How can I get help without labeling or stigmatising myself?

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First of all I'd like to say thanks to everyone who's taken the time to read my posts on this board. Your advice and support has been very much appreciated.

So basically I deduced that have a condition which gives rise to my extreme personality, "social dyslexia" and incredible eye for detail, that is very probably genetic in origin. I've also deduced that I'm probably a third generation person with this condition and it isn't my fault.

This has probably contributed to my clumsiness. I've tried to adapt this as best as I can and do sports to try and rectify this. But again, people will comment on any residual clumsiness that I really can't control.

I have also figured out that my asocial, hardworking, conscientious and determined kind of personality doesn't fit in well with the current crowded cultural socially charged teamwork style climate.

I can't and don't want to step outside of my body and be someone else.
I am happy being who I am even if other people aren't.
I also don't want to upset other people.
Why should I have to change or be labeled when my grandfather and grandmother and probably their grandfathers and grandmothers before that didn't have to?

I just want to be accepted for who I am without the stigma of any label.
I do not wish to be called "disordered" because I'm a capable and conscientious person.
Having an AS label hindered my chances and turned people against me.

I'd like to be known as me.


Also, many counsellors have asked to me to turn to my family for "emotional support".

The thing is I've discovered is that my family don't do "emotional support". They only do "practical support".

To be quite honest, it's unfair of me to ask my family to do something that they have no interest or relevant experience in. We don't seem to communicate with each other in the "chatty" way that many other families do. We don't have heart to heart discussions or express how we're feeling at all. It's just not our style. The whole concept seems to wishy-washy and silly top us. We prefer to get things done and not get bogged down and distracted by feelings.

I've realised that we don't maintain eye contact with each other, listen to each other's points of view or make subtle facial expressions. We talk over each other and have a laugh and do satire to diffuse the tension. It's just our style: there's nothing wrong with it. It upsets me that my family has been blamed for things that have been beyond our control (like our personalities) or genetic circumstances that couldn't be helped.

I've made a lot of improvements over the years. I don't monologue nearly as much as I used to. With a little bit of extra social practice and acceptance, I could be really friendly and helpful if people only gave me the chance.

I'm a very good student. I could theoretically learn any social techniques if someone who was kind, understanding, supportive and non-condescending was willing to teach me. Anyone willing to just give me a confidence boost would help. I'd be willing to do something in exchange for their trouble.

I'm not a bad person, and I'm sorry to everyone that I've offended in the past if I have come across that way. I'm sorry if I've misinterpreted anyones intentions or any social rules, but I've always tried my best and worked hard.

It would be really helpful if I could find some help or at least positive support that doesn't entail me being either labeled, stigmatised or misunderstood.

I see a blind spot in your view of yourself--you think you are rational and not ruled by emotion, but you are letting your emotions concerning being "labeled" keep you from getting the help you want. If taking on a label would get you more help, what does it matter what sequence of syllables NTs use to describe you?

I think she mentioned (briefly) having tried applying the "asperger syndrome" label to herself and said that it "turned people against her". I interpreted this as meaning that when she's attempted to use the label thus far, the result had been primarily opposition instead of support. It's possible this may have something to do with the people she's tried to approach for support, but I haven't read enough of her previous forum posts to feel like I could say one way or another if there were better strategies.

My own experience has been the opposite. I've heard one or two people I know say that they've seen or heard other people make negative comments about my being very public about my AS, but I haven't yet encountered any direct negative comments toward me about it. I've had a small handful of people in the IT/Software industry who I've known casually over the years who have actually responded very positively to my talking publicly about my neurological difference and even expressed an interest in helping me because they know about my employment challenges. Most of them have also read many of my technical blogs and articles in trade journals and have a solid understanding that my employment challenges are in no way related to my advanced technical competency.

The fact that I've always pushed myself to do those things and that I've previously achieved these kinds of laurels in spite of not having any formal education may have also contributed to people's response in my case. I think it may be easier for some of them to support me in that way because they can look at presentations I've given and in spite of my having somewhat poor presentation skills, they can see in my presentations that in addition to my being very proficient, I also have a strong interest in giving back to the community just for the sake of helping other people. And so having seen these presentations and read my articles and whatnot, although I am still awkward, I think they grok that there's a real person underneath my awkwardness, just trying to be the best person I can be, and so they feel comfortable putting their name down in support of me.

But having this kind of history is not a very typical thing for those of us on the spectrum, because most of us don't or haven't pushed ourselves as hard as I have to get out there and make a public spectacle of myself. I've had plenty of criticism too, but I feel like overall, most of my experiences have been positive... and as of yet, I've not received any direct criticism for outing myself as autistic. I'm honestly not sure how to translate my experience for others on the spectrum, or if such a thing is even possible.

And @Amber, I really wish I did have some better advice. My course of action right now is taking me back to Texas to apply for temporary disability and vocational rehab. Neither of which you can do without applying the AS label to yourself at least where the state is involved.

Yes that's right.
Many people avoided/bullied me because of my label in the past.
Details are in the Members Only section.

My parents were against my being labeled from the beginning.
They couldn't honestly see what was meant to be "wrong" with me: neither could many other people.
My parents don't want me to be labeled now.

In my country, the so called "help" I've received when I was labeled has been counter productive and negative criticism. I was also constantly asked to describe how I "felt" about things and engage in groupwork, which my parents thought was unnecessary, unhelpful and superfluous.

I hope you understand that's why I decided to ditch the label/deny it existed for so long. Perhaps if the help I'd received had been more understanding and constructive, I'd be more welcoming of the label now.
There is still a lot of ignorance where I come from, as I've alluded to in my other posts. I don't want to aggravate the situation or make myself an easy target. I want to help people and lead a productive life.

I am a capable person who can do presentations if required, it's just the small-talk, overwhelming from crowding/stimulation and misreading people that's causing the issues/problems. I have qualifications and am conscientious and systematic worker, which is why I do not believe that the label "disordered" would apply to me. I have proved myself as being academically capable in the past, if necessary, I could do it again.

I accept that I have a neurological difference that's genetically inherited: that's pretty much a given now.
I share personality traits with my parents. I also accept that my parents will never accept this. They quite rightly find any negative labeling of our family's personality traits and core views very offensive. That's why we fought against my being labeled for years.

I'm not saying that AS doesn't exist, looking at all the evidence objectively I see that it clearly does biologically. My denying that I have any of the traits would be like sticking my head in the sand. I am AS. But, until my condition is seen as a difference in ability rather than a disability to be stigmatised, I am afraid to ask for help with a label attached because of all the harassment and condescension I've received in the past.

As for NT/AS disability it does imply a kind of "us and them" framework.
I would much rather prefer if it was just "us" helping each other as best we can rather than all of these constant misunderstandings and aggravations.

I hope this makes sense.
All the best for the future.

Ambereyes,

The trick is to only share your dx with those who might support you. Not everyone. Not everyone knows what it really is. And not everyone needs to know.

There is no way around it. It's one thing to get support, but the other person needs to know what you're talking about, or they're going to give you support one would give to an NT. For most Aspies, that doesn't work. Even if you call it a form of autism, or a development issue, you have to give it a name, and explain how that affects you.

There is nothing wrong with being AS, but for people to relate in any meaningful way, you have to come up with something to call it, and then explain it. Otherwise, you'll get the "what are you feeling" crap over and over. If overcoming some of the social issues is on the menu, how you are needs to be addressed with your support system.

Call it an "alternative emotional development" syndrome, if that works, but you have to address the issues, and only with those people most likely and able to support you in the way you find helps. And if you need help in figuring out who that is, maybe a counselor can help with that.

And if you have a shrink who doesn't get AS, you need to find one who does.

Metta.

I really identify with the position you lay out in your original post, and the perspective you have regarding your family and your way of thinking. There is nothing 'wrong' with you or your family. You love each other and you don't need a 'professional' to tell you how to express that.

The practical style of familial support gives you a sense of safety in a world that can be filled with doubts. I believe families like yours are more able to weather society's hard times, because they have an unwavering, unconditional love for the family as a whole synergistic unit. No one part is less or more important than another, and the family's well-being is the most important thing. . .period.

More than most 'typical' families, I would imagine your family contributes back to society in the form of raw productivity. If I get you - if I am correct in my associations, your family members likely have a very high work ethic, due to their dedication to providing and caring for their family. But I'm getting off-topic. . .I digress.

The specific things you mention needing help with, "small-talk, overwhelming from crowding/stimulation and misreading people," are perhaps better managed via personal understanding (which you seem to be gaining an abundance of) and the patience and understanding of caring friends and extended family members than by professionals who would try to make you 'normal' by modifying your behavior and thoughts. That is just my own humble opinion. I'm sure there are worthy professionals who could be of tremendous assistance as well, but as of yet I haven't met them.

I didn't know for sure how I would handle telling people at first. But today, I wore my WrongPlanet golf-shirt to my Asperger's therapy session (I'm learning some parenting skills). I am a gifted teacher in a public high school and all my students know I have Asperger's. Several of my colleagues at school know too. I decided that I am not hiding it. It is who I am, and it will always be a part of me. I am not ashamed---I am proud.

But...I have not had any really bad reactions from anyone yet either.

Just a hunch, but maybe the lack of success with telling others about my past AS dx has something to do with the fact that I'm female.

Lots of people have said that:
"Couldn't I possibly have it and must be lying."

"Only men/boys get it."

"AS is not a valid part of the human condition."

"Don't stigmatise yourself: you're better than that."


Most of the feedback I've received so far has been: unhelpful, negative, hurtful and incredibly condescending.

When some find out about my past AS dx they talk to me very slowly in patronising tones.
This is stupid: I can understand what people are saying verbally when they talk to me normally.
I can understand really complex topics.


My parents also react differently to me when the topic of AS is brought up.
They react in fearful denying ways and blame other people/oganisations for my difficulties.

When the topic of AS is not discussed, they treat me like a normal human being and talk to me normally.

They do sound stupid .

The thing is, they aren't.

If only they were stupid...

Many of these people are very clever and have high level or professional qualifications.

If one hears "stupidity" or "ignorance" from a respected figure then others don't construe it as "stupidity" at all, but as fact.


Some of these people were old friends, work colleagues, doctors and supervisors of mine: people I had to respect.

Then again I could have misinterpreted much of what they were saying, but I did know that their overall speaking tones were concerned, negative and/or frightened.

Perhaps I shouldn't unfairly blame them for being unable to handle or understand such complex issues.

The thing is, there is no-one I can currently think of who will do this.
I've discovered that people will only treat me reasonably and give me practical support if I deny that I had AS and say that my dx was a "mistake".

People I know and love honestly don't believe that there's anything "wrong" with me.

They are correct.



Lots of people where I live have to me that there's something "tragically wrong" with someone who "has" AS. To them and my family:

AS = "wrong"

I'm sorry, but that's how they view the situation.
They believe that I'm a capable person and therefore cannot "have" AS because there's nothing "wrong" with me.

They see AS as a disease, not a "state of being".

Now I'll have to try and figure out a definition of my own.
"Perceptual orientation"?
"Social dyslexia"?
"Being socially/environmentally overwhelmed"?
"Object and task orientated lifestyle/speech"?
"Being brutally honest?"

It's also going to be a challenge to try and explain something that was never really clearly defined by others to me in the first place.



This is on the menu. It is affecting me and holding me back from achieving my aspirations.
I don't really have an AS "support system" as such.
I do have a good practical family support system though, but they'll only "help" if I'm not labeled AS and am the "normal" person that they believe I am. They just think I'm a little shy, like they were all just a "little shy" when they had severe socialising issues growing up. I think there's more to it than that and quite rightly they don't want me "opening up their old wounds" by me "banging on" about it. Being in denial makes me feel better though.



I've been to several counselors. They kept asking me "how does it make you feel?"
They openly admitted that they didn't know much about AS and where I should go to seek further help.



99% of helpers/professionals I've met so far don't "get" AS in a positive light.
So I don't hold out much hope, but I'm trying to remain positive.
I honestly thought that AS was a negative "disease" before I encountered this site.
That's the overall message I got from most people where I live anyway.

I also believe that talking to a shrink might exacerbate any issues I have at the moment.

Perhaps the real answer to all of this is for me to find and an environment where I can function reasonably well and just try and forget about my past?

That's what my family have suggested anyway.
They don't honestly believe that "stigmatising myself" will help.
I believe that trying to help myself and not mentioning AS to anyone will help.

I've had nothing but bad reactions whenever AS has been mentioned or I've mentioned it.
I've had nothing but positive support when I've denied that I ever 'had' it.

In my country, people seem afraid of AS.
That Dan "Autistic Monster" advert shows the prevailing attitudes of many people in my country.


That's why feel like I'm "going round in circles" because people say:

"You've proved that you don't 'have' AS because you've done so well academically.
Your dx was a mistake."


I'm damned if I do tell people, but struggle if people aren't aware of my social difficulties.

I just want to be positive and try to sort things out constructively.
I seem to attract all kinds of condemnation and negativity if I mention AS or try and seek support.

All that negativity isn't helping me or others much at all.

A good question.

While I think WP has been great for learning, at best I would claim to be part AS, but I have always claimed to be part human.

Even from the better inside view of AS, I pick and chose, for there are many variations. The part that is me is only part of the whole.

When we include the world view, the evil monsters of autism, I claim that back during the war some things were done that were just not right, and people lose interest quickly.

So I can see the view of claiming there is no such thing as Asperger's, because no one fits all the traits.

As for fitting in to the world, I do not think anyone does, but it helps to not think about it, and that covers most people.

Thinking too much is a major problem, in a world that does not, and just goes through the unexamined life without a thought.

They are not going to get what you mean, they do not have that inner space, it is a waste of time to try, and it agravates you and them.

We do not fit, but we do define space, like a parking meter, something the world is used to moving around. We are all obstructions to each others lives, and we still manage to flow through rush hour without major mayhem.

What Asperger defined, which has been revised, is a subset of IN EN personality types that make up 6% of the population, yet AS is 0.66%.

I hate to give a point to any therapist, but how you feel about it is a self defining issue.

I have severe impairments that Asperger never thought of, yet am happy when I am doing the things I like, and feel like I am losing when I am not.

Autism, it is all about self. So I don't go to football games, watch TV, talk on phones, and consider a lot of life a short term fad that will pass. The Romans did not talk on phones, nor did Ben Franklin.

I am not an interactor, maker of small talk, but I am a performer who gives speaches and writes books. Book writing does not work in a social setting.

I feel good about what I am good at, and ignore the rest. Take my China Policy, I do not have one.

In the recent election I ignored both parties, lack of intelligence seems to have caved in the world economy, it serves them right. AOL says Britney is going on tour in a hat and some tassels, I look at the market news. I do not like it, but I like change, and some of it does open chances for me, but not for most, they deserve being themselves, no need for further punishment, they are self regulating.

People are killing each other all over the world, but never the ones I think should be killed, I am beyond disappointment.

Lately it is Gilgamesh and the Early Bronze Age Hittites that catch my eye, not much good for picking up girls in bars, but it is better than crossword puzzles.

I feel detached from almost everyone, and am working on total detachment. Being a stand alone self seems to be the way I was born and the way I will die, so living it makes sense.

People can like me or not, and I most likely won't care. Out of six billion, I consider six a lot.

It is my nature to focus on things rather than people fads, so far I am right, they do not last, it is too late to take up Disco.

It is not in my nature to change, or to want to, I still do have a lot of drive in several directions, so that is what I do, and the world not only gets used to it, they buy my books. It is because I have a focus and can string together a story of hundreds of pages that takes them out of their conflicted twisted worthless lives for a few days of reading, taking a ride through a small part of my world.

I live a lot more than others, and do not wish to join in their passtimes.

So the best help I can offer, be yourself, make no excuses, aviod talking to annoying people, and follow your own star. We are the people who do things that take twenty or forty years, we get there, if we stick to our own paths.

Self can be a hard life, but it beats a second hand life from millions of insane apes who are lost and afraid.

A sense of humor is a great thing. This planet is one big joke.

I always enjoy your posts, Inventor.
You hit the nail head on!

i second this. i have definitely come around to this way of thinking, and i will be talking on radio in two states in my country about AS in a couple of weeks in an extended interview.
initially i felt reticent, but like glider, i am aware it is a part of me and i am not ashamed either.
the other issue for me is that the way my AS is, i cannot withold information. i am utterly transparent and the outside matches the inside with me. there is no discordance between the two.

so, if i know i am AS and have been dx'ed, it is just a matter of time before it starts coming out in ramblings and conversations. fortunately my career is such that it doesn't really upset the apple cart too much.
some people will rub their hands in glee ----- there is always the rabble rouser crowd in the stalls that want to throw rotten apples. such is life.

i also feel if i personally perpetuate secrecy regarding my AS, how is that helping to increase awareness about it? but that is a purely personal stance.

What kind of positive support do you believe you want or need?

You explain your differences and traits very articulately and clearly, and also some of the difficulties you encounter, but what I'm still unclear about is what you need.

If you met a counsellor or advice worker or even a friend who could help, what would you want them to say or do that would help you?