Undiagnosed Aspies; do you ever feel lost?

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No, I don't feel lost. And even if I would receive a diagnosis, it wouldn't change too much.
In my world I can be whatever I want and nobody can change that.

For me personally, getting an official diagnosis it isn't all that important. What matters to me is if it makes sense and if it helps me understand myself (YES! to both). If I am autistic, then strategies to deal with specific problems inherent in autism, should work for me. Both the understanding that I've gained and applying it to my life have already proven helpful after just 4 weeks. Whatever I have, if it works, it works.

I think that for people who are undiagnosed, one of the reasons we feel "lost" or left out is the people who say "stop saying you're autistic if you're not diagnosed".
There are many reasons one may be on the spectrum and still not have a Dx.

It feels as if we're not truly accepted or taken seriously unless we have a piece of paper saying "who we are".

I understand why people shouldn't state they are autistic as a fact if they're not diagnosed. I try not to actually say I have aspergers as if it is a fact.

But, if someone says they only suspect that they're on the spectrum, it may be much less likely their issues would be taken seriously.

No official diagnosis, I grew up in a place and time where such things as ADHD or Asperger's were entirely unheard of. A child with behavioral difficulties was told to pull him/herself together, and that was that.

As I can cope with adult life well enough to earn my own living and generally take care of myself, I would feel bad for abusing the public health insurance system for my own private "special interest".

Plus, given the place where I work, any mention of mental health problems may get me into trouble. In my opinion, many people there have various problems, but this is just not talked about. Admitting mental health problems makes you a sitting duck for bullying there.

But, many thanks to the participants of this forum for helpful comments, background information and moral support.

If you are notably different from everyone around you and find yourself unable to relate to the people around you, it is understandable that you would want to know, "why can't I relate to people? Why can't I make friends?" If a diagnosis of Asperger's is correct, then it's basically saying "hey, this is the reason you're doing this. It's not you being lazy, or a bad person, or antisocial. You were born this way." Cue Lady Gaga song. Sometimes people are spent their whole lives told that they're just in their own little world or being selfish (my case), and perhaps trying to change something that they cannot change, or can only change superficially.

Now, being non-autistic and wanting to be autistic is another issue entirely. I completely understand that issue; it's basically glamorizing somebody else's difficulties in life and taking all the advantages you have for granted. That's rather insensitive and usually a misinformed opinion.

Yeah I prefer calling it autistic personality traits. AS is such a loaded word, and it's so vagualy defined.


I'll also agree this form is more confusing than the real world.

Atleast on other forums you can be sure that a certain posters are on the spectrum at about the same level you are.

Anyone that's on our level, would be able to pass as normal on a message board. There is absolutely no body language or emotional content present.


Anyhow I'll never get diagnosed, I hope to work in the safety industry, and I'm too afraid that it'll be held against me unjustly.

it is the opinion of a woman, who has worked with autistic young people as her full time job for the past 12 years, that I have the condition and this is shared by the psychologist who diagnosed my dyslexia but since he is not specialised in autism he could not give a formal diagnosis. So I think its fairly reasonable to assume that I have aspergers.

It explains a whole lot:
* oversensitivities to certain types of noises
* I don't like touching people or having people touch me unless i've known them for a while and I like them
* I seem to be a regular target for random bullies
* Difficulty with normal eye contact
* Difficulty hearing everyone in group settings
* meltdowns over stupid stuff
* Obsessive list writings and having to know everything about my favourite hobbies
* terrible at multi-tasking and bad short term memory
* My skinpicking stim
* verbosity
* not "getting" certain types of jokes

I know all about feeling like I'm between two worlds - the doctors wont refer me for diagnosis as they say Im living independently, can hold down jobs (the fact that Im hopping from one to the next when teetering on the edge of being fired most if the time apparently not relevant) and I don't "look" disabled. Great stereotype - so my problems dont matter becuase i wear conventional clothing and cosmetics.

All my friends know that i am somehow "different". Sometimes i feel lost becuase I'd just like to be able to explain to my friends what it is that makes me different.

It's really quite simple, you see. One has many traits that other aspies have, and the explanation of being somewhere on the autistic spectrum just fits. It clicks. It just makes sense. All your life, you just know you're different, but you never know exactly why... Why people give you such a hard time, why it's so hard to maintain friendships, why everyone in any position of authority always misinterprets you and thinks you're trying to be a smartass or a "know it all" all the damn time.

I have it pinned down to Asperger's Syndrome. What I do not have is the scale or magnitude of it, and that is bothersome. Anecdotes on the board show me the severity of it and in many cases it's not even a disorder but a complete disability e.g., unemployment, self care, sensory overloads, etc............

I'm aware of two WPers that missed the diagnostic criteria by one single point. I recall that one member was married and this counted as one point against this. I suppose if his wife passed on the day before the query, he would've been Dx'd......... all subjective standards.

All in all I'd like to see "my points," but I get a strong sense that I'd miss a Dx. I do not have severe issues, such as employment and I've gotten a handle on the home front.

I know I'm impaired on the "Theory of Mind" front as I've posted my take on my accuracy of reading this here. I had family suggest that I have autism; but I do not feel sacked from it. I am able to cope without services.

My interest: What are my points?

Last edited by Mdyar on 13 Oct 2012, 5:30 am, edited 2 times in total.

Not really. Learning about AS really illuminated my entire life - everything that hadn't made sense before, suddenly did! Now I know that I have to intellectually learn about the nuances of communication. I had gotten in the habit of not asking about the nuances of communication because everyone else seemed to know so I pretended to know also. Now I know that I should ask questions about people's interactions, both in real life and in shows, when I don't understand what happened. I don't pretend to understand things that I don't really understand any longer. I know what I need to learn in order to function more optimally.

Also, given that my husband and my friends (that group includes my boss) all agree that I have AS and I don't currently need any special services... I'm not sure what more a piece of paper would provide to me, other than the ability to bring up my differences with my father or to get services someday should I need them. My mother already knows and her memories of my childhood (elicited before I suggested that there was anything different about myself) just confirmed my memories. Her memories and mine would suggest that my brother likely has AS as well.

Lost? Kind of.... Skip to the bottom if you don't want to read a Wall of Text

I have a good support system, but a very shallow one. By that I mean I have only one or two people that know and know how to deal with me. They are either much older than I am or much much older and too far away to be of help. What happens when they aren't around any more? I need to become more self sufficient, but first I have to deal with some other issues.
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I was diagnosed in the early eighties. Three seperate testing sessions by school psychologists and a few months of play therapy. Autism (I guess they didn't have Aspergers back then, I had never heard of it until a close personal friend and forum member clued me in) GID and FAS with a few other traits tossed in for good measure. My female parental unit didn't want to raise a "ret*d" or a "gearbox" so she took me for a fifteen minute meeting with a pediatrician and out I walked with a new Dx of ADHD and a script for Ritalin... Didn't help by the way..

A long dark time passes..................................................................

Now I need a proper Dx as an adult because no one seems to haves copies of my school or health records and I need to seek help with CPTSD and finding someone to talk to that will even try to understand me is starting to wear thin. If I had a Dx I would have an far easier time finding someone to talk to that understands people with asd, I'd accept someone that even pretended to understand at this point. The people I have been getting reffered to are for housewives who are upset that they ran over fluffy, or have to many drinky-poo's after work or guys that are depressed over ED or midlife crisis stuff. Not trying to decipher choppy verbal communication, sensitivity issues, echolalia on top of sexual/physical abuse and relationship/social issues.

I have basically lived with the misdiagnosis of ADHD most of my life for fear of being a "ret*d" if I accepted the Autism label, I've had many many more Dx's thrown on top but none fit who I am.

I know i'm not bi-polar. No swings between mania or depression, nothing cyclic. I know there isn't an ADHD bone in my body. Quite the opposite in fact. Nothing fits other than the original Dx (which was verified twice) Autism, probably Aspergers, FAS and GID with other traits tossed in. The genetics support it, my female parental units side of the family tree is rife with things like tourettes, LFA, HFA ASD's, personality disorders, drugs and alcohol abuse, fibromyalgia, anxiety, depression... Only three of my grandfathers fifteen siblings were NT/normal, the rest were in and out of mental health units and institutions their entire lives, which were short due to heart problems and high anxiety.

I had some therapy as a child with people that had training. I'd like more of that please, whatever it takes. I've been lost for 29 years, trying to make it on my own and it hasn't been working. I'm 36, I was pulled out of therapy and "special classes" when I was seven.

I'm with someone who is incredibly understanding, very very helpful and extremely patient, but he wants me to start dealing with the Bad Things from my past because they are holding me back and interfering with our already challenging relationship.


Another book of to-much-sharing...

Anyway, long story short, An official Dx as an adult would net me access to the therapy I need and it will also unlock other resources.

I'm undiagnosed but I often feel lost. Right now I feel pretty closed off from the world and no one will ever understand me. I'm so weird around strangers its hard to make friends in public. When I see someone I want to talk to, I cower out and don't even try, just to save myself the embarrassment of having an awkward, short conversation.

How can anybody call themselves a boy or girl if they don't have a professional's opinion? How can you say your hair is brown without a certificate to prove it? In a world ruled by stupid little papers, I think we've had enough... A paper doesn't mean s**t, and not everybody who has a paper should have one(and I'm not just talking about diagnoses, either). How many more do you want? How much farther does it have to go?

For some, Aspergers just makes sense. a diagnosis doesn't turn your aspieness on, and not having one doesn't turn it off... So it's foolish to suggest that you can't be an aspie without a diagnosis. You are what you are whether anyone validates it or not.


Anyway, I do feel lost, but not because I don't have a diagnosis. I've ALWAYS felt lost...

^right on man. if there was a like button I would have hit it.

Me too.

I don't know if 'lost' is the right word for me but I do feel that, now I have this 99% certainly that I have AS, that final 1% of doubt is preventing me from fully accepting it and moving on.

I find myself obsessing over the question, constantly arguing with myself in terms of how well I fit.

The whole woollyness of the criteria does not help either. It frustrates me that when I get assesed for a diagnosis, the deciding factor is likelt to be the degree to which I am able to manage my life. I am 30! of course I have had to adapt and find ways to operate that allow me to get by in the world - I never thought that doing so would prevent me getting an answer to suce a major question hanging over my life. I feel like a good analogy would be a doctor refusing to diagnose a fractured toe after, through sheer force of will, the patient made himself walk on it - Instead of getting an x-ray to see the problem objectively.

Strictly speaking, I dont even need a diagnosis, I would settle for the professional opinion of someone qualified to judge but it just so happens that diagnostic assesment seems to be the only real route to that.