How can I get help without labeling or stigmatising myself?

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First off, I would like to feel included and valued in my working environment, so that I can work alongside people (alone) in a positive atmosphere. I want people to understand that I can't always keep up with group discussions or crowds/noise, therefore find it very difficult to participate, but this isn't because I'm stupid. I want others to be aware that I have issues processing subtle non-verbal visual social cues, but not spoken English.

The adjustments would be very minor like putting up clear signs when new rules were implemented. Keeping me up to date with any new information. Slowing the pace of social interaction down if I can't keep up. Recognising that I work best alone. Giving me written instructions/pictograms and clear target deadlines. This would help everyone else as well, not just me.


I would ask a professional to give:

-A fully detailed, hard positive scientific definition of what AS is and what I can do about it, without changing my personality, so that I can succeed and survive in live and the workplace.

-Detailed instructions of who I should disclose to and how that will affect my opportunities and also what helpful services there are (such as obtaining a driving license, gaining employment, furthering my education).

-If possible, scientific proof that my coordination issues do have a neurological basis and are not just the bi-product of lack of physical practice or low self esteem caused by other's negative judgments in the past. Hard evidence and explanations would put me at ease and would make me feel less paranoid when people say that I "look odd" but they "can't put their finger on it."


I would like a counsellor who would:

-View me as a capable individual and not talk down to me in a condescending or frightened way or use "baby talk" on me. I'm quite capable of understanding normal English thanks.

-Have a similar positive "can do" attitude as my old sports coaches and mentors. Someone who'd give me practical advice and motivation. Someone who wouldn't underestimate me.

-Explain my differences to my parents in a non-threatening, biologically accurate way and not use the word "disorder".

This whole: "How does it make you feel?" is neither helpful nor goal orientated.
I know how I feel, but that doesn't get anything done.


I would like a friend to be there for me and admit when s/he genuinely doesn't understand. Someone who'd respect my need for privacy and offer to invite me round for a friendly chat. Someone who wouldn't judge or belittle me, who understands that I sometimes say "silly" things, but I genuinely don't mean to be rude. I have a close relative who says "silly" things and he thinks that's the way I should interact: hence I've modeled my social interactions on him, that's why it doesn't always go well or I'm socially clueless because he didn't tell me otherwise .

I would like websites and the general public not to think that I "suffer" from or "have" AS: it's just my personality. I am what I am. Many capable people including relatives have similar traits to me, yet they all had good jobs, were nice people and weren't told that they "suffered" from anything. I was told that that was just they way they were and they just muddled along as best they could. They did okay. The word "suffer" just makes people feel like powerless victims, it doesn't help anyone move on productively. It doesn't emphasise and consider the person's strengths. I call "suffer" an unhelpful pity inducing word for this reason.

Any positive help that wouldn't stigmatise me or deny me any opportunities would be fantastic. I would like any help offered to be genuinely helpful and not disparaging.
I would like any help to be a fully detailed plan of action with a holistic approach.
A bit like "Life Coaching", but much more specialised.

Any positive and non-stressed out advice would be brilliant.
I say this because virtually everyone in RL I've encountered up to this point thinks that AS is a tragedy and a "terrible disease" that I should have been "cured" from. Many people mistakenly think that only young boys get it too or that it's "contagious". Many were frightened and only gave me misinformation. This was why i was confused for years.

Hope this makes sense.
Positivity and practical advice, not damning negativity.

I don't understand.

Where I live, it isn't like this at all.
Everybody's so hostile even to the mention of AS.
You're damned if you do mention it and you're damned if you don't.

I wish you all good luck and everything.

I wish that I was allowed to be as open and honest as you people.

If I was, it would make my life a billion times easier.

I wish that there was an objective, scientific test for AS, then at least I'd be clear on what my limitations were and how to proceed.

All the information I've been given so far where I live has been thoroughly confusing and unhelpful.

The truth is, I'm angry at the way people tried to "help" me, but really just pitied and put me down.

I'm also angry at how these people upset my parents by saying that there was "something wrong" with me.

I hate being accused of not being emotional or social enough for my age. Who decides these things anyway?

Lots of people have said that I've been a loyal friend: it's all a load of junk.

Why should I be forced to be hyper-social when it really isn't me?

Hi AmberEyes: I am trying to think what to say about your experiences with AS as compared to people like millie and me. What I would like to know is what country do you live in (since you say people are so hostile toward you)?

Oh the UK.

I live in a funny neck of the woods really.

I've lived in rural areas where everyone knows everyone else.
In these sorts of areas, the people I've met are kind of suspicious to what they don't understand.

Also, I appreciate that the "help" I received in the past was probably worse than elsewhere. There is zero general awareness where I live among the general population and they think AS is a "disease".

My family was reluctant to have me labeled because they couldn't see anything "wrong" as such.

People who've known me as I am would rather that I wasn't labeled...because...well they don't see the need given my "abilities" and they think that I'm either being lazy or stigmatising myself.

I can actually function really well if I'm in the right environment.

My family have given me psychology books to read because they don't want me to be AS. They want me to be able to argue the case that I am a capable human being.

The thing is, I can't disprove the negative, that is I can't prove that I don't "have" it! In fact the more I research, the more I'm convinced that I've inherited possible personality traits from my family. They describe themselves as shy and discrete: I think there's more to it than that. One brach of the family are descended from engineers. Denying that I have engineering traits would be like digging my head in the sand. I've been friends with people like this too, but I didn't put two and two together at the time.


I'm glad to hear that things are better at your end.
I wish you all the best for the future in teaching.

When people have been diagnosed, they describe feelings of relief.

When I was assessed, my family were frightened and angry, so I was angry too.
They didn't want me labeled.

I'm sorry, but I wish I felt the same feeling of relief, but I didn't.
It was a shock.

Once when things got really bad, I broke down in tears in front of a counselor and begged him not to refer me to a psychiatrist to have me re-diagnosed.

Whenever I hear the word Aspergers Syndrome, I feel angry and confused at the treatment I'd received by the school and how health professions had treated me as though I was incapable of stringing two sentences together.

I wish I could feel relief instead of this.
I'm glad other people are receiving appropriate support and are relieved.

For mental issues, many doctors are willing to provide help even without giving a formal diagnosis. Doctors know more than anyone that diagnosis can come with a stigma or have life-limiting implications. So if you go into it, and tell them straight out, "I'm not looking for a formal diagnosis, but I need help", they'll usually work with you. Keep in mind, though, that certain kinds of help may be closed to you without an official diagnosis. They may even tell you what they think you have, if you ask them, but still keep it off your record.

For me, I know I have Aspergers. I don't need a doctor to tell me that. I suspected it for a while, but after talking with people who had it and asking a few specific questions, I knew beyond any doubt. I'm not getting diagnosed because I do not want the stigma or implications. Now that I know, though, it gives me insight into things that were troubling.

AmberEyes, it is the height of irony that your parents do not want you labeled because they do not want you discriminated against. Discriminated against by who? By people who think one cannot both have AS and be a capable human being of course.

I get your point, but I don't believe that my parents would see the irony as such, given how others negatively viewed my assessment. They're just trying to protect me from any unnecessary discrimination and nonsense: I can understand why. They just want me to be able to get on with my life without me having to worry about things like that.

Given that I have very similar character traits to my parents, they see me as...well...normal really. I think that my family genuinely want the best for me because they want others to see me as an individual, not as a label. In their eyes, they honestly can't see anything "wrong" with me. According to them, how I am is just the way things are.

They don't want me relabeled because they believe that it wouldn't be appropriate or helpful for me. I appreciate that lots of people really do need and require more help than I would. I'd rather leave those services for people who really need them. I'm possibly quite mild or at least good at hiding my difficulties. Given the right environment, I can pass as NT quite well with relatively few problems.




Potentially by employers, private insurance companies, educational establishments etc.

See thread:
http://www.wrongplanet.net/postxf97930-0-15.html

Again, since I myself was ignorant about the positives of AS (until very recently) and given the negative misinformation that my parents and others are bombarded with, many people are still ignorant and liable to make negative judgments based on what they've heard.

Again, it was the people who labeled me and tried to "help" me who said that I couldn't do certain things.



My family honestly don't believe that I ever "had" AS, because they said so.

Last edited by AmberEyes on 04 May 2009, 8:34 am, edited 1 time in total.

That seems like a much more sensible way of going about it.
Thanks.




Fair enough.

The AS assessment I had when I was little is still on my record despite my family's attempts to remove it. My status is don't know or not because some of the doctors don't really know for certain either. Some think I'm definitely AS, some probably don't.

When you're a kid, you don't often get the choice as to whether you're labeled AS or not, your school and professionals have the say in that. When you're really young, you don't get asked for your opinion on the matter either.

As an undiagnosed adult, you have that freedom of choice.

I think that people have got it wrong in terms of the word "have".
(This is my personal opinion)
Even the experts keep saying "have" and "with" with no justification as to why they're using the word have instead of "is" or "kind of perception".

What is there to have?
Where is the physical thing to have?
I don't get it.
I didn't get it back then, and I still don't get it now.

I've never considered myself as a person "with" anything at all.
I've just considered myself as being me thinking the way that I do.
It actually upset me a little when people implied that my way of thinking and perceiving was "wrong" or "not appropriate".

People have different mental operating systems and ways of looking at the world.
I can understand why being oversensitive to details and stimuli in some environments could be problematic.

Saying "have" for something that's all pervasive I thin is incredibly misleading, not to mention offensive, especially if no physical test (such as a blood test) can be provided for it.

If anyone says to me (again): "You have Aspergers."

I'll say: "Prove it."

I don't think that would be an entirely unreasonable request.


The phrase: "You have..." allows the other person to assume dominance and authority over the person being labeled. It also allows the other person to assume things about the labeled individual (which might not be true) and in some cases, view the individual through the lens of some preconceived stereotype.

Whereas the phrase: "I am..." allows the individual to express how s/he thinks and feels from the inside. It individual to report his/her internal experience. No-one knows better about what's going on in his/her own mind than the individual concerned.


If people would either name it something different or wouldn't use the word "have" or would actually behave in a sensible non-pitying way towards me.

If I could talk to someone sensible about sensory disintegration and overwhelm, for example. Then, perhaps I could help them understand the condition better. Perhaps I could provide ideas about how I perceive the world and help in a productive way. If I was provided with proper physical evidence, I'd really be interested in contributing to research.

The real curse for me has been the name itself and the word "have".
These words make some people think that I'm incapable of holding a proper conversation.
These words have negatively coloured people's expectations of me.

It seems that I can't talk about my sensory and social difficulties with anyone sensibly, let alone be taken seriously. Which is a shame, seeing as I believe I could contribute so much to their understanding, if they'd only listen to me and not be condescending.

As for people who'll support me sensibly in these issues, I haven't met any as yet.

Interesting thread, timely for me that it has come up again.

I agonised for months about mentioning it to my parents. I had no idea how they would react.

They ended up finding out by accident anyway, and their reaction? Nothing, they just discussed it with me and then went about their usual business. They didnt seem bothered at all by the idea that I might have mild autism. Bizarre.

I hope in the future AS becomes like this, something that people dont even react to or think about, people would just look at us, realise we have aspergers, and it would seem to just be a normal part of the human condition. It isnt a big deal anymore to be openly gay in a lot of social spheres... so I would hope Aspergers would go along the same direction... but I think that sadly a lot of annoying stuff is going to happen to us while society adjusts its views.

Anyway I hope you find a great counsellor or therapist. You might have to shop around a bit. A good clue would be to find someone who is curious about aspergers and open to learn about it, if you cant find someone already who specialises in ASDs.

Over the years the only people who knew about my dx were m family and a few teachers.I never told ANY employers whatsoever, nor anyone else.I wanted to push myself.So far, in employment, it is basically hit and miss and like fishing.It depends on the job and the environment.

KFC worked well for me in high school.I started out as a cook, then became a cashier, then eventually a supervisor.The way the work environment was structured at the KFC helped alot.Everything was repetative and there was only 3 staff members working on one shift, and each was in charge of their own little separate area.The cook was in the kitchen, which was separated by a wall, then there was the "pack" area where the supervisor was and who was also in charge of packing the food and making the fries and sandwiches, then that was separated by a wall with a window to the front counter area.I was not crowded and forced to be crammed with other people.It was structured as well in a sense of routine.

Then I worked as a grocery stock clerk at a store in Vegreville.That was repetative, and I worked independantly most of the time.At the same time for a while, I did drywalling which I was good at.That ended after a while.It was being run by my dad and a friend, but things went south after we ended up working in a house that turned out to have had asbestos in it.

Then came the fast food place in Red Deer, which was chaotic, non routine oriented, and where I was crammed in a room with five other people....NOT a good setting for a person on the spectrum.The chaos and such was overwhelming and caused my executive functioning to go kaputz.I was laid off after a few weeks.

Then I am where I am at now...working as a courtesy clerk in a store in Red Deer and doing well.It is independantly oriented and structured and routine oriented.

NONE of these employers know and never knew about my dx.

My college instructors dont know about it either, and it would suprise them if I did disclose it, since I am doing really well in school.I am studying to be a paralegal.This job will be very routine oriented and I will be working independantly in an office on a computer.....a good career for an aspie.

This person would have to be prepared to completely rethink what they knew.

I don't think that I'm the completely asocial monster that people claimed I was when I was younger. I have shown that I care about people and some people have been grateful for my listening to them. I think that I can read, analyse and observe social situations up to a point. I can learn to understand idioms and expressions by observing from a distance. I know what basic facial expressions and gestures mean. I can certainly do this for films and cartoons (as long as the storyline doesn't get too socially complicated: soaps seem confusing and pointless to me). I can also sometimes see beyond the social situations into human nature.

Perhaps I've been using a "work around" method all my life or I still can read social situations (overload and or excessive stimulation might just "get in the way").

It's the active social participating, approaching, getting into groups, making friends and trying to figure out what might happen next that I've always found difficult.

Anything I do disclose, I want to be useful to other people and help their understanding.

Actually perhaps I need to find a scientist.
Or a specialist.

Someone who will listen and not judge.

Someone who could use any information I provide to help others.
This isn't just about me any more or what I want.


It would be great if there was some objective test for all of this, then there would be no doubts or questions.

I know many therapists are nice and mean well, but, some of them do (through no fault of their own or because of their training/conditioning) have rather "wishy-washy" methods.

It'd be nice to deal with provable facts and get to the core of the issue.

I totally agree. For me I am looking to deal with the very real problems I have. I have fine motor dyspraxia and executive functioning problems. My social skills arent great. I can sort of say the right things but then my true personality comes out eventually anyway, lol....

But I know what you mean. It is those very specific helpful things that make all the difference. But it is so hard to figure out what they are, or get other people on board with them...