Comments on Existence is Wonderful: Conceptualizing Autism

Excellent read, my daughter was recently diagnosed...

2008-10-24T05:40:00.000-07:00

Excellent read, my daughter was recently diagnosed ASD, and in learning about it I realized she's not what I had imagined an autistic to be like at all. She is articulate (at times), self aware, and yet seemingly so unusual (to me a NT) in her behaviors and actions. We adore her, yet she appears unable to return our affections as we would expect her to. Yet just the other day (she's 8) she said "Daddy, there's something wrong with my brain, I'm not like other kids." How can you respond to a bombshell like that? I answered her of course in a reassuring way, but I do believe she's deeply hurting inside, she knows she doesn't have friends, she knows other girls look at her strangely, yet she cannot fathom what to do about it. All we can do at this point is love her and get her the best help we can (she has numerous learning disabilities). Anyway thanks for your insightful article.

I just wanted to share an article I wrote entitled...

2008-10-15T16:39:00.000-07:00

I just wanted to share an article I wrote entitled: Theory: Could "Zingers" Contribute to Autism? It is located on my website at www.empathylessons.com/autism.html
I look forward to your feedback!

great post. very illuminating.

"How these t...

2008-10-08T20:12:00.000-07:00

great post. very illuminating.

"How these tendencies actually manifest vary from person to person, and throughout any individual person's life, and generally autistic people do have difficulties functioning in a culture that was not designed for people like us."

my question is this: what would a culture look like that WAS designed for "people like us"?

EC: You are welcome. I was hoping this post...

2008-09-13T12:20:00.003-07:00

EC: You are welcome. I was hoping this post would be something concrete enough to be useful for people looking for ways to explain the complexities of autism when it is so difficult to do so. I think that these complexities get lost/glossed over/ignored a lot because the usually-invoked "autism is a set of pathological behaviors" model is so clear-cut and easy to put into words, however scientifically inaccurate it may be.

abfh: Thanks. I am actually pretty happy wi...

2008-09-13T12:20:00.002-07:00

abfh: Thanks. I am actually pretty happy with how the chart came out. I have had something like that brewing in my head for quite some time, and it just sort of came out all at once. It's always nice when that happens!

Ed: Believe it or not, I originally intende...

2008-09-13T12:20:00.001-07:00

Ed: Believe it or not, I originally intended this post to be "short and to the point". But obviously things didn't turn out that way. :P

You said: I think the further we can go to even challenge the system that would create the kind of restricted thinking that leads to the inappropriate and negative views of autistic people.... such as the medical and psychological establishments do....and still get people to listen....and not have them avoid providing the needed resources that have been created (however poorly), the closer we are to liberation and empowerment.

I agree fully with this. One of the biggest problems I see is the dual fear surrounding identifying a more diverse range of people as autistic; that is, that (a) it might "dilute" the term to the point where people who do have extreme difficulties might not get help, and/or (b) it might somehow "insult" people who have perhaps formerly just thought of themselves as "nerdy" by suggesting that they are somehow like disabled people.

IMO, both of those fears are based on really untenable assumptions, and what really needs to happen is a questioning the value of pathologization. The real problem is not in acknowledging that some people's brains work differently, and that some configurations are more likely to lead to a person's having difficulties than others in today's society -- but in insisting that certain differences must be considered horrible by necessity.

This kind of flawed reasoning leads to weird dichotomies like: "All autistic people suffer by definition. Therefore, if you claim to be autistic and not suffering, you are either lying or deluding yourself into either believing you're autistic when you're not, or believing that you aren't suffering when you are. Either way, there is no reason anyone should listen to you."

And there's no concise way I've found to respond to stuff like that. So I am thankful that some people are able to slog through my encyclopedia-length posts.

Marla: Thanks. :) This whole subject area (...

2008-09-13T12:20:00.000-07:00

Marla: Thanks. :) This whole subject area (labels, definitions, and their simultaneous necessity and failure to account for the full complexity of human beings) is tremendously tricky to navigate.

Hello anne. Thank you for this post. I'll be sendi...

2008-09-08T22:34:00.000-07:00

Hello anne. Thank you for this post. I'll be sending it on friends and family and printing a copy for my therapist. My AS diagnosis is relatively recent, so I've been doing lots of conceptualizing about what Autism means for me and others.

Like Marla, I'm going to do a re-read too. Thank you so much.

Your chart clearly sums up the complexity of autis...

2008-09-08T07:47:00.000-07:00

Your chart clearly sums up the complexity of autism, showing how the behavioral differences that have defined the diagnostic category are only a small part of what autism really is.

And you explain very well why that is so problematical:

this category is at once the one people tend to put the most stock in (in terms of identifying autistics, in terms of determining what educational supports we might need, etc.) and the one most subject to cultural biases, personal biases, misinformation, and the ever-changing social lens through which different kinds of people are generally viewed.

Yes, whenever one group of people defines another group in terms of behavior without understanding its context, that's always bad news. Thanks for another excellent post!

There you go with another encyclopedia size post.<...

2008-09-07T15:33:00.000-07:00

There you go with another encyclopedia size post.

You do well at stretching the medical model of autism. You stretch the boundaries of what we can describe based on the acquired knowledge we have about autism that has needed to described in overly strict ways.

I think thats necessary. I think the further we can go to even challenge the system that would create the kind of restricted thinking that leads to the inappropriate and negative views of autistic people.... such as the medical and psychological establishments do....and still get people to listen....and not have them avoid providing the needed resources that have been created (however poorly), the closer we are to liberation and empowerment.

I think you broadened that view for me.Thanks.

"Because of this, efforts must continue not only t...

2008-09-06T18:01:00.000-07:00

"Because of this, efforts must continue not only to understand the principles by which various minds operate, but to make sure the common conceptualization of "valid person" does not limit itself only to majority flavors."

Well said! You and I must be thinking along similar lines lately. Labels are a reality. People will use them. Which is why it is so important for us to be sharing our stories, knowledge, etc.

Your writing is so detailed and intense. It should be a published paper. I am going to reread it again.

Thank you for your valuable comments on my recent posts. I always appreciate them and enjoy reading them.

Ettina: Firstly, I do not really believe in...

2008-09-05T16:14:00.000-07:00

Ettina: Firstly, I do not really believe in the usefulness of "functioning labels" in the manner they are commonly used -- which is to say not as means to express how a person appears to them, but to express what they believe to be an intrinsic feature of the person's makeup.

That out of the way (and I am not saying I think you are using those categorizations in the latter way), I do imagine there are variations, some of which may comprise biological sub-groups, within the current (common) picture of the autistic demographic. However, I would actually guess that there is more in common biologically/cognitively between a lot of people who might get sorted into different superficial categories based only on looking at 1 or 2 things (speech, etc.).

There are three main categories of kids now called...

2008-09-05T15:51:00.000-07:00

There are three main categories of kids now called autistic who would not previously have been diagnosed that way:
* the lowest functioning kids, who don't show the obvious talents even Virginia S (Kanner's lowest functioning case) had. They were just called retarded.
* the higher functioning/more mildly autistic kids (note: those two are not exactly the same thing) who would have been called atypical children, schizoid children, or just neurotic or eccentric.
* The kids with a period of normal or seemingly normal development who later regressed, who would have been called psychotic children.