Thursday, July 17, 2008

A serious discussion


I was on the phone. This was several years ago, before I had a name to describe what was going on with me. I was trying to figure out what had gone wrong that morning and what was continuing, throughout the afternoon, to go wrong.

My friend had invited me over on a Saturday morning. There was a serious topic to be discussed, something personal, between the two of us. The invitation had been issued on Wednesday. On Friday, something had changed. A plan had been made with several other people to have breakfast at the first person’s house. I was invited.

Since there had not been a time set for the serious discussion, I asked at this time. Would the serious discussion still be occurring? Of course, I was told. After the breakfast, there would be plenty of time.

Now, I knew that a chatty breakfast for five was not what I needed right before the serious discussion. I needed to get my thoughts together, I needed some quiet reflection time. If I chose to put a lot of energy into trying to be social, there was no way I was going to have sufficient language skills when it came time for the serious discussion. So I declined the invitation to breakfast, although I knew this would be seen as unfriendly and wrong.
At the time, I wasn’t able to explain about the energy drain that occurs with conversing. Not because I didn’t know about it. I did. But because, since Everyone said I was being ridiculous or making excuses or “giving in” to my anxiety disorder (diagnosed by Everyone), I figured they must be right somehow. I must be a hostile, or at least unfriendly, person.

This was where I made the big mistake. I asked what time I should expect to come over. When the answer was vague, I asked my friend to call when the breakfast was over and the time for the serious discussion had arrived. At this point, the friend lost all patience with me. She let me know that I was manipulative and demanding and all kinds of difficult. Why couldn’t I accept this slight change in plans, show up at her house without a specific time, without knowing for sure who would be there? How hard could it be?

In my mind, I saw a large pitcher of liquid representing my communicative resources. Already, a quarter had been drained, in the effort to find a non-offensive way to get my question answered. I pictured the rest of it spilling out as I tried to balance it like some sort of circus animal performing tricks of conversation. Everything I knew about the topic of the serious discussion had reverted to a form that wasn’t compatible with words. I couldn’t get it back.

I think we will have to do this another time. I said something like that. It was around 1:00 in the afternoon by now, and I was getting tired. Before she hung up the phone, my friend remarked that it certainly would be nice if, in the future, I’d make just the slightest effort toward accommodating others.


Today, I was involved in a conversation about the classic “triad of impairment” concept. (Personally, I prefer to call this a "triad of differences.") I thought about the story of the serious discussion that never was. Was this a communication problem or a social issue? What part did the infamous “insistence on sameness” play in the way my friend and I had perceived the situation? Are these three facets of autism independent features, or do they interact to make something unique? Is this a useful or valid way of thinking about autism? Is all this stuff in the eye of the beholder anyway? I thought I would take another look at this story with those questions in mind.

For my friend, the key issue was probably my need for things to be exactly as stated. She saw a very inflexible person, someone unable to tolerate a change in plans. Indeed, this has been a constant theme throughout my life. I wonder if non-autistic people think much about the reasons this is true for some of us on the spectrum. In my case, at least, there is an overwhelming sense of unpredictability that is a part of my very being. From one day to the next, from one hour to the next, I am never sure how well I will be able to speak. I still have days when, no matter how sincerely I have formed the intent to speak, no matter how clear the thought is in my mind, no words come out. At other times, words tumble out unpredictably, announcing irrelevant information or stating something tangential or even in opposition to what I am thinking.

Speech isn’t the only area where this happens, but it is the most frequent and obvious example. It is possible the issues I have with oral communication are at the root of a wide range of repetitive needs, from the physical stims that I use to keep myself moving to the so-called perseverative interests which hold my attention in part because of their reliability.

While my insistence on sameness was, on the surface, the thing that annoyed my friend, deeper inspection would have revealed that she saw my primary problem as a social one. She had said to me on several occasions that I was afraid of people and just needed more practice socializing to become more comfortable.

There is some truth in the idea that I was (sometimes am) afraid of people, especially in groups. It is clear to me how I learned this fear. I learned it through experience with many, many people who reacted to me as if I were somewhat less than competent. I learned that my ways of communicating were not acceptable and would not be tolerated by most. I came to believe that I would be either ignored or mocked or vilified or patronized if I dared to appear in a group of people. I believe these reactions resulted mostly from the way I talked or didn’t talk, as well as my differences in understanding and transmitting non-verbal cues.

I think now that the way I see the day of the serious discussion is not at all the way my friend would describe it. I always thought that if I could only explain to the people in my life what I was thinking, they’d see I wasn’t so different after all. The fact that I am so often unable to do this through speech, that is the central point for me, the key to understanding and describing my own autism.


  1. Wow. Thank you for opening up like this about communication. Communication between friends is never easy when there is a conflict. Add Autism to the mix and I imagine it is made even more difficult. I do however wish your friend could be more patient and understanding.

  2. Your friend was probably just upset about whatever it was she wanted to talk to you about. Don't be hard on yourself.

    Ooh, I'm listing to good music right now. (Stim, Rock, Stim, Flap...)

  3. Great post, Bev. Your use of metaphor with the pitcher of water is compelling.
    What I think is great are the strategies you have developed to help alleviate some of the difficulties that your variable speech presents.

    The fact that you and I pulled off the radio gig is a good indication that whatever strategies you employ work well in specific circumstances, as that was a very pressure-packed situation. Kudos for that.

  4. thank you for another wonderful conversation post.

  5. At school, after it had been almost 60 days since the parental consent to evaluation paper was signed and turned in, I asked one of the special ed teachers if they knew when the evaluation would begin, and they said they thought it would begin the next day.

    So I waited, the next day there was no word, and I waited an additional two days, and no word. So I went to speak with the director of special services and the psychologist, to ask when the testing would be, as the other teacher had told me it was to start two days earlier.

    The psychologist gave a "sad nod" and said to the director of special services, "see, there's that autistic rigidity" and when my mom was meeting with him, he cited it as an example of how I was unable to cope with change!

    Just because he's uncomfortable that I actually know the IDEA, doesn't mean he gets to patronize me and dismiss my questions and concerns and initiative (the last of which being something that, due to various factors, was a relatively new development in my communication skills) as deficits.

    Fortunately, when I have explained to friends about verbal shutdown and how energy-draining socializing can be, they have mostly understood (they also know I'm autistic). My dad at work, has gotten comments like "you just need to get out more" or "come on, it's no big deal" type things, because they don't understand that something that is effortless or nearly so to them, can actually take up a lot of energy for another person.

  6. Excellent Bev. I also thought the pitcher metaphor made a clear picture of what it's like. hmm (pardon my brain going off on a tangent, but interesting that in my mind it is a clear pitcher)
    It seems to me, you were attempting to compromise. What more should a friend expect? Good that you can look back on it, and know that you and she saw the events so differently.
    and i really dislike word-verification.;p

  7. Bev, the issue of lack of flexibility or insistence on sameness is interesting to me, because I've noticed that the very people who have the biggest problem with my son's inflexibility are those who are themselves inflexible and cannot tolerate different ways of doing things.

    When looking for teachers and babysitters, my primary criteria is always "flexibility." If they insist that everyone conform to them (exactly what my son supposedly does), I know they will be a terrible fit for my son and my family.

    This is something I've been thinking of recently in light of autistic children being asked to leave public places, and I'll post more about it when I get my thoughts together a little more.

  8. I've got to the point now where I realise that there are plenty of times when being social is so difficult I can't do it. It's very hard explaining to people that it's not because I'm shy, or because I don't care about other people, but because unless it is a quiet, calm environment with about one or two people I will really struggle to cope with all the noise and the visual crowding and concentrating my thoughts on what the subject is about rather than what I am thinking about and also having to concentrate on being able to physically get the words out a lot of the time. We went to an aunt's 80th birthday party on Saturday night. It was extremely busy, extremely noisy and filled with people I hardly knew or didn't know at all. Tom was given a pen and a piece of paper and got to work writing down numbers and names and because the family know he's on the spectrum they understood and let him alone. I managed to say "hello" to everyone then couldn't speak or look at people at all. Fortunately Jacob behaved like a typical two year old and wanted to run around everywhere and go and explore other rooms which were a lot quieter so naturally I followed him to those quieter rooms :).

  9. As usual, your post is clear, excellently written and thought-provoking. The way I see it, you were flexible in re-planning the time, and assertive about your needs, so your handling of the situation was good.

    The water pitcher is indeed a useful metaphor. For a long time, I have thought of the same thing as a "reservoir." In conversation, I often call it "resources"; I emphasize that there are many types of resources, including both financial and emotional. People have varying levels of these, and the haves rarely seem to "get" the have-nots.

  10. I do not have a diagnosis (we're working on one for my son right now) but I have a lot of the same communication problems. It comes out well in writing but not speaking.

    I have often been accused of being rude because of a lack of response. My mother recently told me she was ashamed of how rude I am because we were out and an old friend from high school came up. I hadn't seen her in awhile, and she was talking to me, but I could not say a word. I later tried to explain to my mom that I couldn't find the right words and phrases to answer her, and I couldn't come up with any questions to ask her.

    If I had known ahead of time that I was going to see that friend, I could have prepared a mental list of things to say or questions to ask.

    I hate spontaneity.

  11. Thank you for this post, it has given me something to think about throughout the day (your entries are good at doing that).
    I find it very difficult to understand why people who are not on the spectrum seem to have such a difficult time with those of us who need calm and quiet and order. I have been recently diagnosed (at age 33) and just now am beginning the long process of re-defining who I really am. It is very interesting for me to finally be able to think of myself as one who has differnces rather than one who is generally "incompetent".
    I have had similiar experiences to the one that you describe. Thank you for your thoughts on this issue.

  12. This is heavy, and reminds me very, very strongly of stuff that has happened between me and friends (leading to the end of friendships on more than one occasion).

    I was going to start writing about my similar experiences in this comment, then thought, no, that would be hijacking your post, and would be better off becoming a blog post of my own.

    I really love your writing style in these kinds of posts. Powerful and enlightening.

  13. I think your friend was being grossly inappropriate. You had the right to be given one on one attention for your conversation with your friend. She should have stuck to the original plans or given you a different time frame.

    Even if you didn't have autism and you could roll with the changing situation, her behavior would still have been inappropriate. She wasn't being fair to you and then she blamed you for not being accomodating.

  14. *delurks*

    I'm linking this. Thank you for writing it!


  15. It just occurred to me that I'm only inflexible with people I see as having equal or more power than I do.
    When I'm looking after autistic kids, I'm quite flexible.

  16. I'm not autistic to any degree (as far as I know), but I do have ADD, and I sometimes wonder (by way of attempting to empathize) what it would be like if people just thought I was lazy or too inconsiderate to remember things.

    I prefaced that because I don't want this to sound harsh, but: why not figure that they'd be done with breakfast by like sometime in the early afternoon (barring the possibility of someone staying a bit later) and show up then? Was it a sort of anxiety about change? Or was it a concern that if there were something going on when you showed up, it'd be too much of a drain?

    I have to say, though, I don't see why your friend refused to accept "Sorry, I'm not up for a big social thing in the morning...just give me a ring when it's over and I'll come by." That's a perfectly ordinary request, one that non-autistic types make all the time. I guess maybe she was just stressed out, as a previous poster suggested.

    It's really interesting to read these kinds of things, written from another perspective.

  17. Hi I am Oliver A. FP's mother in law; I found your blog via a link from his.
    We've struggled with our relationship for years.
    After I while I was told of his autism, but knowing OF autism does not equal understanding of it. I am now learning a little, trying to adjust my attitude, expectations and reactions, and I hope that the improvement I feel in our relationship is also felt by him. Thanks for your blog.
    It must be monumentally difficult communicating the difficulties one has communicating.
    I think the nearest I can compare it to personally is when I get a severe migraine I get monosyllabic, as I feel I am thinking through treacle.
    Another analogy is the spoon theory, often used by those who suffer from fatigue

  18. Frankly, I don't see you as being the manipulative one here.


Squawk at me.
Need to add an image?
Use this code [img]IMAGE-URL-HERE[/img]