder if I should maybe be checked. Iv'e always been "the odd bird" along with many many many of the things youve said here. It's something to think about at least. Although I wouldnt even know where to start to get a diagnosis without sounding like a hypercondriact 🙁 Thank you for sharing 🙂

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Jen

Jessika, that you so much for sharing your story. I know I certainly learned a lot! I appreciate your perspective. My cousin's son has Aspergers, and sometimes I just don't know how to respond to him. Your interview has helped me figure that out.

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Jessika

@jprp: I'm really not the best person to answer the question of what to do. I was referred to a neuropsychiatric evaluation on the strong recommendation of the psychiatrist I was seeing for relapsing depressions. I concurred with the referral but the results did come as a shock. It never came to me that part of my problems could be due to a neuropsychiatric condition such as Asperger. People can be odd and, permit me the use of the term, quaint without having any condition. I've noticed that many people that feel like outsiders and "odd birds" fight for a referral that it seems difficult to get. If they get one, they end up waiting forever. This said, Asperger IS a inheritable condition. There are plenty of "odd birds" in my family, along with mental illness. I'd recommend you to see a psychiatrist initially to discuss your family history of neuropsychiatric conditions and any history of general mental illness.

@Jen, thank you :).
That was the purpose of doing this interview, to increase understanding. I'm happy that it gave you some avenues in understanding your cousins son. Makes it all the more worth it. Good luck!

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