An Asperger's/Autism Blog by Julie Clare

Posts tagged ‘Asperger’s Syndrome’

Eye Contact, Face Blindness, or Difficulty with Facial Recognition

There is a bit of a difference between true Face Blindness and Difficulty with Facial Recognition. I tend to use “Face Blindness” as a blanket term for both, but I’ll go ahead and make a brief clarification. I’ve seen documentaries where someone with actual face blindness has absolutely no idea who a face belongs to without any sort of cue. For example, people were asked to identify head shots of others they would normally know or recognize, but the pictures were of faces only: no hair, clothes, etc., just faces. Some people could not even identify family members they see daily/regularly. This is what face blindness is supposed to mean.

In my life, I tend to incorrectly call my trouble with facial recognition “face blindness”. I wanted to make the distinction that I recognize there is a difference, but when I explain something to others, it’s easier for me to use that term. Now, what do I mean when I say I have trouble with facial recognition?

I noticed that others on the spectrum can have either one of these issues, so I wanted to share my perspective on it. First, I am going to discuss my facial troubles, for lack of a better term. 

One of the common and widely-accepted symptoms or criteria for autism has to do with lack of eye contact. For us on the spectrum, it’s just something we tend to naturally avoid, and have to practice maintaining what appears to be a level of interest. Not all of us struggle with this, but many do. Maintaining eye contact in conversation lets others know we are listening and paying attention. When we fail to do so, or avoid eye contact, others perceive us as non-engaged. It can be frustrating for others who do not realize we are paying attention, as well as for us, who have to constantly be reminded (or in some cases reprimanded). 

I remember one scenario that really embarrassed me and I believe it related to this issue. (I’m getting off subject, but bear with me.) During one of my classes in college, the instructor kept calling my name in class. I would look up, confused, wondering what I did. She would look confused too, and asked if I was paying attention or following along. I never had trouble in any other class but this one in particular. I was always one to take lots of notes in my classes, and I thought perhaps she was concerned that I was doing something else instead of writing. I would always respond, “Yes, I understand” or “Yes, I’m listening”. But, still she continued to call my name during those classes, not to ask me a question about the material or anything, and no one else was called out like that. To this day, it still puzzles and embarrasses me. But I digress…

So, eye contact is something that those of us on the spectrum struggle with. This in itself can contribute to our “face blindness”. 

Please note for the remainder of this post, “face blindness” in quotations will refer to difficulty with facial recognition, and face blindness without quotations will be the actual version I described earlier. 

When I say I have “face blindness”, it basically means I am unable to recall faces in my mind, when I see someone I may forget who they are, or I think the person is someone else because they look similar to another person. My biggest challenge is remembering what people look like, and I tend to forget who someone is more frequently than I would like. I will provide a few examples.

I first realized I had this problem in college. When I was younger, I did not interact with many people, and those I did see where frequent enough for me to know who they were. Or if I forgot, someone would remind me, but I attributed that to a long time passing since I last saw that person. The problem was noticeable at college when I would see a former classmate outside of class with a different hair cut, color, or style. I realized that it might have been a few months since I’ve seen them, but I should have been able to remember who they were. This troubled me, because how many other people were passing me by and waving, and I had no clue who they were? As long as someone kept the same hairstyle I realized that I would remember them. But once that changed, I was completely lost. They would look familiar but I feared that they were someone else, and I began to question myself as to who I knew and who I didn’t. 

Now, if I really know a face well enough, this isn’t an issue. I can figure out if someone is in a wig, changed their hair, clothes, etc. But not always. In fact, something very close to me is a constant struggle when it comes to differentiating.

My mother has a good friend who has a very similar hair style and color. They both wear glasses, are about the same height, and roughly the same size, at least I seem to think so. When they are together, I mix them up all the time, but I have to really pay attention and look directly at them before I realize who is who. If I were to see images of their faces, I would know which was which. But in being around them, I really can’t tell… especially if they are wearing the same color clothes! Apparently I’m the only one that gets them mixed up, because when we are in a group with others, everyone else seems to know who is who. 

I also had some very good friends who were twins. I could tell which was which (this is very surprising, isn’t it??) while others could not. They had very similar faces but their body structure was a bit different. They each carried themselves differently. They had slight changes in their faces I could identify, and usually I didn’t even have to think about it. 

Why could I so easily differentiate between twins, and not my mother and her friend? 

Notice, when I said that I looked at the faces, I could tell who was who, in both circumstances. I was used to the twins being together, and had to learn how to identify each one. I’m not around my mom’s friend as often, and I don’t pay attention that there is a need to differentiate. My mind just picks one and sometimes I’m wrong. It’s just a matter of paying attention. I don’t not know what each of them look like, but my awareness is low. 

On another note, I used to be a huge fan of Star Trek, especially the original series. (More on that will come later, I’m sure.) You could easily say I was obsessed with the show, so I am very familiar with all the characters. I don’t watch Star Trek hardly at all any more, mostly because I think I burned myself out on it, but I am still a fan. Recently I was watching the original “The Twilight Zone” featuring William Shatner (Captain Kirk) on airplane. I had seen this episode before, knew who he was, and so on. Those of you familiar with these shows probably know they aired not too terribly far from each other, either.But, even though I knew exactly who I was watching,in a few scenes, I realized that, had I NOT previously known who the actor was, I would not have recognized his face. This puzzled me, because as a huge Trekkie,I wondered why this was. You can probably imagine that this also happens when actors drastically dress up for different roles… unless I recognize the voice or something very, very obvious, I usually have to be told who the actor is. This is just another manifestation of my “face blindness” and how it unexpectedly pops up in daily life. 

Going back to “face blindness”, it takes me a very long time before I can recall a face in my mind. And even then, it is distorted. I am often surprised when I see someone’s face I know very well, and it looks different from how I remembered them days, hours, or moments ago. It’s as if the data for how someone looks gets distorted, or foggy, in my brain. This is very confusing, especially out in public by myself… who knows how many people I see in the stores and I “ignore” because I fear they aren’t someone I know?

In many cases, I will send them a message or text later asking, “Was that you?” to which they usually respond, “Yeah! I was there!” Sometimes I wish people would just come up to me and say “Hi! I’m ….” because that would really, really help. 

For me, context is crucial. If I see someone outside of where I think they belong, it throws me off very badly. I have no clue who a familiar face belongs to if seen out of the normal setting. This is probably true for most NT’s, I imagine. But generally I try to just smile and small-talk, and hope I get some sort of clue as to who I am speaking with. 

The best reason I can come up with for myself, is that people tend to fall under very generic categories I file them under. Unfortunately, I don’t have the words to describe these categories, or someone may take offense to me “filing” people, but it helps me with the identification process. I usually sort by hair, which is a very poor choice since that is something that is very likely to change frequently, especially with females. Then I try to go with build, shape, skin tone, personality that can be seen on the face (what mood is this person most likely to be in), or I look for some really unique characteristic I will be able to identify with. Does this person have a mole, spot, or mark on their face I can easily refer to if need be? These are just some of the ways I try to remember who people are, but again, the actual face itself eludes me as to how people identify each other normally. If you were to ask me to recall what color eyes someone has, I usually don’t know. Or how big or small their nose is? I don’t know. How far apart are their eyes? Not sure…

This, I believe, all falls under the umbrella of lack of eye contact. I don’t really look at a person very much and even when I do, I’m probably not seeing their face, but just being self conscious. Why?

There are two main reasons those of us on the spectrum avoid eye contact, from what I understand:
1. There is too much information received from the other person. Looking into the eyes gives the autistic person an overflow of information that they can’t fully process. It is a bombardment and is too overwhelming to maintain.
2. There is too much information coming out, or the belief that there is. This is the one I fall under, and I have the overwhelming sensation that eye contact pours out all of my information to the other person. I immediately become extremely self conscious and want to hide my face because people tell me they can read me much better than I think. This is absolutely frightening.

Either way has to do with information overload, whether that is giving or receiving. I believe that lack of eye contact is a form of self defense. Autistic people are highly sensitive to their surroundings. I believe that eye contact is no different. After all, it is said that the eyes are the windows to the soul. Some of us just don’t want to see all of that, or give it away.

Over time, I have learned to kind of roll with my lack of eye contact in conversation. I try to watch the other person’s face when they are speaking to me, but I also look away very frequently, then return to looking again. When I’m speaking to a person, I tend not to look directly at them. In fact I will look all over the place except at their face. However, I do check back now and then to see if they are understanding me. It is very complicated because I have to force myself to go back and look in a number of times that won’t seem too odd or distracting to the other person. Those who are familiar with my Asperger’s understand what I’m doing, thankfully.

In conclusion, there is no real answer to face blindness, or “face blindness” from this post. I’m sure others on the spectrum can relate in some way, though their experiences will probably be slightly different. My goal here is to explain where I am coming from, and continue building that bridge between the average reader, and those of us on the spectrum. 

 

Discovery and Disclosure

This post is about how I learned that I was on the autism spectrum, and how I handle it today. My goals for the reader include:
1. Why discovery can take a long time
2. How it feels before and after discovery
3. How to cope with the discovery

Note: “Discovery” in this post relates to discovery of being on the spectrum.

Fellow Aspie’s may know what I mean when I say, “I’ve always felt different”. That’s a pretty wide open statement, of course, and we are all different as human beings. Usually, autism is something that can be diagnosed fairly early in childhood. In the case of Asperger’s, however, this is not always true. Autism generally shows more signs that are obvious, while Asperger’s symptoms can hide, be confused with other disorders, or just make the person feel and act “different”. I was one of those “different” cases.

My family’s first hint at Asperger’s was when I was a toddler. My mother would say I lined up toys in a row over and over, and she even had a slight thought that perhaps I had autism. However, because I was very intelligent, spoke at an extremely early age, and was reading early too, that autism was most likely not the issue.

I’m going to pause here for a brief clarification/disclaimer. Autism awareness has come a long way since I was a child. In the media, especially, autism is often portrayed as having severe symptoms, nonverbal or not able to speak very much, or in some cases seen on the opposite realm as “savant”. I do not blame anyone for not knowing or realizing that I was on spectrum, because knowledge of autism was once very limited. Also, we now know that people with autism can be, and often are, very intelligent people. The lack of being able to communicate is what makes that hard to realize.

Once I was older, about school-age to teen years, I went through various odd behaviors such as obsessions, introverted activity (trouble with peers), fatigue when going to high-stress functions (grocery shopping, meeting new people), unwillingness to try new things, and especially in my teens I was extremely withdrawn. Some of these may not seem like anything out of the ordinary, but inside I felt severely disconnected. You could also say that I felt delayed, or that my social maturity was always fluctuating. Sometimes I felt I was several years behind my peers, while other times I felt like I was much older than them. Maintaining friendships was a constant battle, and peers often treated me like an outsider. On the positive side, I did make a few very close and valuable friendships. Some of these friends are still in my life today, which I am very grateful for.

Now, the reader may be thinking, “Sure, but a lot of people have trouble making friends when they are young. That doesn’t make them autistic.” That’s true. Again, this is just my personal story, and I am leaving out many things because I am providing more of an overview than a detail-by-detail account. (I felt that another disclaimer needed to be provided here.)

My parents also became concerned that maybe something was going on with me. I just wasn’t acting normal hardly at all. My mood was always off, I was more and more withdrawn, I began getting weird headaches, zoning out, and overall just unhappy. What was it? Was I bipolar? ADHD? Hormone trouble? Depressed? I didn’t seem to fit any classic symptoms of anything. I could have been tested, but if I remember correctly, I didn’t want to be bothered. In retrospect, I realize I probably should have sought help sooner.

Fast-forward to my college years. I was unsure what subject to major in, so I started with English because I loved writing and that was one of my strongest subjects in high school. One of the required classes was a basic psychology. I was very excited, because I wanted to learn “what was wrong with me” without having to be treated. To my disappointment, I didn’t figure anything out. I was left with more questions than answers. However, I found that I really loved taking psychology, and decided to take more classes. Even if I never figured out what was wrong, it was something I enjoyed, and I needed extra electives.

At some point I was feeling very down, and resigned to seek help from the college counselor. She kind of helped me with some symptoms I was having, but nothing concrete. Next, I went to see a therapist (outside of the school) but he made me feel even worse than before I started. I hated going to those sessions, specifically because he seemed like he didn’t even care that I was going through anything. I felt so alone. Not even the therapist knew what was wrong nor did he care. But I had one more option…

Finally one day after class, I asked my psychology teacher if I could speak with him in his office. I was a huge fan of his, because he made the material very easy to understand and very fun. I felt I could trust him, so when we went into his office, I broke down crying and asking for help. I was at the last straw. Could he help me figure out what was the matter? Fortunately, he also had a therapy practice outside of the school and asked me to make an appointment so we could talk further.

Once I was seeing him on a regular basis, we tried various tests. We weren’t getting anywhere and both of us were unsure where to go. We ruled out several things such as ADHD, bipolar disorder, although I did tend to have some obsessive tendencies. For the time being, we worked on my depression because that was what stood out the most. I felt relief that I was finally making some sort of progress. And then, something changed…

My extended family lives several hours away, and we only visit on certain holidays. A couple of years prior to these events, I took an interest in one young cousin in particular. She had very curious behavior and I was fascinated by it. Specifically, she was playing with a nativity set, and clinking the figurines as she played. Then she lined them up in several ways, and as I watched her, I was predicting what she was about to do, and how she was about to do it. My cousin was probably about 3 or so at this age, and I only observed her because I did not want to interfere with my study. By the end of her play, I was completely perplexed. I did this sort of thing when I was young with our nativity sets. And how did I know what she was about to do each time?

Fast-forward a few years to where I am in the story. I’m seeing a therapist for depression and possibly something else. But what? Again, I visit my extended family for a holiday. By now, it has been discovered that this cousin has autism, and she is about school-age. I knew nothing of autism except that people who have it might make weird sounds or something, but my cousin acted fairly normal. She could speak, and play, and interact, but she was limited in what she wanted to do. Again I watched her, first with people, then with a dog that was nearby. I watched her play by herself with flowers. I watched every single move she made, and realized… I was this child at one point. I understand her somehow in a way no one else here seems to. They are talking with her, but she is in her own world, she sees it differently, she thinks differently, she’s not like the other cousins her age… She has autism…. I…I.. I may… have…. Do I have autism too?

That night I was very quiet and meditated this idea over and over in my mind. Did I have a type of autism? Maybe like, a milder form or something? Did I have autism? Did I have autism? Did I have autism?

Autism was always a scary word to me. I thought they were violent people who lashed out in incoherent mummers. I thought they were slow and unable to think very much for themselves. I thought they flailed about hurt themselves. I thought they were mute and did not understand where they were. This small little girl with autism… she was none of those things. She was sweet, and kind, and shy, and talkative, and friendly…. Autism suddenly had a new face. Autism had the face… of anyone. Anyone could have autism and I wouldn’t know it. They weren’t who I thought they were. I wasn’t who I thought I was. I needed proof before I could go any further.

My next thought was to research types of autism online. Was there a “mild” autism? “Autism Light”? “Diet Autism”? Were there different kinds? In my vigorous research, I stumbled upon “high functioning autism”, which led me to “Asperger’s Syndrome”. From there, I took several self-diagnosis tests, and shared the information with my family. Next, I scheduled an appointment with my therapist. I asked to be tested for Asperger’s.

There was a bit of surprise, but willingness to try one more test. He gave me a written test to take home after hearing my story and decided it was best for me to write as much as possible in my answers so he could review them carefully and we could figure it out together. The test was more based on how I was as a child, because some things I was able to sort of “outgrow” or learn to cope with. Some things were also about the present, and how I felt about things, how I thought, how I acted, etc. When I returned, he looked over my answers carefully. Together, we agreed that everything on that test related to me in some way, and from what I disclosed to him in my sessions, I was given the diagnosis: Asperger’s Syndrome.

—-

My initial reaction was relief. I FINALLY knew what was the matter with me. And now that I knew, I could learn what triggers certain behaviors, why I react certain ways, what to do to avoid behaviors…. but most importantly, all the GOOD I could do with knowing. Why had I been so stubborn to seek help in the past? Now I could go forth and learn all I could and spread the word that autism is not scary!

….But then, what if everyone knew? Would I suddenly be treated differently? Did I want that? Was I ready for that? No. No, not just yet. First, I needed to learn more and have a better grasp as to what I am dealing with.

Over time I began disclosing to a few friends here and there, but I was very secretive about my discovery, and asked that it not be shared with anyone without my consent. I was not prepared for what sort of repercussions it may have. But to my surprise and disappointment, I was not receiving the reactions I expected to those I did disclose to. In fact, it was so nonchalant I wondered why I bothered disclosing in the first place. I have a type of autism, isn’t that… interesting, at least? Does it not deserve more than an, “oh ok” or a head nod? What was going on? And now I was even more reluctant to disclose, because maybe no one really cared about it after all.

I graduated college with a BA in Communication. This surprises people because they say I still have trouble communicating. I explain that my degree focused more on public speaking than interpersonal communication, and I focused more on classes in media, writing, and psychology. Interestingly, autism really was not not covered much in the psychology classes, but I learned a lot of valuable insight into how NT’s operate, think, behave, react, and so on. These classes are the basis of how I came to understand others in a way I had not before. I also highly recommend anyone on the spectrum to study basic psychology if possible (even just reading books/articles) to help them understand NT’s if they find they have trouble interacting. (My trouble is in verbalizing what it is I am thinking. I tend to think in pictures, scenarios, and sounds, not words. Oftentimes, the incorrect words, or incorrect order of words, fly out of my mouth without a filter, and I may something which is the exact opposite of what I mean. Learning to talk with me can be a challenge, and it helps to ask questions to verify my meaning. This is something I continue to work on today.)

The next step was finding a job. I found my niche working in radio, but it took 2 years before I had my own live show. Actually, what I loved about radio was that there was always something to do. Computer work, traffic, production, sales, I mean, there was no end to things that needed to be done, and I dug in to just about every department. I learned as much as I could by asking for things to do, and by the end of my time there, I pretty much understood how everything operated on some level. However, I had a severe fear of my autism getting involved with my work life. I thought that people would not take me seriously, whether that be employers, co-workers,clients, anyone. I kept it a very tight secret, until I ended up reporting on Autism Awareness Month for one of our website news stories. It was frustrating keeping Asperger’s a secret, but to the people I interviewed, I felt it was okay to open up to so that they knew where I came from and why I wanted to interview them. I asked them questions, mostly mothers of autistic children, and I learned more about myself through them.

Today, I work at a non-profit radio station and the atmosphere is very different. It isn’t competitive like commercial radio, and there is a much friendlier air about the environment. Having a demanding job gave me very valuable information and insight, but after 2 years, I decided that I needed a change to something more compatible with autism. I don’t talk about Asperger’s with co-workers out in the open, but if it does come up, I won’t feel too worried about it anymore. Why? Well…

Last year (that would be April 2013) I did something… kind of crazy. I was tired of hiding. I was tired of walking on eggshells when the word “autism” came up. I was tired of people not knowing why I was different and having to make excuses. I was tired of worrying altogether. I was tired. I had it. No more. April is Autism Awareness Month (at least in the United States, where I am) and I wanted to do something important. I wanted to bring autism awareness to everyone I knew, and didn’t know for that matter!

I contacted one of my friends who works at the local television station and asked if she would be interested in interviewing me for Autism Awareness Month. She was happy to help, and together we made a great news story to inform the community what Asperger’s is, how I cope with it, and why it’s important to know about it. Along with the television interview, I posted a very long and open status on my personal Facebook page, disclosing to everyone that I had Asperger’s.. and that I was proud to say that.

To my surprise, I was flooded with positive feedback from both the interview and the post. People were shocked to hear that I had a form of autism, and wondered how on earth I managed to go so long without anyone noticing I had symptoms. They were proud of me for speaking up, gathered around to support and encourage me to keep going, and continue to listen when I have something to say about my Asperger’s.

To answer the question: how come no one noticed I had symptoms? Well, I did have symptoms. They were kind of out there and obvious. But they were disguised as things like “social anxiety”, “introversion”, “just kind of quirky”, “sensitive”…. you get the idea. The problem with Asperger’s is that it takes the form of other common disorders, and often goes misdiagnosed because not everything adds up at the same time. Some symptoms can show up more often than others, or some seem like you’re just a little different. I highly recommend an OFFICIAL diagnosis if anyone is curious about the spectrum, because symptoms can cross over among other types of disorders. What you perceive as autism may be something completely different, and so on.

So back to the beginning, about the lining toys up in a row: autism is a type of disorder. Those of us on the spectrum tend to create order in a world we perceive as highly chaotic.We like routines. We like to know exactly where things are. We like our personal space. We like quiet time. We like to put things in an order we can understand. We dislike loud noises, even though sometimes we may be loud. We dislike bright lights. We dislike people we may not know or are uncomfortable with invading too close into our space. We dislike sudden change in routine or plans without enough forewarning. But, we can be very sociable, it just depends on the person.

*Note: I may not be speaking for everyone on the spectrum. I relate more to the Aspie side of the spectrum, but from my research and understanding, many of these also relate to the strictly-autism side of the spectrum as well.

What are the positives of autism? That depends on the individual. The best result I have seen from autism is the “special interest”. A person with autism may have one or more special interests in which they devote basically all of their attention to. They can be more knowledgeable about certain topics than some “experts” claim to be, because they are completely and utterly obsessed.Why is this good? Imagine someone working for a company who knows every single thing there is to know about what could go wrong, how to fix it, and how to implement plans to prevent further problems. Imagine someone obsessed with transportation and invents new ways to travel that are safer for the people and the planet. They are incredibly fascinating and vital to progress with their intellect and intuition in their areas of special interest. It is also widely believed that people such as Albert Einstein, Isaac Newton, Nikola Tesla, Wolfgang Amadeus Mozart,and Emily Dickinson all fell on the spectrum.  

Note: I am using “they” in the previous paragraph because I unfortunately do not have a very useful special interest. I fall more under the realm of being geeky/nerdy and have more trivia facts stuffed in my brain than anything that could change the world. Therefore I do not hold myself in that realm. I do have special interests, but at this time I do not think they pertain to this post or the message I am trying to imply to the reader. At some point, I will go over my special interests in future posts.

 

Today, I have no problem talking about Asperger’s. Well, sometimes I am a little shy about telling new people, but only because I never know how each person will react. I am very proud of my accomplishments in life and I try to remember that if someone is surprised that I have Asperger’s, it is because I have learned to adapt my interactions and appear very “NT” on the surface. This helps me with my social anxiety and cuts down on my need to explain or excuse myself in conversation. And while I do not particularly hold my special interests as anything special or important, discovering Asperger’s has greatly impacted my life for the better.

But that, dear readers, will be for another post.

Thank you so much for reading this far, and I hope you will come back to hear more from me on my journey, putting the spectrum into perspective.

More notes:

Please be aware that I do use autism and Asperger’s a bit differently, and there really is no delicate way to do so. In no way do I mean to be offensive or unkind. I do not intend to specify here what those differences are, but I am making a slight distinction. Asperger’s is a form of high-functioning autism, and symptoms often manifest differently from other forms of autism. I also apologize for my previous misconceptions of what autism is (as can be seen in the part where I was learning about my cousin). I hope this makes sense, and to the offended, I hope you can understand what I am trying to say. I hold all of my autistic brothers and sisters in high regard, and believe them to be capable of great things; they are usually even more intelligent than any of us give them credit for. But also keep in mind, not everyone on the spectrum is capable of being “savant” or holding superior intelligence. This *can* happen, but not always. I certainly am not on that realm, and see myself as very average.

Please keep in mind as well that when I use “high functioning autism”, I do NOT hold myself any higher than my autistic brothers and sisters that are lower functioning. The terms “higher” and “lower” functioning were not invented by me and I realize that these terms have been known to be offensive. At this time, I do not know of any other way of distinguishing areas on the spectrum, nor were these terms supposed to be offensive. But as I hope the reader is aware, there are various types of where a person falls on the spectrum as far as how they function in society, with others, with themselves,etc.Those who are in greater need of assistance are no less important than those with less need. The reason Aspie’s have been termed “higher functioning” is that in the general sense of the spectrum, we fall under more likely to be independent and able to function in society with less severe issues or symptoms. This does not mean it is easy for us to do so, but it is a variant, or sub-category of autism, which happens to fall under the higher end.

I also am aware that some dislike the term “Aspie”, but I personally have no problem calling myself that as a nickname for having Asperger’s.

I also apologize for grammatical errors in this post. I realize I made a few, and normally I would correct myself, but as I have been typing this for several hours, I need to take a break, and may revise later.