That Which Goes Unseen

categories: Advocacy, daily living, Health, safety, social justice

Published May 29, 2009 @ 09:59AM PT

What is seen of a person may only be a small fragment of their lives, and yet others are often eager to judge the whole of a life based on that small fragment. An autistic person (or any person) who may appear one way in one context, may not really be that way in another context. Being skilled with, for example, marketing, does not mean one is equally skilled at something else like math or housekeeping. This is particularly true for those of us who have extremely uneven or unconventional skills. And mistaking the piece of the picture for the whole of the picture can, for some of us, lead to catastrophic results.

You Have It So Good is a seminal essay on the issue of being judged "so high functioning" based on assumptions drawn from a small number of publicly seen items (e.g., driving) while at the same time having survival-level concerns (eating) go so unaddressed that one's life ends up in danger (starvation).

From Shapiro's No Pity in a section on T.J. Monroe,

The public Monroe is the confident and effective activist who gets invited to the White House and is a commanding presence running the People First convention.

Monroe's private life is more troubled. There are bills past due, an unkept apartment, a gnawing loneliness over scarce friends and lost family. Megan wrote of social workers from Connecticut's Department of Mental Retardation visiting Monroe's Hartford home to "dig him out" of trash and piles of mail scattered around his three-room apartment.

This is not about pity. It is about a critical misunderstanding of the needs and abilities of developmentally disabled individuals who achieve socially or culturally recognized competency in some publicly visible way.

This is also not about hurt feelings. It is about the critical issue of how a faulty assumption of ability can lead a person to be denied services or supports they need to survive.

As stated in You Have It So Good, giving up everything in order to get necessary support is not an acceptable option. No one should be forced to sacrifice their life, their health, and everything they have achieved or could achieve in order to get relatively simple survival level support.

Take care next time you hear someone say, "that person can't have real problems; they are too good at ______ for a person with real problems."

There may be a lot that goes unseen.

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Comments (9)

Thank you for posting this.

I am good at some things but unfortunately "remembering to eat enough food, and drink enough water" isn't on the list of stuff I am good at... so I am very aware of that just because someone is good at one thing doesn't mean they'll be good at something else. Even if the thing they aren't good at, seems like it should be easy compared to what they are good at.

Posted by Fleecy B. on 05/29/2009 @ 11:50AM PT
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Dora: this post definitely hits home for me today, as I spent the morning working on something that would almost assuredly earn me multiple stereotype violation tickets -- but which, if I actually succeed at it, would in no way negate my verbal communication difficulties or daily living/executive functioning issues and so forth.

One thing that really irks me about this sort of thing is how often we on the spectrum almost feel pressured NOT to succeed in particular ways, (as also noted by the author of "You Have it So Good"). Honestly there are some things I am very, very good at -- probably better than average, and that can in some situations help me do things very well indeed. However, I have definitely noticed that when I do something very well, people tend to presume that this is indicative of some global ability level, which can make it even harder to explain why I might need help in some other area (which in my brain isn't even connected).

Really, I think one of the biggest things that needs to happen in order to actually help autistics is for more people to actually come to terms with the fact that apparent "inconsistency" does not *contradict* autism, but actually (especially if you look at early accounts) *characterizes* autistic people, who were first noticed in the first place *because* they seemed to have atypical patterns of difficulty *and strength*!

Posted by Anne Corwin on 05/29/2009 @ 05:24PM PT
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@Dora. Great topic. I Like the picture with this blog too.

@Anne. "assuredly earn me multiple stereotype violation tickets..."inconsistency" does not *contradict* autism, but actually (especially if you look at early accounts) *characterizes* autistic peoplel"

Great words. Meaningful blog.

Posted by L I on 05/29/2009 @ 06:15PM PT
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Dora - Great Post - I just finished talking at a conference with seven other people on the spectrum and a 16 member ASD theatre company and one of the major questions posed by a section of the audience was "where are the real Autistic people?" meaning I guess the one's that don't present at conferences??!!**?? What maddened me was that I 'felt' I had to justify my position - and to somehow explain the position of each individual on the spectrum. People get mad because they don't see "thier child" or the child they work with reflected on stage. They don't see their child because they are looking at a group of adults, who have over time, and with a great deal of persistence from their parents, service providers and of course themselves, developed skills. Communication skills, self help skills, self managements skills etc...... Do we need to wear signs like:I didn't talk until I was 12I only talk in the 3rd personI only communicate using stored phrases from tv commercialsI take 4 different medications to function everydayMy house is full of visuals to help me stay on track

Posted by Katharine Annear on 05/30/2009 @ 02:04AM PT
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@Katherine: you said, "They don't see their child because they are looking at a group of adults"

I don't really have a comment back I just wanted to pull what you said out and quote it because it's so well put.

Posted by Dora Raymaker on 05/30/2009 @ 09:43AM PT
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I am not sure what to say.

Do you think the audience is reflecting on you their past feelings of autistic being excluded? Perhaps to them these people look normal. Is there a criteria for being in this theatre company that would satisfy them? Hope this helps.

Posted by L I on 05/30/2009 @ 10:37AM PT
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This is an excellent post. In many circumstances, I do not appear stereotypically Autistic. This combined with the fact that I was not diagnosed until early adulthood leaves some people to think I must be so high functioning as to be practically NT. No one can see what little things I struggle with throughout the day. On another note, someone who appears stereotypcially Autistic may be judged to be low-functioning, and people assume that he or she can't do things A, B or C, when in reality, he or she can do them better than me! This is why I hate when people judge and label an Autistic person based on meeting them and deciding how "normal" they seem. You really don't know a person's strengths and weaknesses unless you know them really well.

Posted by Katie miller on 05/30/2009 @ 09:15AM PT
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@Kate. "You really don't know a person's strengths and weaknesses unless you know them really well".

I think it is true of everyone that no one knows anyone well until they have known that person .

I like Donna Williams words to this.
Donna Williams' Blog
http://blog.donnawilliams.net/2008/09/02/an-interview-with-somebody-somewhere/

"It's more like tides and undercurrents, an extreme of similar forces in all people, a hypernormality perhaps, and as such a magnifying glass for what we all experience. Am I afraid to be a complex presentation of autism? No, because autism is ALWAYS a FRUIT SALAD and those fruit salads differ".

Posted by L I on 05/30/2009 @ 10:30AM PT
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I have a lot to say on this topic, but most of it is already summed up by my 2-year-old post What People Think They Know (which I've just added a link to this post from).

The rest is... what really gets me is the stimming thing. Sometimes I stim, sometimes I don't, and I don't always stim the same way (all of which is true of pretty much every autistic person I've ever met who stims). (Not to mention that my physical conditions often interfere with stimming.) But I've gotten some of the strangest reactions ever, which basically are one of the following:

"But I thought you stimmed all the time, what are you doing not stimming?"

"But I thought you moved your hands by your eyes, why are you rocking?"

"But I thought you rocked, why are you moving your hands by your eyes?"

And then there's always, "But I thought you were low-functioning, why are you able to do this?" And "But you're high-functioning, you really are able to do that but you're just lazy." Not to mention "But you portray yourself as low/high functioning, why are you (not fitting the stereotype I assumed you were portraying yourself as fitting)?" (Where "portray" is not even close to an accurate word for what was going on.)

All of which is why I want to take the entire concept of functioning labels and beat it to death with a baseball bat.

Posted by Amanda Baggs on 05/30/2009 @ 02:40PM PT
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Author

Dora is committed to improving quality of life for individuals on the autistic spectrum--including herself! She is Co-director of the Academic Autistic Spectrum Partnership in Research and Education and a member of the Autistic Self Advocacy Network's Board of Directors.