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To think I might have Aspergers Syndrome? (warning, long)

(69 Posts)
PepsiBubbles Fri 18-Oct-13 21:54:56

I'm not sure if this probably should go in health, but I suppose this is as good a place as any.

I don't even know what I want to gain from posting this, defiantly not for a diagnosis. I guess I just want reassurance that I'm not crazy to consider the possibility that I might have it and maybe see if there's other people here who didn't get a diagnosis until later on in life.

For a few years now I've actually wondered whether I have Aspergers syndrome. I'm going to say something quite cliché here but I've always been aware that I'm 'different', even from a very young age, around 5 or so I was always very aware that I wasn't like other people my age. One of the main things is I've always struggled with social situations. I don't always know when it's my turn to speak and often get confused about what is considered acceptable or inappropriate when talking to people. There have been numerous instances where I've said something inappropriate and not realised that it is until somebody points it out to me. Because I don't always know what to say or what is always appropriate means I often just stay quiet. I've been labelled as being shy ever since I was young child which I've always just went along with but I think it's more than that. It's not that I'm shy, I just stay quiet because of the reasons I mentioned above. I'd rather stay quiet than say something completely inappropriate or offensive without realising it and upsetting someone.

General day to day social situations also confuse me so much. This is going to sound stupid but I just don't "get" general chit chat and have no idea how to engage in it. As a result of my social awkwardness I've found it hard to make and keep friends.

I like routine. I always plan things down to the last detail, even something as basic as going to the shop and whenever something happens that means my plan can't go ahead as normal, for example a bus being late or someone I'm supposed to be meeting being late, I get upset and panicked. I like everything done a specific way and pretty much have a basic routine I stick to on a day to day basis and if something disrupts this then like I said before I get really upset. Which is silly, I don't even know why I do.

Then there's the fact I get fixated on certain things. Ever since I was little, I've went through phases of being obsessed with a particular game/tv show/film/book to the point where I think about the subject I'm obsessed with at that time pretty much for a good portion of the day, every day. When I get fixated on the subject, I browse the web on the subject, desperate to find every little bit of information I can, want to talk about it constantly and read/watch/play whatever it is I'm fixated on every day. Then when one obsession ends, it is replaced by another.

Hopefully I'm not going on too much, but I've always also been very sensitive to sound and touch. Loud noises seem to grate right through me and I get annoyed by sounds that other people can't even seem to hear. I get the feeling sounds seem louder to me than other people. I also find it very hard to filter out background noise. If I need to concentrate I need complete silence. I also hate people touching me when I'm not expecting it or even when I am expecting it, I still don't like it. This is embarrassing but I've never actually had sex even though I'm 22blush. It's not that I don't want to but I hate the idea of someone being that physically close to me. Actually doing something that intimate with someone is just too much for me. Even kissing is often too much for me to handle and can make me panic.

When I first started to suspect I have AS I actually looked it up, thought it sounded a lot like me but there were certain things that didn't fit me and made me think that I couldn't possibly have it because of this or that or whatever. But then not long ago I came across an article about females with the disorder and it made me do a double take.

It was this article I came across originally

I've since did more research on females with it and it seems to describe me down to a t. When I originally looked up the disorder, I didn't realise that females often present different symptoms to males and what I originally read up on it was probably based more around males with the disorder which is why I thought that it sounded a bit like me but not completely and why some things sounded off.

The things that are listed as female specific traits of AS that fit me include: often crying because of emotional overload, clapping my hands whenever I get excited, my obsessions being based around celebrities, tv shows, characters, etc as mentioned above rather than numbers, statistics, etc. Those are just a couple of examples, there are more apparently female only specific traits that fit me too.

However I think I'm actually pretty good at hiding my difficulties I've had which females are apparently better at than males. Even so that does make me wonder whether it would actually be possible to cover it up as well as I do if I had the disorder.

I have no idea about how I would even get a diagnosis either, especially given the fact I'm female and they often get overlooked when it comes to diagnosis. I'm not even sure if it would be even worth getting a diagnosis.

I'd be interested to hear from other ladies who didn't get a diagnosis until adulthood about whether it would be worth it or not.

prissyenglisharriviste Mon 21-Oct-13 01:25:35

Depends on why you want a dx - practically speaking, it isn't going to change anything about your personality, character, or what you find difficult/ hard.

You are just as able to make the personal concessions regarding your own behaviours you feel would be due if you had a 'reason' in your head as not - I'm not going to call it an excuse, more a reason. But you are no more going to have aspergers (or not) after an official diagnosis, than you are now.

I've never bothered. It would make absolutely no difference to my life. I believe in dx for a child, as they can be given support to enable them to put coping strategies in place - as an adult, it is extremely unlikely you would be offered any support (and I wouldn't want any, anyway - the mere idea of someone poking about in my head and expecting me to cooperate is enough to make me run screaming in the other direction (except I wouldn't, because that would draw attention ;-) ) I know what I find hard. I know what I need to do to put coping strategies in place. I am able to, or not. Someone else telling me what to do is NOT going to help - I don't need that sort of validation. I am me.

Two out of three of my children tick boxes and have dx sn. I am a staunch believer in early intervention. I have no interest at all in any dx for me. It would change nothing. I am fully aware of which aspects of myself would tick diagnosable boxes. I don't need a psych to tell me. How can another person know me better than I know myself? I am not interested in their opinion at all. grin

There are loads of parents of sn kids who only recognise their own traits when their children are flagged - there are a good few threads exploring some folks' own dx as a result. All available by search on here, or reading the sn board.

It is of course, your own choice. Some people do need that external validation. I can't think of anything worse.

MintyMoo Mon 21-Oct-13 18:59:36

OP - I could have written your post almost word for word. I'm in my mid 20s. About 15 months ago I asked my GP if he could refer me for an assessment. He was great and did so straight away. This was after I rang the NAS and got a list of places in my local area which diagnosed adults (none in my county, I was living with my parents on the border of 3 counties).

I was referred back to a mental health clinic where I'd previously had counselling. I had a triage assessment where the woman told me I was nothing like the two men with Autism she had met hmm

After that I saw a lovely lady who said they couldn't diagnos ASD but she had been able to rule out social anxiety which indicated that my symptoms were caused by something else, which may or may not be ASD. But I think she thought I did have it. She told my GP to refer me elsewhere.

He was then told that the county's PCT trust wouldn't pay for adults to be assessed for ASD so that was the end of my journey.

I now live in the London area and have been too nervous to approach a GP about the issue again. I know I hide my issues well, but also that that's characteristic of women with ASD. I get Autism type scores on all the AQ and EQ type tests. I'm glad you posted - I'm bracing myself to go back to my GP and ask for another assessment.

I mainly want it to help my relationships. ASD seems to run in the family. I'm convinced my Father has it. His Father and grandfather and various maternal uncles sound as though they may have had it, but they all died before I was born so I can only go from his descriptions.

I also think my maternal grandfather and my Uncle have it. A lot of people in my family 'make sense' if you look at them considering ASD as a possibility.

I'm relieved to see so many people have managed to get a diagnosis as an adult. I've been diagnosed with Dyspraxia as an adult and I think I also have Hyperlexia and Dyscalculia as well. Unfortunately I have a LOT of medical issues, bowel, bladder, EDS and its companions, Fibro, TMJD, Raynauds etc, some sort of auto-immune arthritis which doesn't have a name yet that I'm worried my GP may think I'm a hypochondriac or that I enjoy the attention of going to the Hospital and getting a diagnosis (I have been accused of this by friends, family and former work colleagues).

WestieMamma Mon 21-Oct-13 19:16:06

Lots of those conditions are well known as conditions which go hand in hand with autism.

TheSilveryPussycat Mon 21-Oct-13 23:53:53

Westie I am awaiting the results of my tests, and they were quite different from yours. I am 61, didn't have to take a parent (mine are both still alive, and I think DF has it, and poss DM and DB) - but they are going to ring my mum grin.

They did a number of tests, pepsi, but I won't describe them in case you have them done, and I would suggest not looking up the other tests mentioned for the same reason. Mine were mostly cognitive, plus there was some structured interviewing, with one assessor talking and the other taking notes. And something called the WAIS, IIRC.

Before persuading my psych to refer me, I did the AQ, however since I am no longer anxious, and mostly no longer shy, and also because I hate, hate, hate routine, my score was borderline. I await my results with interest.

TheSilveryPussycat Mon 21-Oct-13 23:55:43

* the tests were different, not the results of the tests.

Meglet Tue 22-Oct-13 08:01:38

I've had problems since I was a child but only managed to get an assessment this year at 39. However the assessment came out that I didn't have ASD, despite ticking all the boxes my behaviour wasn't totally in line with ASD. Obviously this may have been because I've spent over 30yrs hiding my true self and learning to conform like a 'normal' person. Apparently I may have got a diagnosis if I'd been assessed as a teen.

So I'm going back for a second opinion. IIRC there's a place in Bromley that specialises in female ASD.

It's so hard because I can see myself in DD and I don't want her to grow up like me.

Reprint Tue 22-Oct-13 08:10:39

My DD could have written your post, OP. You sound similar in many ways.

She tracked down a diagnosis as an adult, and it has been life changing in many positive ways (including that her mother finally stopped feeling guilty for having 'failed' her child)
The diagnosis has given her additional protections at work, and more understanding from colleagues, but above all it has given her a definitive understanding that she is not 'weird' but has clearly defined reasons why she is not always in step with the world.

My advice would be that you should chase down a diagnosis, with the strong caution that you use an understanding and helpful GP.

Reprint Tue 22-Oct-13 08:14:05

Meglet - my understanding is that it is much harder to diagnose high functioning ASD at later stages because adults have developed strong coping strategies, which are so deep rooted that they blur tests.

I would go back for a second opinion - and ask whether this may be the difficulty with diagnosis, in yourcase

WestieMamma Tue 22-Oct-13 08:49:15

I think it helps if you are lucky enough to get seem by someone who really knows their stuff. My daughter and I were diagnosed by different clinicians. Both said afterwards that they knew what the results would be, it was just a matter of confirming what they could tell pretty much straight away just from meeting us. My husband is even worse, anyone with even a basic knowledge of AS would know within minutes, although diagnosis would take longer.

devilinside Tue 22-Oct-13 09:49:22

Be warned though, they use male criteria to diagnose females. I was told my special interests weren't weird enough (reading, writing and music) rather than something like train spotting, the psych actually said this!) and ended up getting a diagnosis of residual Asperger's, Women getting a diagnosis is definitely a feminist issue

PepsiBubbles Tue 22-Oct-13 13:08:07

devilinside in that case how do women ever get diagnosed? I really wish there was a diagnosis criteria that was used to specifically diagnose females. I think perhaps it is being worked on

Like I've said I'm really good at hiding my quirks, although there are still a lot of people who realise there is something 'off' about me. I was bullied badly from the middle of primary school to all the way through secondary school for being weird. So people do notice my oddities, but I guess not to the extent where it would be obvious that there's something that's causing it.

I should also mention that I've been researching more online today and found out that things such as depression, eating disorders and self harm are common in people with AS, especially females. I've battled depression and self harm from a young age as as anxiety. I have to make an appointment with my GP about that anyways so maybe I should mention getting a referral whilst I'm there?

Reprint Tue 22-Oct-13 14:44:41

Going through an understanding GP was a very positive route for DD - they can choose where to refer, and she ended up at a great centre. And then ended up as part of the Cambs research project.

That said, they did say they were amazed she hadn't been diagnosed years before as she scored far lower in tests than anyone expected....but then Aspergers (let alone calling it ASD) wasn't even on the diagnostic register at the time she had real issues! and she has acquired some great coping strategies along the way.

Interestingly, there were a number of questions regarding her early childhood and providing anedotal evidence did help speed the process up.

Reprint Tue 22-Oct-13 14:46:02

Pepsi - there is a great forum, where several adults are going through the process of gaining a diagnosis and will be aware of a lot of current things. I could ask my daughter for the link, and PM forward ....if you would like?

Methe Tue 22-Oct-13 14:50:10

I have always suspected I am on the spectrum somewhere and have a lot of the traits described in the OP.

I have considered going to the drs about it but can't really see the point. What good is a diagnoses? I was born like this and I'll die like it. Putting a lable on me isn't going to achieve anything, is it?

Reprint Tue 22-Oct-13 16:36:09

As I said before, I think its a case of horses for courses - for DD, it was a big thing. She had a reason for her social awkwardness, and her difficulty with so many 'normal interactions'
She feels that her ASD card is an absolute gift, and knows that she could just show it should she ever become non-verbal in a situation (which has happened pre-diagnosis) and caused huge problems for her.

She also feels that it gives her some protection in the work situation.
Above all, people who were once critical have now become much much more understanding.

On the other hand - her aunt, who shares many of the same traits, would never for a moment consider seeking a diagnosis. As far as she is concerned, she is just fine without any labels.

PepsiBubbles Tue 22-Oct-13 21:08:50

Above all, people who were once critical have now become much much more understanding.

I'd hope that would be the case.

PepsiBubbles Thu 24-Oct-13 20:52:15

Update - I have a GP appointment on Tuesday. Hopefully I will get referred somewhere and get some answers.

Reprint Thu 24-Oct-13 21:14:13

I have sent you a PM smile
I hope it goes well with your GP

CrabbySmallerBottom Thu 24-Oct-13 23:44:32

Good luck with your GP Pepsi. Let us know how it goes.

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