2 (and something) months out

[Guest Vapourware]

It's been two (and a bit) months since I officially received the badge of recognition.

I haven't really been able to talk too many people about it since receiving the ASD label - I've only managed to see my therapist once and since she's in the midst of phasing out her private practice, I don't know how much opportunity I would have in talking to her about the sensation of having the formal label. My pdoc doesn't do talk therapy; he concentrates on medication. Then again, he is a doctor so that's what I would expect from him.

I guess my question is - how did you respond in the initial period after you received the formal diagnosis? What made it easier?

At the moment, I can't help but put myself under the microscope regarding my behaviours and the like. I keep wondering if my ASD is showing, or if I'm being overtly different to my peers. Sometimes I feel really conscious that I might be "odd", whereas I didn't feel it as keenly in the past.

Conversely, I keep wondering if I actually do have ASD - which is strange considering the period before I received the formal dx, I felt that I was probably somewhere on the spectrum. For instance, it seems like the majority of people on the spectrum are introverted in some way and are happy to be their own company. On the other hand, while I'm not totally extroverted, I really do like the company of other people and I don't like not having social interaction. If someone threw an invitation for a party in my direction, I'll jump at it.

I know that some aspies are "active but odd" - perhaps that's me?

[Emettman]

" how did you respond in the initial period after you received the formal diagnosis? What made it easier?"

It actually gave me something to fasten on to, something to understand and work with, seen against many years of depression that neither I nor therapists had been able to get to the root of or alleviate.

But this is a guy who, years before diagnosis, when told by an angry female that I had no human relationship skills went and bought a book with that very title.

For the ASD, in my case it was "The Complete Guide to Asperger's Syndrome" by Tony Attwood.

Massive, readable, in places hilarious... but most of all it presented information, scenarios and strategies in language that made sense to me.

It helped me identify my strengths, to exploit them; my difficulties and blind-spots (never easy, trying to see your own blind-spots: they're your blind-spots.) to support them them or work around them.

It also both highlighted and illustrated the issues on being different and on conformity,

on adapting to society and on being true to oneself.

If I am not "most people", why should I necessarily be interested in, or do, what most people do?

(Or prefer other people to do, so they don't have to worry about handling difference and diversity!)

Choices and ways of thinking I'd not worked through half as clearly on my own.

Over all the diagnosis, digested via thinking and reading, gave me a range of new items for my mental tool-kit.

But if one thing is true of all people with ASD, it's that we vary.

"I keep wondering if my ASD is showing, or if I'm being overtly different to my peers."

Is that banned in your society? Sometimes it can feel like it, I know.

I tend to operate with:

"Mankind are a herd of knaves and fools. It is necessary to join the crowd, or get out of their way, in order not to be trampled to death by them."

William Hazlitt.

Pointing, I take it, to a mixed strategy of social camouflage and finding one's own preferred niches away from the mainstream mob's idea of "right" or "fun", whatever the latter might think of such, (If they think much at all.)

Chris.

[Cerberus]

At the moment, I can't help but put myself under the microscope regarding my behaviours and the like. I keep wondering if my ASD is showing

Better to have you ASD showing than your underwear. Depending on the circumstances.

or if I'm being overtly different to my peers. Sometimes I feel really conscious that I might be "odd", whereas I didn't feel it as keenly in the past.

I was very surprised how sharply aware I became of my Asperger traits, or at least of how keenly I associated my previously unlabeled personality quirks with my new diagnosis. Everything I did seemed to get weighed against the new scale, I think because before the dx they seemed like things I ought to be able to change but had never figured out how, and after the dx they seemed like things I couldn't change no matter how much I might want to. In a way it felt like a prisoner becoming accustomed to a new cell.

Conversely, I keep wondering if I actually do have ASD - which is strange considering the period before I received the formal dx, I felt that I was probably somewhere on the spectrum.

Vape, you have a dx from a professional. You're on the Spectrum, sheila.

For instance, it seems like the majority of people on the spectrum are introverted in some way and are happy to be their own company. On the other hand, while I'm not totally extroverted, I really do like the company of other people and I don't like not having social interaction. If someone threw an invitation for a party in my direction, I'll jump at it.

I know that some aspies are "active but odd" - perhaps that's me?

it's called a "spectrum" for a good reason - people occupy it in all kinds of ways. You're fortunate, it seems, that even though you might have some characteristics that place you on the spectrum, you may not suffer quite as much debilitating social dysfunction as some who have less ability to relate to others. I'm not a social person as a rule, and I have learned my limitations when it comes to interfacing with humanity at large (a hard lesson, I'm sorry to say), but I'm grateful to have been able to adapt well enough to function in society when I need to. The one thing about the dx that has hit me hardest, I think, is that I'm now far less hopeful about a relationship - I never considered myself as having much hope before, but now I feel like I'm genetically predisposed to be alone. But that's probably just me being hyper-self-crytical...

Since first dx I've gradually found it necessary to let go a bit with the diagnosis and remind myself that I spent the great majority of my life so far as exactly the same person without the label, and I'm no different now. The label doesn't necessarily mean that all my beliefs about myself before were wrong, and if some of them were self-affirming, maybe they're worth hanging onto. Keep it in perspective, and don't let it weigh you down. You are far, far more than your diagnosis.

Cerberus

[renaeden]

I was 27 when diagnosed and I am 34 now. I was diagnosed after a hospital stay and therapy where they couldn't figure out what my issues were and so I was referred to someone who specialises in ASDs. I honestly thought I was wasting the doctor's time, never thought I would get a diagnosis.

It took a while to sink in and then I got depressed about it (and other stuff) and hospitalised again. So that isn't a good example of someone dealing with their diagnosis, sorry. I guess I just wanted to be like everyone else and had trouble accepting that that wouldn't happen. I also realised many stuff-ups in my past were due to my autism-influenced actions.

I go to a autism support group now and I can tell you, there are a number of extroverted aspies there. There are some that do like a party. I am the introverted type though, very much so. But I can talk in front of others easily enough.

Right now I am dealing with the whole "Oh crap, what am I going to do with my psych degree once I am finished because I don't deal with people too well and it SHOWS." thing. So autism is very much on my mind at the moment.

On other forums I have been on, some people have said that they felt and acted more autistic straight after their diagnosis because it was on their mind all the time. I am not surprised at that. Also, some doubted their diagnosis or thought they weren't autistic enough for a diagnosis. I was one that didn't want the diagnosis but talking to my mum about how I was while growing up confirmed the diagnosis for me. Both she and I knew practically nothing about autism before I was diagnosed.

So I think you are going to go through periods of doubt and periods of feeling really autistic and that is normal when newly diagnosed. It is a big thing to get used to. I do think that it is a shame you don't have regular tdoc appointments because they can be helpful when newly diagnosed, to help you get your head around it all. From what I can tell, you are handling it a lot more maturely than I did.

[Guest Vapourware]

Thanks everyone, it's nice to hear that other people can relate. I actually feel a bit lonely because IRL I don't interact with anyone on the spectrum. So I guess another issue for me is that I can't really gauge how I am in comparison to others also on the spectrum. I would like to go to something like an autism support group, I think that would be interesting for me at the very least, but I don't know where I would find one in my area.

I do have a copy of Tony Attwood's book, but I guess when I first started reading it, I was somewhat still very much confused about whether I was on the spectrum or not, so a lot of what he wrote didn't quite sink in. Once I'm home, I'm going to start re-reading it. I agree, it is a great book and one of the best books out there for people on the spectrum.

I'm relieved that I'm not the only one who felt a bit more...well, autistic? in the initial period after the dx. There are a lot of times when I do feel more autistic than what I was before I received the formal badge. It's true about being given a new scale to compare myself, and I think that is contributing a lot to how I currently view myself.

I guess on the one hand, yes I am a bit more fortunate than others on the spectrum. I think my ASD is pretty well-masked. On the other hand, that can also cause difficulties because I, superficially, appear just like most other non-autistics and therefore people tend to attribute some of my more autistic-like behaviours to negative character flaws, rather than me being wired differently. Which can cause me some frustration, especially when people start reacting negatively towards me and I have really have no idea why.

Intellectually, I tell myself that yes, I've been professionally diagnosed and yes, I had a long preparatory period before the official confirmation. My tdoc raised the concept of ASD to me all the way back in 2009, so I guess I'm still confused as to why I am now doubting my belonging on the spectrum. I mean, I did get the badge after all, so oughtn't I feel a sense of relief and validation? Instead, I feel like it cannot quite be. Sometimes I wonder if my recollection of my behaviours were faulty, or if my family's recollection of my behaviour was faulty, or if I exaggerated. It's a very odd sensation.

I did train to be a social worker at one point, and while there were a lot of factors involved in my ultimate parting with the course, one of them was ASD. So, I guess the matter of me having ASD and what I would do with myself career-wise in the future is also weighing heavily on my mind.

[Emettman]

" I actually feel a bit lonely because IRL I don't interact with anyone on the spectrum."

I think that was my first real clue, when the possibility was suggested. I went looking for information, and on forums inhabited by such folk I almost experienced a "coming home": a sense of familiarity which was most strange, given that to me the stance of "observant outsider" was much more the norm.

"I would like to go to something like an autism support group,"

They vary, as we do

Tony Attwoods pages have some possible links (you live in a big country.)

http://www.tonyattwood.com.au/index.php?option=com_content&view=section&id=17&Itemid=219

On the other hand, given your extensive experience with ASD (whether you knew it or not), there might be support groups for children or teenagers on the spectrum that would be delighted to have you as a volunteer. (I've learned a heck of a lot that way while also, I hope, being useful...)

I keep saying we vary, but we do. However, if that were to be a hit with you, a career somewhere there could be calling.

Awareness, training, support...

" I think my ASD is pretty well-masked. On the other hand, that can also cause difficulties because I, superficially, appear just like most other non-autistics..."

I know this one. Sometimes our social rules derived by observation and thought are just that little bit off, or our responses are a little slow, which gives them an "artificial" feel to others. In one way they are somewhat synthetic, but not for the negative motives that tend to be assumed.

On the other hand we may with great effort perform flawlessly, in which case we get no credit for that (as others do the same with little or no effort) and no-one twigs why we might have "had enough" a lot sooner than others.

"Nobody realises that some people expend tremendous energy merely to be normal" Albert Camus.

Chris.

[Saeihr]

To add a possibly different perspective, I was diagnosed young, around 12. And I'd been diagnosed ADD at 5, so I always had the understanding I was different. The addition of Aspergers on top of, or instead of, ADD didn't really faze me too much.

As I grew into my teens my Mum, quite regularly, offered to give me books and other information on the condition, but I refused to read them. I felt incredibly unsettled to read 'about me' in some book. (Oddly enough, I get even more unsettled when reading about Bipolar (my most recent dx))

There were times, my Mum tells me, that I hated being autistic, hated not fitting in, hated being different.

I eventually to came an understanding of the condition that fit with my world view. Unfortunately it was a bit of a "reductionist" (as my pdoc said today) view. I assigned/blamed/reduced everything to autism. If I did the slightest thing that didn't fit with expectations it was because I was autistic.

This is a very dangerous view of myself as it clouded the very real issue of gender identity that I was also grappling with at the time.

Later in my 20s I did a lot of research into autism by way of transgender issues. I knew I had those issues and decided to to research into them, but also knew I was autistic so I use autism as a filter, and ended up learning a lot more about autism than trans issues. I joined a few forums, and came to a greater understanding of what autism actually is, and what isn't.

I know now how wrong I was in my teens, and that autism isn't as all-encompassing as I had thought it was. Not everything I do or am is due to autism. It coloured nearly every aspect of my development, like tinted glasses, a filter through which I experienced the world, I now tend to see my autism as a foundation, or "base programming" to put it into a computer analogy as I am often wont to do.

[Cerberus]

My tdoc once raised the question of trying to find a support group for Aspies, and my first reaction was to look at him incredulously and say (roughly), "Are you mad? I can imagine no worse torment than sitting in a circle with a dozen people just like me (as though any such number could be found) with the same tenuous grasp of emotions and body language, and trying to kumbaya. Plus, if some of these fellow-Aspies had the traditional tendency to wax on about a favorite topic of interest - say, the aerodynamics of the rhinoceros beetle, or the orbital eccentricities of certain high-mass Kuiper Belt objects, or the genealogy (God help us) of Robert the Bruce, and if most of us were quite, quite convinced that we were correct most of the time, the encounter could get very tedious, indeed."

He never mentioned it again.

Cerberus

[Emettman]

"... the encounter could get very tedious, indeed."

Oh yes. I have popped my head round the door at a couple, observed, and quietly backed away.

But a different one, not dire at all. Quite the reverse. And not a Kumbaya in sight (or within earshot.)

I fully agree that little is more boring than someone's special interest that you don't share!

This does open another option, *if* more social contact is desired: leave the ASD aside and look for a local group or society that matches a hobby or interest. A point of commonality and a shared topic of conversation is pretty much assured.

This can admittedly be more difficult if years of ASD-ness have created a highly polished set of solitary pursuits.

Chris.

[Saeihr]

While in person encounter can be as tedious and annoying as Cerberus describes, I've found forums a great way of meeting like-minded people, without the downsides of being like-minded being so prevalent.

Often those in person are lower functioning than those on forums. I've found the higher functioning an autistic is the less likely they are to bludgeon you with their special interest or make awkward at attempts at futile social gestures.

Apparently I'm the highest functioning autistic ever (or so I was told).

[Guest Vapourware]

Yes, I think being bludgeoned by another person's special interest is a danger when meeting a fellow ASDer...but I guess I would like to see how others with ASD are, so that I would, at the least, can gauge how I am in comparison to others.

Apologies, I probably didn't make this clear - I'm not lonely per se, I do have friends and a partner, but what I meant was that I feel lonely in the sense that while my friends and partner are very understanding of me [they know I have Asperger's and frankly don't give a shit], because they are not autistic, they don't quite understand. I can tell them about my experiences and while they try to relate, it's hard for them because ultimately, we're in different worlds. I would like to meet people who have had similar experiences to me.

Heh, I wonder where I would stand functioning-wise. According to a lot of my friends, when I told them I had Asperger's, they were quite surprised because I didn't seem at all "autistic" to them, whatever that is supposed to mean.

[Saeihr]

There is an autistic guy I sometimes hang out with to go see nerd films with and almost all he ever talks about is Doctor Who, and whilst I'm ok with that (because I like Doctor Who too) it does get quite annoying sometimes.

[Saeihr]

Also; you're welcome to meet up with me from time to time, I may not be as autistic as I used to be, but I'm still 'in that world' as it were.

[Cerberus]

There is an autistic guy I sometimes hang out with to go see nerd films with and almost all he ever talks about is Doctor Who, and whilst I'm ok with that (because I like Doctor Who too) it does get quite annoying sometimes.

I resemble that remark...

...but maybe worse; I have a full-size TARDIS console in my living room. With a working time rotor.

No -- Really.

Cerberus

[Saeihr]

There is an autistic guy I sometimes hang out with to go see nerd films with and almost all he ever talks about is Doctor Who, and whilst I'm ok with that (because I like Doctor Who too) it does get quite annoying sometimes.

I resemble that remark...

...but maybe worse; I have a full-size TARDIS console in my living room. With a working time rotor.

No -- Really.

Cerberus

Can I visit?

[Guest Vapourware]

@Sae: Sure, we'll tee a time and place sometime. I'm pretty free at the moment and I have a car, so me getting around is not a problem.

RE: Dr Who. While I admit to not being well-versed at all in the show, I did almost buy a full-sized Dalek cardboard cutout. The only thing that stopped me was realising that I wouldn't have a place to put it. However, I would love a photo of the TARDIS, C.

[Cetkat]

I have a full-size TARDIS console in my living room. With a working time rotor.

I don't even watch the show, yet I consider that AWESOME!

I did almost buy a full-sized Dalek cardboard cutout. The only thing that stopped me was realising that I wouldn't have a place to put it. However, I would love a photo of the TARDIS, C.

Have you ever seen a working Dalek? Now those are sweet!

[Guest Vapourware]

I could also do with a K9: http://www.amazon.co.uk/Doctor-Who-Radio-Control-10/dp/B000GD18ZW/ref=sr_1_4?s=kids&ie=UTF8&qid=1318857613&sr=1-4

[Cetkat]

I could also do with a K9: http://www.amazon.co...18857613&sr=1-4

*Nod* That's cool, I didn't know they produced them. The one's I've seen have been homemade.

[Guest Vapourware]

OT, but I just love how a thread about autism evolves into a discussion on Dr Who.