Undiagnosed Autism and Explaining to Others

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Hi,

I'm a relatively new poster here. I am 28 and live independently with my fiancée and our cats. I have no formal diagnoses of autism or AS. However, discussions with my fiancée and other people close to me over the past few years, along with a lot of research on autism, have led me to the conclusion that being somewhere on the autism spectrum is the most likely explanation for my quirks, differences, and many of the difficulties I have experienced.

As many people on this subforum I'm sure are aware, autism diagnosis was not really available at the time that I was growing up for people in my socioeconomic class. When I refused to socialize with the other children in Kindergarten, they just thought I was weird. When I refused to complete assignments in the first grade, instead opting to sit in the back of the room and write all day, they thought I was slow. When I aced the standardized tests at the end of that year, they did a one-eighty and decided I was some kind of genius. When I stopped going to school altogether, I was suddenly a criminal who was put through juvie and alternative school. That was when I was sent to a psychiatrist, who looked at my file from the school, asked me a few questions, then told me I was depressed, anxious and lacked empathy – like I was some kind of sociopath – before writing me a prescription for pills that I refused to take, causing further fallout with my family. Anyway, enough my sob story. The point is that I feel like a diagnosis back then would have made things very different, but it wasn't available.

As an adult, I am doing much better. I am attending university, have a 4.0 GPA and am close to publishing a pioneer paper in my field. As mentioned above, I'm engaged. There are plenty of problems in my life, but overall it is good. Learning about autism has helped me understand a lot of things – why I get so anxious, why certain sounds bother me so much, why I have trouble understanding people, why people have trouble understanding me, why my focused interests and attention to detail seem arbitrary and obsessive to others, why I lose things so often, why I can't seem to get the hang of driving a car, why I have trouble networking and making friends, the list goes on and on. These things seem almost normal to me now, but they still seem just as weird to everyone else. I feel like a diagnosis would offer me some way to explain these things to others, but diagnosis is still pretty well unavailable to someone in my position and area. Another part of me feels like diagnosis shouldn't be necessary, like I shouldn't need some doctor to tell me what I am or why I am. It's all very confusing.

So if you're still with me after that wall of text, here's my question. Is it okay to explain to others that I am somewhere on the autism spectrum without an official diagnosis? Is that gauche or inappropriate? Is it insensitive to people who do have a diagnosis? Is it dishonest? For the past year or two, I have felt like I know a big secret but can't tell anyone, and I'm terrible at keeping secrets.

Thanks for reading.

If I were you I wouldn't go saying you have ASD, but would say that you believe you may be somewhere on the spectrum.
If you feel diagnosis will help you, then go for it and get diagnosed, but I would say don't say you're definitely an aspie without a professional backing you up, and don't think just because you have many traits and haven't been diagnosed that you are on the spectrum.
Have you done any of the self tests on the various websites?
I'd done numerous tests, all of which stated I was 90 - 95% likely to be ASD before I sought a diagnosis.
Do you feel you need a diagnosis?
From what you describe you are relatively successful, and just have some awkwardness in social situations and difficulty adapting to driving a car and that sort of thing, if you can get by without that then fine, just go on without diagnosis.

I enrolled in numerous courses and was unable to excel academically as my brain doesn't work that way, and I get overstimulated in a classroom environment, so for me diagnosis was a way for me to claim back my dwindling sanity as I felt every effort to attain goals I set were beyond my grasp and I needed an explanation to find out why, and what I could do to change the game.

If you do feel the need to seek diagnosis, I would suggest you check at your university, they may have a psych department that can either help you get diagnosis and treatment, or put you in touch with someone that can help with that.
At the end of the day, diagnosis or not is a very personal dilemma, and only you can decide which way to go. If you do want to, I'd suggest sooner than later, getting a diagnosis whilst in a university environment, with all the support and help that goes with it would be a lot easier than later on when you will feel isolated, lonely and lost looking for help.

I'm 41, very recently diagnosed, and still coming to acceptance about it. I wish I knew sooner, as I would have done a lot of things very differently.

Hi Tukuturi.

I'm responding because I have a lot in common with you, including being part of a generation that simply didn't even diagnose this back in my childhood or even my young adulthood.

I'm in a similar position to yours, and your question about this could have been posted by me too, as I'm struggling with the same questions, arising out of the same years of wondering, years of research, and in my case years of denial, until recently I realized that it's probably more helpful to me to accept that I may be on the spectrum, than not. But now, what to tell and to whom, and am I a phony if I tell anything at all to anyone at all without an official diagnosis?

At the same time I fear obtaining a formal diagnosis because I fear the negative impact that may have on "official" stuff in my life, as I live a fully independent life (I've had to -- my family estranged me long ago) -- and have to worry how this could change things in official eyes, even my car insurance standing, for example.

Yet, like you, I think about how an official diagnosis would at least help me feel more legitimate in explaining to people in my life about the difficulties I have, when those difficulties arise in their company, that is...

Also like you, I struggle with whether or not saying I'm on the spectrum when I haven't actually had that confirmed by a medical professional is dishonest, direspectul -- all those things you mentioned.

It's even why I don't take part on this site much anymore. My membership is recent but I quickly felt like I shouldn't be here. Even though I know in my heart now, after years of looking into this, and also years of denial, that "the spectrum" is probably my reality. It makes me indescribably sad and alone, even while at the same time explaining one HELL of a lot, as you yourself can relate.

I've kind of decided on a half-assed option of explaining a symptom that's happening in the moment, rather than telling someone that I suspect strongly that I'm on the autism spectrum and thus this is why I'm having a meltdown/having some other difficulty.

For example, if one day I'm with a friend in a noisy environment and I start to lose my cool from the over-stimulation and sensory overload, instead of inform the friend that "I have Aspergers -- kinda sorta probably I don't actually know for sure", I'm going to just say I struggle with sensory overload problems and need to get to a quiet place.

This is just one example of a possible scenario, but what I'm trying to say is, if someone around me witnesses one of my "difficulties" and I want to try to explain what I'm going through, I'm planning to leave the spectrum out of the conversation altogether, and just talk about that one symptom in that one moment, on a case by case basis.

Then, I guess, if that person says "That sounds like someone I know who is on the autism spectrum," then I might consider conceding that, yes, in fact I am currently struggling with a strong suspicion that this is the case for me too but that I have not yet had the courage to pursue professional investigation at my ripe age. I'm scared of what a formal diagnosis might do to mess up my life.

Yet my life has already been messed up by NOT knowing why I've been through the hell I've been through, which could have helped both myself AND other people around me understand me better, instead of the rejection and hatred I've been subjected to.

One family member, many years ago, who was in training to be a clinical social worker and eventually became one, was the only person who I think knew all along, based on the last thing he said to me.

Anyway, that's another story.

I'm just posting to say that I'm in the same boat you're in at the moment, and so I'm thinking of just explaining the one trait or symptom that's happening in front of someone, rather than the whole kit'n'kaboodle.

Benh72, Seeking diagnosis is something I would like to do, but it is out of my reach. At my university, diagnosis is only available for children. I don't have insurance and can not afford to travel and see a specialist in another area. It just isn't an option, which I suppose is fine as it isn't like I'm going to die without one. I've done online tests with results similar to yours, but I don't think it's a good idea to base a diagnosis, even a self-diagnosis, on an online quiz. What is the difference between saying you're on the autism spectrum and saying you have an autistic spectrum disorder? Just the claim of it being a disorder? I guess to be clear, I don't want benefits or assistance or special treatment or anything, nor do I want an excuse for my shortcomings, I just want to be able to explain myself to others a little better. I don't believe that I have a disability per se, but I do know that my brain works differently than most.

BirdInFlight, it's good to know someone else is going through something very similar. I have also tried explaining things in terms of individual instances of behavior, though I think sometimes I end up confusing people more. Explaining to people that I can't drive is the worst. I have been working on it for a long time, but I still am not ready to safely drive in traffic. When I try and explain this to people, they often just think I'm lazy.

Then stop trying to explain. If they cared at all, they'd be more likely to offering you a ride than in criticizing you for not driving.

When people seem to judge me for not driving, I tend to say "I don't see well enough to drive" and they immediately back the heck off. (It probably helps that I wear glasses.)

I don't think it's like that at all. Driving is easy for a lot of people, and it is perfectly reasonable for them to expect it would be easy for me. It isn't a lack of caring but a lack of understanding, and the remedy to that is explanation.

With the driving issue, I think your mention of poor eyesight is a good "get-out clause" to shut up the people who press for a reason why. I think they're being a bit rude by not leaving it at your initial explanation, but if you have to use the eyesight thing it seems deserved by those who aren't satisfied with other more direct explanations.

I know what you mean about people needing explanations -- even if someone doesn't actually ask out loud for one, there are situations where I myself want to explain just in the hopes that things get clarified with that person, instead of getting left in a worse place than it needs to be.

I've been in a similar situation, but due to lack of cash, not lack of ability.

One of my former co-workers lived two doors down. He would complain whenever I'd be late (*&^%$#@ public transport), yet he never once offered a lift.

That's why I focus on their lack of concern, and not on your lack of ability - you can't help it, and they can.

Until there's an official diagnosis (and yes, I am a huge proponent of getting diagnosed officially), I wouldn't go around telling people you have anything. You want to know for certain before saying anything.

The thing is there is no certainty in a DSM diagnosis. Those diagnoses are based on statistically linked sets of symptomatic traits rather than the identification of the causal mechanisms of those traits. Without illuminating some sort of causal mechanism in a way that is verifiable via an objective experiment, a diagnosis is not a certainty but an official recognition of an arbitrary status. Case in point, when I was growing up, autism was not a category that existed within the system that I was a part of. With the recent changes to the DSM, the category of autism has been redefined. Some contemporary researches have gone so far as to question the usefulness of autism as a catchall category, moving instead toward the identification of more refined "autistic traits." The category is not hard and fast because it is not based on a static objective certainty but on the dynamic and subjective interpretation of necessarily incomplete statistical data and the necessity of categorization for the efficient dispersal of benefits.

I respect your stance on official diagnosis and I acknowledge that such diagnoses are a great help for those seeking limited resources for needed assistance, but I question the usefulness or even the validity (and certainly the certainty) of any such diagnosis for someone who is not seeking such assistance. One need only look at the contemporary perversion of Alfred Binet's IQ test – originally intended only to identify the severity of learning disabilities in children in order to efficiently allocate needed assistance – to see an historical example of this kind of categorization gone awry.

I am not seeking to be placed in a category in order to receive assistance. I do not believe that I have a disability. I take pride in being responsible for myself and not making excuses for my actions. What I am seeking is way to effectively explain apparent differences in my cognition, which do in some cases limit and other cases expand my abilities to accomplish certain tasks, to those who do not share those differences.

I suggest you take the Autism Quotient test to verify:
http://www.wired.com/wired/archive/9.12/aqtest.html

My high score encouraged me to get a formal diagnosis which has been priceless in terms of self-worth, knowing who I am and why I've been so different all my life.

As for disclosing your diagnosis, remember that most NTs don't really understand what AS means. I usually use the euphemism
"nerd" when discussing why I do things they consider atypical. I only tell close friends about Asperger's because they seem to be invested enough in the relationship to try to understand and accept this new frame of reference.

I think having an official diagnosis will give credibility to your explanation. I can see your point that even an official diagnosis may not be truly valid. But still if it's official it is something that can officially back up your explanation/claim. Without it, you might be seen as someone just making an excuse.

I'm in the same situation. I'm seeking a diagnosis. It's costly and looks like a long process. I got a referral from my GP. I will see how it will turn out.

I myself have a problem with driving and pretty much have given it up. Explaining why I don't drive is a real pain. Someone has even said I have a fear and am being emotional about driving etc because I couldn't say anything about autism etc. And of course some think I'm just lazy and not trying hard enough. People just don't understand why I cannot do something that everyone else seems to be able to do so easily.

Jumping in here to say if you're attending university, just go to the student dean and tell him/her that you are experiencing some learning difficulties (yes, even with a 4.0, I had that score and I have ADHD and ASD) and you'd like to go for neuropsychological testing. Your student insurance will cover it usually, it's under the psychological benefits. Just a thought, it worked for me. And it was free.

I took that AQ test and scored a 45, but I'm still skeptical of any such test. I realize Baron-Cohen has done a lot of good work, but he also has a lot of crackpot hypotheses that attempt to justify his cultural biases (empathizing-systematizing theory and "extreme male brain") so I'm naturally skeptical of his work as well. I just don't know.

If I decide to seek a diagnosis, I may try to go through my university as you suggest, kirayng. It is terrifying, but that is probably my best option if I want a diagnosis.

This is my first post on the boards here. I am 40 years old and realized that I am probably aspergers. After taking the online tests and reading a lot of articles and several books on the topic, I have finally found what has been "wrong" with me for my entire life. I have finally found a group of people that I can identify with. So many of the stories seem to be lifted directly from my own experiences.

However, the problem with getting a diagnosis is my job. I am a Director, Business Development, for a large energy company. Although the HIPPA laws state that my boss should never find out, there is one person (or group) at the company with access to all of the detailed health records. (This is done so that the company may properly allocate the insurance resources.) If this person or group ever revealed that I was diagnosed and/or being treated for aspergers, my career path would be over. This is especially true now that it is no longer Aspergers, but rather Autism. The energy industry is a very small community and I would have issues in the future.

My job is very technical, but at the same time has a good bit of social interaction. I have learned how to fake my way through the social interactions and find that I am a pretty good actor during them. However, they leave me exhausted and mentally drained. If my bosses ever understood that portion of my life, my career path would derail quickly.

Overall, I am trying to say that a diagnosis would probably help my mental status, but could be detrimental to my career. I am really not sure what to do.