Labels and Fables

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So, I'm an adult who recently discovered that I may be mildly autistic, and although I haven't been diagnosed, I'm pretty certain I'm somewhere on the spectrum. But I'm not sure I want to be diagnosed, mainly because I'm not sure how I feel about being labelled. People love labels. Our languages depend on them, and they make the world easier to understand. But labels come with fables: the misconceptions and assumptions that are always attached. I imagine that when a lot of people hear the word "autism", they have in mind an image that has little to do with reality. I also feel that being labelled in such a way can lead people to see your identity as being defined by that word. Of course, much of this would not be an issue if I were to simply use discretion when disclosing a diagnosis. However, something about being categorized at all still really rubs me the wrong way. On the other hand, it might be a bit of a relief to know for sure, and I could become a genuine card-carrying member of this club, but... I don't know.

So I'm asking you: those who have been diagnosed; how have you felt that "making it official" has impacted your life? Those of you who haven't been; why? Did you decide definitively not to seek a diagnosis, or do you just not feel it matters much? Any and all input from any and all perspectives would be much appreciated. Thanks!

I was 55 when I discovered I was autistic. my life was pretty much set and I had learned to cope through the school of hard knocks. I briefly asked my psychiatrist what he thought. he said I would have to travel to a major medical center to get a diagnosis. just not worth it to me. I know who I am. if I needed accommodations at work or disability benefits, it would be a different story. as things stand, I'm happy to have an explanation of many of my difficulties in life, even without the formal title.

Yes, and my experience has been positive. I was diagnosed with Asperger's (to my own surprise!) in a public mental health facility while receiving cognitive-behavioural therapy for OCD in that same facility. It has helped me a lot:

1. With the diagnosis in mind, my therapist and I were able to circumvent certain pitfalls (but also use certain strengths) that come with Asperger's in the OCD treatment.

2. Generally, I understood myself and my relationship with others a lot better.

The diagnosis has been quite decisive for me, predominantly in a good way. Maybe others don't need the "label", but for me it provided some definiteness and clarity that has worked to my advantage.

It doesn't have to be a label, it doesn't have to define you.. all it should have to do is answer your questions, and bring understanding to your life.

I recently finally pursued assessment and was diagnosed. It's still very new and I haven't done a universal disclosure, but so far my feelings about actually receiving the diagnosis of ASD have been positive because it's just sheer relief to know more for sure about why I am the way I am.

However, I also have no problem with those who cannot afford to obtain, or choose not to obtain a diagnosis, but are satisfied that their own self-knowledge leads them to believe ASD is why they are the way they are.

I was living in that state of being for a good couple of years before last month when I got my actual diagnosis. It felt good enough for ME, but I wanted to go ahead and know for sure.

I haven't told everyone in my world, as really it's none of their business. I have told a couple of friends. I made one mistake and told an acquaintance I wish I hadn't. I will learn from that and be more judicious in future. I will disclose to others depending on the situation and if it will benefit me for them to know, for example, the landlord/manager of my apartment building doesn't need to know, but if they make further trouble for me (they've harassed me a bit in the past) or even if I might want to request a swap into another apartment with less traffic noise on the other side of the building, for example, I will disclose the basis upon which I'm asking for different treatment.

My experience post diagnosis has been positive, but I'm old enough to know that I only need to disclose it to someone who I trust and needs to know. I'm not about to go around shouting it out, it is simply information to allow myself to better focus my energy to deal with the exasperating manifestations of the condition.

My former therapist dismissed the idea of getting a formal diagnosis on the basis of acquiring a "label", and I really don't know what he meant by that.

I've already been "labeled" an underachiever, smart but no follow through, "I don't get you", not serious, quiet, shy, always holding back, wallflower, etc. etc.

I'd have to say my experience pre-diagnosis wasn't so positive, so what did I have to lose?

I was diagnosed early, and that gave me access to support. Some of those people were respectful of me, genuinely believed in me, and encouraged me to grow past my previous limitations. Others treated me like a child, didn't listen to anything I had to say, and smothered me.

Socially, none of the stereotypes really fit me and I believe they'd be negative if word got out. I'd probably be treated like a child by some people again instead of viewed as the smart but solitary student in class or the helpful but somewhat distant peer tutor.

The label got me the help I needed in school and it has helped me get disability and employment. I think I did fine before the label but apparently the help I was already getting wasn't enough. It's like tying to treat a problem without knowing what is causing it. You always have to figure out the core.

I was diagnosed hyperkinetic disorder with tics when I was 4 years old (that was in 1993). Then in and out of psychological / mental health services for my childhood, until at age 15 I had a psychotic episode which was the first of about 15 psychotic episodes in 8 years. I was diagnosed with schizophrenia at 15.

But at 16, I was diagnosed initially with Asperger's Syndrome. My mum messed up the diagnosis process by lying to the assessor to make me seem normal, and my mum threatened to "break my bones and deform me for life" if I "acted weird" (my mum had alcohol problems and was abusive to me - it was my dad that organised the assessment).

Now I am 25, and I am diagnosed "high functioning autism". Although my professionals unanimously agree that I am nearer moderate- than high-functioning, but I have a very high IQ, so desipte being classically autistic, I have the "high-functioning" label.

I am glad I got diagnosed. I was banished from all my local nurseries as a child for "severe aggression" and ended up in a specialist nursery. I was expelled from two schools and suspended many times. All because of what I now know was unrecognised challenging behaviour. Now I am at university and I have a full-time support worker there who keeps me safe most of the time, and if I start screaming and showing challenging behaviour (which happens every time), they know what to do.

Supported housing (for mental health as the council did not offer me any autism services at all) was sh*t. But now I live alone with support four times a week from an autism charity for things that admittedly most people my age would have no issue doing.

So, yes, I am glad I was diagnosed. It explains my challenging behaviour, disinterest in people / socialising, my severe difficulties with interaction, and my communication problems.

I was officially diagnosed at age 16, out of no where. My mom knew it was inbalanced depression, not seeing my autism initially.

Well even if you don't have the autism label I am sure there are others, everyone has labels and humans do love them because labeling things makes things less confusing, cats love string....just facts of life. Of course there are always inaccurate stereotypes and myths that might arise about any label one might fit under. I have been diagnosed, and it helped me qualify for SSI which has helped since it gives me income but aside from that i just see it as a term to describe more or less how my brain functioning is different from normal brain functioning...but I don't feel like 'autism' is my identity or entirely defines me I base my identity more on things that interest me and stuff I like to do and what not....I mean its not like autism is some sub-culture with a common style of music or any real identifying factor except how our neurological fucntioning differs from the norm. I mean a lot of people have the idea all people with autism are geeky nerds or something, and I am sure some, there are metal-heads with autism, pot-heads with autism.....I mean I also don't think neurotypicals see being neurotypical as their identity either. I mean it would really be up to you if you got a diagnoses would you be going on about that with everyone you meet, staying updated on every bit of info on autism that comes up and all that.

I got diagnosed, and I come to forums to talk about it and am somewhat intrested in maybe finding a group to meet with just to meet others on the spectrum...and if it comes up I might talk some about how it effects me and look up some recent info just to stay a bit updated. But aside from that my identity did not change over it...I am still the same person obsessed with metal and psychedelic rock, and good music in general.

I'd prefer a neutral option. I've had some patronizing people and a few bad experiences as a result, but I'd probably be in a worse position if I didn't get SSI. Beyond welfare, I don't see any benefits of me having a diagnosis.

I've had a generally negative experience. I got diagnosed because I was acting a bit weird when I was a kid and my parents really wanted funding. No one really knew what was wrong with me. My mom decided to make me look autistic because she knew it would get her funding. She had to fight for that label, but she eventually got it. Mainly by exaggerating some of my traits and finding people that would be willing to get me diagnosed. Because of my diagnosis people saw all of my behaviors as "autistic behaviors" despite my sister having the same behaviors. People often tried to make me stop those behaviors, but they didn't care when my sister behaved that way. I also got treated like I was half my age a lot of the time and teachers often publicly humiliated me.

I was diagnosed with autism when I was around 3 (1964), "brain-damaged" circa 1965-1966, and with schizoid personality disorder (1976, age 15).

In terms of it effecting my life on a social level of people making assumptions based on a diagnosis, I don't see why there would be any negative effects as once I know if I do have ASD I plan to just not tell anybody, simple, there is nothing that says you have to disclose to anyone. its not like the label changes anything other than what you know, you would be no different after a diagnosis than before, you might potentially want governmental help or with jobs, in which case you would disclose but if you don't then why tell anyone