Approaching People about Participating in Study

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Autism could become a "social construct" under the wrong conditions.

A fair point.

I did not mean to convey any sense of outrage--just that the language was a sticking point for me.

After thinking it over, I think it is because the phrase "socially constructed" seems to be loosely associated with certain kinds of literary theory (e.g., semiotics) in my mind. This may be unfair.

Nevertheless, in some way, "socially constructed" implies something without foundation in reality, like racism. I don't think that autism is like this and it's different in important ways.

1) Muany forms of autism are not immediately evident to external observers: you don't expect to see it in a photograph, for example. So people in a given social context may be (are almost certain to be) unaware of some significant percentage of the autistic people around them.

2) To the extent that autism is observable in behavior, the cause is not always readily evident to non-technical observers. A conversation at work might be, "Bob is a bit weird. He does some things that seem off" and there might be general agreement about that. But people might not know if the atypical behavior is caused by autism, tourettes, bipolar, schizophrenia, or something they have never heard of. They probably won't be confident that another person is autistic without self-disclosure by that person (or plausible gossip about that person.) Gender and skin color are typically easily observable, but this is not the case with autism, so there is no similar mechanism of endless reading in of various meanings to the label.

But those are sort of rarefied considerations--certainly not anything like outrage!

A lot of interesting conversation happened while I was getting a pork chop biscuit! My day is looking up!

Adamantium - I spent a long time crafting that specific sentence, and it's worded that way for a reason. You have to have that kind of sentence in a project to tell the audience what kind of sociology it is. My sociological areas are critical sociology and social constructionism, which form a new field called critical autism studies. These are subgenres of sociology, you could say. And that's just within sociology. If I had said that I was going to talk about autism from a biological or psychological point of view, I would need more degrees. If I am going to publish work, I cannot do that. So professionally, all I can talk about is the social view of autism.

I DO believe there is a biological difference between autistic and non-autistic people and it's likely genetic with a different neurology that you can see after the person is born. It's probably easier to see as people get older and our brains set in. I only think this because I have casual, not professional, interests in genetics and neurology. But when it comes down to it, I don't think that matters. Women and men have different brains and different chromosomes, but that doesn't mean one gender is sick or should be changed. Years ago we did believe that women were sick because we compared them to men.

ASPickle - What you're saying is essentially what I'm doing. I do not have specific language "othering" autistics in my thesis, but I do use that terminology a lot, and that's essentially what's going on. Another term that's picking up momentum is "stigma." Autistics are being "stigmatized."

Kraftiekortie- My little brother is autistic. He was never diagnosed, but would fit the description of a person with HFA. There are a lot of neurological things going on in both sides of my family. It's my understanding that the BAP comes up frequently with siblings of autistic people. I actually have to put in my literature that I have limitations of having autistic friends, family and mentors and that I am disabled so I may not be impartial to the population I am studying. I don't go into it in academic work, but I don't think that people who can't speak or otherwise communicate necessarily have a bad quality of life because I'm like that sometimes and I would not like to be put out of my "misery."

I handed a flier to a woman today to post on the notice board in her building. She works in the career placement office in a college. She asked, "Is this...like to find out if it's vaccines causing it?"



I took about 10 minutes and explained what I'm doing and the general concept of autistic adults. She confessed that she hadn't heard of an autistic adult.



Seriously. I couldn't make that up.

Many people's conception of autism is that of the pre-1980's version of Kanner/classical autism.

RainMan is considered quite high-functioning.

Even psychologists (per members of this Site) believe that if anybody bothers to initiate social contact at all, that they are automatically NOT autistic.

This widespread, profound ignorance is part of what makes me question the idea of a socially constructed concept of autistics as a minority. How can people socially construct an identity of which they are almost totally unaware?

I must confess, my own ignorance of autism was very great until it was suggested that my son had aspergers. Only then did I take time to read about it, and only then did it occur to me that it might also be a description of me--this despite people telling me directly that they suspected it in me!

I had to run out after reading this and spent some time in the car thinking about the best way to answer this question.

There's an old story about some blind gentlemen who had never before encountered an elephant. They each had a portion of the elephant and make a decision on what the elephant "was" based on their limited experience. One thought an elephant was like a rope, one like columns, one like a bristly broom, and so on. At no point, and this part is important, did they ASK the elephant what it was. If they had, and the elephant had also never before encountered another elephant, what could the elephant say? Especially if the elephant could not speak the language of the blind men?

A social construction is anything that exists because humans agree that it exists. Does a tree exist? Sure, because it exists without humans saying so. But WHY is it a tree? Because we all agree it is a tree. We don't know what concepts other creatures hold about trees. So reality is not the same for everyone.

Marriage is a social construction. Language. Law. Color. Property. I can go on and on. The best place to learn about social construction is Berger and Luckmann's Social Construction of Reality.

So, how does this relate to autism? If no one ever told you that you were autistic, and you had never heard of autism or an autistic person and no one else had ever heard of autism either, would you be autistic? The answer is NO. If you are black, but no one ever told you that you are black, you had never heard of black people and no else in the world had either, would you be black? NO. Are some people in Papa New Guinea black or autistic? NO. Could they be. YES. If the people in Papa New Guinea became socialized to the rest of the world, particularly to Western concepts, they would start categorizing by skin color and behavior and these categories would come up.

Yes, this is a radical way of viewing things and some people don't like it. But this view shows that there is nothing essentially "wrong" with anyone. Depending on your environment, you may be in a category that's easy to live in, or hard. That category may shift over time and may become easier or harder to be in. It's certainly easier for me as a woman to live now than it was for my grandmother. I think it may be easier for non verbal autistics to live now because of disability rights, but perhaps harder for people with Asperger's, who may not have be noticed as "odd" two or three generations ago and may have had more aspie friendly avenues in life.

Another very important part of Berger and Luckmann's work is that whenever a population is pushed out of the mainstream for not conforming (such as autistics), they tend to form their own population, which then formed its own social rules and norms. This gives the people pushed out of the mainstream an alternate social reality, where they are no longer outcasts- the mainstream is instead the outcasts, because mainstream doesn't conform to the social rules of the new society. We can see that easily in the neurodiversity movement. Pathologizing autism is a social taboo and most people see autism "treatments" as eugenics and torture. I myself do not agree with pathologizing or treating autism. I only agree with treating the symptoms that come up due to autistics being exposed to neurotypical expectations, which can cause depression and anxiety. So this process of creating an alternate social reality is, to me, normal and healthy. I mean, we can see this also in the Black is Beautiful and Black Power movements (now I guess we'd say Black Lives Matter), Gay Rights/LGBTQ movements, and I could go on and on, but this post is already way too long.

I suppose this is true, based upon the fact that today Asperger’s (what I was diagnosed with) is observationally diagnosed. Yet I suppose this would stop being true once a bio-marker is established.

By the way, from my perspective, the observationally diagnosed aspects of Asperger’s are not the most debilitating (for me). I could care less about having impairments in social interaction. From my perspective, social interaction is over-rated. It’s the near-constant worry (caused by my over-active mind) and the occasional dysphoria that drives me crazy.


What exactly is this alternate social reality?

As a student hearing sociological theories, most of them are disproven by the mere existence of autistic people. A quick example that comes to mind is this idea that in order to have a self and/or a mind, one has to FIRST have language that is meaningful to other human beings. G.H. Mead's social theory of self is a good example of this, but not the only one. Symbolic interactionism, on the other hand makes sense to me. People interact with each other, it may or may not work out, and most of us adjust based on the feedback from the other person/animal/object's reaction. When you look at it minutely, it's NEVER as smooth as you'd think, even with the slickest of neurotypicals. That's why it's fascinating to me. I also like it because it unlocks the secrets of how to act appropriately with anyone, even if they're from a completely different culture or "wired" completely differently from us.

Not even a biological cause of autism will make autism as a social group disappear. Women have two X chromosomes and men have an X and a Y. But we also seem to have different looking brains. And sometimes people are transgender, despite their chromosomes. Most experts would not say that having a XX is the definitive "cause" of being female or an XY the cause of being male. It would be more accurate to say (even now) that autistics are a biological group AND a social group. Autistic people have their own medical concerns, such as sensitivities and needing different administrative needs (longer visits, more privacy during visits), so I would also say they are a biological group, even though I can't say that professionally since I don't have a degree in biology.



A simple way to say this is an "alternate culture." You kind of have to use the terms in order to look it up. I dislike buzz words myself, but you have to deal with them in order to research things. It's like the word "discourse." Why not just say "talking"? But go try to google "talking about autism" and see what it gets you. So when people either individually or in an organized group decide that a common mindset is wrong ("autistics are mentally ill" "non-whites are lesser" "women are irrational" "gays are perverts") an alternate camp invariably forms. Whether people all happen to have the same opinion and trickle in on their own (I would say this happened with the majority of the LBGTQ movement) or it was an organized, visible effort like the suffragettes, a non-tangible group forms that challenges the thoughts of the majority. So all of a sudden one can choose whether to believe that autism is some kind of illness, or to go with the new thought, which is understanding and acceptance. The alternate camp gets larger and slowly becomes the dominant camp. It's now weird for people to walk about saying that gay people are perverts. I haven't heard anyone under 60 say anything unkind about a non-straight person since I was a child, and I'm nearly 40. If you want to think of this visually, the small circle of the alternate camp gets bigger and bigger and takes over the big one, which shrinks. I'm giving all positive examples, but it can happen with anything, and of course the process can reverse and a third thought can take over.