Adult diagnosis, labels and fears

I think Robert Pirsig has a point. When I’m at my autism group, I feel completely normal! I also feel more at home when I live in Bali 

Indecisive said:

Just think how social norms change from culture to culture

Have you read anything by Robert Pirsig? At one point he wonders whether a cure for insanity is to transport the individual to a place/culture where he is considered normal...

I like the way you consider things Indecisive, I find it helpful. Just one thing I picked up on, was when you say nt's also try hard to be 'normal'. I would disagree with that. I think they try hard and work hard in life to build a stable and prosperous life etc, but that they are already 'normal', in that they already have the shared connection with other people which is referred to as nt which autistic people don't share. And I do think aspies are special

You are a true Stoic. Now that's a nice label, if such a thing exists...

One of my rules for living is to never look back for regret, only for learning. What's done is done, and what matters is what you can get out of it. This whole post is just me doing some mental gymnastics to accommodate the idea that I might be on the spectrum with the other parts of my life. If you feel that label is limiting you, don't use it, but be honest with yourself and accept your limitations whatever they are and whatever you call them.

Above all, be kind to yourself. You are not to blame for your nature (NT or not), but you are responsible for how you deal with it.

Well done for giving her the lift Tom. I said no to my neighbour the other day, she wanted a lift into town and I knew I wouldn't be able to handle the traffic and it wasn't an urgent situation, so I said no, and walked into my house. Previously, I would have given myself hell for that, but I knew I couldn't do it, so I didn't stress. But you know what, like you, if I had been put in that kind of a spot, I would most likely have done the same thing. I think sometimes, with us, it's more than people pleasing. It's more like, most people aren't as generous and giving as we are, they have all their rules etc but we just like to help. The thing is, we're learning that we need to take care of us too. I hope the rest of your evening went well and you were able to unwind from it all. I've realised that one of the reasons I have to keep a certain distance from people is because I can't comfortably manage all the unexpected things of other people or their lack of personal responsibility, which I used to take on as if it were mine! You did a good thing. I bet your cat (sorry, forgot her name) was pleased to see you when you got home. Can't wait to get my little kitty. 

This post makes me wish I could undo my diagnosis.

I also do believe it's polite when somebody assumes 'there's nothing wrong with you'... to agree with that... even if different doesn't mean the same as wrong...

Thank you everyone for your responses. It's been quite an intense weekend, and thanks to your responses I had some more material to think about it and come to a conclusion. I will not seek diagnosis, for now. I still have that option, there is nothing serious that needs to be addressed or that would immediately improve with a diagnosis. I lived up to this point without that label, and I haven't felt any different or badly impaired in any way. That said, I will keep in mind everything I've learned, I will read more about ASD and stay involved, and I will consider that what I read can be applied to myself. In a way, I'm identifying as an aspie, but by doing it in this way I can do with that label anything I want.

After the last couple of weeks pondering this, the responses I got here, and the one conversation I had with a close friend, I was having a bad time coping with all this information. On Friday, I was playing board games with some friends and I started seeing everything through the Aperger's lens. A simple thing that I've done before and enjoyed, became quite unpleasant. I was second-guessing myself, feeling like an outsider. Everything I did or said that would have been "normal" before, started to look weird. It took me a while to snap out of it, and couldn't feel at ease the whole night. I'm an introvert, with some mild degree of social anxiety, but this time it was a whole new level.

This got me thinking about Asperger's and what I understood about it. I know that aspies have difficulties with social interaction, that they engage in repetitive behaviours and many other things like not being able to look people in the eye or having problems processing sensory data. I knew a lot about the traits but not what's causing them, and that was giving me the feeling that my mind is playing tricks on me. I got into questioning things like "is what I just said normal, or is it just my mind making me think it's normal?". I felt completely delusional, I was losing my mind, and that was really, really bad. Luckily, I noticed this and was able to stop it before it unravelled. I sat down and decided to take action. If my mind was playing tricks on me, how is it doing it? This can be quite mind-bending (pun intended) as it is my mind that has to understand how it is tricking me, but let's not go there.

I started looking into the causes of Asperger's, and couldn't find anything relevant. In terms of how Asperger's happens, it's mostly genetic and environmental, but it's not dependent on education (you cannot be taught to be Asperger's and events in your life will not turn you into an aspie). The biological explanations are quite inconclusive as well, just that the size of the amygdala and cerebellum seem to be smaller than in NT. But there is no agreement, yet, on this or how this difference in size can produce the behaviours associated with Asperger's and other ASD.

So we are left with a condition (Asperger's, I cannot say for ASD in general) that has some behaviours associated with it that have no clear biological foundation. Most of this condition is based on the social dimension of a person, whether the person's interaction with others or how they fit in society. This is not like being deaf, or being unable move your legs, but about a part of human life that everyone has to learn their own way.

At this point, I felt relieved. It was not my mind playing tricks on me, it was not a physical or biological limitation, but more like a set of traits that are considered to be pathological (side note: I found a really interesting article and book about this that I will share on another thread). I might be wrong about this, but I couldn't find anything linking Asperger's to a physical or biological issue. Even if there were, the limitation would be affecting a part of reality that is not objective, something that we made up ourselves. Just think how social norms change from culture to culture, how it is ok to eat dogs in East Asia and how horrible just the thought of it is for us.

This doesn't mean it's all ok with us, but it makes it a problem we can deal with. I always believed that everyone sees the world in their own way, not only in terms of having their own opinions and values, but also having their own processing mechanisms. Some people are highly sensitive to other people's feelings, and so they become altruistic. Some others don't care what others feel and become egotistic. I guess this is why people started using "neurotypical" instead of "normal", but even "neurotypical" sounds unfair to me for both sides: It puts a label on aspies as "special" and it downplays the efforts of neurotypicals to become "normal".

So, in conclusion, I might be an aspie but I don't feel disabled. Before even considering this label for myself, I always assumed everyone has difficulties with life and that "normal" is just an illusion everyone is trying to achieve. Having that label at this point is not going to be helpful for me, and I would prefer to deal with my specific problems individually instead of clumping them together. I'd rather say "I'm not a good salesman because I'm not good at persuasion" than saying "I will never be a good salesman because I'm on the spectrum". For the first problem I can find a solution or work on it, even if I never end up fixing it; the second one seems impossible to overcome, you can never stop being an aspie or being less of an aspie. This doesn't mean that the label is not useful, and in many cases it is needed, but I learned to cope with my limitations without the label and adding it would not improve anything, or it would even make things worse for me.

Thanks for your response, Tom. I'm all too familiar with over-analysis, it sometimes pays off, but it can be quite annoying when you are just blocked because you cannot make a decision. Lately, my block has been deciding what to do with all this new information about myself. In general, I don't think it's been too bad for me, but there have been plenty of times when I just decided by not deciding. And saying "no" can be quite hard, so well done!

Thank you for your response. For the past few days I was feeling exactly as you say. I was playing boardgames with some friends, we do it from time to time so it wasn't something out of the ordinary and we've known each other for a year or two. This time, though, I had the label floating around my head so I started looking at everything I did and say through that lens. It was terrible. I was constantly second guessing myself, feeling like an outsider, micro-analysing everything and not being able to just "be" there.

My friends were the same, the activity was nothing unusual, but just having that thought on my mind turned everything from an evening out, relaxing with some friends, to just feeling inadequate and out of place.

With this, all I want to say is that sometimes it's not society looking down on us but our own perception of ourselves that put us down. Don't beat yourself up, learn to have compassion for yourself, and don't worry about what others might think of you.

Thank you for your response, RSxo. I will write a longer response to the thread below, addressing many of this things, but I wanted to say that my problem was mostly understanding what all this is all about. We all carry many labels with us throughout our lives, but not all labels are the same. Some are heavier than others, and when all the conversation about ASD and Asperger's is about how it is a disability and how people on the spectrum have the inability to understand the world around them, I think this is one of the heavy labels. In the last couple of days I had some time to ponder all I've learned with all the responses here, and now I see things a bit differently. I'll go in more detail below.

I'm sorry you are feeling that way. This is exactly how I'm feeling about this. Before I even considered being on the spectrum, I always saw aspies as highly intelligent, a league of their own, true genius. But once I started looking into it, trying to learn about it and see if I belonged in that category, I started seeing disability everywhere. That's what scares me the most, it's not seen as a trait but as a disability. I do understand that Asperger's and autism have different degrees, that's why it's a spectrum, and I do agree that at certain degree it is a disability, but I wouldn't say that all aspies are disabled, specially when many people in society value very highly the analytical skills that come with the syndrome.

You are different, but so is everyone else. You have some bad traits, but you also have good ones (and some great ones). Independently of the label you want to use, learn to leverage the good ones and minimise the bad ones. This is something everyone, on the spectrum or not, has to do. And above everything, be compassionate with yourself. No one will ever be perfect.

Thank you again, BlueRay. This was also quite helpful. As you say, I have a choice. At the moment, if I go for the diagnosis it's for self-improvement, not for necessity. Whether I'm on the spectrum or not, I don't feel it has a strong impact in my life at the moment, other than adding a couple of bumps on my path. I need to learn more about what it all means before I can make a decision, and at the moment there is no pressure to make a decision.

Thank you, MDC. This comment was really helpful. Pointing out that I have a choice made me realize that this is not something I need, but more something that I would like (as much as someone wants to be diagnosed). Whether I'm on the spectrum or not, it's not impairing me, so getting that label applied to me is more of a matter if I need it or not.

About your job, I'm also a software developer and I've been doing this for a long time. I really think that if you are doing a good job where you are, they have no reason to put you somewhere else. It doesn't matter that the social convention says that autistic people have to be testers, no company will move you from where you are performing well.

Thank you! I was considering calling, but I think I need to sort this out in my head first before getting professional help. Also, I have troubles speaking on the phone and by email is quite impersonal. It would help having an online chat or even a videocall service for this type of service as I'm sure I'm not the only one around that has some trouble speaking on the phone.

Thanks for your response, and I really hope you are doing better with the antidepressants. I'm going to write a longer post below as a response to the whole thread, the past few days I have reflected on this a bit and I'm in a different state of mind now, but I think my main problem was not understanding what a diagnosis (mine or a doctor's) would mean. I hear a lot the things that aspies can and cannot do, but not why they do it, why they cannot overcome it and how it is different from others. It's not the same saying, for example, "you are an introvert and you will prefer quiet places to parties" to say "you are on the spectrum and will never understand social life". It was that second sentence that threw me spinning for the past few weeks. I'll elaborate on this below.

Yeah... having said that, though, I found myself getting caught out the other night after work.  As I was walking to my car, a younger colleague (who buses in) ran up and said 'Are you in a hurry to get home?'  I mean, what a question to ask!  Who isn't in a hurry to get home after work?  'Yes,' I said.... and then 'Why do you ask?'  She then told me that her grandfather was in the local hospital and he'd called her to ask if she could go up and see him.  She could have walked there easily through the back streets.  No more than 20 minutes.  But I knew she'd been stalked for a little while by her ex, and didn't like the thought of her wandering those streets after dark.  So... I was in a spot.  I'd have felt mean saying 'Sorry, I can't give you a lift.'  But I felt miffed at being, as I saw it, blackmailed morally.  I ummed and ahhed for a moment.  I knew it would make me at least 20 minutes late getting home because it would mean heading into difficult traffic, so I then had to mentally reschedule my evening.  She started to walk away, saying 'Don't worry.  It's fine.'  At which point, I told her it was alright.  But it threw me out, and I was agitated as we were driving.  She knows I'm autistic, and she said to me 'Is it an autistic thing?'  I then explained how it wasn't so simple for me - being a little late home.  I said, too, that I struggled with having a short-term change of plan - and her asking me for a lift in the way she did had put me on the spot.  Finally, of course, it was that people-pleaser thing again.

If she asks me again on the spot like that - and she does it with other staff, too (when I first started there, one of her first questions to me was 'Which way do you drive home?) - then I'll say 'No'.

Well done for learning to say no Tom. I only realised recently how difficult it is for me to say no, but I'm learning to say no. I've also got this well rehearsed automatic habit of wanting to still kind of please people. Fortunately that's also getting less. I know what you mean about the decision making getting easier as well. Since my diagnosis that has improved for me as well. It's still all relatively new for me as well but even on the dark days, I'm still so glad I got the diagnosis. It's almost like I've been given permission to be me. 

Hi Indecisive,

Great name!  It described me for much of my life.  I've always had trouble with decisions - especially really important ones.  An Aspie trait is over-analysis.  Going over and over and over details until my mind is boggled.  People say to me 'Just do a 'pros' and 'cons' list'... but it really isn't that simple.  How do you 'weight' pros and cons?  When is a con a pro in disguise? 

Anyway... that's beside the point.  I could say loads, but the others have already said many things I agree with.  So, briefly... I was finally diagnosed two-and-a-half years ago, at the age of 56.  It was one of the best things I ever did.  I don't regret it for one moment.  And it's made me feel so much better about my life.  My mental health has improved.  And so, would you believe, has my decision-making.  I feel that I can now make more informed decisions about what's best for me.

Labels?  They don't bother me.  If other people want to apply them - that's their problem.  They can think what they like.  They can think of it in terms of limitations.  I, though, now think of it in terms of opportunities.

And I'm no longer afraid to say 'no' to others for fear of being thought selfish, difficult, obstinate or lazy.  Again... they can think what they like.  I do what's right for me, now!

Good luck with whatever you decide.

Tom

Hi I feel everything you are describing I was recently diagnosed with asperges and I am 24. For me the diagnosis helped to clarify some of my behaviour but since the diagnosis I have struggled to accept it almost. With a label comes automatic limitations maybe not for us personally but definitely in society you are automatically labelled as having a disability/learning difficulty and it is a fact that you will get treated differently. That being said like you said you have lived this long without the diagnosis and autism or no autism you are still you and you can still live life the way that suits you! And also the diagnostic tests are long and also are the assessments so be prepared if you do want to explore the diagnosis route

Take care