To the undiagnosed aspies: Is diagnosis important to you?

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I had just recently heard of Aspergers, even though I have been dealing with the symptoms for a long time. After doing alot of research on the symptoms I am absolutely convinced that I have AS, though I have yet to be diagnosed. I have taken every quiz I could find on the subject and every score points towards AS. After finding WP and reading/making alot of comments and topics myself I found that I was finally speaking to people who were familiar with what I have been going through. The positive responses I have gotten from some questions have only further cemented my belief that AS is what I have. What I am wondering from other "undiagnosed" aspies is what caused you to come to your conclusion, and is being officially diagnosed something you are worried about? It seems like there is something in the back of mind that is worried I would be found to not have AS, and then I would feel disconnected from the one community that seems to understand what I'm going through.

Years of increasing awareness. I'd catch myself doing things I thought of as autistic and try to suppress them because I didn't know what to do about them and I didn't even know what autism was beyond the idea of particular behaviors. A few years ago I was reading feminist blogs, found links to a disability carnival and ended up reading autistic blogs. I read one back to the beginning, and read several others and started seeing a pattern that I didn't know what to do with, so I just got upset and stopped thinking explicitly about it - although I tended to take things like bad media portrayals and Autism Speaks personally, I didn't really identify myself as autistic. Several months ago I found some accounts of ADHD that explained some of my difficulties, and I thought at the time might explain all, and this held up for a few months until it became obvious I was dealing with a lot of stuff other ADHDers were not. At the same time, the noise level in my household had gone up tremendously and I noticed my reactions were a bit out of the expected ordinary.

So I started reading about autism and asperger's again. I've talked to autistic friends about it, and did the research, and it's just been increasingly obvious to me. Things I took for granted as normal for most people are normal, for people on the autistic spectrum. It's the thing that makes sense. While I still am sure about ADHD (stimulants improve those symptoms), I suspect AS plays a larger role. And, being honest with myself, I had already realized it was true a couple of years ago.

I am not sure whether I need an official diagnosis, although I think having one might help with some things, I have heard it can cause harm in other ways. Since I'm in the process of applying for disabity (SSI) having the information about what I have on file may help, even though they care about impairments more than diagnoses.

I am worried about being told I don't have it, but since I already have two misdiagnoses in my life, I do not particularly trust the infallibility of medical professionals, and I understand that a professional telling me I do not have AS does not actually mean I do not have AS.

Also: Friends who seem to think this is a recent thing and I'm rushing into it, and keep trying to convince me that I'm wrong, or tell me how my behavior (mimicking other people, for example) is NT-like, are driving me up the wall.

I simply expect more NTs to complain about self-dx than autistic people. I find I don't want to talk to them about it because they are so insistent that assumed as NT means actually NT.

Last edited by Verdandi on 02 Jan 2011, 5:12 pm, edited 2 times in total.

Same process as yourself; research and elimination of other options, coming to WP and realizing others here have similar problems/outlook.

There's a bunch of reasons I'm not pursuing diagnosis right now:

1. No pressing need to. I am surviving.
2. It seems effortful and perhaps expensive.
3. Might be a waste if after all efforts and expenses incurred, It's decided (perhaps wrongly) that I am not autistic/AS. This happened to a friend of mine.
4. There doesn't seem to be any real services for autistic adults, so all I'd really get is a piece of paper telling me what I already know. And possibly medicated for co-morbids, but I'm finding better ways to deal with those than meds.

I don't worry about the community rejecting me. There are a few people who like to play the 'you're not a real autistic game' but never mind them... I haven't seen much of that for a while anyhoo. You don't have to be autistic to be part of the WP community, there's plenty of NTs hanging around. I think the only qualifications you need to be here are 1. You have an interest in autism 2. You are respectful towards others.

Last edited by Moog on 02 Jan 2011, 11:09 pm, edited 1 time in total.

As far as a label is concerned, I do not really want one. I am becoming more sure of things as I read and interact here. However, I do feel that having a diagnosis might help me in my present workplace. I believe it could help me gain strategic allies in ironing out difficulties with my supervisor. If there came a time that I needed state health benefits, having the diagnosis would certainly help in that process.

Yet at the same time, I know the evaluation is very costly, and most insurance companies won't touch it because they consider it a learning disorder.

The only reason I would seek a diagnosis is for school. If I had a diagnosis I could ask for help during tests or something. But other than that, I don't really need one, maybe for work as well.

Then there is the problem of getting a diagnosis. There are few people who are willing to diagnosis Asperger's in adults and even diagnosing Asperger's itself isn't really an exact science. It's essentially what that person's opinion of what someone with Asperger's is suppose to be like. So if they have little experience with someone with Asperger's, they won't have a good idea of what it is. I am unofficially diagnosed by two separate people who have a lot of experience with Asperger's. One person who has a teen boy with Asperger's and the other who has worked a lot with kids with Asperger's.

Well, my story is very complex... started as a kid when I was considered EI and placed in special education for part of the day. Mostly for having tantrums, severe ones in class that were very easy to set off. But also I had problems with social skills and was put through lots of therapy for that.

Anyway as an adult, AS would explain my meltdowns, special interests and social skills handicaps. But what it doesn't explain is my intact ability to read facial expressions and good eye contact. I have self-diagnosed in the past, but I don't know if it's really appropriate anymore.

Anyway to complicate things, I have a mood disorder and psychosis. My last doc said most of my stuff was because of mental illness, and my special interests were a personality quirk.

However, my current therapist and my last therapist think I have it, but I don't know what's going to come out of it.


I don't know if I really need a dx. Despite getting SSI for my disorder, I am living on my own successfully. But I am still not good at socially interacting with people. My therapist has offered to give me social skills therapy however. I am a bit worried about it though because I would love an explanation for the way I have acted all these years.

To the undiagnosed aspies: Is diagnosis important to you?

I will be 69 in the spring. Asperger's, in a sense, didn't exist for most of my life. In late 2005 I came down with cancer (non Hodgkin lymphoma stage 4... I am fine now), and the next year I had a wicked case of shingles that came with trigeminal neuralgia. I'm living alone natch, and a couple of months after the shingles I had an anxiety attack. I didn't really know what had happened to me. So just like with the trigeminal neuralgia, I Googled my symptoms. PTSD came up first. And I got into reading about different conditions in the DSM. Interesting but confusing. I took some online psych tests... and they led me to Asperger's. All the tests had me scoring well into the Aspie range. And also I read an article in Newsweek about Asperger's, and knew it was me. And when I look back through my life it's soo clear. For example I had a small business for 17 years, where I spent 90% of my time inside my car. Made lots of money and moved to a tropical island, where I lived in an 10' x 14' wood shack on the beach... for 15 years alone.

I learned to get through, and raised two fine daughters, who are both happy, happily married, and university grads with advanced degrees. I mentioned to my oldest daughter at one of our rare lunches, when she said she thought her friend Louise has Asperger's... I said, "Me too." And she rolled her eyes and laughed. I never mentioned it again.

The one thing that is impossible to fake though for us Aspies I think is the empathy thing. It's not compassion. It's caring about the details of the daily stories in the lives of the people we live with. I can't do it. And that daily story is what non-Aspies are expressing and emoting about openly all the time. It feels to others that we, or I should just say me, are not caring, being cold, prickly, and self involved.

But no... I don't want a diagnosis by professionals. They charge too much, and probably differ from one to another in their opinions about this "condition" just like they do with most others. And they would probably want you to "keep coming back," and probably try to get you to take drugs that they like to prescribe for things they perceive in your "condition" that "might" be improved.

I don't care about diagnosis even though I can barely take care of myself. But I do have the medicaid papers printed out and about to send them off. I have a toxic student loan I can't get rid of and it's only getting bigger. If I would have known autism was such a barrier for getting a good job I would have never attended college. Nothing I can do now, but the government has a super toxic loan that is only getting bigger. Maybe diagnosis will help me get it forgiven, but diagnosis changes nothing.

Wow, amazing. I might have done something like that if I'd have had access to money or a shack

"Might?" lol. You are still very young. I didn't take off until I was fifty.

It is and it isn't. If I was in Britain or Canada and had access to health care services like that, I'd probably go just for the sake of piece of mind, and in case I ever need to file for disability. However, I live in the US, where bombing Arabs is more important than universal access to health care. I'm not going to pay 1,000-4,000 dollars to take a bunch of tests and get a piece of paper telling me what I already know. Like others have mentioned, there's not really a pill I could take or any services for adults with AS. I already qualify for vocational rehab job placement and disability accommodation in the workplace, due to my co-morbids (Depression, Social Anxiety, General Anxiety). The only other thing I could get is SSI and I wouldn't do that until my only other choice was living in the street. If I ever have the money or the insurance to go for diagnosis (both unlikely), I probably will. If there's ever an inexpensive genetic test, I'll do that.

I fall into the gray area of being unofficially diagnosed. Not undiagnosed and not given a diagnosis that shows up in a medical record. I will not pursue anything official because of time and money and the possibility of being (mis?)diagnosed with something else like schizophrenia. Some of my close relatives are/were diagnosed schizophrenics and mild schizophrenia and mild autism are easily mistaken for each other as they have a lot of the same negative symptoms. However, I have had difficulties that are specific to AS and not schizophrenia, and I lack certain traits that are specific to schizophrenia.

I have met schizophrenic people outside my family and I have picked up on how they quickly recognize other people who are a little bit different. They sometimes approach me but we both always end up realizing that I'm not different in quite the same way in which they are different.

When I was growing up, if you had autism, you didn't speak. That certainly wasn't me. And Aspergers wasn't heard of. Well, Hans Asperger heard of it, of course, but it wasn't a diagnosis.

And there were complicating factors which obscured my realising there was something else different about me. I was born with crossed eyes and poor vision (I only got a reliable diagnosis, ocular albinism, last year) and my vision set me apart. I was registered as legally blind in third grade. I was also labeled a "genius" - I was reading Reader's Digest by the time I went into first grade... And my parents - and thus, my upbringing - were distinctly odd.

So for years, I assumed those factors were enough to explain my odd traits. Sometimes I had to stretch points very far to figure out how they were explained, but I just assumed it was how I was. When my son was diagnosed with ADHD, my initial reaction was to object to the way the psychologist chose to define what was "inappropriate" to pay attention to. After all, anything might spark a story idea... Finally, I figured out I probably had ADHD, too. Then, I really figured I knew all the reasons I was so odd.

But I still wrestled with a lot of things. And when I ended up doing a bit of research for someone, hunting down links to blogs about autism / Aspergers for them, I had this odd feeling that Aspergers described me very well. But I also know it is common to read about symptoms and think they apply to you, so I brushed it away. I did find the topic interesting, though, and read more about it. It didn't take me too long to work out that a friend - one of the very few people in the world who actually made sense to me - was a classic aspie.

Things stayed there for a couple of years, but I kept struggling with things everyone else thought should be easy. And I kept trying to figure myself out. Finally, in September of 2010, I sat down and read all the diagnostic criteria, and wrote my own thoughts on how they applied to me. The result was enough to convince me that I probably did have Aspergers, so I came here and started talking to people. And I found out people here actually make sense to me, for the most part. I even found a post from someone else who shared the one quirk I thought was most unique about me. And many of the traits I didn't think I had at first, after thought, turned out to be things I'd given an odd "twist" to.

I would be interested in a diagnosis - but when I was in second grade, I had a very bad experience with a school counselor, and I have other, later reasons for thinking the professionals don't know everything (from what I've read on here, which agrees with my own thoughts and observations, they look at the outside, and have no idea what goes on inside our minds) - so I'd want to talk to someone I specifically chose and could trust. Which would mean paying for it out of pocket, which I can't afford.

And it would be more something to point to if others doubted me. For myself, I know what I am. This is the first group of people who actually make sense to me. Until now, only cats have really made sense to me (I like other animals, too, but don't have the same connection with dogs). If a hundred different shrinks all told me I didn't have AS, that would just prove to me that those hundred shrinks didn't know as much as they thought they did.

I've thought about things I've read about AS in the psychological literature that didn't make sense to me - I formed my own opinion of what was going on, and when I asked about them here, the others here, including many who do have a formal diagnosis, independently came up with the same basic answers I'd figured out. Coming to the realisation I had AS allowed me to come to terms with aspects of myself I've never even allowed myself to think much about, because I just thought they meant I was crazy. So a formal diagnosis would make no difference at all to my own understanding of myself.

For myself, some things I've read over the years would strike a chord within, and this was cumulative.

And I've been married for 9 years now, and this has helped me see this in a lot clearer terms.

The posters here in various ways has helped me define what the clinical features of this are as applicable in everyday life.

A family member once wrote me via email that she thought I had "it."

But I don't think I would or could get a diagnoses unless I had a nervous breakdown, as it all would crescendo here given the right( or wrong) conditions.

I believe my functioning level would fall into the Broad Autism Phenotypes, but given stressful conditions; some strange neurological symptoms do appear( I've posted them here), and everyone( who's close) has noticed the change.

To me, bonafide BAP'ers don't slip into these regions^, though , but I could be wrong; IDK.

I'm almost sure a brain image would confirm my suspicion that I'm not neurologically mainstream, though it appears so most of the time.

Last edited by Mdyar on 06 Jan 2011, 12:35 am, edited 1 time in total.

I have been referred to psychologists about 2 times and my parents have been suggested to take me into shrink because of my cold loner behavior. Also one of doctor told my parents that I am a very cold person. I do not want a diagnose since it'll affect my career and the fact that I can actually conceal myself if the environment permits it like one that is very silent. A lot of my behavior development has been from the very fact that I am not made to go through forced social interaction and I certainly do not enjoy being pressured to do so. While I know I have a lot of problems myself, I think it's better for me to try to resolve the issue by myself without any pestering since that how I get better, but I don't have much time to resolve the issue. So far, I'm just holding the stress as there's not much to do.

ive seen my doctor, and apparently you cant get a diagnosis through the NHS. stupid. i know. if i was still at school i would pay to go private, but right now i dont think i will. i know i have it, and a few close friends and family members too. my friends mum first noticed it when i was 4 i think, she was a special needs teacher at my school, but nothing was ever done about it. i only heard about this when i was at college, and when i looked into it, i was amazed. i can read any page on aspergers and it exactly describes my personality! it may or my not have helped being diagnosed earlier on. its hard to say. i think probobly it would. but im quite happy being "self-diagnosed" for the time being, because it means i can choose to keep it to myself if ever i feel the need. if i was diagnosed officially i would feel compelled to tell people, for instance, employers, and i would be constantly worried that this would effect their view of me.