Brian's Asperger's

By Brian R King

Every person on the Autism Spectrum is walking through life on their own road less traveled. We walk often alone encountering countless others who don't understand us and rarely make the effort to. When I get to know someone well enough and trust them enough to share this gift of mine with them I am met with similar comments. "You can't be Autistic you're so personable," "But you're so good with people," and on and on.

When I explain to them that over many many years through countless experiences with trial and learning I've learned how I'm supposed to behave in the neurotypical world. I then explain to them how exhausting it is for me to consistently do many things neurotypicals expect like maintain eye contact, engage in chit chat, participate in conversations about issues I find irrelevant and boring, and do so in environments that are simultaneously overloading my senses.

One of the most heartbreaking things is that by the time I reveal my Asperger's to others they've become so used to me acting in a neurotypical way that they insist I continue to do so. I usually counter with "Yes I can do these things but it's exhausting and often psychologically painful." Acting neurotypical is the psychological equivalent of bending my knee the wrong way. I can do it but it hurts so logically it make no sense to do it. Neurotypicals are fond of explaining away their quirky behavior by saying "That's just the way I am," and in a blaze of hypocrisy they won't extend those on the Autism Spectrum the same courtesy.

I've read countless books in the Self-Help genre that preach a message of being true to oneself and not being ashamed of who you are. But then I read books directed at those on the Spectrum that generally preach the importance of fitting in and encourage the reader to act in a way that is actually contrary to who they are. I suppose being true to oneself and being comfortable enough to be who you are around others is a privilege reserved for neurotypicals.

Fortunately I have some truly wonderful people in my life right now, though very few in number (by choice), that allow me to exhibit all of my Aspie eccentricities and I feel they truly appreciate my quirks and appreciate me. In my mind there is no greater show of love and respect than to allow someone to be themselves. If you were ever to meet me at my most Aspie it would look something like this. . . .

Walking

When I walk you will find me looking at the ground. Were I to look up and take in the scenery around me I'd lose my balance and begin walking any direction but straight. I also feel uneasy and ungrounded. My vision and the part of my brain that determines where my body is in space (proprioception) don't communicate well with each other. Looking at the ground helps me by allowing me to focus on one immovable surface that remains level so I can feel grounded. It also helps reduce the number of things I can see moving around me. My brain often can't tell the difference between whether I'm moving or the object I'm looking at is moving and I can become unbalanced and sometimes feel dizzy. So on elevators or escalators I need to hold on tight to something to maintain my balance. Trampolines are out of the question because the severity of the tickle I feel in my stomach often takes my breath away. Twenty minutes on a trampoline overloads me so much that I usually need a nap to recover.

I also look at the ground because of extreme light sensitivity. Looking down indoors helps me avoid the fluorescent lights, outdoors it helps me avoid the bright sunlight. In the winter looking down is sometime worse because the snow is incredibly bright. I recently discovered (at the suggestion of my friend Amy who's an Occupational Therapist), that sunglasses with polarized lenses might help.

Man was she ever right. These sunglasses reduced the glare of light so much that I could look directly at fluorescent lights without issue as well as look up sometimes when I'm walking. More surprising was that I was able to make sustained eye contact. Amy and I concluded that the white of the eye is likely too bright for me to look at but the polarized lenses reduce the glare significantly making it easier to look someone in the eyes.

Driving

As with walking, driving produces similar challenges. I watch the road or the back of the car in front of me when I drive in order to maintain (as much as possible) the feeling of being grounded. I not only watch the road because the road remains level I also do so to minimize the effect of everything else moving around me such as the other vehicles on the road.

The more moving objects around me there are to keep track of the more panicky I get. When I approach an intersection I'm fine as long as all of the cars are still. But if any car is approaching the intersection to stop or is turning a different direction I get panicky because I now have peripheral input that demands my attention and requires me to take my eye off my visual ground.

I also discovered that looking at the ground serves the dual purpose of maintaining a solid ground and avoiding the brightness of the sunlight. Wearing sunglasses with polarized lenses reduces the glare of light so much that I can look up more when I'm driving. I still look down occasionally when the movement gets to me and I need to ground myself.

Driving to new locations is stressful when following written directions not only because I have to continually check the map but because I need to take my eyes off the road to look at street signs. My stomach gets queasy when I look up and looking for street signs requires me to look up a lot. Even if I know where I'm going I sometimes miss my turn because I'm so focused on the road.

One reason this is a bonus is because I'm so focused on what's happening in front of me I've never caused an accident because when a driver stops in front of me I know it immediately because I'm not looking around. Others have hit me before but it's always been their fault. I do take my eyes off the road on occasion but only when something catching my attention peripherally. I look up long enough to identify it and then look at the road again.

Roads that are not level are interesting because the slightest change in elevation causes me to feel a little tickle in my stomach. Now imagine feeling this over and over again. It's cumulative effect can be tiring. Also when I'm driving, looking away from the road and then look back, I feel the tickle as well. Bumpy roads are the worst because as the car absorbs the shock of the road I can actually feel the bumping in my ears and it feels like someone is pounding on my eardrums.

With all this movement I often find that when I arrive at any destination I find it difficult to get grounded right away. I often step out of my vehicle and stumble a little for a minute or so until I get grounded again. Anyone watching this who didn't know any better might assume I'm a little intoxicated. Yes driving is difficult and tiring but at least I can get where I'm going.

Speaking

I speak in a very formal and poetic manner. I'm also very deliberate in the way I speak and you'll rarely hear the sounds "ummm" or "ahhhh" escape my lips. I rarely use colloquialisms and often refrain from engaging in customary "fluff talk" as I call it. Fluff talk are phrases neurotypicals typically say just to say them such as "Good Morning," "How are you" and so one. Some find "Good Morning" to be polite I find it presumptuous and irrelevant. In my world I'm going to have a morning and that's it. Whether it's good is up to me (I just had an Aspie moment in case you missed it). I'd rather just say "Hi" and move along.

I often feel anxious when someone asks me how I'm doing because I feel compelled to stop and actually do a quick assessment of myself in order to give an honest and correct response. I've learned most neurotypicals don't really care when they ask that question. They're simply engaging in fluff talk in order to begin a conversation. My typical response to the question "How are you" is to respond with "I am, and yourself?" Some people accept this response and move on others request clarification. I'll spare you my clarifications as I've already rambled enough about this point.

Many experts make the mistake of thinking that people with Asperger's typically have a flat tone when speaking. I can tell you that yes I often do. I can also vary it in many creative ways. I have studied public speaking extensively and have learned how to use my voice to effectively get my points across.

I enjoy public speaking because it's more about me talking about what I'm interested in in front of an audience. It's easier in terms of eye contact because I can look around the room and look at people briefly. When people ask me questions all they're doing is giving me an opportunity to talk more about what interests me. This is probably why I get energized from speaking instead of stage fright.

One of my Aspie gifts is the ability to remember sounds and voices the way I heard them which lends itself to a flair for speaking with accents, I have myself at 10 now. Keep in mind that what I'm actually doing is modeling the person and speaking style I've encountered. If they happen to have an accent as well so be it.

This can sometimes become awkward in social situations in which I find someone fascinating because before long I catch myself standing or holding myself in the same way as the person before me. If I’m not careful I find myself beginning to talk like them and I've learned that people with accents don't find it flattering. So I need to carefully monitor myself in these situations otherwise I start talking like them unconsciously.

Socializing

I prefer spending quiet time alone or with no more than a few other people. The more people, the more noise and movement therefore the more overloaded and anxious I get. My hearing is such that when more than one sound or voice is occurring simultaneously the sounds are processed in my brain into one noise. Therefore unless I really concentrate I can't decipher what's being said by someone I'm talking to if there are other sounds in the room. It's for this reason among others that I avoid social gatherings where many people will be in attendance.

If I’m talking to someone in a room with more than one source of sound (TV, radio, other people talking, etc.) I don’t hear everything they say because the other sounds in the room are like flies buzzing around me. My brain thinks all sounds are important and doesn't sort them out very well so I have difficulty prioritizing what I want to listen to. I have difficulty multitasking my senses making it necessary for me to hear you or see you but usually not both in an efficient manner. Therefore I also spend much of the time avoiding eye contact with the person I'm talking to in order to hear them better. I've also learned to use gestures to look like I'm thinking so the person doesn’t think I’m ignoring them. I do find it easier to look a person in the eye if I'm comfortable with that person and the environment is calm. This means minimal sound, few visual distractions and comfortable lighting (not fluorescent).

For the longest time I forced myself to make eye contact because I was criticized when I didn't. I found that after long conversations I was anxious and exhausted for making myself do so. After I was diagnosed with Asperger's and learned why making eye contact was so difficult for me I promptly reserved the right not to make eye contact when it was uncomfortable to do so.

There has been quite a rebellion amongst my Neurotypical peers who want my eye contact back. Some have even recommended therapies to help restore it. In their minds it seems that I'm being dishonest or evasive when I don't look at them. They ask why I used to look at them and no longer do. When I explain it they don't accept it. They think if I was able to do it before I should continue to do it. They don't seem to understand that it's unreasonable to ask me to do something that makes me uncomfortable in order to make them comfortable. Some people just don't get it.

Now that I know of the miracle of sunglasses with polarized lenses I'll tell them that their eyes are too bright and if they want eye contact then I'll have to wear my sunglasses. They won't be able to see my eyes but at least I'll be looking at them. They'll just have to compromise.

I can become quite excitable and verbose when discussing my areas of interest: religion, psychology and thinking in general and I encourage others to politely interrupt me when necessary because I can easily forget that someone else might want a turn.

The same can be said of situations when I'm nervous or bored. I talk almost incessantly as a way of discharging my nervous energy. My sense of humor seems to go into overdrive as I blurt out nearly every observation that strikes me funny. Sometimes the response is laughter and sometimes I get in trouble.

Thinking

"A picture is worth a thousand words" as the saying goes. My thinking in a very logical, concrete and very visual. When a person speaks to me my brain associates images with much of what's being said. I like to get a visual as well as an intellectual picture of what's being said. This type of thinking accesses so much more information about what's being said that it enables me to think more quickly and creatively since I have so much more information to work with. A person who thinks in words only has words to work with. As I have pictures as well I have thousands of words.

I make decisions based on the facts not emotion. I don't currently possess any truths and I don't think I'm right about anything. I only have perceptions I can back up with facts. I'm fond of saying that "I'm the world's leading authority on my own opinion." I accept myself as a completely subjective being and nothing more.

I hear things literally much of the time and usually take people seriously no matter what they tell me. I don't like surprises because I can't assimilate information fast enough to take it all in. Big surprises make me very anxious. A few times my boss would ask me to do something I didn't see coming and it required my immediate attention. I would get angry at him because he wasn't allowing me time to assimilate the request and I became anxious. Recently he threw so many things at me that I ended up sobbing for about 30 minutes because it overloaded me.

I find the thinking of other people fascinating as well as the words they use to describe their thinking. This is what allows me to appear personable and social. Listening to people think through the words they choose is for me what it might be like for another Aspie who's fascinated by computer code. They want to see how the numbers line up and what a particular configuration of code makes the computer do.

I like to listen to people assemble their thoughts and explain why they think as they do. I then enjoy deconstructing and rearranging thinking into different perceptions. Like rewriting computer code to make the computer do something different. This ability is my greatest Asperger gift.

Humor

My sense of humor has been one of my greatest assets and has allowed me to negotiate otherwise very stressful social situations. My visual way of thinking fuels my humor because I often hear something said and visualize it in a humorous way. I then make a statement based on the picture in my head and others find it humorous as well. When I'm anxious I become goofy, talk faster and often say some pretty outrageous things. The more anxious I feel the more my Aspie tendencies tend to show themselves as it's harder to pretend to be neurotypical under pressure.

I make many observations based on my literal ways of seeing and hearing things and when this is combined with my poetic way of speaking it often results in laughter from those who hear it. All you need to do is have one conversation with me to discover what my humor is like. I think many neurotypicals keep me around for pure entertainment value.

Touching

Deep pressure is best, like from a firm hug or a deep massage. Light touches drive me up the wall and I actually become defensive especially when I don't see it coming. When someone brushes up against me at the mall I get angry though not overtly. I don't yell at them but inside my head I'm screaming "Don't do that." When someone greets me by patting me on the back it makes my skin crawl. When someone touches me lightly I apply deep pressure to the area by rubbing it and the tickle or itchy feeling resulting from the light touch goes away. I need to wait until the person who just touched me looks away before I can do it to prevent the awkward "Why are you doing that, do you think I have germs or something?" When a person stands too close to me I get nervous for fear they'll touch me lightly because I know how I'll feel if they do.

Showering is uncomfortable for two reasons. The light touch of each water droplet as it hits my skin feels like little pin pricks and can be overwhelming if I stand under the shower. When it's time to dry off, rubbing myself dry with the towel feels like sandpaper unless I press really hard with the towel. Don't be afraid, in spite of this I still shower so you won't have to worry about being around me.

New Things

When entering into situations I can't control (which is often) I do a lot of rehearsal beforehand. When meeting new people I run through the do's and don'ts in my head and decide a few things I'm going to do to start things off (such as a hello and a handshake) and then let the other person take the lead whenever possible.

Springing unexpected things on me that require an immediate change in direction often causes me to freeze for a bit while I transition and try not to panic. The more time I have to adjust to the change the better I'm able to deal with it.

I find I’m more secure in an unfamiliar environment by counting things in the room. How many chairs, how many buttons on someone’s shirt. Even numbers are best because it cognitively gives me a sense of evenness and balance. I usually do this when I first walk into a new place or have to sit and wait for a while, especially when I don't know how long I'll be waiting. I’ll do it over and over until I feel calm.

Sensory Overload

In my life Sensory Overload is when I've reached my point of neurological saturation. My nervous system is hypersensitive which means things are brighter, louder and my skin more sensitive than the average person. A normal sound or sensation for an average person can register anywhere from 10-50 times more powerful for me.

Sensory Overload in varying degrees is a daily experience for me. At it's worst I feel sometimes like I have a bad flu, like I'm intoxicated, or sometimes I'm so exhausted I can't think straight, and am almost at the point of tears. My only remedy has been to lock myself in my room and block out all light and sound until I recover.

The worst episode of overload I experienced was shortly before my Asperger's was diagnosed. I attended the yearly festival in my home town and spent five hours around loud conversations, loud music and hundreds of people brushing against me. When I got home I collapsed into bed and found the next morning that I was too weak to get out of bed.

I spent the entire weekend in bed and was unable to work the entire next week due to extreme fatigue and flu like symptoms. My Doctor ran a series of tests looking for a mystery virus but found nothing. After my Asperger's was diagnosed I learned so much about my sensory sensitivities that I concluded this episode was a clear case of severe Sensory Overload.

My greatest frustration on coping with my sensitivities in the inability of the neurotypical world (especially my current employer) to fully comprehend and appreciate the seriousness of this. My job requires a lot of driving, as well as visits to various locations with different sounds, lighting and activity levels. Every day at work is a sensory assault and I end each day exhausted (not tired) exhausted.

I have been unable to get them to understand and work with me to allow me sensory breaks to decompress so that I'm not so exhausted at the end of the day and can remain productive throughout the day. In their minds any nonproductive (down time) must be made up for by working longer. They just don't get it. I do the best I can each day. I hope that some time soon I'll have a job where I can take care of myself and take care of business in a more balanced way.

I'll be glad to offer more about my Asperger's but I'm not sure what you want to know. So please email me with your questions and I'll add the information as soon as I can. . .

Brian R. King studied Social Work at Aurora University in Aurora, Illinois where he received his Master's Degree. Brian is currently a Licensed Clinical Social Worker in the state of Illinois. Brian focuses his coaching practice on the issues faced by individuals on the Asperger's end of the Autism Spectrum and serves as an Advisory Board Member for "The Autism Perspective Magazine."

Brian was diagnosed with Asperger's Syndrome in the summer of 2005 along with his oldest son Zachary. In addition to having Asperger's, Brian is also an 18 yr cancer survivor. Brian's current endeavors include authoring several books, including What To Do When You're Totally Screwed and Reflections: A Poetic Look At Life. He is presently working on a book about Asperger's.

Brian currently resides in Plainfield, Illinois where he lives with his wife of 10 years Katie (Diagnosed PDD in 2006) and their three sons Zach (age 9) diagnosed with Asperger's in 2005, Aidan (age 5) diagnosed with Autism in 2007 and Connor (23 months). Visit his site at www.imanaspie.com