Wednesday, August 22, 2007

Independent Living

Sometimes I wonder where I would be without the natural supports I am lucky enough to have: a caring partner who makes sure the bills get paid and that I call my mother once in a while; a boss who understands that my way of getting things done may be different, but is no worse than the way of my co-worker; a best friend, who explains, for example, what Sally meant when Sally said X after I did Y and what consequences might arise. These people help me. None of them do it because they have to or because they see me as damaged or incompetent. Of the three I’ve mentioned here (and there are others), one views me as clearly autistic, one rejects the “label”, but accommodates the differences, and one is unaware of any label which might describe me. These people value me for who I am and have decided they want me in their lives. Making these small adjustments is as natural as holding open the door for someone whose arms are full of packages. It really is no more or less than a matter of respect and common sense. I reciprocate by taking occasional bad tempers in stride, remembering important dates, pointing out two shades of green in an outfit that don’t work well together, and in other ways so automatic I don’t even notice them.

Others, of course, have not been so kind. What Sally said, for example, was not a thing you would ever say to a person you meant to appreciate, befriend or understand. And there are far more Sallies in my world than I care to think about.

And certainly, not every autistic person has been this fortunate. For all of us, but especially those who have not found these natural supports, the short and mid term goals of assistance must be supplemented with the long term goal of societal change, acceptance. On Kristina’s blog today was much discussion of the term acceptance, whether or not it can coexist with a hatred of autism as a condition, whether it is an active or passive value, whether it equates with giving up, what effect it might have on the development of independent living skills.

One commenter worried that his son would never drive a car or flirt with a girl. How, he asked, would societal acceptance of autism help his son achieve these goals? The answer is obvious to me. Societal attitudes cannot help a person learn to drive safely, but they can change how much importance we place on this skill as well as on the increasingly necessary development of alternative modes of transportation. True and widespread understanding of autism as a valid and worthy way of being human would also have to include the knowledge of differing verbal and non-verbal communication styles.

Picture this:
A young man arrives by bus to the restaurant, meeting his date, who is waiting near the entrance. “I have taken the number 88 bus and have spent 47 minutes in transit, stopping 16 times. Seven people got on the bus; four got off before me. The bus returns to this stop at 9:45 and at 10:50, and will be heading due East at that time. This bus was a New Flyer model D45V, but the one that comes later may be different. I hope I have not kept you waiting”.
“You have buttoned your shirt incorrectly,” she says. She smiles at him, he looks at the wall, and they walk into the restaurant, where he orders what he always orders and she tries something new. She understands when he says something "awkward" and he deals with it when she asks a too personal question and they begin a new difficult uncertain and rewarding life together. A better world.


  1. That was insightful.

    I met an Aspieboy-he is an engineer. He is an introvert-I am an extrovert. He is very tidy. I am....not so much the tidy. We have gone to a museum to look at yellow things. We saw an Egyptian sarcophagus and I remarked that I knew what King he was and his reply was.....did you know him personally.

    We have gone to a Koi pond and discussed the alga.

    We like astronomy, Gary Larson, and Star Trek. We do not like things that flicker.

    We drive. Aspieboy likes to count things and gets distracted. I can memorize any map easily but I cannot write code.


  2. That's a good story, Sarah,very poetic: "We like astronomy, Gary Larson and Star Trek. We do not like things that flicker" Sounds just like Frank O'Hara, a raging neurotypical, my favorite poet.

    Glad to hear you are enjoying life with your Aspieboy.

  3. Bev -
    If ever there was a way to respond to a person (probably a father - I haven't read the comment) about driving and flirting, your story is it. It is unfortunate that that person cannot see that there is more than one way for a person to view the world. Very nice post - thank you.

  4. ...This bus was a New Flyer model D45V, ...

    Are you sure you didn't mean a D45S? I'm pretty sure New Flyer only made one 45' model of bus, the D45S.


  5. Once again you nailed it. Beautifully written. I always send your posts to family members who are still learning.

    - Missy

  6. Thanks for this. Every once in a while I stop by here, and I'm never disappointed.

    The fact that you are able to share all this is a valuable gift--one I am grateful for, and one that very often opens my heart and my mind to a new thought or idea.

  7. Thanks to all for the kind comments.

    Joe, I knew someone would call me on the bus model. I'm not as much of a trasport geek as I try to be. I was sure it would be someone autistic, though...

  8. "You have buttoned your shirt incorrectly," she says.

    That is so . . . romantic! :D

  9. Another point about buses as disability accommodations: Anyone can ride them. You don't have to show that you have been diagnosed in a qualifying medical disorder category or get documentation from your doctor proving that you are unable to drive a car before the bus driver will let you through the door.

    Society simply recognizes the fact that some people need to ride buses, for a wide variety of reasons, and that making buses available is therefore a useful public service.

    All accommodations should be as easily available.

  10. Add me to the people who love your response to the person worried about his son flirting and driving. I am always irritated when anyone assumes that my children must marry and have kids (the are 6 and 3 years old, by the way). I tell people, my children are individuals with choices to make. Whatever makes them happy is fine with me. My life is not going to be a misery if my kids don't do "the norm." I will, however, suffer if my children don't live in a world where they are able to seek out their own path.

    karen in CA

  11. Sorry, Bev, I'm not on the spectrum (that I know of). Just a bus geek (though I'm much more enamored of over the road buses than metro ones).


  12. Hi Bev -

    Somehow my point was missed by several folks; I need to get back to autismvox and try to be clearer.

    I'm not concerned about cooking, or flirting per se with my son. Rather, my concern is that he will not have the ability, the cognitive ability to do those things if he so chooses. No changes to society as a whole are going to give my son the ability to make those decisions; it has to be him.

    As far as I can tell, my son does not understand anything abstract at all. The number one, two or three; the colors green, yellow, or red, yesterday, today, or tomorrow; A, B, or C, the fact that there is another person on the end of a telephone, crayons can be used for coloring.
    All of these are all concepts that are unknown to him.

    Not only does the person in your story have the ability to speak; but he understands the abstract; that buses have numbers that are meaningful, the direction East is different than the direction North, there are different models of cars, and that another person might feel inconvenienced by someone else being late. Society can be changed to accept people with these skills, sure.

    I'm not sure you can retool your story such that the boy on the bus has no recognition of these kinds of things and keep the tone you'd like to at the end.

    This is why the notion of changing societal attitudes seems so moot for my son's situation.

    I like your blog.

    - pD

  13. Dear Passionlessdrone;

    Asperger's Autism is titled such because those who are dx'd with it are Aspies and our life outcome is different than other sorts of Autism such as Fragile X. Our numbers of full of people like Keanu Reeves, Steven Spielberg, John Elder Robison, Square Eight and the straight talking square dealing abfh.

    Now I personally dislike pigeonholing people as a rule.....but I accept that sometimes categories are needed.

    The Bus Story is very applicable to Aspie Life. It is not very applicable to people with other sorts of Autism that have carry other strengths or weaknesses.

    Autistics of a different flavor have differing issues than the Asperger's Community.

    This story does not need to be retooled to accommodate another Autistic captures perfectly the Aspie Life.

    Best Wishes,

  14. I don't know how many times I've been told by people "you'll never be able to drive", "you're not a people person", "you won't adapt", "you'll be an awful traveller", "you'll never move up in the organization", "you'll never learn"... ...and I've proved them wrong.

    ok, sometimes it can take a bit more times and effort than most, ok, that might be an understatement, but I don't rule myself out or type-cast myself. If it were by much of what I've heard throughout my life, I would be the "least likely to succeed". They are not my steering committee.

    And, I'm damn glad that autism was not eradicated out of my being. I leverage on the good aspects. These make me what I am and I owe to autism many of the aspects of my success.

  15. Usually I love trains and busses. In the country where I was born, public transportation is so cheap and goes practically everywhere in the city that it's just awesome.

    But here in the States it's so darn expensive and doesnt go to hardly as many places.

    I commuted from South Jersey to New York City for a year by train. Driving was just too nerve-wracking, and even more expensive (Because it was New York City). But this is more the exception in costs. Usually I find the bus and trains to be expensive.

    The train in this case gave me peace of mind. It stuck to a schedule and was generally very predictable. Even in inclement weather.

    One thing tho. Sometimes busses and trains can cause social anxiety when these are packed with people. Some if these people can be very chatty and sometimes loud or on their cellphones and they can rub against you and literally rub you the wrong way. xD

    One of the problems I've had to somehow learn to overcome while driving is not to fixate on patterns along the way as I find some of these pretty distracting. No, it's not ADD, it's more like pattern fixation. The geometry of the signs, the dashed lines dividing each lane, etc. My response time has gotten better over time and with practice.

    But a few months ago my job moved to this far-away office. It's within 100 feet of a train station. And where I live us within 3 blocks of a train station. It so turns out it takes me two transfers and is 2.5 hours door to door. And it's expensive. Too bad. :-(

    By car it's 1.5 hours. At some point I will move closer, once the dust settles. My office may change again, within 2 months. Yes, more change. But my little car (a Misubishi Mirage) consumes only 50 miles per gallon, almost consistently throughout my daily commute! This, even with how much I paid for my car comes out cheaper than the three trains I'd need to take each way.

    Note: Cars consume the vast majority of their fuel to transport themselves, and not the occupants inside them. This is a strong reason I got my Mitsubishi Mirage. This is not an ad. xD

    Sorry for the rant. =P


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