Label Me, Illuminate Me

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I think those might be Vicky things, not Autism things!

jamgrrl - I missed you - I was just thinking about you the other day and how you always start such interesting conversations.

I think labels are often slapped on and haphazardly defined and they cause problems. Yet labels are words and we live by words.
Quite the conundrum. How do you speak about anything at all without attaching a label to it, yet how can we fix it so that EVERYBODY understands each label? Maybe if we could universally suck the emotion out of all labels - for instance Autism is a now a set of symptoms that help us understand ourselves and give us a path to finding solutions to our problems. It's NOT any of the things people mistake it for, or a word that makes our families deny it in shame, or a reason to shun us. But how do you make that work?

Labels can be problematic, education is the solution to that.

You are lucky your sister took the news so well - mine just yelled at me and said I was using it as an excuse (although I'm not sure for what).

I don't think that I want a diagnostic label to illuminate me. I think that I illuminate me bester than the diagnostic label. However, after I become super awesomest neuroscientist with muchos super awesomest discoveries, I will tell eberryone that I have asd to prevent them from arguing about whether or not I had asd after the mothership picks me up to return me to my home planet.

I am one of those strangely extroverted autistics [which basically means that I tend to not only annoy NTs',but other autistics as well.] As far as sensory issues, I do have them,but when I hear a child laugh, it feels me with joy. When a child cries,I am obsessed with alleviating their sorrow [ probably because I DID have a tragic childhood, not because of being autistic,but because my family were monsters]

Until my youngest son started MMJ I ran a daycare from my home. I loved it. My daycare kids loved it [and they loved me,it was mutual] I had so many special needs kids and somewhere along the way I received the nickname of "The miracle worker." It got to the point where if Adams County was on the fence about placing a foster child with a family member, whether or not there was room in "Miss Vickys" daycare became a determining factor.

At this point in my life, I could fake normal for short periods of time. Social workers would come to our house and ask what my secret was.I would laugh and say that the kids and I understood each other because they were creatively wired and so was I. I never actually came out and said that I am autistic because I was afraid that I would lose my license [ while getting approved for licensing, they discovered that LJ is autistic, and we had to jump through hoops as the psychiatrist convinced the state that my son would not present a danger] If I had been certain that I would have retained my licensing, though, I definitely would have been open about it.

Shortly after I decided to "come out" I began receiving a long term chemotherapy that has made faking normal almost an impossibility. And that's okay. I have too much on my plate right now to deal with trying to win a best actress award as well. But I am extremely voca lnow about being autistic. And there have been some emotionally devastating repercussions [another story] But you know what? There have been some people who have been beyond accepting. For example, I have been able to organize a 3 day mini retreat here in Colorado for next month. The cost for each participant is only $100 per attendee[still a couple openings] because a few of the people I've told about it have together given several hundred dollars to offset costs.

More importantly, though, they ask questions, and I answer them. They are becoming less ignorant, and more accepting, because i wear my autism label. The ones who turned their backs on me when they found out, well, yeah, it still hurts, sometimes a lot, but I have never felt more confident[ now that I am an old woman] that I was following my life purpose.

I am one of those strangely extroverted autistics [which basically means that I tend to not only annoy NTs',but other autistics as well.] As far as sensory issues, I do have them,but when I hear a child laugh, it feels me with joy. When a child cries,I am obsessed with alleviating their sorrow [ probably because I DID have a tragic childhood, not because of being autistic,but because my family were monsters]

Until my youngest son started MMJ I ran a daycare from my home. I loved it. My daycare kids loved it [and they loved me,it was mutual] I had so many special needs kids and somewhere along the way I received the nickname of "The miracle worker." It got to the point where if Adams County was on the fence about placing a foster child with a family member, whether or not there was room in "Miss Vickys" daycare became a determining factor.

At this point in my life, I could fake normal for short periods of time. Social workers would come to our house and ask what my secret was.I would laugh and say that the kids and I understood each other because they were creatively wired and so was I. I never actually came out and said that I am autistic because I was afraid that I would lose my license [ while getting approved for licensing, they discovered that LJ is autistic, and we had to jump through hoops as the psychiatrist convinced the state that my son would not present a danger] If I had been certain that I would have retained my licensing, though, I definitely would have been open about it.

Shortly after I decided to "come out" I began receiving a long term chemotherapy that has made faking normal almost an impossibility. And that's okay. I have too much on my plate right now to deal with trying to win a best actress award as well. But I am extremely voca lnow about being autistic. And there have been some emotionally devastating repercussions [another story] But you know what? There have been some people who have been beyond accepting. For example, I have been able to organize a 3 day mini retreat here in Colorado for next month. The cost for each participant is only $100 per attendee[still a couple openings] because a few of the people I've told about it have together given several hundred dollars to offset costs.

More importantly, though, they ask questions, and I answer them. They are becoming less ignorant, and more accepting, because i wear my autism label. The ones who turned their backs on me when they found out, well, yeah, it still hurts, sometimes a lot, but I have never felt more confident[ now that I am an old woman] that I was following my life purpose.

I have always found it fascinating that a set of seemingly dissimilar behavioral symptoms could be wrapped so neatly within a single Aspergers “label”.

For me, the label itself was less important than understanding that my mind processed complex unstructured information quite differently than the typical human being (based upon the neuropsychological test results). I had not realized this until I went through the diagnosis process. Yes, I realized that I was somehow different/odd/strange. But, I never understood why.

Aww, thanks wozeree! I'm glad you joined this thread!

What you're describing has already happened with a label that once was derogatory, and now for the mainstream, it is just descriptive. That word is "gay". It took many decades, but they "took it back" through gay pride and the coming out movement. It took millions of people owning that label to redefine it. But they didn't change the stigma around homosexuality in spite of the label - the stimga was already there. They used the label to change the stigma. And of course that stigma isn't entirely gone, but it is fast becoming irrelevant.

Vicky: I don't think extrovert autists are rare... I think they're under-diagnosed. I think the social descriptors of Asperger's are arbitrary. Yes, lots of us have social issues and are introverts, and even have social anxiety etc. But I know several aspies (all undiagnosed) who are incredibly extroverted, who get energy by being around others or at least don't lose energy, and who are very outgoing and socially skilled. I think autistic minds tend to specialize, and many of us didn't specialize on social, and the only reason scientists noticed was because it stood out. I also don't specialize in metallurgy, and neither do most of you, but they don't list "bad at metallurgy" as a trait because no one is expected to know that. ;) Anyway, one of these social aspies I know also very much loves kids and is very good at tending to them.

It sounds like you've done very well for yourself in spite of everything. You were probably wise in not telling the people who could take away your license. I don't know what area you live in, but it sounds like they would not have been understanding at all. It's also good that you're now in a position to be out. I am very grateful that my life situation allows me to be out of all my closets. :)

Have you heard of Spoons Theory? That's what it sounds like when you talk about your battle with cancer and other stressors making it too hard to pull off "normal". Here's what I wrote about it with links to the original spoons theory article, and then I add my own theory to apply it better to autism. I really love new words that help people communicate and think better, and "spoons" can be really useful. http://www.lunalindsey.com/2013/10/spli ... r-for.html

Rocket: There's a very good book I'm reading -- I haven't finished it yet because I wanted time to process and blog about what I'd already read. It's called "Communication Issues with Autism and Aspergers" by Olga Bogdashina. She goes into the science of the sensory issues and other factors that make us different. I love that she pays close attention to the experiential accounts from actual autists, rather than using science based only on external observations. While I sometimes find myself thinking, "Well, I don't really identify with that", I never get angry or think she's treating the material unfairly (like I have with some authors). It's been highly enlightening. I probably should have mentioned her in my blog post. hehe. She has a couple of other books, too, and I'm very excited to read those as well. I just need more time! ;)

Labels are like oxegen: perfectly fine, and even if they werent fine you dont get the option to do without them. So talking about labels as being dispensible is two kinds of nonsensical.



If you really are diagnosible as being on the autism spectrum then all of the nonexperts in your life will give you a 'label' whether you want a label or not. That label would be "sick ret*d wierdo loser".

So you can embrace THAT label. Or you can embrace an expert labeling you as an "aspie/autie". Thats the choice. There is no other choice.

If you dont like the label of aspie or autie then you have to explain to us why you prefer to be called "a sick ret*d wierd loser" because thats the alternative. Having "no label at all" does not exist as an option so its bogus to speak as if it were an option.

Natural Plastic; I am in agreement with you about labels. Not all autistics are considered "sick, ret*d losers" though. There are many autistics who can "fake normal" well enough to pass as NTs'. Just as in the civil rights battles in the 60s',and the more recent gay activism, people who could pass as "straight" or, black people who were acceptable because they didn't "act black", had to vocally speak up and wear their label proudly in order for others to listen.

I feel the same is true in the autistic community. Autistics who can pass as NT, particularly those passing as NT who are admired by NTs', if they care about our community NEED to stand as proud autistics. Why? Because as more and more of the "not so scary" autistics stand up, the NTs' will be more likely to listen to the rest of us. That is why all autists who care about other autists need to slap on that label while shouting "I'm autistic. Hear me roar!"

Natural, lol right on. Very excellent point and well said.

Vicky, exactly. It's one reason I'm out and loud. Lots of people consider me successful (sometimes even more successful than I actually am, which really confuses me), so when I announce my label it helps normalize the rest of the spectrum.

This: http://www.youtube.com/watch?v=cWOwNP9vC6k

This is called "disclosing symptoms" and can be a less risky practical solution. Autism is complicated, most people neither have the interest or time to have it explained to them. The economy is tight, the employers have most of the advantages, and there is the widespread perception that Aspergers is mostly hype if not a conspiracy to commit disability benefit fraud, so it makes it very risky to come out in a work situation.

The "Aspie-Autistic" label is useful for me in explaining a lot of my life. As far as people close to me I feel by not disclosing fully I am in a way lying to them, so depending on the person it might be worthwhile to take the risk, and educate them. I have on occasion tried to correct peoples mis perceptions online.

It's great that you've found a label that explains your life well. I haven't found one yet. My mom mostly sought out the diagnosis for services. Some things about me kind of fit the autism criteria, but a lot don't. I prefer to disclose individual symptoms as necessary because a big portion of the autism criteria does not apply to me and some of my symptoms are not explained by autism. When I'm an adult I will disclose my autism diagnosis to police to make them go easier on me. I probably won't disclose it to friends, partners or employers.

Last edited by DevilKisses on 29 Jan 2014, 3:16 pm, edited 1 time in total.

I wish you well in finding a label that fits you.

If I find one, it probably won't be until adulthood.

Labels help people sort things, so I am not in opposition to them....however its good to keep in mind we are all individuals that different labels can fit on. I mean I don't view autism as my entire identity but it is certainly a part of it. The main problem with labels is sometimes inaccurate or exaggerated stereotypes can be formed and create ignorance.

For instance one one said autistic people are supposedly just human shells who can't talk and have no significant brain function...then there is the stereotype we all have some special gift that can be put to use or are all good at math.

That stereotype is definitely wrong, I have lots of special gifts. ;) But yes, like all tools, labels do have drawbacks that we need to be aware of to maximize its benefits. They can definitely be wielded to cause harm. It's just that harm is not inherent.

DevilKisses, I'm sorry you're having trouble finding a label. As I pointed out, various labels have helped me quite a bit, especially autism/aspergers. That is another flaw in labels -- if a person doesn't fit into any buckets (or rather, if the bucket hasn't been discovered/invented yet), then some people fall through the cracks and are still helpless to have these handles for thinking and talking about things. It seems like you've found a home and support here, though. WrongPlanet does a good job of welcoming anyone who feels like a square peg.

Anyway, I think the current diagnostic criteria for autism is bunk anyway. The "symptoms" they've chosen to focus on have historically been based on how we bother other people, not on our own experience. I'm glad they are starting to focus on things like sensory processing, because I think things like that are the true defining characteristics. The outward stuff is all just coping mechanisms for what goes on inside. Some of us have learned to cope in ways that don't manifest outwardly in ways that match the DSM-V's summary of what annoys NTs. :) It's harder to diagnose or even know we have a problem. I went 38 years without knowing I had autism. I think this is why it's harder for aspie girls and women to be noticed -- we cope in more invisible ways -- less rocking and running around the room and avoiding eye contact. More internal repression and people-pleasing and fantasizing, and other skills that all women are taught.

I wouldn't be surprised if, once they build a diagnostic criteria weighted more heavily on causal, internal factors, if we find that it manifests in far more ways than the DSM allows. I've been thinking about writing a post on this topic as well. :) The Intense World Theory is making good inroads into this approach, I think. https://medium.com/matter/70c3d64ff221