Pretend, Don't Annoy

On Asperger Syndrome ~ Blazing The Aspie Trail, a facebook group for Aspies, there is a discussion about annoying people. One of the commenters noted that he has to pretend in order to keep from annoying people. Here's my contribution to the discussion, maybe it will help you cope with being an Aspie:

Pretending is over-rated, but it helps us not annoy people so bad. Things I find it useful to pretend:

1. Pretend I'm not nervous: People don't like being around anxious, nervous people. I pretend I'm not nervous by trying hard not jitter, stim, or other nervous movements, and by trying to move slowly and not drop things. I speak slower to avoid stammering.
2. Pretend I don't know they're wrong or dumb: People are SO OFTEN wrong, have poor logic, and make poor decisions, but for some reason, no one likes me to tell them. This is not just me. People don't like for YOU to tell them how dumb they are, either. So stop doing it.
3. Pretend I've got a particular fault: This one's tricky, and sometimes feels dishonest. For example, if we're in church, and everyone messes up saying the weekly verse, I will intentionally mess up mine- even though I can say it flawlessly. I will not be the only one who gets it right, because for some reason many groups of people, even church folk, get mad at you when you're the only one who always gets things right.
4. Pretend to lose games: I used to always play to win- and I almost always won! But just like people don't like a know-it-all, people don't like someone who always wins. So I started learning how to lose on purpose. Not all the time, but often enough. Sounds dumb, but I get to play more. Usually, I'm only playing to "hang out" with the other player(s), so it does not matter to me if I win. Occasionally, I am playing to impress someone, and those times I do not play to lose :-)
5. Pretend I understand what they're saying even though I can't make out their words: If it's social conversation, sometimes I don't understand the words. I hear them, but my mind hears a jumble. I've found that it usually causes more trouble to ask them to explain, and it doesn't matter if I really understand. The words of the discussion themselves are of no real consequence- they're just talking to hear themselves talk or be "friendly" and I am doing my part simply by listening, nodding my head, and chiming in when I can (if I can). I do NOT pretend I understand if it's work related, however, because the consequences of doing my job incorrectly are too dire.
6. Pretend I know when I'm going when I'm really lost and very, very, scared: When I look lost and scared, the wrong kind of people always seem to approach me. Now when I get lost somewhere, I keep my head up, shoulders back, try hard to hold back the tears until I get to the first "safe place" I can find, like a gas station, bookstore, bank, etc.

Indirect Apologies

The other day I said something offensive to a colleague about his appearance. I didn't mean for it to be offensive, and in fact, I lumped both of us into the same category. Basically, we both work hard on our appearance and diet, neither of us has much to show for it. You should have seen his face! While I could tell he felt I was right about *me,* he certainly didn't appreciate my noting he had a similar problem.

As I went back to my desk, I wondered if the best way to handle it and avoid future office tension would be to go up to him and apologize. So I did. I started off with "hey, I'm not the best with people, but I'm learning, and it occurred to me that what I said was not exactly polite. I'm sorry."

Despite his earlier look of shock and anger, he insisted he didn't know what I was talking about. I wanted to keep re-hashing it, when I remembered something my husband said a long time ago:

Not everyone is as direct with you. Sometimes people apologize indirectly, and expect you to respond indirectly.

I realized he was accepting my apology indirectly, even though I was rather upfront about it. By pretending nothing bad happened, he was accepting my apology without rehashing it. This is considered polite in some social circles, and always used to throw me off. If a guy kept insisting he didn't know what I was talking about, how could he accept my apology? This used to confuse me, because I would never tell someone I didn't know what they were talking about unless that was the truth.

So I laughed, said, "hey, if you don't remember, I'm not going to incriminate myself," and went back to my cube. I spent the next hour or so pondering the different ways people apologize-often indirectly. My apologies are fairly simple: "I'm sorry, I was wrong, and I'll try really hard not to do that again," and I think that many Aspies are the same.

So, below I give some examples of indirect apologies and hope this short list will help fellow Aspies. Many of us learn best by cataloging experiences, so feel free to add to this list by leaving a comment. You'll be doing future readers a favor!

Examples of indirect ways people apologize

1. They might go out of their way to do something nice or extra special for you. Buying flowers, chocolate, offering to do one of your chores or errands. Things like that.
2. They might start being friendly to you again (after they've done something to upset you) without ever mentioning it. This is hard for me, because I don't like unresolved issues, and want to get things out on the table. But for some people, getting it out on the table is too direct, too rude. We must be careful not to confuse this with trying to USE us (ie do us wrong, then come back and do us wrong again). If the person is not just trying to take advantage of us (to use our car, money, body, etc) then the expected "I forgave you" response is to be friendly in return. There is no need to mention the problem.
   
3. They might tell you they've forgiven you for something you did, but really they were wrong. I've had this happen several times, but did not recognize it because from my point of view the other person was clearly in the wrong. I would make a big stink out of pointing out they were wrong, not me, and totally missing the opportunity to repair the friendship. For example, I moved into a house that came with a dryer, but preferred to keep my own. I told a friend she could have the old dryer, but needed to pick it up by a certain date because I wanted the house clean to accept my first born child. She never picked it up. I gave her an extra month, and then told her I would sell the set. Two months later, she still hadn't come. So I sold it. My son came 3 weeks later, so I'm glad I did. Out of the blue, 4 months later, she told me she forgave me for not giving her the dryer. I was blown away. Forgive me? I gave her 3 extra months and many gentle reminders. This is when my husband explained to me that it was her way of apologizing. She knew she was wrong, but people just don't like to say they're wrong. It's too hard.

An indirect way to try and get you to apologize

1. They apologize to you, even though you're the one at fault. This opens communication and is an excellent time to say, "You know, I've been thinking about it, and I'm really the one who is wrong. I'm so sorry." This is also used as a technique to smooth over relationships, especially at work,though it might not solve the problem of who is to blame. I have used this technique even though it sometimes makes me look wrong when I'm not. The work environment is more important than my pride.

General notes about apologizing:

1. Try not to use the word "but," as in "I'm sorry, BUT..." or, "I didn't meant to hurt you BUT..." because most people interpret the word "but" as negating whatever you just said before you said "but."
2. Be sincere. This can be hard for Apies, because we often aren't sorry for the action- just the consequence- and we sometimes feel dishonest when we have to apologize for something we don't think is wrong. If you're apologizing just to keep the peace, find something that you can really feel sorry for. You may not tell the other person this, but it will help you for being sincere. For example, you told Aunt Martha her quiche was nasty. You're not sorry for telling her, because it REALLY was nasty, and maybe now she'll stop making it for you every time you come over. And you're not even really sorry for hurting her feelings, because she obviously didn't care about YOUR feelings, or she would have asked you what you wanted to eat :-) But you DO care that your mother has grounded you for being rude, and you're very sorry that you are grounded. You might tell Aunt Martha, "I'm sorry about what I said (which is true because of the consequences of saying it). I didn't mean to offend you about the quiche- I just wanted to experience all those other dishes our family members keep talking about." Of course, if Aunt Martha is a horrible cook, you'll have to come up with your own second sentence or just cut it off at "I'm very sorry about what I said."
3. Here's a great book on apology, which will help us understand that everyone is different- even when it comes to apologizing! The Five Languages of Apology: How to Experience Healing in All Your Relationships
   
   

Now it's your turn- please add your thoughts to the list, preferably backed up with real-world examples.

The Cure Debate Continues

I was about to comment on this post at Life on the Spectrum, but it grew so long, I figured I'd better post it here instead... after all, I don't want to be accused of hijacking another blog.
If you haven't read it, basically she succinctly outlines several sides on the cure debate, culminating with her viewpoint as the mother of an autistic child. You can view her blog for what I actually commented, but let me share with you what I originally wrote:

Well said...

The autism spectrum covers such a wide range of behaviors. I've worked with two main groupings:

When I am invited to speak at aspie groups I find many adults who wish there was a "cure pill" but it's becoming more common to see "advocates" who are like your example of the guy with the broken leg. "We're fine, leave us alone," they say, yet ignoring the condition of the other who can't speak for himself and though he's in a coma, we might expect he would very much like medical intervention for his par paralysis, should he awaken.

On the flip side, there are those children I've worked with who are at the far extreme- spending of their days in restraints/padding, unable to communicate, and where the parents have placed their child in an institution (sometimes works out sometimes doesn't), or in some sad cases, resigned themselves to a life of drudgery.

I don't know if there's a right answer. On one hand, those who are high "enough" functioning could chose to eschew a cure, but what if that decision is made by parents less dedicated to their child than you [the original poster] are? You work really hard to help your son be the best he can be in spite of Autism being a part of his life.

I had one parent tell me she wished her son could take a normal pill because all he cared about was technology, and she just knew she would never have grandkids. She wanted him on the football team, lamented that he wasn't interested in going to prom, and would never be “normal.”

I wanted to shake her and yell, don’t you realize there are parents who can’t even COMMUNICATE to their autistic child, and you’re whining about the PROM? A LOT of people don’t go to the prom. A LOT of people are more interested in technology than dating. A LOT of people aren’t on the football team.

I declined to do so because a) I really wanted to help her son and b) my experience might be skewed by working in the sciences where many of the people I’m surrounded by would probably be diagnosed with AS. So I gave her some ideas to help him see the value of being more "normal" (a core foundation of all advice I give to parents) and went on my way. I've never spoken to her or her son again.

What I'd ultimately like to see is a world where all of the factors underlying autism are understood to the point where we can shred out the condition and determine who can "get by" with non-invasive, non-medical interventions and provide those options, while at the same time offering medical miracles for more severe cases.

So that's what her post evoked in me.

In the short term, what I'd really like to see is more understanding. Understanding from those who HFAs who are self sufficient toward those who need medical (and other) intervention. And understanding from those who struggle with the staggering (and, often horrid) world of parenting a child with autism toward those HFAs who just want to be left alone.

A Disabled God

Let me start off by saying I do not agree with many of the late Nancy Eiesland's views, however, I do think that the part that I've bolded and highlighted below bears consideration.

Nancy Eiesland Is Dead at 44; Wrote of The Disabled God


By DOUGLAS MARTIN
March 21, 2009


By the time the theologian and sociologist Nancy Eiesland was 13 years old, she had had 11 operations for the congenital bone defect in her hips and realized pain was her lot in life. So why did she say she hoped that when she went to heaven she would still be disabled?

Nancy Eiesland specialized in the theology of disability.

The reason, which seems clear enough to many disabled people, was that her identity and character were formed by the mental, physical and societal challenges of her disability. She felt that without her disability, she would “be absolutely unknown to myself and perhaps to God.”

By the time of her death at 44 on March 10, Ms. Eiesland had come to believe that God was in fact disabled, a view she articulated in her influential 1994 book, “The Disabled God: Toward a Liberatory Theology of Disability.” She pointed to the scene described in Luke 24:36-39 in which the risen Jesus invites his disciples to touch his wounds.

“In presenting his impaired body to his startled friends, the resurrected Jesus is revealed as the disabled God,” she wrote. God remains a God the disabled can identify with, she argued — he is not cured and made whole; his injury is part of him, neither a divine punishment nor an opportunity for healing. [emphasis mine]


Ms. Eiesland (pronounced EES-lund), who was an associate professor at the Candler School of Theology at Emory University in Atlanta, died not of her congenital bone condition, nor of the spinal scoliosis that necessitated still more surgery in 2002, but of a possibly genetic lung cancer, said her husband, Terry.

Ms. Eiesland’s insights added a religious angle to a new consciousness among the disabled that emerged in the 1960s in the fight for access to public facilities later guaranteed by the Americans with Disabilities Act of 1990. The movement progressed into cultural realms as disabled poets, writers and dramatists embraced disability as both cause and identity.

Pointing out that anyone can become disabled at any time, the disabled called those without disabilities “the temporarily able-bodied.” They ventured into humor, calling nondisabled people bowling pins because they were easy prey for wheelchairs.


Ms. Eiesland’s contribution was to articulate a coherent theology of disability. Deborah Beth Creamer, in her book “Disability and Christian Theology” (2009), called Ms. Eiesland’s work the “most powerful discussion of God to arise from disability studies.”

In an e-mail message, Rebecca S. Chopp, the president of Colgate University, who is known for her feminist theological interpretations, characterized Ms. Eiesland as “a, if not the, leader of disability studies and Christianity and disability studies in religion.”

In four books and scores of articles, Ms. Eiesland’s scholarship also included a much-cited book on the dynamics of churches in an Atlanta suburb. Groups like the World Council of Churches asked her to speak on disability.

For 10 years, she consulted with the United Nations, helping develop its Convention on the Rights and Dignity of Persons with Disabilities, which was enacted last year. The convention describes the disabled as “subjects” with rights, rather than “objects” of charity. It explicitly endorses spiritual rights for the disabled.

Nancy Lynn Arnold was born in Cando, N.D., and grew up on a farm nearby. Operations to remedy her birth defect began when she was a toddler. Her parents also took her to faith healers. She wrote that she was a poster child for the March of Dimes, a charity that some advocates for the disabled criticize for its appeals to pity.

After she was fitted with a full-leg brace at age 7, her father told her: “You’re going to need to get a job that keeps you off your feet. You’ll never be a checkout clerk.”

In high school, she won a national contest with an essay on the inaccessibility of rural courthouses in North Dakota. She organized a letter-writing campaign on the issue.

She enrolled at the University of North Dakota, where she campaigned for ramps into the library and accessible parking spots. She dropped out after her beloved older sister was killed in an automobile accident.

Nancy and her stricken family joined the Assemblies of God and moved to Springfield, Mo., where the church has its headquarters. She enrolled in Central Bible College, which trained ministers, and graduated as valedictorian in 1986. She became an Assemblies of God minister, but gradually drifted away from the denomination.

She became a student at Candler, where she studied theology under Ms. Chopp. Ms. Chopp remembered Ms. Eiesland’s complaining that for all Christianity’s professed concern for the poor and oppressed, the disabled were ignored.

“I looked at her and said, ‘That is your work,’ ” Ms. Chopp said.

After a stunned silence, Ms. Eiesland accepted the challenge as fodder for a master’s thesis, which evolved into “The Disabled God.” She earned her master’s degree in 1991 and her Ph.D. in 1995, both from Emory.

Ms. Eiesland is survived by her husband; their daughter, Marie; her parents, Dean and Carol Arnold; two brothers, Neal and Victor Arnold; and two sisters, Katherine Arnold and Jocelyn Gracza.

As she strove to define new religious symbols, Ms. Eiesland’s metaphors were startlingly incisive. She envisioned God puttering about in a “puff” wheelchair, the kind quadriplegics drive with their breath.

A version of this article appeared in print on March 22, 2009, on page A29 of the New York edition

Books By Ms Eiesland:

The Disabled God

A Particular Place: Urban Restructuring and Religious Ecology in a Southern Exurb

The Disabled God: Toward a Liberatory Theology of Disability

Human Disability and the Service of God

Space to be Himself

Well, I'm in the midst of business conferences and such, and haven't really had much time to blog. Even now I should be doing something else, but had this epiphany on the subway and thought I'd share. Good thing too, because I was treated to a heartwarming comment on this post (My First Hug).

Anyways, I was thinking about how I just needed to hold myself up a little longer and make it back to my room. Slap on my happy face so no one will think nothing is wrong with me. Inside I'm pretty upset about things going on in life but none of my business associates care about that.

As I exited the subway toward my hotel, I got angry at having to pretend to be someone else all the time. Pretend to be someone else on the job, pretend to be someone else at church, pretend to be someone else at home (well, actually, I've just recently started doing that b/c I realized that I don't treat my wonderful husband very well and ought to start being as nice to him as I am to the people I work with).

Then I chided myself for putting on a pity party, since NTs have to do the same thing. They're putting up a front all the time- to get your business, to get your acquaintance, have a decent working relationship, etc. They do it easier than we do. And they (usually) don't have that hard-wired sense of honesty-to-a-fault that makes it hard for (some of) us to be "polite." But they're still being "fake" much of the time.

Then it hit me.

My poor little boy- from sunup to sundown is being told who to be, how to act, what to say, etc. Unlike his mom, he can't go home and retreat into his private space because right now (temporarily) he doesn't even have his own room. He can't retreat into his home office to decompress. I don't suppose it ever occured to me that he even NEEDED space and time to decompress and be himself. I thought that came with a job, bills, and responsibilities :-) No wonder he's so angry and frustrated and never at peace. Not saying a little downtime would solve all his behavioural problems, but if it helps me I can't help but wonder if it will help him.

I'm going to discuss this with my husband and look at what changes we can make in this area. In the meantime, feel free to let me know what you think.

Early Diagnosis a Blessing or a Curse?

This post was inspired by blog hopping which ultimately ended up here at Autistic Aphorisms discussion of whether early diagnoses is a good thing. As one who has testified before my state government on issues related to autism, I have seen both sides of the coin. I think this is a discussion worth having.

You know, I remember what it's like to bang my head against the wall, both calling out for attention and trying to dull the pain. Well into my teens. Over time, I also discovered how such behaviors are interpreted by "normal people" and have learned better ways of getting my needs met. I've learned these things painfully and slowly, and with the advantage of moving faily often (a traumatic experience which I only endured because it allowed me mulitple opportunities to "start over," each time reapplying what I've learned). So it would have been better to be diagnosed with autism rather than awkward affect or whatever it was they told my mother because then someone might have helped me. Someone might have determined whether diet or environment has any effect on my processing, anxiety, and behaviour (it does) and whether behaviour modification and social skills lessons would be of use (they were). But those were things I discovered on my own.

And all aren't so able. If fact, I'm thinking specifically about the sunday school student I wrote about in the contact page of MarylandAutism.org. Everyone could look at her and tell that something was wrong. She headbanged, communicated in grunts, needed a strict routine and endlesss repetition to calm her. Yet no diagnosis of any kind for years. When she was diagnosed- I forget what it was exactly, PDD NOS I think, but that was a year or two before she passed away. After that, she made fantastic progress in a excellent school for "such children." 16 years of pain- some of which could have been eased with an early diagnosis.

But would that have really helped me and others like me? I doubt it. Had I been diagnosed as a child, there wouldn't have been much done to help me. I would not have been provided much in the way of "accommodation" (and rightly so, because there are children who can't even communicate- and I'd rather scarce resources be directed to them, not someone like me). And the bottom line is, the key thing for me was someone breaking through into my imagioned world and making me realize that there was more to life out there if I was willing to work through the anxiety, pain, and accept that others exist outside of (and independent of) me.

Actually, now that I think about it, I wouldn't have the job I have if I had been diagnosed so maybe I'm not qualified to even speak on this question!

Indeed, my life would not be where it is now if I had been able to hide behind a cloak of diagnosis, or been allowed develop the sense of entitlement that I'm noticing with some of the younger adults I work with. Its the feeling of "you have to deal with me- and accept me as I am- because I have a condition..." Unfortunately, the world doesn't work that way, and I think we do these young folks a disservice by perpetuating that feeling... yikes, I'm going to get flamed when I show up at the next aspie adults meeting...

Anyway, I've pondered the diagnosis thing mainly because of my son. I know from my work and study that he would be diagnosed as having Aspergers, if not Autism. But I'm hoping that with diet modification, expectation management, and a little patience on my end, that I can mold him into a productive young man without drugs, craziness, or diagnosis. I don't know if that's possible (we're slowly approaching a tipping point, but we've stepped up our game and things are holding steady for now).

I'm curious what others think- those of you who have been diagnosed how has it helped/hurt you. Those of you with aspie or autie children, how has it help/hurt them?

My First Hug

I was reading some mom websites today- moms of autistic kids... kinda started out with one from one of my commenters and (as usual) one mom blog led to another. As I read about their struggles, I reflected back on the first time my son gave me a hug. I'm not talking about the first time he ever snuggled with me, or the first time he held me (he was always a snuggler when sleepy or nursing). But the first time he purposely threw his little arms around me and gave me a big hug.

I was sitting in church, few years back, thinking how unfair it was. Someone up ahead had just been kissed by their six month old. Kissed. I didn't even know six month olds could kiss. I'd never been kissed my son. Never been hugged by him. I looked at my friend trying to restrain her 16 year old autistic son. Is that what the future holds for me?

As if on cue, my son perked up, wrapped his arms around me and nuzzled into my neck. He was almost two years old. I cried for the rest of the service. And about a year later I would hear "I love you." Even though it was simply a mimicked response it was still sweet music to my ears.

How I cherish the little victories...