To diagnose or not to diagnose?

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I only discovered I might be an Aspie a week ago when I took the online tests. They're mostly kind of borderline Aspie/neurotypical but above the threshold at which they recommend evaluation. These Aspie Quiz results give the general picture:

Your neurodiverse (Aspie) score: 103 of 200
Your neurotypical (non-autistic) score: 115 of 200
You seem to have both neurodiverse and neurotypical traits



So now I'm wondering whether to proceed with a formal diagnosis (I've already broached the subject with my psychologist, but she's not a specialist in ASD). I know at this point that I'm either broader autism phenotype or Aspie and given my RAADS-R score and history (wouldn't talk for three years as a kid etc.) I think there's a good chance I'll be diagnosed as the latter. And my question is whether I should seek diagnosis, and if I do and it's positive, whether I should tell people.

Part of me is practically in tears thinking that if I could explain to people why I'm the way I am they'd cut me some slack. Part of me is thinking that I've read some pretty discouraging stories here about what happens when people tell others they're Aspies. And I'm also concerned about work. As an engineer, I can get away with a certain amount of geeky social cluelessness. But I can imagine applying for a position and the company being told I'm an Aspie and not wanting to hire me.

So what do you think? Should I seek an official diagnosis (no benefit for me unless maybe some more insurance coverage -- but OTOH I'm being eaten up wondering)? Should I go through life as the really interesting but he sure is strange guy (a description that got back to me) or let people know?

If you think you may have autism, then you should consider getting a real diagnosis from an appropriately-trained and licensed mental-health professional.

I would just let it ride.

Thanks, guys. Two conflicting opinions so far. So I guess I have good reason to be conflicted myself! Still interested in everybody's opinions.

There are several things to consider.

But first of all, if you do get diagnosed you are not obligated to tell anyone so if you are trying to get another job you don't have to tell them if you think that that might affect your chances of getting hired. If you are doing ok at the job you are in now you don't have to tell them either. I also chose to put my diagnostic report in my records with two of my doctors but only two. They are the ones who deal with all my Special Olympics medical paper work so they need to have it. But you don't even have to put your diagnostic report in your medical records if you don't want to so no one has to know at all if you don't choose to disclose it. And as an engineer, I think you will be able to work whether you disclose it or not.

Second, you have to see if you insurance will cover an adult diagnosis. Ours did not. I was able to get a free one from OVR because I was unemployed. But if you are employed OVR will not do it for you. An adult diagnosis in the US can cost thousands of dollars so you have to decide if the cost is worth it to you if your insurance will not help with it.

Personally, I would say that if your life is not really impaired and you only have some quirks and are just feeling a little weird, then I might not bother with the official diagnosis. I really debated over it for a long time because I have lived this long without it and it is so darned expensive and there are no real benefits or resources to help Autistic adults in this country. Because of my job issues, I could possibly get disability but even that turned into a nightmare when I tried and I just gave up because it was not worth it to even try to get it. But you are successfully working so you would not need it. But other than that they only thing I have found to help me as an Autistic Adult is Special Olympics. And the only reason that I ended up opting to try to get a formal diagnosis was so that no one could tell me that I am not allowed to be a Special Olympics athlete. But other than that I have not found a single resource that is helpful to a high functioning Autistic adult.

Now on the other hand, I did find validation. I did find great peace of mind finally having an official document to explain my struggles. Those things are priceless. Even though I was 99% sure that I was on the Spectrum for almost two years before I got the diagnosis, having it took away that 1% of uncertainty and that has made all the difference in my life. It has not changed my life in the sense that my struggles are the same as they always have been and now I even have some new struggles from some people's reactions and responses when I tell them I am Autistic. But I find that having the diagnosis is worth those new struggles because it makes me feel like I am a real person rather than just being a freak. When I was a young teen, I honestly did not think I was actually human because no one else could understand or relate to my struggles with Autism and Misophonia. But now that I know that I have legitimate issues and they are documented, it makes me feel like a real person and I know that there are thousands of others like me. Before I knew I literally thought I was the only one. And to me those kinds of things are very important and make the official diagnosis worth it. But if I had had to pay out of pocket, I would have had no way to get one.

So really only you can make the decision. You have to ask yourself if you are ok understanding yourself and living with yourself with your quirks even if you are not 100% sure. And some people still question even after they are diagnosed and every now and again you find an idiot doctor who will completely misdiagnose. So if you do go for it, do your research and find someone very competent in working with adults.

But if you find that your struggles are really affecting your life or if you really need or want validation or some kind of closure, I guess that might be a good word, than I would say definitely look into getting one. At our age, we won't get the kind of help kids do so you have to decide based on your personal needs and not on what benefits might be available to help you if you are on the Spectrum.

I also carry an Autism card in my wallet but I had to make it myself. You can't get one in the US only in the UK. When I have gone to the hospital or been in these kinds of situations, I just tell them I am Autistic and they try to accommodate me. But even without a formal diagnosis you can still tell them if you are sensitive to sounds and lights and so on. They should still accommodate you anyway.

I agree and have found that to be my experience as well. Those who care about me and wish me well and want to help me have never asked for an official diagnosis to do so. Even before I had it they supported me anyway. Those who do not and just want to give me grief give me grief even with having an official diagnosis. It does not matter to them one way or the other.

Now for some legal matters you might need one for stuff but for just how people treat you in life, they will treat you one way or the other because of who they are as people and because of their own convictions on how to treat people, not because you have the document or not.

Thanks, Jo, that really helps put things in perspective.

I know exactly what you mean about feeling defective and broken. I tell myself that at this point, a diagnosis would make no practical difference -- I'm either Broad Autism Phenotype or ASD, and the first is just a milder, sub-clinical version of the second. But the truth is when I think of an ASD diagnosis I get teary. I know it's irrational but for that reason I don't think I can let the question hang, I'm obsessing over it and not doing anything else.

It hadn't occurred to me that organizations like the Armed Forces won't take Aspies, though in retrospect, it makes sense -- I doubt I'd do very well with a drill sergeant, LOL. Again, that helps to put the seriousness of the diagnosis in perspective. I'm too old for the military, but it could certainly be an issue with other jobs, particularly since it's very hard for me to keep things to myself, I have no guile and the truth just comes out and gets me into trouble.

Even with my friends and family -- part of me is almost in tears thinking now maybe they'll understand why I'm the way I am, but part of me knows that I'll lose status. My adult symptoms are subtle enough that people just think I'm flaky. Forex, I have meltdowns, but I read the description of the meltdowns that other guys here have and mine are more controllable than many in that I can restrain them and then have them when I'm alone, or I just go mute or become catatonic. And if I come downstairs in the morning and can't force myself to say "Hi," as I usually can't, people just assume it's because I'm shy. I think the little boy who wouldn't even talk until he was three would have been diagnosed immediately if they'd known then what we know now, but as a well-compensated adult with borderline symptoms, not even the psychologists caught it (though two have told me that they thought there was "something else" going on when I described my early behavior).

Get a diagnosis. It brings peace of mind to yourself and truly confirms that there is a tangible difference between you and others.

I understand why you feel defective and broken. But I think that you should try to work with dealing with those feelings. We can try to help you here. Many of us have felt that way. Whether you get a diagnosis or not might not help you with that and you really need to reconcile with that. Once you can feel good about who you are, you can then revisit the diagnosis issue from a healthier perspective. We are not trained here to be therapists so you might want to see if you can get a trained person to help you but that is something that I think you really need to resolve. You might be able to do that by just talking here. I would try that first.

I will share this with you. I mentioned it in my post above. When I was a kid I did not even know I was a human being because of my issues with Autism and Misophonia. It was defective and broken on steroids. I literally just assumed I was some kind of alien. There were times when it was very depressing and sometimes I still feel that way. I go through bouts of deep depression every couple of months at least. And I have had regular suicidal thoughts since I was ten. Those things are just a regular part of my daily life and I accept them as my normal so it does not "bother" me to have them. Not to say that they are not a bother, but I mean that I just know that they are coming and always have so I know to just ride them out and then I am fine.

I think the thing that really helped me was to understand that I am who I am and that is whom I am meant to be and there is nothing that is going to change that. Yeah, some people take meds for symptoms and I do see a psychologist regularly and we just talk and that helps and I feel that that is all I want as far as help anyway. I like that fact that I can be real and honest with myself about who I am. I don't think Autism is a bad thing, I think that the challenges are really difficult but only because they are created by other people.

For example, if people did not blast their stereos to high heaven, I would not struggle with that. If we just took the time to speak slowly and listen intently to each other, most of the communication issues I have would not matter because people I talk to would take the time to understand me and I would take the time to understand them. It is only because people are in such a rush to say what they want to say that we don't have the ability to understand each other. So what that understanding does is to show me that I am not the problem. Being different is just that, it's different. It's not bad, it's not good, it's not defective, it's not broken. If I were to move to Siberia today, I would have very much trouble communicating and understanding cultural norms. But that would not make me defective or broken, or a bad person, just different. I would need help to get around and to do things. If you can see Autism more in that light, you might be able to change the way you feel about yourself and that will really help.

And a diagnosis will only legally and medically identify what you already have and have always had since birth. It won't change you in anyway at all. Well, it might give you a sense of validation which would be a good thing. But you really need to see that you are not broken or defective. You only feel that way because other people have convinced you that you need to be treated badly. But that is not true at all.

Hi,

I can really identify with the things you’re saying, and I’m currently seeking a diagnosis myself.

I too recognise that in some respects it makes no difference. I am who I am and have to accept myself as I am regardless of what names I do or don’t put to it. But then I’d like to understand myself better, and by doing that understand others better; understand how we’re different in the way we think and act.

All my life I’ve given myself a hard time for what seems to be a set of inadequacies. Without a name for them I can slip into thinking I’m a special case and that’s bad for me. I’m better off belonging.

Whatever the diagnosis for me I think it’s important to remember we’re all unique and all have our own attributes as well as flaws. We all have much to offer. And what other people think? I do care but I needn’t. In reality I’m not significant enough in most people’s lives for them to give me much thought anyway lol

I wish you well

Thanks, Skibum. That's also very helpful.

I'm thinking based in part on what you said that I wouldn't tell employers. At my level paperwork is just a formality so the real risk for me would be that someone in my rather tight industry would tell someone else and that it would get around. That's really an argument against telling anyone since friends talk, and some of my friends are in my line of work.

Ditto doctors. They don't have to know since my main impairments are social and it's hard enough to get them to take you seriously as it is. Though I'd be very tempted to take a card to the hospital to get them to do something about the noise!

Unfortunately, the impairment to my life has been dramatic, so this isn't just a matter of a few quirks. I'm in intensive therapy now in a last-ditch attempt to overcome these issues and one of the things that is making this hard for me is the prospect that there really is no fix, that what I thought was due to having a mother who couldn't express emotion and being molested, bullied, and the like is just the way I am. And I was afraid not only that I wouldn't be able to change but that therapists would give up on me. But my psychologist told me that she would not and I take strength from the fact that the therapy *has* been working for me, just much more slowly than it should. So that for example I've almost lost my fear of intimate physical contact such as being hugged, which as you can imagine is a real impediment to intimacy. And as my understanding grows I'm coming to understand that my issues are some combination not just of my own Broad Autism Phenotype or spectrum characteristics, but of similar issues in my mother and other family members as well. So I think I'm dealing both with neurotic symptoms from the flaws in my upbringing and my own autism. And I think that both can be improved, particularly since there never was an autism diagnosis so I never received the special coaching and education and self knowledge that would have helped me interact with NT's.

Merely knowing that I may be autistic helps me modify my behavior, as in being less likely to justify it to myself (oh, I was just being honest and factual, why did he get so upset?) and instead telling myself that *I* misread the situation and have to keep my mouth shut. It also tells me that maybe there's stuff I shouldn't be expending effort on, that I didn't cry when my grandmother died because that's the way I am and nothing is ever going to change that.

Finally, what you say about validation, and your own experiences as a teenager, means a lot and rings true. I came to this by meeting a kid on another forum who reminded me so much of myself at his age. I just love this kid and when he told me he was an Aspie, I started reading up on it. When I look back everything suddenly makes sense, why I was so far ahead of the other kids intellectually but so far behind socially and emotionally, why I was so vulnerable to bulling and such a social outcast. How I was always off in my own world, physically present but at the same time not there. Why I have hyperfocus and obsess over things and get stuck on them -- why it's so painful to change course once I start doing something. Even why I can't wear polyester shirts. It's all a bit overwhelming.

I can relate to you Percy. Once I got the diagnosis I was 100% sure. I was 99% sure for the two years before once I did the extensive research I had done after being told initially. I was told by a friend who is very knowledgeable, that is how I found out. I had pretty much no knowledge at all about Autism or Asperger's before that since I grew up at a time when it was not commonly known at all. But once I got the official dx, it was like that extra 1% gave me permission to really be sure and have no doubt at all. It felt like a huge weight was lifted off of me and I could not only accept myself even more but also advocate for myself much more aggressively. That made a huge difference in my life. My self esteem also took a rise because now I had a real and legitimate and documented official name to put on my issues. That was HUGE. I did not become more or less of an Autistic person than I have always been, I just knew for sure that my struggles were real and legitimate. I had been called a hypochondriac many times because no one could understand my issues. Now I know that that is not the case. And now I can treat myself better and protect myself because I can understand and respect my limitations.

Before I would believe what people would tell me that I was just being dramatic or a brat or making things up or stupid or immature and childish or oversensitive so I would try to push myself beyond my capabilities to not be the things they were telling me I was. Now I know how my brain actually works so I can dismiss all that crap from other people and actually treat myself the way I need to treat myself to be able to handle daily life.

When I was first told and did the research and understood who I was, I started to treat myself better and advocate for myself a little, but that one percent of uncertainty always nagged me and I thought, what if they are still right and I am not really Autistic even though the evidence for Autism was so overwhelming it was ridiculous. In fact, the person who first told me said he could tell from the very first moment he met me the first time and the doctor who diagnosed me said the same thing. He even said it was so obvious that he really did not even need to bother with the testing. But he did, all 8 hours of it, all in one day! So now I know for absolute sure. But that piece of paper gave me that little extra umph to really push me over and allow me to really begin to stand up for myself and to treat myself as an Autistic person instead of as a person with a bunch of issues that I don't even know for sure are real. And that changed my life.