"You would be wrong to accept this diagnosis"

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This thought is stuck in my head and keeps on going round and round, over and over again. I can’t get it out and I don’t know how to fight it. It comes from something someone said to me; someone I was fairly close to and trusted for a long while. I’m not going to post the exact wording because it’s too personal, but the title of the thread is the essence of it.

I was diagnosed six years ago, but spent much of that time not accepting it with phases in-between of knowing really that it was true. Recently I’ve been realising more and more that mild autism does describe aspects of my life pretty well, it explains many of my difficulties and…I think it would be of benefit to accept the diagnosis. In some ways I act like I have but this person’s words won’t leave me.

My ASD is mild, mixed in with unrelated quirks and I’m not “typical” of one with autism. So I’ve been able to pass for non-autistic with close online friends – I was just depressed, extremely introverted, a unique kind of person with an interesting personality, etc. etc. anything but the “a” word until people realise I have some issues which aren’t going to go away with the snap of one’s fingers and then they want little to do with me. So I established this entire identity that was absolutely not autistic and of course I couldn’t keep up those pretences going into the real world – but I’ll admit being that person felt really good to me.

And I keep remembering this person’s words over and over and over and over again. It’d be wrong. I’d be making excuses. I’d be giving myself reasons not to reach my full potential. It would be unwise. It would be bad. It would be hiding behind a label. It’d be understandable because “everyone wants an excuse” but it would also be pathetic. I should somehow refuse to be autistic. I should be just like everyone else. I should sell my soul to learning to socialise. Until I feel like I’m going half-insane trying to work out what is even “right.” Until I start questioning what right and wrong are anyway. Until it feels like the world is a minefield of “bad” decisions and the slightest wrong thing will set me on the path to being ripped apart and sent to some kind of hell (figurative or literal) and accepting this diagnosis could be that. These words are tying my mind up into an erratic and impossible knot.

Accepting the diagnosis would be beneficial but because of what people have said and because of how my emotions are tied up with those words it also feels like a kind of death. What a mess.

*

If someone can offer any insights, or advice, or can relate similar experiences, or anything, it would be appreciated. Otherwise thanks for letting me vent, sorry if this is not the appropriate place but I’m not sure where else to go.

A close acquaintance of mine said something similar when I was entertaining the prospect of having borderline personality disorder. "Don't label yourself," he told me - which I still find to be a bit stupid. Self-fulfilling prophecies cut both ways: the faster you run, the sooner it will catch up to you.

I've not gone for a formal diagnosis. It's something that I'll try for eventually - Soon™ - but increasingly I've found myself embittered by the thought that people didn't understand me specifically because I have some form of autism, and not because I haven't made the effort to try. (Both are true.) This is all conjecture - only two people know, to some extent, of my ASD, and they are hardly what you would call neurotypical - but it's a little dangerous, because I am all too aware of how easy it would be to hide behind a label. On some days it's even tempting. Blame the brain! Flip everybody off, because you're just that special of a snowflake! It's simple, it's fast, it's effective!

But: everything in moderation. There's a fine balance to maintain between an oddly-wired mind and established habit. What I've personally been striving for is to acknowledge that both are true - I am a little off in the head, and I do happen to be a hardcore hermit whenever I feel I can get away with it. I can (sort of) change one, but not necessarily the other; at that point, it's up to everybody else to meet me halfway. I've gotten comfortable with the prospect, although I've yet to reinforce it in my daily routine.

Personally, I would take the diagnosis. It's a kind of closure, a conclusion, and that in itself offers relief. Whether or not your friend agrees with that is up to him; the question is, how far along halfway will you go?

(Or don't. I may be talking gibberish - it's six in the morning and I'm completely sleep-deprived, man.)

For some, diagnosis brings closure. But, for others, it is actually "reboot."

As in the movies, where they give a new interpretation to something that has already been done.

For instance, you may not enjoy going to a state fair to eat--too much sensory overload, even though you love the food. Now that you have a diagnosis, you now know why you don't enjoy that experience.

Staying home because of sensory overload even when you want to eat out is defeatist.

You don't have to do that--you could go out early in the evening, when restaurants first open. And, more often than not, you will get good service because it is very profitable to serve customers that show up then--during busy times you can't handle any more customers...

Diagnosis is not infallible. We don't know the misdiagnosis rates, but if they match other areas of medical practice, then it is likely to be a considerable percentage.

What do you want really? To be confirmed as on the spectrum? Or to investigate whether a mistake has been made?
Or something else?

Making a decision and acting on it is perhaps the best way to stop the repetitive thought that you mention in your title. When you are in a thought maze like that, decision and action is the way out of it. No-one here can really tell you whether the original diagnosis was right or wrong. If the person who said this was generally reliable and trustworthy in his/her perceptions about most things, then maybe you could further discuss with them reasons for doubt.

Going by some of my own experiences with things that people I trust have said, I would caution you that even the wisest, most trusted friend you have can sometimes give advice that is way, way off, even with the best will in the world.

The reason is because, everyone is human, and everyone kind of has their own agenda, their own world view, their own beliefs and biases.

So that even a person you deem to be very smart, very wise, and very often right about things, with good judgement and good logic, can steer you wrong even though they of course don't intend that. But they may be coming from a place that happens to be more in their own head and their own set of biases rather than be truly thinking of what's appropriate for you.

If you have come to a level of being comfortable with your diagnosis, and have come to believe that it does fit, you must put out of your mind the fact that this friend is basically saying "No, it doesn't fit and you shouldn't think it fits."

As good a friend as this might be, he or she is not inside your head, they don't live your life, and they are also not qualified in the way that the professional who gave you your diagnosis is.

So it's just an opinion of theirs, based on myriad personal biases, possible misinformation, and other agendas that person may not even realize they hold.

A friend of mine, before I got my diagnosis and was only contemplating it, kept saying "No you're not" and literally, physically laughing in my face. The day I told him I received my paperwork following my eval, he completely changed his tune, and has never tried to deny it again. But even if he had, I know that he doesn't know ME well enough to make that judgement call, let alone the fact that he doesn't know the autism spectrum well enough either.

This next bit I'll tell you is not related to autism at all, but about a decision/course of action I took a few years ago that would be life-changing. Three different friends urged me to do what I was thinking of doing. Each of these friends happen to be extremely wise people whose opinions I respected and looked up to. None were frivolous people and all were wise in my opinion.

But I didn't think about what I really, really wanted. I got caught up in my own curiosity and excitement about this decision, as well as their confidence in this being the most optimal thing to do.

It turned out REALLY badly. I mean catastrophically bad. Well, that was only my own fault -- don't get me wrong. It was on my head alone, because I was the one who ultimately decided. It's not my friends' fault just because they all urged me along that pathway.

It's only my fault, nobody else's. BUT, looking back on the nature of each person who wanted me to do what I did, I realize now that each one of them actually had a glaring agenda based on deeply personal-to-them biases. Each one of them had in common a particular -- and mistaken! -- belief system regarding the specific thing I had to make a decision about.

Thus their views and their advice arising from those views, were clouded and not actually good and clear and sober viewpoints.

I knew I had been unwise, but I was fascinated to learn that even another person I thought much wiser than I am, was also capable of not seeing an issue clearly, and of steering me wrong in advice they were giving me or an opinion they held.

Again, still ultimately my decision thus my mistake, but I tell you about this other thing to illustrate that even if there is someone you know whom you think is an amazing person, wise and astute, and whose point of view you would take onboard and trust to the ends of the earth -- beware, because they're also just human, and human beings can often find it very difficult not to allow some personal bias, or wrongheaded positioning peculiar to them, affect how they see a situation.

Your friend might be a person you trust to see things clearly, but just try to keep in mind that even the wisest person can see things skewed, thus you should never take it on as "gospel."

Also, friends and loved ones, family or even an acquaintance with sufficient emotional investment in you, can take an autism diagnosis quite hard, and want to will you into "not" being autistic. Even if you're waving the wad of papers at them. There can be a lot of denial because the person who cares about you thinks it's a bad or a difficult thing and they want for this not to be who you are.

Take what that person said with a large grain of salt, and hold onto what YOU feel comfortable accepting about yourself.

Last edited by BirdInFlight on 18 Mar 2015, 6:48 pm, edited 1 time in total.

Sino – it’s not gibberish; it made sense to me, so thank you for your reply. Funny that you mention bpd, because in the end the person who told me I shouldn’t accept the asd diagnosis suggested that I might have bpd. Ironically. Everyone else in my life disagrees, and that and other things indicate that I made a mistake in trusting his judgement.

I don’t honestly want to hide behind the label but I’m afraid of starting to do it, or that I’m already doing it without even realising.

I mostly have taken the diagnosis, but have a tendency to doubt and doubt endlessly wherever I can.


BTDT – interesting interpretation; thank you for sharing it.


B19 – I’m not really looking for a particular outcome. Or rather, I guess what I want is to know what is true. I most likely am on the spectrum. Almost everyone who has known me for an extended amount of time thinks it to be true, and my difficulties/differences are hard to explain in any other way. I suppose I made this thread fairly vague and should perhaps be clearer. My problem is with, although generally accepting being on the spectrum now, having insane amounts of doubt about whether I’m doing or thinking the wrong thing, or somehow even making the whole thing up, and so on.

It was just one person who said this, really. I placed a lot of trust in this person but am no longer in contact with him, so can’t discuss reasons. Probably I was foolish to trust his perceptions so much but I still can’t get the thoughts out of my head.

Having said all of that, I hope to discuss the diagnosis with another professional sometime. I doubt they’d remove it – more likely they would remove some of the doubt, heh. I agree that action is the way out, but I’m still having trouble working out and deciding what to do. Thank you for your reply.

BirdInFlight, thank you so much for this, and your entire post – I think this was just the perspective I needed. It seems I fell into the trap of trusting this person almost blindly. This is no longer entirely the case, but apparently some part of me still holds onto it and won't quite fully trust myself or family who in truth have far better information both about autism and about my own experience. It helps to contemplate some of the things you've said.