Label Me, Illuminate Me

Post Reply New Topic

Hi! I just wrote a new post on my blog discussing labels and why my diagnosis has made me firmly in favor of them.

I'm interested in what other autists think about labels. I know this debate rages on in the larger world, and I assume that the opinions here are just as diverse.

http://www.lunalindsey.com/2014/01/labe ... te-me.html

I don't mention this in the post, but this topic has been of particular concern lately because I know of two people who resist getting diagnosed, and in fact strongly resist even the suggestion that they might be autistic even though they show many of the signs. I wonder how many people in the world resist getting help simply because they don't want to be put into a box. What do you think?

I think that labels can be dangerous. People don't understand what the label means. It's like labeling something "Gift". Gift means poison in German, but a present in English. So which is it? People aren't really taught what it means to be autistic, they just know it's mysterious and there's no cure. That sounds terrible! But people don't know better. That applies to pretty much anything really.

If people understood them it could be helpful in helping fuel compassion between people but that isn't the case right now unfortunately. I try to not let people know because the label is not me and the label is based a lot on negative stereotypes that others don't understand are not valid, and I feel in my case in particular (but many would agree with me).

I'm kind of a bootstrapping kind of person in that I like to self initiate. It's not easy but if the motivation is from within and not from someone else it helps a lot.

Before I read the blog post you linked, I didn't clearly understand this "debate" about labels – any and all labels, not just autism-related or disability-related labels. The reason I didn't get it is more or less identical to the crux of the issue: the imprecise, emotionally-charged, overly specific way people apparently tend to think about the groups designated by labels, which is foreign to me. The labels themselves aren't the problem; it is an issue of intellectual immaturity on a spectrum from the inability to grok subtle variations to the blind formation of stereotypes based on a single encounter. The anti-label (or label-hesitant) concerns are sensible, but there is something to be said for not tailoring one's identity/ideological presentation to the lowest common denominator.

Specific to ASD and the people you mentioned, if they were diagnosed as being on the spectrum, who would know besides themselves, the diagnosing professionals, and anyone they chose to tell?

I embrace the label.

Corvus, how would you answer my assertion that labels can be leveraged to help people understand the truth in spite of the stereotypes, and that assumptions are made even when there are no labels?

BTW, have you heard of the band that bears your name? Here's a song: http://open.spotify.com/track/3ZWP9FT9Spdr8yYHcwO6Sx

Starkid, are you saying you naturally have a tendency to not put people into boxes, even when they're already put in boxes? That people in your mind resist being categorized? (Reminds me of the joke: "There are two kinds of people, those who think there are two kinds of people and those who don't.")

It's interesting, because I'm asking myself if I think like that. I think my mind wants to attach loose labels to people.. to make assumptions but not to put too much stock in it. That the person is still themselves, but also fall into the category. Like set theory. They can be in many sets, and intersecting sets, and are a set all on their own. I'm working on a post about black and white thinking, and this is very related. I've heard autists express how accepting other autists tend to be of most people, even people the rest of the world has rejected, like in this post about Autism and Gender: http://bjforshaw.wordpress.com/2014/01/ ... nd-gender/ And yet NTs think we're rigid thinkers and judgers. I'm not sure what the real truth is - I suspect most of us have been misjudged, and will be writing about that. But I also suspect that maybe there are two kinds of autists -- those who are quick to rigidly judge and those who aren't. (Yes, I see the irony in that statement.) I don't have enough data to know.

I like your term, "label-hesitant". These are the kinds of things I wish I'd thought of while I was writing the post, which is why I like discussion. :)

Anyone diagnosed will only know themselves, their psych*, and anyone they choose to tell. I see the primary value of labels as being the value to one's self. Any additional value is secondary. Even if you never tell another soul, you've given yourself a huge advantage of an additional dimension of self-awareness.

am not a fan of them in the real world and have sucessfuly encouraged a national severe & profound autism support service to avoid putting such limits on us.
labels automaticaly create instant pictures in peoples minds of stereotypes, stigma, prejudice, snobbery and elitism....labels are treated like theyre something far far more important than they actualy are.
labels only truly help with official stuff such as getting support,benefits and so on,a person is just as believeable saying they have sensory/communication/social etc difficulties as they are saying they have x/y/z syndrome,and it doesnt lead to the same level of limitation.

. I wonder how many people in the world resist getting help simply because they don't want to be put into a box. What do you think?[/quote

Because they don't want to be put in a box? [like any of us would fit] I think the problem is that they are terrified, disgusted, and repulsed [as am I] by what people mean when they hear the word autistic. So many people hear the word and think WEIRD, STUPID, MASS SHOOTER OF CHILDREN, TRAGEDY, SNOT EATER, and LESS THAN, way, way, LESS THAN.

The world needs to learn who we are.[ it;s not like most of the "experts'"have much of a clue.] Who are they going to learn from, if not us? And, I attribute anything remotely positive about me that could be related to being autistic.

For example.; I spatchcocked a turkey for the holidays. It was 14 pounds, took an hour and a half to cook, and it was so juicy and tender. When people asked me about it, I said "It's an autistic thing," [which really, it pretty much is. It is a very NT thing to cook the turkey in a way that will ensure most of the turkey is dry and overcooked, just because that's the way it's always been]

Also during the holidays, while I was decorating Christmas cookies, someone mentioned that I was having as much fun as a little kid. I said, yes, it's an autistic thing. They said "Really? That's so cool."

Before I got cancer I looked so much younger than my age [no more] and when people commented on how young I looked, yeah, an autistic thing.

I am told by people that I barely know that they feel they can tell me anything. I tell them they can, and it's an autistic thing.

I could go on and on and on. And people say, 'wow, I didn't know autistics were that way." and that's when I pull up a chair and give them a lesson in being autistic [incuding I am sorry to say, the autistic tendency to ramble on and on, but, I am working on it]

The diagnostic label is good for getting support and accommodation when needed, but I don't find that the autism label helps others understand me if I tell them that the label applies to me. It causes more misunderstanding of me, as they apply the stereotypes they know to me and may think that I am less capable than I am or that I am not capable of specific things that autistic people are stereotyped to be not capable of. I would rather people know me first, then maybe they will find out about the label through gossip mill or infer it through observations. It is even weirder for me, since I study autism, and I work with people who study autism, and of course, the people I work closely with know about me, but some others I don't work directly with, they don't know, and I don't tell them, and I don't know why I would, but I feel sort of weird for not doing so, since some people know, and others don't, and it's like I'm purposefully keeping a secret from the ones who don't, but even the ones who know, I didn't tell most of them, but it was easily inferred through what I said about the projects.

I've hated being labelled with autism for years. It's like a cancer that eats up any identity I had. When people know about my autism label it's like they're consulting the DSM every time I encounter a problem.

For example I have problems focusing in school. I find it extremely hard to cope with the workload at school. It's like everyone has way more energy than me. I simply told the teachers that. They thought my problems were related to problems adjusting to change which is a trait of autism. I told them that is not the case. They refused to see any other possibilities.

Another example is music lessons. I did not mention my diagnosis to my music teacher. Whenever I encountered problems, she simply looked at the problems for what they were and found solutions. Her approach works way better. If I pursue higher education I will find a way to keep my diagnosis confidential so I can actually do some learning.

Kingdom: Why not just say, "I have Asperger's, which means I have certain sensory and social difficulties"? That's a conversation starter, and in that conversation, they learn not only about you, but about other people in their lives who have autism or Asperger's.

Vicky: What you're describing is why I'm hugely in favor of people (of all stigmatized stripes) "coming out". It's not always safe for everyone to come out, but for anyone in the position to do so, it gives us a chance to advocate and change those stigmas. My way of doing what you do is I say, "That's one of my aspie super powers." And even when I'm describing my flaws, like explaining to someone why I feel cranky, that it's due to overstimulation and that I need to close my eyes and ears for awhile. It's a way to let people know that I'm just a different kind of person, but still a person, "better" in some ways, worse in others. BTW, people usually think I look way young, too. I still get carded, and I'm 39. I wonder what that's all about!

btbnnyr: Since my DX, I tell just about anyone when it happens to come up. To my surprise, I often get a, "That makes sense" from people who have known me a long time. I'm usually thinking, "Is it that obvious?" Then other people have the opposite, "Really? You don't seem like it!" haha. I see it as a chance to change their perceptions of what it's all about. (To be fair, I live in the Seattle area where we have the highest per capita cases of autism in the world. So more people probably are familiar with what it really means.)

Devil: Do you have an IEP or equivalent at your school? My son had one through his school years. It gave me and him a chance to talk to his teachers and counsellor about what he really needed to work on and what services they could provide. We sat down with them once or twice a year and it really helped. Of course, no one at the school figured out he had Aspergers. I had an ADHD DX for him, but no one suggested autism. Now I'm 99% sure it's Asperger's, even tho he doesn't have a DX yet. Anyway, what was my point? ;) Yes, many teachers are really stubborn.. supposedly we are the "rigid thinkers" but I see just as much of that in the NT world, especially when they don't listen to us. I hope things get better for you.

In higher ed, you might find (depending on the school you attend) that they're more supportive in ways that actually help. They will treat you more like an adult who knows yourself best. You'll have more autonomy to ask for specifically what resources you need, and they'll do less of trying to push an agenda on you that doesn't fit. I know this because of my friend who got accommodations for her ADHD in college (extra time on tests, ability to tape record lectures, etc). She now has a Masters Degree. I know someone else who works at a university helping students with special needs.