Found on my computer from many years ago. I don't even know if I wrote this or I was copying it from someone else who did, but it sounds like me and I would have likely attributed it in my notes if I hadn't written it. All I can say is wow.
On labeling emotions to help Aspies relate better to others
I had a wife message me about her concerns with her husband, who is on the spectrum, misinterpreting her emotions. Her concern was:
“I have a husband, who is on the spectrum (somewhere). Everyday, he misreads or misjudges how I am feeling in response to a particular event or situation. For example, he will think I am *ill* (mad, not sick), when in truth and reality I fell nothing of the sort. He makes assumptions that are incorrect ALL THE TIME.
So, here are my questions:
Does this particular symptom of autism indicate only Asperger's or is this common with all forms of autism? And two, does anyone have an effective way of dealing with these misperceptions or dealing with his inability to accurately read my feelings? (I have tried to talk to him, but there is an obvious lack of language and social skills interfering with this. He walks out of the room while I am trying to talk to him; he won't look at me in the eyes; and he won't answer when I pose a simple question like: What made you think I was mad? And if he does answer, after my persistence for him to do so, he says "I don't know.
Thanks for your help,
Yes, people on the spectrum have great difficulty interpreting nonverbal communication and emotional cues. Probably the reason why he walks away and doesn't want to talk about it, is because he doesn't know what to say, and doesn't know why (especially if he is unaware of the deficit), and feels incompetent when you bring it up. When you ask "what makes you think that", it puts him on the spot and he probably does not know exactly what there was about you that lead him to think that way, or he is embarrassed to tell you. Direct statements about "why" often intimidate people on the spectrum.
In recognizing the spouse, on the spectrum, has difficulty reading emotional cues, you have to be very literal in communicating your emotions. I would recommend doing the following:
1. Your husband needs you to label your feelings frequently throughout the day, so he can associate what he sees (your facial expressions) with what you are feeling (emotion). So, as often as possible, try and label your emotions and connect them to the event that is causing them, "Wow, that really makes me happy (sad, angry, etc.). Do a lot of "feeling out loud." This way he doesn't have to guess, he can see what you look like when feeling that way, and he gets an understanding of your emotional reactions to things/events around you. People on the spectrum have to be literally taught, what comes intuitively to us.
2. Next, find ways to discuss how you perceive others around you are feeling (I bet that made that person feel ___ ), and when watching tv (Oh...he looks upset about that!"). This also shows him how you perceive emotions in others, and how you connect the emotion to the event that causes it.
3. Try and label how you see him feeling. Sometimes people on the spectrum have trouble labeling their own feelings. Especially if you think something makes him anxious, scared, or embarrassed; "wow...I bet that made you nervous...it does me!" Also, they think that everyone feels and thinks the same as them. They have difficulty realizing that the other person may be perceiving the situation differently.
4. When he misjudges your emotional reactions, try not confront the issue directly, "What makes you think that?" I would try simply telling him how you do feel, by first validating his interpretation first "Honey, I could understand how you might think that I am mad, but actually I am feeling confused." This way you are not asking him anything where you are putting him on the spot; simply reflecting how you do feel.
The above works on making "feeling" more vivid and concrete in your interactions. We tend to take intuitive understanding of feelings for granted. For your relationship with your husband you need to be very literal in "talking your emotions", so he can understand what others would intuitively interpret. People on the spectrum need to cognitively figure out what we interpret intuitively.
For a marriage where only one of the spouses is on the spectrum, the barrier in "emotion sharing" is one of the hardest difficulties. The neurotypical spouse needs to be more explicit in expressing their emotions, frequently labeling them, and connecting them to what makes you feel that way. Verbally discribing what you feel, is a good technique to get good at doing.
The same goes for the spouse who is on the spectrum. Often their outward expression of emotion, or lack of emotion, does not match what they are actually feelings. The NT spouse can actually perceive the person as “indifferent”, “angry”, “uncaring”, etc. when they actually are not feeling that way at all. So, it is important in a marriage like these that both parties clarify and verify literally for each other, and not “assume” the other is reading it right.
An old post on my computer I found about a random powerful connection from November 2012.
I haven't changed much have I ? =)
Okay so yeah I don't really know where to begin but ..... I did a lot of things today. Like left at noon got back at 10pm lots of things. Only one of them was planned. Well, two if you want to get technical. Appt at 1 pm on St John St. Took 1215 bus because I couldnt get up early enuf to make 1135 one which I took cus I didnt think 1215 would connect. BUT, the Congress St (#1) bus stops at the TOP all really along Congress, which is obvious, but none of the other buses I actually take do so I forgot that I could get off the SP bus what amounts to 5-8 minutes early and be right at the #1 stop. That was VERY convenient. So I did make the connection despite the SP bus being 8 minutes late. And I even figured out what side of the street to go on with the help of some friendly street denizens. (Is that a word?)
Apparently no one knows what to call it but "the old train station building." Although the bus driver says it's called Union Station. The sign says it was called the Maine Railroad Building or some such thing. Never seen any one place have so many names!
Either way, it was BEAUTIFUL. All old wooden floors , long narrow but pretty WOODEN hallways. Love, love, love. Reminded me of a similar building in Montana. Had appt. Was like neutral. More on that another time.
After appt. Three hour conversation with an older woman who happened to be reading the bullentin board above where I was sitting. Three hours! I can't even begin to go into this woman's heartbreaks because my heart and head are still processing. But man it made me want to HELP PEOPLE because it is SO REWARDING.
She needed someone to listen, so badly. She had so many people telling her she was crazy, not listening, not believing her. She lives in one of the worst apartment complexes in Portland (or so I believe). She has no or very little family, friends, support.
She has severe ADD, went to some stupid clinic with a stupid beyond belief psychiatrist that I won't even get into. Spent her life feeling like she didnt fit in anywhere till she was diagnosed with ADD at age 51! 61 now. Psychiatrist she has now sounds just plain abusive. She's so sensitive to the world, even more so than me it seems, cant stand noise of traffic, or smells either, complained about chemicals before I even mentioned it. Complaining of dizziness, fogginess , memory loss lately, did I mention she just had new carpet put in her apt, it was put in when she moved in that is. Poor woman! She goes down to the laundry room or sits in the stairs just to get away from it. She was wandering around the train station building because it was quiet and made her feel calm. I felt for her. Can we say, my life story? Complimented me up and down about being smart and a good listener and all sorts, I was flattered, but wanted to help.
Called the community counseling center on her behalf, offered suggestions where I could, and made an appt with her doctor at Martins point for her (thank goodness she has one, at a reputable place too) because it was something she had just had too much anxiety about to be able to do herself. Sounds familiar.
Person I saw came out to close the office down saw me sitting there still gave me a quizzical look lol.
Left at 5, got the bus back to Mon Sq with no problem - it's the first bus in ages I can remember being on time. Went straight to gelato place, I needed energy. Friendly as they could be there. The girl I talked to last time was there. We had conversations about lox and the Broadway show CATS. I wasn't planning to stay for long but couldn't resist a good conversation with her. Probably stayed there 2 hrs. Went to WF cus I needed crackers and meat. The sweet air of independence , freedom , self sufficiency was with me. The walk to whole foods felt great. Wandered around there for an hour. Walked back up, air still felt great and I was as warm as could be , surprised to find out it was only 38. When it's not windy and you're bundled up and the temp's 30 or above winter can actually be quite nice.
I got the 24A bus back - the one that stops near my house that I almost never get - and it was only like 2 min late. So thankful not to have to wait. I couldn't believe it, Id been out for 10 hours, 10 hours! , wandering around Portland, on my own, finding things to do. So tired I could barely stand up when i got home. obviously.
I need to find a way to help people, to hear their stories, to offer emotional support . it makes me feel complete. and tired. but mostly complete.
tomorrow, going out again, busy day, will be happy on thurs to do nothing.
I found this on my computer today from when I lived with a woman in coastal Oregon in 2009.
It is an emotional tour de force.
While trying to describe how much I liked my roommate there I feel like I did an excellent job of describing why exactly I have so much trouble with the other 99% of the population.
I have worked very hard to find ways to connect anyway since I wrote this and am succeeding in some ways but still struggle mightily in others.
Wed May 6, 2009 Siletz, Oregon
I have so many different emotions flooding me, that they are hard to deal with. I think the most prominent emotion is something like when I was chosen for the National Honor Society in high school, weeks before graduation. I was happy for about thirty seconds and then flooded with self doubt and discomfort. My image of a NHS scholar was not what I held for myself; it's hard to describe, but they were the "other," they were "perfect," in so many ways, and I was not. It felt like a kind of cognitive dissonance to be a member of a class and a clique at which I had always had some amout of disdain for and jealousy about. Wanting to be them and have all of the related benefits I imagined such an honor held, but somewhat jealous and therefore a process of "other-ing" them. Standing apart from them. Defining yourself as what you're not in an effort to be okay with who you are. Drawing lines in the sand, if you will. And then being lumped in the same class you had always coveted - to be honest, it was a bit of a small identity crisis. I resolved it somewhat quickly, realizing that it was somewhat silly to get so worked up over what basically amounted to a meaningless honor - especially because I was given it three weeks before high school graduation. Decided to accept it with grace and not think too deeply about it.
I remember this experience and this analogy as I try to process what is happening to me now. The best explanation I can give is that something wonderful is happening to me, but I am asking myself, is it real? Can it be trusted? Do I even deserve it? And then of course there are the worries if it will last, and then there are the worries about how the hell I will ever go back into normal life after knowing this is possible and having experienced it.
Humans do not want pain; that is an obvious statement. We try to avoid it when we can. But when you can't avoid it, you get used to it. And after carrying around a burden on your back for so many years, indeed almost all of your life, to finally arrive at a place where you can put it down - where you can see what life is like without it - it's almost too confusing for words. Do you dare hope that this can be true? Do you dare trust it? It can feel so foreign and so weird while being so absolutely wonderful at the same time.
At the same time, while you are experiencing it, alarm bells of the good kind are going off in your head and you're thinking "Did I just hear that? Wow" and then you're thinking, my heart is healing, my soul has been touched, this is like someone finally took some very special (hopefully non smelly) Scotch tape and bandaged my heart in all the right places. And you just can't believe it's happening and you don't know what to think.
It's all the times in my life where I thought "Why can't people be more like X," and "Why can't they understand when I X," and "Why can't they care?" and all the extreme jealousy I had when seeing how other people were treated, and reading blogs about autism parents who doted on and clearly understood every aspect of their kids and getting so depressed sometimes from them out of envy, and then coming here and feeling - wow - all my needs are being taken care of. I don't feel jealous. I don't feel wanting. I don't feel envious when she talks to other people because she talks to me in exactly the same way. I feel a whole person in her eyes. I feel valued. I feel like I'm worth something. It is oh my God the most amazing feeling. But such a foreign one.
I am amazed by how much I like her, by how similar we seem to be, by how well we seem to get along. She is the embodiment of a million different things I had always dreamed of in a person, and I am amazed by getting to live with her.
She is so emotionally intelligent, and intellectually intelligent, and that's not a combination I have often seen.
She has the best sense of humor I have ever seen in a person. She is logical, She is compassionate, she is understanding, she is intelligent; she is passionate. Her words positively sparkle. She has a way of talking that puts you at ease so much. She RADIATES joy, peace, calm. She radiates understanding. She works through problems in a logical way. She does NOT make me feel like a bother or a problem or in the way in any way. She makes feel understood, appreciated, helpful even. She talks to me like an equal. Everything about her has a way of telling you that you are important, you matter, but it's not only that, talking to her basically silences all the unquiet parts of me, it just makes me feel all right. It's like a spell has been put on me. The spell of human connectedness?
She has the ability to laugh at ANYTHING. Now, most people say they try to make light of things and keep a sense of humor, but she actually does. I am stunned and awed by that. She doesn't make anything into a big deal. She is very accepting of just any problem you could imagine and thinks and talks about it very logically and compassionately.
And it's little things. I tried keeping notes the last couple days. Random things like:
1. When she was going to have a client at the house for a massage, she made sure to prepare me ahead of time and tell me very explicitly what she expected of me, ie, no noise, make sure the bathroom is clean, etc. But she even went so far and was emotionally honest enough and comfortable enough with both herself and me to tell me in a perfectly normal tone of voice - not embarassed, nervous, ashamed, or making me feel that way - to be sure not to (redacted). I might not have thought of that had she not said it, or I might have, but that's not the point. The point is she was comfortable enough to point out directly something that could have been a problem, instead of waiting for it to happen, having it be a problem, stewing over it, stressing over it, telling everyone she knew how big of a problem it was, growing resentment over me by the day, blowing it out of porportion and finally telling me to leave.... that's how most people would have done it. Almost everyone I've known. People will NOT talk to you directly. But she does. And she did. And she made it so simple. So simple. Just like it should be. Not a problem. Just a casual mention and problem solved. I am in awe. Life as it should be. Most people would be too damn embarassed to bring up such a thing, and in such a kind way.
2. Her tone of voice in general. She does NOT and has not for a minute made me feel embarassed, ashamed, or scared of anything or about anything. She does NOT seem to resent me in the slightest. She has never had an ounce of resentment, bitterness or tension in her voice, and I don't think I've ever met a person like that. Even when she's asking me not to do something or to do something - she says it so simply and there is that ever present quality of joy in her voice - she never sounds bitter or resentful of anything, and therefore I don't have to be scared of her, like I am of almost everyone. I can say things in the utmost honesty and not have to worry obsessively about how she is going to percieve it and how it is going to affect relationship and what repercussions there will be from saying X thing,and most of all think of a million different ways to phrase the same thing to cause the least offense while tensing in anticipation for the usual negative response - it's simply not there. What a new experience. I don't want to ever have to be scared of someone again. I fear what will happen when/if I have to leave, but I am trying to just enjoy it now as much as possible.
Most people, even if they're not consciously doing anything, you can see it in their face. As bad as I am reading faces, I can see the disgust, the tension, the impatience, the perplexment, in regards to just about everything I say, in one way or another. In some ways you get used to it but in other ways it never stops hurting. But it's a kind of hurt in the back of your mind you try not to think of much.
But with her, everything I say seems to click and register and she comes back with the perfect response. She validates and appreciates everything I say. Every single thing. Again. I am in awe. How is this possible?
She doesn't resent it when I ask too many questions. She doesn't ascribe hidden motives to what I'm saying. She is never impatient. She never makes me feel - anything bad. She never gives any sign that what I am saying is unimportant to her in any way.
She told me I didn't have to use the dish soap if I didn't want to and could wash the pan with very hot water. She realized when I asked about if you needed soap to wash the pan that I was worried about the possible smell of the soap without me even having to say so, and she did not mock me for it, she did not get impatient, she gave no signs of thinking it crazy, she did not assign any negative value to it. Instead, she understood, she ACCEPTED, she VALIDATED, she came up with an alternative solution, she didn't JUDGE. How is this possible?
I feel like Alice stepping down the rabbit hole.
It's a parallel universe, it's got to be. Ha.
This is what I've always wanted, but it feels so unbelievably strange that I can't even tell you.
She asks how I am every day! Sincerely. My gosh, that feels good. It's been years since anyone did that. It's again a dream.
She isn't put off by my anxiety, or doesn't seem like it. We have long and interesting conversations. And she isn't put off by the fact that I can't seem to sit still and fidget and can't stop moving. She isn't put off by my intensity, she isn't affected by my sometimes anxious tone of voice. She is intense and passionate herself. It is amazing.
She takes me seriously. Every symptom, everything I say. There is no poopahhing or exasperation. She takes everything I say seriously. It is weird and amazing.
I can talk about sensitive issues without a HINT of self consciousness. I've never been able to do that with anyone before. gosh - conversation without drama is so amazing.
She is the most emotionally honest person I have ever known. She is the most passionate and vivid and open person I have ever known. Her emotions are visible and understandable. I don't feel emotionally shut out like 99.9999999999% of people. I see myself in her. I am so touched by the emotions radiating from her. It is so gratifying to look at her and realize - I understand the emotion she is feeling! I experience it too! To have that feeling of connection and realization instead of a constant feeling of otherness - I have no words for it. Her face and emotions are readable while most people's are completely inscrutable, the latter of which of course causes me a large amount of anxiety.
For most of my life people have been telling me I try to manipulate people simply by making my needs known and asking people to be explicit about what they want from me. I was beginning to think it simply wasn't possible for people to do this for me, and for me to find a living situation and a person that I could get along with, that would meet my needs without
making the other person crazy. To find someone who could tell me what they needed me to do so they could be okay with me since God knows I can't guess, and who wouldn't resent the extra work of being explicit in this way. And it appears I have found such a person. It's .... wow.
It's like something's being opened in me that's been shut for a very long time. That's never really been opened in the first place. I don't feel it as much as I would like - cognitively, emotionally, I've felt, well, more than a little on the brain dead/brain fogged side since I got here, and there are a lot of things I am realizing and appreciating cognitvely that my emotions haven't really caught up to yet. But perhaps then I have too many defenses up and can't let myself feel them - who knows - either way I appreciate it - because even if I can only feel it at a level of 10 or 20% - it's sure a heck of a lot better than zero.
She talks to me in the exact same way as she'd talk to anyone else. I have not ever known someone in my life that treated me the same way they treated their friends. People never seem to know what to do with me. They are always put off by me. They always make allowances somehow for me, thinking they have to either talk down to me or talk in some other unnatural kind of way. They're never relaxed around me. It drives me CRAZY CRAZY and it has all my life. Another thing I've had to learn how to ignore but frankly I've had very little success ignoring it other than just trying to stay away from people completely as much as I can. To be treated and talked to the same way as other people, is more gratifying than you could imagine. To have her be open with me emotionally in all ways - After being shut out for as long as I can remember from anyone's emotional life - this is like an emotional feast, an emotional tour de force, in a good way.
So many things have been changed about my life, so many things have been thrown into upheaval, but talking to her has kept me level headed and largely unconcerned - it's like all my emotional needs for once are being taken care of so I don't have to go into panic mode like I usually do.
All I know is I need to appreciate this while I have it.
**** DIFFERENT BLOG ON SAME TOPIC *****
I just realized something rather interesting.
I was thinking more about my roommate and the way she communicates with me. And I realized something.
It clicked when she said something like "Just so you know, you probably shouldn't leave the chicken out for too long," telling me I should put the chicken we just bought away.
Once again, I noted the way in which she said it. She takes such care to say *everything* in such a non-offensive, friendly way. Adding the "Just so you know" or "I thought I should tell you that" or whatever it is before telling me something she wants me to do makes it again sound less like a demand or something one should be resentful for and more like just.... what it is. No drama, just... I don't know....respect?
Similarly, I realized fully for the first time how her style of communication satisfies every emotional need I have ever had in every way I ever dreamed of someone communicating - and how that completely changes the way *I* communicate with her, and my personality in doing so - for the better.
I have a tendency it seems to get angry, annoyed, irritated, whatever at people awfully fast. Faster than I would like. People just often drive me crazy. The communication gap has always seemed too wide - I just could never quite get what they were saying, and I always seemed to reply to what they said in a way that angered them, for reasons I could never quite understand. To make it simple: other people angered me and I couldn't understand what they were trying to say; I angered them and they couldn't figure out what I meant to say. An impasse.
There are two chief reasons that just about every person in the world drives me insane.
They both stem from the Aspie lack of ability to understand and interpret nuance, especially nonverbal nuance or language in communications; to interpret intent; to read other people's desires or feelings without verbal language.
One is emotions. People are never emotional enough for me. That is, they do not show their emotions and feelings in verbal ways, or they do not show them in ways I can interpret nonverbally. I am a very emotional person who has a strong need to have my emotions validated and acknowledged by others. If I am communicating with someone and I tell a story, it's the emotional part of it that matters to me, not the practical part. I get very, very frustrated by people who do not respond to or acknowledge the emotions that I express. If I am sad, hurt, or otherwise seeking comfort, I have had a VERY VERY hard time with not being able to understand that other people might feel bad for me and have empathy or sympathy, but they refuse to show it. In other words, I can't tell someone else is acknowledging my emotions. nonverbally, or in an implicit (previously understood) way.
And so I keep on feeling isolated, miserable, and so on, only 10 times worse because I think the person doesn't care, is snubbing me ,a nd so on.
The second is understanding.
Many times I have said to people I am close to, when having a discussion about any of a variety of topics, if you would just say " I understand, BUT..." and then say what you're saying, I would be fine and the discussion would proceed normally. But if I say something and the other person doesn't acknowledge it and just follows with a statement that completely disagrees with what I just said, I will often go crazy. I will start yelling or crying - it feels like I have just been completely misunderstood and what I said disregarded. I don't understand that them understanding what I said is supposed to be implicit. I can't know if they understood me unless they say so. And I cannot tolerate being misunderstood. Emotionally it plunges me into despair.
It is just one of those triggers. I had a childhood with a speech impediment and a social development disorder - therefore I grew up used to people not physically understanding what I was saying, and definitely used to people not emotionally understanding what I was saying. Add this to my theory of mind problems with Asperger's - I don't know what other people understand or know, I only know what is in my own mind - and I have NEVER taken someone understanding what I am saying for granted. Therefore, I really need people to interject those extra few words to acknowledge what I said - about any issue , really - before responding to it. If they don't, the vast majority of the time, I get very angry, upset or frustrated, as much as I try not to. This has led to trying to avoid a lot of communications due to this problem.
When I think back on it I think nearly all of my communication difficulties or tension with people, at least people I know well rather than just casual acquaintances, was due to this simple tenet: I tend to get very defensive very quickly, and I tend to be somewhat quick to anger if I think someone is not understanding what I am saying, or misinterpreting what I'm saying, or making incorrect statements about me. Part of that anger stems from the enormous amount of resentment I am carrying around from spending almost an entire lifetime being misunderstood, of being lonely, of not having anyone who I felt understood who I was. And of not being able to understand what they feel either. It is a feeling of being cut off from other people and the world that is quite unpleasant. And so when the inevitable miscommunication occurs, it reminds me of this, this bitterness, this resentment, and that makes me angry. Therefore my response to the person who made the gaffe might be or quite often will be out of porportion to what they actually sad or did. This is not something I like or am proud of but I am starting to realize why things happen the way they do.
It is possible that my tone of voice or attitude could be construed as a lot more negative, irritable and offensive than I ever realized it was, just because I'm in this constant state of frustration, anger and fear because I feel like no one ever is understanding the things I feel it is essential for them to understand - or the more likely scenario of they understand it fine but are not able to communicate that understanding in a way that I can pick up on. So they get hurt or offended that I didn't pick up on their positive, caring vibes and got offended instead; i get hurt and offended by interpreting the message wrong and thinkign they don't care or understand. It's a negative cycle to be sure.
This doesn't happen with EVERY single interaction, and rarely with strangers, but does a lot with people I know.
The reason I bring this up:
I realized that NONE of this , that is none of the negative reactions, have been happening with my roommate. I have been keeping mental note of all the amazing ways in which she communicates in exactly the way I need it. And I still can't quite believe it.
1. The emotional part - she acknowledges EVERY emotion, thought, feeling. Naturally. All of her statements and the very fiber of the way she communicates is designed to acknowledge and emotionally validate the person she is talking with. It is just the way she is, naturally - but I have never met anyone like that in my life. It is so ....calming and de-escalating to hear someone affirming me, understanding me, and to be able to *understand* her understanding. Her tone of voice is filled with empathy, joy, affirmation - I usualy can't understand anything but the most obvious tones of voice, but I can understand this, and it lifts my soul. Her face, too, displays nothing but empathy, concern, joy - acknowledgement - and again - the emotions are such in a way that I can read them. That has happened all too rarely in my life. It has kept me much more emotionally level - every time my emotions start to escalate, and I talk to her, it just makes me feel calm, centered, able to move on. Not that I don't have any anxiety because I do - but it makes it entirely manageable for the most part. And I appreciate the lighter burden to carry.
It's not even so much what she says, it's not what she does - it's that she's able to communicate that she cares, and that just means the world to me.
2. Understanding. Again, with everything she does, she shows that she understands everything I say. Every single word. You have no idea how refreshing and wonderful that is. When emotions have a hold of me they are like a savage beast that rips me apart and threatens to devour me. The loneliness and isolation feed the beast. The anxiety coming from containing the emotion or feeling within me is terrible. It needs to come out. When someone shows me they understand the emotion, they understand where it is coming from, they can even label it perhaps - it strips the beast of all its power. It takes the fear and overwhelmingness away. It makes me feel connected and wonderful and warms my heart. And again, she does this , it seems, so naturally it stuns me. I mean, I have felt pretty bad because of health stuff lately and am often rather brain fogged, but even through my fog, I'll hear the emotion, the understanding, the empathy in her voice and be amazed and appreciative. I spent years and years, in college, before college, after college, crying because I wanted this so bad but there was nowhere to get it. I wasn't getting it from my family, and attempts to do so resulted in being told I was "manipulating" them, which hurt me even more; I tried to get it from various teachers and professors in high school and college, and got very small amounts which I cherished, but I largely was left alone. Dreaming of, and trying to imagine, what it would feel like to communicate with someone who actually "got" me, who it didn't seem like pulling teeth to communicate with.
And now I have found it. It is of course tempered by all of the other problems I am having health-wise, and I am often mad that I feel I am not ableto appreciate it as much as I should. I feel like had this happened a few weeks ago I'd be just in love with the situation, relaxed, and joyful all the time. Instead, in some ways, my anxiety issues are at an all time high, and I really don't like that. My brain fog makes it so sometimes things seem too far away to process or appreciate. But through it all I remain determined to acknowledge and make sure to appreciate the good things that have befallen me.
It seems in part that I have found a partial answer to why I seem to have trouble relating to so many people. I need people who are much more emotional, much more expressive, and verbally express their understanding. And after meeting my roommate I know it is possible.
The question i,s, can I use this knowledge to help me not be pissed off by other people?
I a,m thinkingthat will be difficult. The response is too ingrained. Perhaps with therapy but that isnt an option due to MCS. for most paer. Can I try to seek out people who I can educate, who I can use this knowledge to show them how to best communicate with me in a way that will make me less likely to bite off their head? I hope so.
To be honest, I really do try to restrain myself. I do not consider myself a rude person, I do not attack people verbally, I'm not really that bad.... I think it's mostly my tone of voice that I am not aware of until after the fact that can take on an overly irritated tone that can be offensive to others. I do very closely watch my words so as not to be offensive but to monitor both that and be aware of my tone of voice and prevent hair trigger reactions to triggers is something I find very difficult.
Random stream of consciousness writing so that I can save this somewhere.
I meant only to go to into Portland for a therapy appt this afternoon, but hoped I would find other interesting things to fill in the time. It was too windy (like extremely windy, hurricane force almost) so I didn't want to walk anywhere, even to the gelato shop. But I ended up finding some very interesting connections right at the public market, and later at the Jewish Film Festival that was at Salt.
I met a woman on the bus whose workplace gives her a significant bonus for walking as part of a health plan, and it was the first time I have ever seen that bus driver (who seems very friendly but can't really be engaged in longer than a 2 sentence conversation) engage in a prolonged discussion with anyone before. I went to the public market and while I was hanging out there waiting for my therapy appt and not wanting to go anywhere else because of the wind, I met this woman who Sarah at the coffee shop greeted very fondly, so it perked my interest. When she sat down next to me, I engaged with a comment about the weather than turned into an hour long discussion. She was very vibrant and full of positive energy. Although I must say her political and social beliefs most decidedly did not mesh with mine, although thankfully it took until the end of the hour to find that out. I will never understand people who protest at abortion clinics, let's just leave it at that. Had I more time, I still would have probably tried to engage with her in a discussion about it though, because she was respectful and interesting despite being blatantly anti-everything I believe in. Once, anyway. She apparently remembered meeting me before, which I did not.
Then I went to said therapy appt, and on my way back to the public market I saw Salt, the documentary institute, and a flyer about the Maine Jewish Film Festival. I did not think there were any that appealed to me that were not at the Nickolodeon, but this flyer stated that there was a film that night at Salt. So, feeling brave after my three days of rest, and wanting a challenge, I suppose, I walked in there to explore. I was given a flyer about the movie, and deemed that the viewing area looked likely to be tolerable, although not definite. The movie was about an artist with ALS and disability issues so I thought that might be interesting. It was 430, and the movie was at 6. I wanted something to do, so I thought, why not? Why not try it.
When I got back to the public market, though, I was drawn into a different conversation at the coffee shop for a while. There was a college aged guy talking very passionately and emotionally about his college teachers at USM, who were apparently fired and it's a big crisis that is in the news and etc. I was drawn more to the quality of his speech and his emotional expressiveness than I was to the topic, so went over to ask him more about it. Surprisingly, he greeted me warmly and in a familiar fashion and said "Hey! I really liked your poem." Apparently, he had seen me speak at one of the open mic nights. Who would have known. We ended up talking about philosophy and connection and things of that nature for 20 minutes or so until he had to go, but I really liked him. It is not very often I find people my age I really like. We exchanged phone numbers and emails and perhaps will get together again.
So at that point it was almost 530, and I realized if I was going to go to the film, I had to get ready. (But first I ducked into the library because the newspaper said there was going to be some disability related thing there, and I wanted to see if it was any better. It was not happening, though.) So I went to the film, and met Alanna there, and it was a very good film. The chairs were very uncomfortable though, so I spent the hour moving between standing for as long as I could stand it (ha, pun) and sitting for as long as I could stand it, very thankful that it was only an hour and that the film was interesting, and quite compelling.
I commented in the Q&A session about the use of humor in the film being a distinctively Jewish trait, due to the fact that Jewish humor evolved over the years as a way to cope with difficult situations and to further one's survival. The director liked that very much because he said he had struggled to define what made it a Jewish film, and had settled upon something like that (I think, I didn't hear all his words). I later made a comment about how the film very eloquently portrayed the struggle to find meaning in one's life that seemed to be well received (although the quote from Martha Beck's "Expecting Adam" could have been a little over the top, it is hard to know.)
After this, I was drawn into a couple short conversations, nothing too substantial, where I was praised for having made "insightful comments," but the speakers did not stay for long. My face blindness came out when I didn't recognize the director when he came to greet me, but oh well. I didn't think that I was going to get a ride home (but knew I could call Rob if I had to), as everyone seemed to be from Portland, as it it's a pretty localized event. But then at the last minute, after all the conversations were over, after I had asked everyone else who it seemed appropriate to ask, I stood with a small group of women and one guy who was a reporter for the paper by the door. I asked them if anyone was going to Falmouth (thinking that more likely than Yarmouth) and not surprisingly, they were all from Portland. But then one woman said, "Wait, why don't you ask him," referring to the reporter who I hadn't felt comfortable enough with to ask. It turned out he was from Cumberland. Very close to where I grew up. And he immediately offered me a ride to Yarmouth. So, yeah, I'm getting good at this. The last three rides I've gotten haven't even been fragranced at all, knock on wood, and I've met some very nice people.
It was quite an enjoyable conversation we had on the way back (and I REALLY like that we live half a mile from an highway exit because it is *so easy* to tell people where I live. I still have no idea how to get here, but all I have to do is tell someone it's right off of Exit 15 and they know where it is.) I told him about my presentation, but naturally and organically and not forced, and he seemed interested. He knows Ani at the Jewish museum so said he'd ask her for more information. Daniel someone I think. We are both writers and had many similarities in our thought processes.
So, then I got back at about 830. Tired and annoyed at my aching jaw but happy to be doing something that brings meaning into my life... just as the painter in the movie continued to paint even after he had very little function left in his body, so will I attempt to connect with the world despite my challenges.
One line in the movie I liked was something like, "But I didn't want to paint a house on the ocean like everyone does. I wanted to paint something different." (And he did.) Maybe being different isn't so bad - if Van Gogh or Andy Warhol etc had tried to conform to what others did - if all of the greats of our time had conformed - where as a society would we be? Society would have lost many great and inventions and contributions. So food for thought.
Time to get ready to go to bed so I can go out tomorrow and try to make some more connections. I hope.
I had a very interesting experience this past weekend that I have been mulling over ever since.
It has caused me to woncder, how do we know and truly understand things about ourselves if we don't see them mirrored in others?
Neurotypicals, or people who don't have Asperger's or another neurological issue, can be pretty sure that when they interact with people on a typical day, the experience they share will be similar. Not identical, certainly, but the method of communication, common milestones, and sensory wiring will probably all fall within a typical contininuum of "normal" that allows them to relate to each other, and to really *feel* each other's experiences - the cornerstore of empathy and human relationships. But what if you have Asperger's or some other difference, and you've gone your entire life knowing that you are different and never, except in very rare circumstances, seeing someone like you?
I was in the Portland Public Market when it happened, as I usually am. If I'm not in the gelato shop downtown, the Public Market is a pretty good bet of the next place to look for me. I grabbed a copy of the Forecaster to look through and try to relax, and almost stopped dead when I saw it. "H____ ____," it said, "advocate of kids with Asperger's." I stared at the large black and white headline, thinking I was misreading something. Asperger's? In the newspaper? There's an article about.. a girl with... Asperger's? Woah!
I wanted to wave the paper around. I wanted to rush up to the nearest person and thrust it on them and say "See? I exist. I'm in this newspaper! They're talking about me!" even though, of course, they weren't.
Instead, I forced my racing mind to slow down enough to read the article. And then I popped out of my seat like a jack in the box, running over to nearest vendor and asking them if they could possibly look up a number for me. H, the girl with Asperger's the newspaper was profiling, was a senior at Cheverus High School. I called them immediately and asked if they could put me in touch with her. Days later, when that didn't work, I managed to connect with her on Facebook. A week later, we met face to face.
This was two days ago, and I've been trying to think of how to process what happened ever since. Usually, this is not a problem. I normally cannot experience anything without immediately writing about it afterwards. But how do you write about this?
How do you write about the first time I saw her, all 90 pounds and five feet of her, with a genuineness that just seemed to pour out of her skin, an otherworldly being in front of me? Her red coat and her feathered hat matched so perfectly and gave her such a sense of style, of color, of wonderful color in a grey world that made her personality jump out all the more.
How do I write about how seeing her and talking to her was like talking to a younger version of me? How do I write about how I had never quite met someone with all of these nearly impossible to name, intangible qualities, like the innocence and joy and pure selfhood that burst from her voice? How do I write about how seeing her sit there, using her hands to gesture and match her words, was so much like me that I simply didn't know how to process it?
H had grown up only a mile from my own childhood home in Cumberland Foreside. She had gone to my school district until high school, and remembered fondly my favorite childhood teacher in junior high, Beth Fenwick. She had suffered the same childhood as I had, that of being teased and bullied and not fitting in for years upon years. She too had remained nearly mute for many years, scared of her peers with an intensity that probably frightened her as much as it did me. She too took refuge in books, even going so far as to read them while walking in the hallways of school or on the ground at recess, again as I had.
But she spoke with ... something I couldn't quite put my finger on at first.The kind of self-assuredness and self-confidence that only comes from having been through hell and back again, and to somewhere along the way, perhaps quite by accident, have discovered yourself. To have realized that life is short - too short to care what others think about you, too short not to like and delight in yourself and the world around you when you can.
She told me about her transition to finally finding an accepting community at Cheverus, and I told her about the summer program I had gone to as a junior in high school that had finally let me find my voice.
She told me about the autism conference she has spoken at in Boston, and I told her about my experiences speaking at an autism conference in Philadelphia.
She remarked that she thought most Aspies needed to express their emotions in some creative form, be it art, music or writing when I talked about needing to write to process my emotions and experiences.
She talked openly, honestly, intelligently and so much without pretense or shields that I almost had to pinch myself to realize that this was really happening - that there were other people, like me, that communicated this way. She talked casually and openly about how she had felt she had no self-worth when she was younger. She thought she was disposable, not worth anything to anyone. She mirrored my own thoughts about my own experiences so perfectly. When I told her that I had liked Mrs. Fenwick, our shared junior high English teacher, because she told me that she missed me on the days she didn't see me, she got it. Maybe too much. She understood that when someone told you that you were worth something, it was almost hard to believe. When someone told you they wanted to do something with you, or that they liked you, even after years of better social experiences, you could never completely erase the part of you that was momentarily shocked. She said this all with a smile and an ease that showed that she must have spent an awful lot of time thinking about this and found a way to come to terms with it - the way I had.
Two of a Kind
Two and a half hours later, my head spinning from the conversation and my body demanding a break from the physical tension that so much conversation generated (although enjoying the emotional part of me that had been filled up), we decided to take a walk. Mini-me, as I later thought of her affectionately, tagged along with me, asking where we were going. I confidently pointed out the way.
Having lots of ideas that we liked to jot down but sometimes couldn't find the focus to carry out? Check. Self-analytical, likes deep conversations? Check. Too picky about food to eat out (also like me)? Check. Passionate about music? Check.
When we were about to leave the public market to walk to Whole Foods, I was getting my stuff together and eyed my headphones with longing. It had been a fun few hours but I could sure use some music right about then to decompress, I thought. Just then, H interrupted my thoughts by asking if it would be all right to listen to her music on speaker in her pocket. "Sure," I said, then realized that we could both get what we wanted. "How about," I said, "we both listen to our music on our headphones on the way there and take a little break?" So we did. We walked down to Whole Foods the Aspie way.
She jumped on the stone wall just because it was there, prancing and moving about with ease, joy, and the vibrant energy I had always been known for. It was, pardon my by-now over used expression, like looking in a mirror. But not a mirror I had ever looked in, because how are you going to put a mirror to yourself when you're walking around Portland, or otherwise going about your daily life? I always wondered what I looked like to others, but tried not to spend much time thinking about it. I could never take their positive assessments of me seriously, simply because I had no concept of what they would look like. I had never seen myself in a mirror before. Not myself when I was truly being me, anyway. Somehow, the negative comments were all so easy to take on faith, but the positive statements? Not so much.
So here I was, seeing myself as others surely must see me, and I liked what I saw. I mentally shook my head at her joie de vivre, her zest, her energy that seemed to fill up the world a million times over. And I thought to myself, is this what Margie meant when she said "like a ray of joyful energy in the middle of the room radiating to others"? Yes, I believe it was. An un-self conscious, purely and wholly herself, ray of light. Which I was seeing outside of myself. Have I mentioned yet how almost-creepy that was?
She liked to sing. Out loud, like I did. Later, at her house, she would sing to me the country songs we were listening to in a voice so filled with passion, emotion and just pure selfhood that it almost gave me shivers - shivers of recognition. Not of the words, but of the emotions.
"I always wonder what I look like to others," she said. Oh me too, H, me too.
Going the Right Direction
In the car on the way to her house, I tried to figure out where we were. I am terrible with directions and knowing where I am, but lately I've tried to figure it out, at least in the Portland and northern suburbs area. I got tired of not being able to explain where anything was. So when we hit the area with two convenience stores - the name which is, by the way, a holdover of what I called when I was young and there actually used to be two convenience stores - I was trying to think about where we were. "Okay," I said, "This way goes to Cumberland Center, that one goes to Yarmouth, how do we get to Cumberland Foreside from here?" H said to me admiringly "You know so much more about how to get places than I do!" Me? Good at directions? Um, yeah right. I, the queen of not knowing where I am, was being praised for that. What was more significant, though, was that I could tell from her tone of voice that she had the exact same problem I did knowing where she was since she didn't drive.
Neither of us could stop talking, even though we both admitted it made us feel exhausted to be around people for this long. Eight hours was, one must admit, an awfully long time to spend with someone you had just met... but we both wanted so much to be filled up with the other's experiences.
You know, I have always said that it doesn't matter if I have things in common with someone else. It matters, instead, if we have the same way of seeing and experiencing the world. From that, mutual interest will emerge. It has been true with all my friends, but nowhere has it been more true than in this experience. We may be twelve years apart, and our actual likes and dislikes may be nowhere similar, but our way of experiencing the world seems nearly identical. A shocking revelation for someone who had always considered herself so different from others.
If you like this, please be sure to visit my other website, Accepting Asperger's. A lot of my older writing is stored here, including an editorial I once wrote for the Baltimore Sun. Click here to see it: Accepting Asperger's.
What's it really like to be a 20 something with Asperger's? On this blog, I hope to explore that question. But this blog is not just limited to an audience of people in their 20s - this is for anyone who ever wanted to know anything about autism. I plan to delve into the nature and experience of autism, and examine it from as many angles as possible. I would like to start a conversation between people with Asperger's or autism, parents of kids with autism spectrum disorders, and anyone who just wants to know more. Let's explore what autism means, together.
My goal is to start a discussion on and build a community of people affected by autism - parents and adults with ASD - so feel free to leave your two cents in the comments section of any post. If you're too shy for that, however, or want to speak to me personally, you may feel free to email me at KGoldfie@gmail.com.
Asperger's Book for Sale
Common Scents: Adventures with Autism and Chemical Sensitivity" is the story of a young woman's search for physical and emotional safety as she journeys through the mountains of the Cascades, small coastal towns on the Oregon coast, and out-of the-way towns in upstate New York. Along the way, she experiences things she would never have dreamed possible had she stayed in her Maine hometown, and begins to learn the power of human connection.
Common Scents is the story of the last three years of my life. It gives a gripping view of what it is like to experience the world as someone on the autistic spectrum, and some would say, is an entertaining travel story as well. Because of chemical sensitivities, I engaged on a three year journey for a place I could call home.
Comments from readers:
"The Asperger's element is remarkable. I feel that I understand my son better, so much better. I laughed at this part.... because I've stared at my son in the same way for the same thing." - mother of an Asperger's kid
"Your writing style is SO engaging and interesting. It brings me right into the subject and I always experience a little emotional punch towards the end. In other words, this is the third time I've teared-up reading your work. Kate, you've highlighted ALL the problems with how social skills are usually taught." - mother of ASD kid
"I stayed up entirely too late reading the first 14 pages. I can relate to so much of what you write. I really think you are expressing the true experience with MCS and autism in words that convey the experience." person with chemical sensitivity (MCS)
"Absolutely interesting, insightful and witty. You've blended together your three themes beautifully (Asperger's, MCS and travelling). It seems seamless."