Autism as your identity?

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I went my life without knowing I had autism (autistic disorder diagnosis last year at 25); I felt like nothing was wrong with me. In fact, I thought I was pretty good at socializing, but I just didn't want to do it (introverted).

Nothing has really changed knowing such other than now people don't assume the worst of me when I don't talk to them; they feel sorry for me now. It's an improvement.

What strikes me as strange when I read topics like this one is the huge number of people who tend to forget that those without autism are also vastly different. Each single one of them is also special, and to say that all non-autistic people are a herd of gray boring creatures who all look and think exactly alike is, at best, erroneous.

And, for that record, there are plenty eccentrics and non-conformists who are most certainly not autistic.

I know many might say I am not in a position to judge about this, as I may or may not be on the spectrum, but I think there is a distinction between one's personality and autism. Apparently, many traits typical to autistic people are observable in those who are not autistic, too, and the only conclusion I can draw from this is that these traits are not exclusive to autism, and should be attributed to one's personality, rather than to one's being autistic. So, if one enjoys these traits, it is not one's autism that one likes, but just being oneself.

Just a few examples:

Those with sensitive personalities can depend to a large extent on a familiar environment and familiar people, and can be extremely shy and fearful of strangers. They often display "wood and glass" sensitivity and are hyper-sensitive in some respects, but unexpectedly unemotional in others; they also commonly lack a sense of humor. As teenagers, they are likely to avoid their peers because they perceive their behavior as noisy, rude, unacceptable and generally difficult to adapt to (since they are too sensitive and tend to take everything seriously, any slight remark can leave them extremely upset). Instead, they prefer to stay at home, engaging in creative hobbies or looking after animals. They usually form very strong attachments to a select few people, commonly close relatives, but, in extreme cases, may have difficulty forming relationships outside the family, due to being literally homebound.

Those with obsessive-compulsive (conscientious) personalities are punctual and orderly to a fault. They are dependent on their daily routines and will be upset when those are disrupted; typically, they are quite rigid (down to wearing the same clothes, eating the same food, following the same route to work every day etc.) and have difficulty adjusting to change. They also tend to be perfectionists who feel a compulsion to do any task as well as they can, and do not let go until they have completed it; once having started to do something, they can sometimes go on for hours on end without stopping. If the personality pattern has turned into a personality disorder, the person is likely to become a workaholic who is immersed in their job to the exclusion of everything else - and, naturally, their family, social life, leisure, and, ultimately, their health all suffer.

Those with personalities belonging to the sch-continuum are commonly though of as eccentrics who "think outside the box". They may have beliefs which are considered strange by others; they may dress and behave in unusual ways, make unusual lifestyle choices etc. People with these personality types are also solitary and either have difficulty establishing intimate connections, or are uninterested in doing so. As a result, they may end up living completely alone, without any close friends or a family.

Sounds "autistic" enough? Yet having one of these personality types definitely does not mean one necessarily has to be autistic.

This is partly what worries me when it comes to "curing" autism. There is a fair number of parents (the type who don't care to really see their children for who they are, much less accept them) who will try and squash their child's personality under the guise of fighting the autism. In an autistic child, many personality traits are perceived as being part and parcel of the autism, even though they are also common to many children who are not autistic, and normally never elicit such a strong response. For instance, the behavior of a non-autistic teen with a sensitive personality, which has reached personality disorder proportions once he hit puberty, would perhaps cause some concern, but I doubt that most parents would be half as upset about his rigidity, shyness and hyper-sensitivity than they would have been if he were also autistic. Neither would they try to see these traits as something altogether negative, and get rid of them. I also don't see many parents who try to emphatically turn their generally introverted child into an extrovert; yet, when the child is autistic, this seems to be a common occurence and introversion all of a sudden becomes a sign of something being wrong. The fact that introversion is by no means exclusive to people with autism, and that quite a number of non-autistic introverts are actually more withdrawn and unwilling to socialize than some autistic people, is somehow forgotten.

When I read Kit Weintraub's response to Michelle Dawson, I felt sick. What she seems to be doing has little to do with eliminating symptoms of autism, and a lot to do with trying to completely crush her son's personality and mold him in the image of her "ideal child". Liking Mickey Mouse rather than Frodo Baggins has nothing to do with autism (and, quite frankly, neither does "quirkiness" per se); I am sure there are plenty children who are not autistic, and who still like Mickey Mouse. It is a sign of one's personhood, one's personal preferences, which are naturally different for every child. If one claims that liking Mickey Mouse and wanting to dress up as him, etc. etc. etc., is somehow "not normal", it means one is concocting a standard of normality which does not exist - and, far from being in any sense objective, this standard is certain to coincide with one's own understanding of what one's child ought to be like.

That said, the autism itself, of course, also has something coming with it which is peculiar to it alone. It means one has a special perception of the world (due to heightened and/or jumbled senses, as well as the multiple agnosias that tend to come with it - inability to read body language and expressions, to find one's way to a place, to recognize faces, sometimes even to distinguish separate objects or locate one's own body in space) and a special way of communicating with is different from the one used by people who are not autistic. If someone has come to accept and enjoy any of these, and wouldn't want them to be cured, it would also be understandable.

But it is weird how people will go way beyond these things and attribute a large chunk of their personality to autism, even though it would have been there anyway, autism or no autism.

That was interesting.

If I'd have explain it in plain English, I'd do it like this:

I'm not sure on the personality part.

Special interests are cool, but autism didn't hand you the topic which you're interested in. It just made you dive head-deep into whatever topic you choose out of the possibilities that your parents, your school, your whatever presented to you. The way you now handle this keen interest is autism. No doubt, if you got interest in plants as a child and 30 years later successfully manage a huge

But if you'd never have gotten to know plants in your life - some NT might have taken your position. He'd just have perused his topic of interest differently - maybe the same as you would have, maybe not.

Autism is more layered than IQ or your skin colour, the religion you grew up, but because it's more factored, it doesn't automatically have a greater impact, a special rank or anything, just as much as IQ and skin colour don't determine anything themselves, but only has effect on you due to a complicated process of interaction with your surroundings and all other factors.

I slowly begin to autism like this. I don't feel particularly comfortable with people who tested high in IQ test, actually, I don't feel comfortable with them at all, because i feel like having nothing in common with them, but on some paper, there ought to be a fundamental similarity that is as important as the ones who forced me to associate with these gifted individuals made it to be and let it be.

But identity is indeed another concept.

I know we say: hey, this is my drivers license, everyone has one, it's how to identify any of us.

Many have a license, but an ID is unique.

Autism isn't. The experiences that you get when you throw autism in the mix, that is unique. Almost. Autism is what you share, although it's not possible to say: oh, up to that point, it's your autism, the rest is your personality. Autism is too many layered and nobody knows... well, what would have happened to the NT child meeting Mickey Mouse indeed, haha? How is obsessing over Mickey Mouse autism, really, I was the only child not obsessing over TV series and heroes/heroines in elementary school and I was one of the two non-NT children there... oh the irony..

Point is, autism is different to all of us - maybe because not only differ the symptoms, the severity of symptoms, but also because sensory overloads, meltdowns, rigid routines make an impression on our lives and on the lives of those who know us. The cool thing about it, isn't that autism makes an impression on us - because that's what autism always does - the cool unique thing is how we get along in life with autism and without it. Autism makes it harder, makes it easier, but autism is nothing without the person who can be autistic in the first place and for whom autism is a major part in their lives.

My identity is something I have no words for and no clear idea of. Obviously, it is there, I'm unique, but I'm quite sure my identity isn't 'autism'.

I rather stick to being autistic. I like being in my current state and wouldn't want to loose/add anything.

But... A cure wouldn't take a part of me away, as the effect autism had on me will still linger as part of myself, my personality. It doesn't leave me. Also, in all regards, it's not a 'part' that leaves, as that's a simplified way to put it. If you lose your arm, you don't usually grave the loss of 'that part' but the loss of function of that arm that you have experienced so far.

If you take autism away in a baby, or in an adult, from that point on, they'll perceive the world without the effect their autism has on them. How they will perceive the world - no idea. Maybe they'll obsess over a special interest, maybe they'll be somewhat spontaneous but still rigid, but maybe, they'll never get anxious over social issues, but over... financial issues? The outcome may be just as bad and that's what seriously tracks me off a cure. How to know what is the better outcome when only one is possible to try, who to decide what is better? People get disowned because their parents think they love the wrong person... I anticipate lives will be the same, but maybe self-perception changes. Can be better in the autistic person, can be worse there too, depends on the person. Whom you can never ask, because nobody can choose, no matter how old they are. I'm for 'let's leave it as it is and figure out something more sensible'. Like how to make life better by adjusting factors in life. Boring old damage control, no damage prevention.

Anyway, the importance of autism in an autistic individual's life is left open for discussion. (I see no way to solve it, because comparing two people isn't going to work, no matter whether NTs or autistic try this to use it for their means.) Is autism more important to control than blue eyes, kidney issues... remember autism is a spectrum.

Autism isn't like a big blue clearly defined box that you either fit in or not, but it's like blue powder all over you and you never quite now what it was, the blue powder or something else, that makes you sneeze and yucky. Sometimes, it is of great importance whether you breathed in blue power and sneezed, but sometimes it's of no importance at all.

Importance depends on so many things.

So sometimes it's important to figure out whether autism has a hand in how you behave or not and sometimes, it's of no importance really.

I'm still not entirely sure, but that's my thoughts on this currently, carefully put by a horrible explainer.

My identity is defined by my role within the autistic community. Until I joined the autistic community, I had no identity at all.
Autism is not a disease, therefore it can't be cured. Had you asked "Why does eliminating autism so upsetting? What would it mean to you?" I would have answered "Eliminating my autism would murder my soul. I will not allow anybody to murder my soul".
Any 'cure' (=elimination) would make me blind to the world too.
I think the same as you do.
Non-homosexual people are also vastly different from each other, but it never prevented homosexuals from forming their own organizations, conferences and culture. Homosexuality is an important aspect of their personalities and they have their right to celebrate it.
Yes, non-autistic people are vastly different from each other, but it will not prevent us from forming our own organizations, conferences and culture. Autism is an important aspect of our personalities and we have our right to celebrate it.
Autism is more central to autistics' personalities than Afro-Americanism is to Afro-Americans' personalities or from homosexuality is to homosexuals' personalities. Just as there will always be Afro-Americans who view Afro-Americanism as their main identity and homosexuals who view homosexuality as their main identity, there will always be autistics who view autism as their main identity.

Well, I obviously can't make a definitive statement on what would or would not happen, but the best way to judge the future is by the past. I would probably have continued to be baffled as to why I was different from everyone around me.

AMEN! I used to think that God was going to reveal (His/Her) plan when I passed from this world, but when I got my Asperger's Syndrome figured out, it was like I had had the chat!

Merle

Did you really have no likes or dislikes? No preferences - one thing over another? Did you like one color over another? One sound or song over another?
Didn't you think to yourself 'Hey, I like doing this Autism Community stuff' before you did it?
that is person-ality, KenG.

Merle

Last edited by sinsboldly on 21 Mar 2008, 10:42 am, edited 1 time in total.

To me, my identity is my place within society.
Before joining the autistic community, I knew the following:
1) I liked what nobody else liked.
2) I disliked what everybody else liked.

The identity I did have was the same identity Donna Williams chose as the title of her debut autobiography "Nobody Nowhere".

I was always searching for my own place in society, but I only found it once I joined the autistic community.
Within the autistic community, I am slowly discovering more and more people with whom I have a common language. It is a true revelation for me.

I'm just me, with an ASD.

Your idea makes a lot of sense to me. Although, of course, I can't be sure that it's only the NTs I marginalize; I've never met anyone else with Asperger's or autism in real life. Whenever someone stops talking to me or stops treating me decently, I cut and run... and I'm always ready to do that, because I don't find playing along with what I don't understand to be very fun anyway.
In response to your other question...

Well... for me it's because I find something compelling about my personality that I just don't find in most people. I like the way I think, I like the way I act: it all makes so much more sense to me. I don't think it's a slur on ordinary people that I prefer being the way I am; presented with the opportunity to be me they'd probably feel much the same. So is it so much to ask that I should have that option? Sure, I'm an adult, so even if they came out with a cure I would likely have that option. (I'm not completely sure, so I'll err on the side of optimism.) But what about all the people who are growing up the way I did, not completely sure of themselves but sure that they'd like to keep being themselves? I doubt most parents or doctors would consider their point of view valid. And those of us left behind would become more and more alone. Not to mention it's just an ugly thought: something you love and value, your own manner of thinking, threatened with erasure.

And maybe the way a person thinks isn't necessarily what defines them, but it's a pretty big part of me. Thinking is what I do.

Could you clarify? I'm not sure what you're talking about. My pint was that, by striving for a world in which autism does not exist, groups like Autism Speaks are saying that they don't want me around. I am autistic, and as this thread has discussed, I (and many others) consider autism to be an integral part of my identity. Autism is not the be-all and end-all of my existence, but it is a part of who I am and I am neither willing nor able to change that. I try to make adjustments to fit into society a little better, but I would never wish to cast aside a part of what makes me me.

I see it as an interesting component, to my personality, along with the many other pieces.

My theory is that because Aspies feel marginalized by the NT world, they then marginalize the NT world.

Thanks![/quote]

You could probably understand this if you drew a venn diagram to show what happens and where the overlaps are. Hopefully you can visualize a large circle representing nt and several smaller intersecting circles representing not nt. It is a fallacy to think that the only atypical brain type is autistic. Those who fall within intersections cross groups. Those who don't are marginalized. Within the autism circle there are subcircles eg there is a conceptual divide between high and low functioning. Some social groups for high functioning people will not accept anyone who is considered to be low functioning. Low functioning people are often marginalized further by their carers. I am not sure that people who are marginalized can then marginalize the group who has marginalized them. Seeing and observing a barrier that has been firmly put in place by someone else is not the same as being unable to batter down that barrier or resenting that barrier. Some of us can knock holes in it. Some of us creep through other people's holes and some cannot find a hole to fit. I think that one of the tools of majority groups use to reinforce barriers is to blame the victim. that sucks.


As far as the way I see autism, it is as intrinsic to who I am as gender. I am a short, dark, sedentary, female, introverted autistic. if I was a tall, blonde, athletic male, extrovert nt would I be the same person as I am now? laughable question. so yes, autism is part of what defines me.

That is what I want to ask, is AS what makes me ME wouldn't I be just as dynamic a humanbeing without being born with AS? Wouldn't I be just as intelligent, have just as perfect pitch and really good singing voice? wouldn't I still be a visual person?

There are people that are smart that are not AS, and people that can sing well. Would I lose all these talents I love that make me, me?

I would just aquire mirror neurons, and the ability to read faces, or even recognize faces, I would intuitively know what was appropriate in a conversation and be able to bond with people that love me.

What's wrong with that?

If you were born without legs, wouldn't you be able to walk just as well? If you were born without honesty, would you find lying just as abhorrent? These two questions seem to have much simpler answers that yours, but I'd emphasize the word "seem", there. If your genetic profile were changed to such an extent as to result in you not being autistic, would other of your traits be affected? I think the answer to that has to be a resounding "yes". Which traits, specifically? I guess we'll find out, one day.


I don't think you are your talents. Maybe I even think one is more characterized by one's shortcomings, than one's competencies.


I feel "mirror neurons" may be a synonym for "sympathetic magic". Given any cerebral activity, I'm sure you can correlate it with the activity in some neurons, in some people, in some anatomical area. Implying some direct relationship sounds... optimistic? (Maybe good for getting your grant renewed, though.)


There's nothing "wrong" with being a different person. You certainly would not be the "you" that you are though. (And my life would be poorer, for not having met you, but that's beside the point.)

Reminds me of the Twilight Zone episode where an eccentric chap is given the choice to become popular and successful by a guardian angel.
He plays (American) football with the kids in his neighborhood, drives an antique car, works at a desk job, and builds model ships. His angel appears, and changes all that. He is changed into a businessman, drives a sportscar, and has all the trappings of success.
The result?
Instead of loving his new life, he misses being a nerd. In the end the angel returns him to the way he was.

We can only speculate what we (that is, our personality) would be like without the influence of AS. It would be jolly fun to see, if only for a day. But we can't, and I don't imagine we'll ever be able to. As for meself, I worked for a "successful" outgoing salesman, who was popular and well liked. I'd no more trade my life for his than I'd trade to be a parrot.