“Autistic like me”

Is it possible for non-autistics to truly understand what it means to be autistic? Can we really grasp the major effort that it takes to do the things that we take for granted? I think the answer to these questions is an unqualified, “No.”

If you’ve not read On fitting in – a response from ballastexistenz to my recent post On being different – please take a look. The post provides an insight into what it must mean to be autistic that those of us who are not autistic can only pretend we understand. (Another excellent post from her is On (not) being considered a woman.)

Here is what ballastexistenz has to say on how the world treats her:

I could and have for instance just by looking the way I do get sent to the emergency room and given drugs that I have life-threatening allergies to.

The way I look doesn’t just get people looking at me funny, it gets people trying to figure out what group home I got out of and surrounding me and detaining me and doing other unpleasant things to me.

It means that I have to have someone with me who looks “competent” just so that I will be seen as being “supervised” even if I don’t need “supervision”.

It is dangerous for women to walk outside alone in some places (not where I live, but where I used to live) but that is not accepted the way the danger to me is accepted.

Is it possible for non-autistics to truly appreciate what autistics experience as they interact with the world around them? I think the answer here may be, “Yes, kind of.”

Many years ago (too many) in high school I read John Howard Griffin’s Black Like Me, in which he details his experiences as a black man in the Deep South. The catch here, in case you’re not familiar with the book, is that Griffin was a white man who changed his appearance (through hair cuts, medicines, and skin coloring) to become a black man.

More recently, actresses in “fat suits” have done something similar, going out in public and observing how they are treated. I remember an interview with Gwyneth Paltrow when she was filming “Shallow Hal” where she said she was brought to tears by the way she was treated when in costume away from the movie set.

Several actors/actresses have portrayed autistics in a wide range of movies, from Dustin Hoffmann in “Rain Man” to Leonardo DiCaprio in “What’s Eating Gilbert Grape” to, most recently, Sigourney Weaver in “Snow Cake.” But they did not have to experience the negative treatment of society, mainly because too many people know who they are and would know they were just ‘acting.”

What kind of experience, what kind of insight, could a non-autistic person gain by “passing” as autistic? More importantly, what kind of insight could a non-autistic person who did this pass along to the rest of us? And would we listen?

From the wikipedia entry for Black Like Me:

Because communication between the white and black races was particularly strained at the time of the book’s writing, neither race really knew what life was like for the other. Griffin felt that the only way for a white man to know what blacks experienced was to become a black man and then travel through the South.

To understand someone, walk a mile in their shoes….

tagged as: Autism, Asperger’s Syndrome, Black Like Me, John Howard Griffin, Fat Suits

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Achievement carries no timetable

In No Pessimist Ever Discovered the Stars, Estee Klar-Wolfond takes a moment to discuss her journey so far with autism. I think many parents of autistic children will find familiarity in her experiences, especially in this little bit:

Over time, in researching autism and running my son’s team as my full-time job, I stopped listening to the “experts” and turned to people with autism. It is through them that I am at a wonderful place on this journey – learning to absorb, live with, and continue to try and understand autism perspectives.

I have come to view it as another marvelous way of being and I believe this benefits Adam and my entire family. Adam continues to learn as we respect his many needs. I believe he could have become aggressive, banged his head – and he might if he meets the wrong teacher. I know that it is because we acknowledge his frustrations and help him through them that he is a “well-adjusted” kid – he seems to be developing good sense of self and a healthy attachment to me.

There were signs early on that this could have been quite a different scenario. Had I listened to the experts, we would not be at this point today.

Estee then goes on to provide 10 lessons she has learned along the way. Check them out.

(btw – the title of this post comes from #8 on her list)

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My dogs are jealous of my computer

I recently received a copy of Temple Grandin’s latest book, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior, to review. I’m about a third of the way through, and will post a full review once I’ve finished, but I wanted to write about an “ah-ha” moment that came after reading one of the early chapters.

I spend a lot of time at the computer; basically all day, and sometimes into the night. Occasionally the dogs (two big Old English Sheepdogs) will be in the house and come into the office to keep me company. They’ll come in, ‘let’ me pet them for a while, and then lie down and relax. If I’m reading, talking on the phone, or leaned over the desk writing (with pen and paper), they are content to lie around.

As soon as I pull out the keyboard drawer and start typing, however, they invariably get up and come running over to the desk. They take turns sticking their heads in between my hand and the keyboard. Sometimes I’ll have one on each side of me.

At first, it irritated me. Now it amuses me, and I’ll pet them for a few strokes before shoo-ing them away so I can type. But I couldn’t figure out why they did it. Until now.

I think that my sheepdogs are jealous of my computer, more specifically the keyboard. When I pull out the keyboard and start typing, I believe that they think I am “petting” the keyboard!! Their behavior is exactly the same as if I were petting one of them and not the other. They always jockey for top position in getting there head scratched, and I think they are just trying to prove their ‘dominance’ over my keyboard.

From my perspective, their behavior is confusing. From their perspective, it is perfectly reasonable. In fact, from their perspective my behavior is probably confusing.

A lesson, I think, that applies to interpersonal interaction as much as interspecies interaction.

tagged as: Autism, Asperger’s Syndrome, Animals in Translation, Temple Grandin, Old English Sheepdogs

Indulge your (kids) obsession

Indulge your (kids) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys ‘eat, sleep and breathe’ football and people seem to think that if someone doesn’t, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn’t shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.

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On being different

Our differences are to be celebrated. Just look at Apple Computer’s Think Different campaign. It is through our differences that we as a society grow. At the same time, it is our similarities to one another that allow us to continue to exist as a society.

Since posting Disabled? Or Different? a few days ago, I’ve been thinking more about what it means to be different in the world today. Wade Rankin has helped me focus these thoughts with this excerpt from his post Our children are smart. Now what?

[She] correctly argues that autistic individuals should not be forced to think or act like so-called “normal” people. Nevertheless, the human race has a social construct that favors those that are able to use their individual gifts in ways that benefit society as a whole. We may struggle to change the negative views that have traditionally been assigned to autism, but humankind’s basic social nature will not change. Even for someone like [her], who has overcome adversity and prejudice to a remarkable extent, making a contribution is not easy.

No one should be forced to act “normal”, but the fact is those who don’t will always be isolated somewhat from society. If I walk down the street and turn a circle every couple of steps, people are going to avoid me. No one’s forcing me to walk a straight line down the sidewalk, but if I don’t then I must be willing to accept the consequences.

I agree wholeheartedly that society needs to learn to be more accepting of those who are more than just a little different, but at the same time I think those who choose to be different (is that flame-bait, or what?) need to be more accepting of the “normalness” of the world around them and realize that if they want that world to accept them they have to at least make an effort, no matter how small, to “fit in.”

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Accomodation and tolerance are two-way streets

As we all know, there is a lot of talk about accomodation and tolerance of people’s differences. It seems to me, though, that most of the accomodation/tolerance being preached is one way: That person/culture is different, so you should be accepting of those differences and accomodate them.

We all tend to look at things through our own lens, focusing those things that matter to us while de-focusing those things on the periphery. We all expect others to be ‘tolerant’ of our way of doing things, but don’t always recognize that others expect the same from us. Of course, this can be taken to the opposite extreme.

I remember a conversation in a business class I was taking related to negotiations. At the time, the US and UN were trying to get Iraq to comply with weapons inspections. Secretary of State Madeleine Albright was the chief negotiator. One of my classmates made a comment along the lines of, “The Arabs don’t respect the role of women in this kind of situation. We should send a man to do the negotiation so we don’t offend them.” My eyes bugged out and my jaw dropped to the floor. What?!?

Consideration for others goes both ways. It doesn’t matter who is “right” or “wrong”, or who is “privileged” or not. If you expect others to accept you, and tolerate you, you need to be willing to accept and tolerate them.

Finally, a description for ‘best practice’ I can live with

I’ve written before about my ambivalence toward “best practices,” at least how many people define them: one-size-fits-all checklists of things that worked for some successful team in the past that should be used by anyone that is doing anything remotely similar. In other words, tacit knowledge made explicit with no accounting for the context or knowledge of the people/team expected to use the practice.

On the recommendation of Larry Prusak, I am currently reading Knowledge, Institutions and Evolution in Economics (The Graz Schumpeter Lectures). I’m about 2/3 of the way through, and am still digesting most of it (I have the feeling I’m going to need to read it again to truly appreciate it!), but the following quote (on page 64) from ‘Routines and other recurring action patterns of organizations: contemporary research issues‘ by Michael D. Cohen et al (published 1996 in Industrial and Corporate Change) caught my eye:

A routine is an executable capability for repeated performance in some context that [has] been learned by an organization in response to selective pressures.

Replace “routine” with “best practice” and this becomes a description of best-practice that I can live with.

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