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Written by JourneyMouse   
Apr 16, 2010 at 11:09 PM

I was diagnosed with Asperger's Syndrome (UK National Autistic Society's explanation here: [External Link]) in March 2010. I actually put myself forward for diagnosis based on a "suspicion", for want of a better word, that I've had for a number of years. The link I've given above will take you to a page with a number of symptoms on and for sake of ease, I'll outline my own symptoms in the same order. This may help explain why I went for the diagnosis and what AS means to me.

I'd like to point out that I'm a very mild case - having gone through 30 years without being diagnosed and all - and the issue is probably more my awareness of them than the symptoms themselves. A lot of my problems with this seemed to work themselves out around the same time I started writing this time around (March 2007 ish) but in noticing things that I never noticed before I, of course, realised that I hadn't noticed them before and that had been a problem. Or maybe ignorance (and not being aware) is bliss.

Similarly, showing any one of these symptoms - or even several of them - doesn't necessarily mean a person has AS. If in doubt, talk to a professional. The link given above for the NAS should help you if you decide to look into this.

Social Communication

Difficulty understanding gestures, facial expressions or tone of voice

This is the main problem that caused me to go for the diagnosis. I have difficulty recognising the more subtle facial expressions and vocal tones - and by extension their meaning - but have gradually been playing catch-up. It comes as a bit of a shock each time I have an "Oh, so that's what that look means" moment. The first (that I remember) hit me in a work-related meeting at about aged 24. Not a good time. Before then, I hadn't even realised I hadn't known what that expression meant. I am, however, still learning and still find fictional people (screen and text) easier to understand because actions, expressions and tones are more exaggerated. I can usually figure out the things I miss later but this is no good for instant communication, one of the reasons I prefer communicating through the written word.

By extension, having only been able to recognise exaggerated emotions, most of my emotional responses are exaggerated, too. So I may not be as excited / happy / upset / whatever as I appear, it's just that I'm showing it the only way I can.

Being watched and looked at makes me nervous and I have difficulty making eye-contact. I've had to work at showing a close approximation, bearing in mind that not making eye contact is a Bad Thing.

Difficulty knowing when to start or end a conversation and choosing topics to talk about

As I have often said: I'm not proud, I'll talk to anybody. But I tend to talk about what's in my head at that moment in time, regardless of how weird, random or inappropriate the subject matter might seem to the person I'm talking to. I'll start off fairly "normal" with the usual hellos and pleasantries and what happens after depends on how talkative the person I'm with is - and what's in my head. If I'm stressed about something, be prepared for a one track conversation. I'm fairly reactive by nature on this front, too, so if you don't talk to me or try to involve me, I won't bother. I have difficulty with conversation drift and like to go back to earlier subject matter to "finish off" my thoughts and if you ask me a question I give truthful answers. Sometimes much too bluntly and to very bad effect (see comment about work-related meeting).

Very literal in what they say and can have difficulty understanding jokes, metaphor and sarcasm

Thankfully, I'm not prone to taking everything literally. I've learnt that there are sayings and phrases (some of which give me some very funny mental imagery) that are used regularly, that are just figures of speech. But I can be gullible to things I haven't heard before or if I'm not thinking properly. In other words, how readily I can recognise someone else's humour, exaggeration or verbal attack depends very much on the delivery and my state of mind. And to cap all this confusion off, sometimes I recognise that it's supposed to be a joke or an insult or a wind-up and I don't care. If it's not funny or interesting to me, I prefer to ignore it. So what if you think I have no sense of humour?

As a kid, I have no doubt I used words and phrases in the wrong way but I now recognise that it's a silly thing to do and tend not to use (or try not to) words I don't understand these days. This does nto stop me remembering them wrong or saying them wrong.

Social Interaction

Struggle to make and maintain friendships

I have no problem dealing with people when I meet them. Or I think I don't. You may want to do a spot survey of all the people I talk to in a day and ask them. Anyway, my main interaction bug-bear is knowing when people have gone from acquaintances (people you know casually) to friends (when you get to invite them round for a cup of tea or out for a drink, you know?). And once I've worked it out, working at staying in touch bearing in mind I don't expect anyone else to be interested in the minutae of my life - leaving me with nothing to tell you if I get up the guts to ring you and brave verbal communication. This has been compounded by the fact that I have had a rather high number of address changes since leaving home for university in 1998. Facebook [External Link] has been fantastic for at least letting the people I've left behind know I'm still alive!

Not understand the unwritten 'social rules' that most of us pick up without thinking

This, as you can tell, links in with my acquaintances to friends comment above. Yeah, I feel like you all got the manual and I didn't. I'm not sure how many people have read said manual but you always seem to know the rules better than I do.

Find other people unpredictable and confusing

This is more to do with the lack of being able to "read" people, I suspect, meaning that the idea of the personality behind the face is difficult to grasp. I have had and continue to have some problems but if I have the chance to think about it, I can usually work out motivation and such without any problems. Years of watching and reading, perhaps, as these things are again exaggerated in fiction. It's one of the bits I have dffiuclty with in writing - though hopefully not so much that it damages my ability to entertain the reader.

I can't answer for whether I ever seem aloof and withdrawn or my behaviour is inappropriate (it's depend on who you ask, I bet), so next topic:

Social Imagination

Difficulty imagining alternative outcomes to situations and finding it hard to predict what will happen next

An odd thing for a writer to agree with, perhaps, but this is true for me. I am reactive by nature and tend not to be able to think of things unless they have happened to me or I have heard of them happening. In other words, I'm the kind of person whose response to the job interview standard "Have you any questions?" with blind panic. After all, everyone wants their employees to be pro-active and forward thinking. Or so they say. Similarly, I am content to sit and wait for other peope's fiction to unfold as it does. I will, after consideration, see opportunities missed or alternative actions but my imagination has difficulty doing that kind of exercise while the movie, book, whatever is still running. People who think like that readily and who force me think like that, like Dylan Fox [External Link], are amazing to me and great catalysts for me.

Difficulty understanding or interpreting other peoples thoughts, feelings or actions

Okay, you may notice what seems like repetition here. This issue is, to me, about recognising the individual brain behind the actions - and yes, I've had difficulty with that, much like a child doesn't seem to think that anyone else thinks or shouldn't do anything the child doesn't want to, only into a later stage. Compare this to the similar communication issue - Difficulty understanding gestures, facial expressions or tone of voice. In the communication issue, I have difficulty reading people's emotions. I miss the "subtext". So, you have someone blind to motivation (as I have been but not quite so bad these days) and blind to subtext so then you get the related interaction issue - Find other people unpredictable and confusing. Which is one very good reason for developing social anxiety and avoiding people!

The descriptions of play as included on the NAS' Asperger's play are more childhood related and I don't remember things like that particularly well, so next topic:

Other related characteristics

Love of Routine

Oddly enough, not so much (Big Sister, stop rolling your eyes). I like to stick to the plan if we have one and can get pretty stompy and sulky if we don't - hence Sam probably rolling her eyes at this one - but I prefer not to have to plan or think. I get prganised for my employers and for Finn and not much else. Because I am also lazy. So also no danger of me developing OCD as some as people do!

What probably relates here is my lack of flexibility in mind-set. I can be accepting of certain things, attitudes and behaviour in others because I know you can't tell control them - something learnt when people started being unpredictable (see above), probably, although I don't remember the process. On the other hand, my behaviour is locked quite firmly into certain guidelines. I was raised to behave in a certain manner and I generally stick to the ideas of right and wrong that my parent's instilled (brainwashed? drilled? encouraged?) in me. Some things were obviously explained in very strong terms of being "Bad" or wrong - such as not making eye-contact (see above) and hiding your hands in your pockets (yes, really - and I do try to avoid doing it when I'm talking to people). There's some adaption for fitting in with other people - if only that I often wait and see what everyone else is doing first. Once I've worked out a route to get somewhere or process to achieve a given result, I also like to stick to that. This is not as obvious as what most people define as a love of routine (doing the same thing on the same days at the same time) because I'm committed to quite a wide range of activities and responsibilities and have to do things as I can rather than when I want to.

Sensory Difficulties

Here, life gets interesting. Is it possible to be sensitive but insensitive (outside of the emotions)? Hell yeah!

Sight - Okay, let's start with the base. I'm slightly long-sighted and have a stigmatism or whatever it's called when one needs prisms in one's glasses in order for one's eyes to focus on the same point. I don't wear my glasses very often, only when I've been staring at computer screens for too long. I'm fairly sensitive to glare and have very little night vision - and moth-like tendencies at night if I don't control myself. Like most people, vision is my primary sense for interacting but, possibly unlike them, it doesn't seem to be my primary sense for memory. Motion catches my brain's attention more than colour but bright lights are pretty (hence moth tendencies). None of which are particularly AS symptoms.

Sound - I have quite sensitive hearing and can hear (or feel in the back of my head) quite high pitched noises. Dog whistles make my ears ache although it's arguable that I actually hear them. Like everyone else, I feel deep notes through my bones. A lot of my memory and dreams are auditory. Sounds often have texture. Metal on metal and similarly coarse noises make my skin crawl. I will always notice a sound. I just may not respond to it. I can usually remember it clearly. Again, this much is not symptomatic of AS. More towards the AS scale is how easily I am distracted by background or white noise, such as computers, fridges, fans, etc - to the point where I can't take in other sounds such as music or conversation. I love music and when I find a song I like will happily put it on repeat for ten or more iterations straight through. I have been known to do the same with things that make sounds I like, such as hitting a hollow piece of wood (I often work outdoors and mainly alone, so this is something that's easy to get away with).

Smell - I'm not especially sensitive to smell. I have a tendency to assume that whatever I can smell is what's supposed to be there - unless told or trained otherwise. I'm not totally insensitive, I work around landfill sites and react to it the same as everyone else. But I probably wouldn't react to, say, the smell of a domestic gas leak if I hadn't already had it explained to me that this is a Bad Thing.

Taste - I can't cope with strong, spicy flavours. I have been and to a certain extent continue to be a faddy eater. I can eat whatever's put in front of me these days but generally chose only a narrow set of what I want left to my own devices. But most of my issues with foods come down to texture in the mouth as much as the flavour. Again, not necessarily AS behaviour although it does sit with the profile.

Touch - Or, more precisely, texture. It's the thing I have the love-hate relationship with. I love the smooth feel of worn cotton, of silk, of well sanded wood. You get the idea. Colours and patterns may draw my eye in the first place but it's texture that makes me want to have something. But nothing makes me uncomfortable like touching a rough surface. Although this is considered within the AS set of behaviours, it occurs outside of that as well. I also have issues with being touched, much like the Robert mentioned on the NAS page. I don't like it to the point of it making my skin crawl with the exception of those I love, trust and / or am attracted to. I have friends and such who insist on hugging me and I've learnt to accept it.


User Comments

Comment by on 2010-07-15 03:54:23
PS: the book written from an autistic's perspective you are hoping to find: 
Mark Haddon: "the curious incident of the dog in the night time" 
It's brilliant! 
PPS: have just realised my previous comment may have sounded like I was suggesting you had bipolar. I wasn't. I was suggesting we all share a common serotonin deficiency that can be treated with drugs. got it

Comment by on 2010-07-16 03:45:13
PPS: as well as treating your possible biochemical problem with a drug, did you know you could help your "inappropriate behaviours in the workplace" situation and your body language problems with "Assertiveness Training" classes? These should be available at your local adult education centre. 
I did these in my thirties when I was going through a similar process of revelation concerning my behavioural shortcomings... 
They really help, especially if you've had a psychiatric label dumped on you! 
 
Don't blame yourself for your shortcomings. I don't want to be rude about anyone, but...er...your childhood and teenage environment was hardly condusive to learning adult interactional skills, was it? Mine neither! 
Still, it's time to take responsibility now and to learn what you missed out on.  
Don't be afraid to grow up. Battle on. I'm with you all the way! 
 
Lots of love 
Di

Comment by on 2010-07-15 01:16:22
Hi Jo.  
It's your aunty Di here. 
I was very sad to hear about your having Asperger's. Having thought about it a lot, I feel you need to know the following: 
In 2005, after an lifetime of suffering 'severe agitated depression' I was finally correctly diagnosed by a French psychiatrist as having bipolar 2. 
The reason you need to know this is that the main symptoms of this (social phobia, anxiety, stroppy 'aloofness', obsessive thinking) are very similar to those you describe for Asperger's. The shrink put me on two drugs: paroxetine and depakote. The results have been astounding. I have friends! I can communicate! I can understand others! 
So, my advice to you would be to see a psychiatrist and tell him/her of your BIOCHEMICAL family history. Your paternal grandfather suffered from 'agitated depression' all his life and also had a psychotic breakdown. He got epilepsy in later life. Your uncle Alan (who had all the symptoms you describe and more) killed himself. Your aunty Mary has also been treated for depression. Your uncle David was on lithium the last I saw him. 
It seems to me that although your Mum was the only one in our generation not to suffer from anxiety/depression, she must have been a genetic 'carrier'. 
So, please, please face the facts and insist on a proper psychiatric diagnosis. I'm not at all suggesting you don't have 'Aspergers' but I do know that the 'catch-all' list of symptoms have a 'Barnum Effect' whereby we can all imagine we have the illness...In this way such societies get more members! 
Also, please don't be too hard on yourself and your 'symptoms'. We ALL find small talk difficult. We ALL say inappropriate things at times. We ALL find it almost impossible to understand other people. We ALL find inappropriate touch uncomfortable. What we all don't do is suffer from social phobia, anxiety, irritableness, and depression. If you suffer from these, you deserve to have them properly treated. 
Love Di

Comment by Dylan Fox on 2010-04-22 10:29:04
After diagnosing you, did the doctors offer any sort of advice/counselling? And how's the advice offered on the NAS's website?

Comment by JourneyMouse on 2010-04-22 11:04:13
When I asked for the diagnosis I was (eventually) referred to the Community Adult Autism Team, who sent an Asperger's nurse (lovely woman) around to meet me. It wasn't as formal as an interview but she was asking questions as part of my diagnosis. She then referred my case to the psychiatrist with a report based on her findings and some questionnaires. 
 
When the diagnosis came through, the Asperger's nurse revisited to offer the team's support and advice. (I've actually just had a further visit.) We have agreed that I seem to be handling everything fairly well and that I'm not in need of major support (i.e. not part of the regular case load). However, the team and I will be remaining in touch on the grounds that I may have AS-related issues or problems that they can help me with in future. 
 
They've put me in touch with other people who've been diagnosed as adults and that's a "let's see how it goes". 
 
As for NAS's web-site, the advice (as most sources apparently) is aimed at the parents of children being diagnosed. Some sites also make themselves accessable to the older children but there isn't that much advisory support for adults from what I've been told. There are online communities (which I'll be looking into) but these are not advisory so much as community orientated (and USA based).

Comment by ZG Martin on 2010-04-22 14:20:59
Plans are in the offing for a dedicated local/UK-based website/forum centred initially on the Doncaster area, with hopes for expansion outwards, maybe linking up with other areas. That way we can compare and contrast what different areas have to offer, and pool our resources into something resembling a reasonable resource for adults. It would also help with advocacy/agitation when autistic people need to pull together to achieve something (because we clearly cannot trust the local council to help.)  
 
The referral process is getting faster and more efficient as it goes on, with speeds measured in months rather than years, but the NHS side of things lacks serious funding or support from the NHS itself, and the council...just lack. A lot of G.P's simply are't up to speed about the team or even the process as a whole, which is something else we want to address.. awareness amongst the relevant services. We're also concerned with fostering a bit more inter-agency co-operation and understanding so that different bodies aren't pulling against each other. After that, who knows? Whatever people need, we're interested in working on. Was good to meet you today, and hopefully it will benefit us all. :)

Comment by JourneyMouse on 2010-05-07 12:12:07
Hi Dave! 
 
It doesn't bother me if you do discuss the diagnosis. And at the time, I was also unaware of it in that I wasn't sure and was too nervous to go and find out about it. Please email me and we can have a natter and a catch-up.

Comment by Dave C on 2010-05-07 12:07:53
JourneyMouse. It's been some time since we were last in touch. Having got to know you as one of my volunteers several years ago, I was totally unaware of your condition. Although we lost touch I do like to visit your website and enjoy your stories, and have listened to the podcast. I will not discuss your evident syndrome with anyone else we know, unless you say so. If there is anything useful I can do in support, please let me know.
Your Name / Email Address

Last Updated ( Jul 11, 2010 at 11:21 AM )