To be or not to be diagnosed

Hi everyone!  I am a 41-year-old female and I have spent pretty much all of my life feeling alienated from society and not fitting in.  About a year ago I saw a film, Max and Mary, about a little girl who became friends with a man with Asperger's.  Out of curiosity I googled Asperger's and found that many of the difficulties which I've encountered through my life can be explained or linked to autism.  I also score quite high on online Asperger's tests.  The final straw came a month ago when I was told that my contract at work would not be renewed and the reason I was given for this was rather vague and unspecific.  When I questioned one of my colleagues she said that she thought it was because I didn't fit in. 

I'm convinced that I'm on the spectrum and I've been toying with the idea of seeking a professional diagnosis for some time, but I'm not sure because from what I've read on this and other forums adults seeking diagnosis aren't always taken seriously.

Some of the problems I have are:

I have always found it difficult to make and keep friends.  When I do, it's one at a time. Two's company and three's a crowd.  The ones I have had, especially at school, tended to be people on the fringes because the others formed cliques which wouldn't have anything to do with me because I was a bit wierd and uncool and so they rejected me. 

It is difficult for me to take part in a discussion between more than about two other people because I'm slow to respond.  It takes a bit longer for what the other person said to register in my mind and for me to come up with a response. By the time I've thought of what I want to say, someone else in the group has already responded, the discussion moves on and I'm no longer able to say what I want to say.  Sometimes I hear something which interests me, I run it through my mind and want to continue with it but the discussion has already moved on.  So mostly I just sit there, say nothing and people think I'm uninterested or very shy.  I listen to the conversation but it often goes too fast for me to process.  I feel disconnected and it's just like watching TV.  I know I must concentrate to follow the discussion but I find it difficult to maintain concentation and sooner or later my mind will start to wander.  I have a limit of about two hours after which I'll find some excuse to leave or take a walk, which helps me a lot to digest the information from the discussion.

In most social situations I'm ok as long as I can stick to the script.  But if anyone says anything unexpected or I'm in a new situation, it throws me completely and I need time to think about what the appropiate response would be and this delay confuses people.  I know I sound awkward and sometimes I say something slightly inappropiate and I can unintentionally offend people.  I often overexplain things or go on about something too long in order to prove my point and people become impatient with me.

Small talk has always been an issue for me.  In my early teens I noticed that my classmates would say "hi, how are you"  to me, and then spend the rest of the day ignoring me.  I came to see this as hypocritical, began to hate small talk and avoid it at all cost, including in my family.  I guess people considered me aloof, unfriendly or just plain wierd.  As I got older and more mature I realised that I must engage in small talk if I want to make friends and I've got a lot better at this though I still have to restrain myself from giving honest answers to the question "how are you?"

In my first year of primary school I got bullied.  They would stand in a circle around my and chant "why" because once when I was teased I shouted at them "Why me?"  Then I moved school and it stopped for some reason, though I was considered gullible and easy to wind, teased and ostracised.  As a result I have very low self confidence.  At school I prefered to stay in the library rather than go outside with the other kids.

I used to throw temper tantrums and once even hit a teacher.  Even now I react badly to stress and sometimes am physically sick.  I don't mind routine changes, but need advance warning to prepare mentally.  This helps me to rehearse things in my mind and if I can't do this, I get stressed out.  I think this is one of the reasons my contract isn't being renewed at work.

I have frequent mood swings, sometimes I feel depressed and at other times optimistic.  When I was 14 years old I went through a period of about 6 months when I didn't want to talk to anyone, neither family nor schoolmates.  My parents put this down to puberty but in retrospect I think it was depression.

I have intense likes and dislikes.  At school I was into anything to do with science, sci fi and particularly astronomy.  I learnt the magnitude of all the brightest stars off by heart, the distance of each planet from the sun, etc.  Now I like progressive rock and learning languages.  But I prefer to keep my hobbies to myself because I know it bores others if they don't share the same interests and they think I'm wierd if I go on about them.  I even try to hide them, mainly because people find it strange, don't see the point of them and will ask me why but I can't explain why.  As for dislikes I can't stand smoking and commercials on TV.

I can't tolerate high pitched noises such as whistles, smoke alarms, car alarms, ambulances and small kids screaming.

I can't multitask to save my life.  I need to do things one at a time.  Once at work someone suggested to me that I should go to the doctor because I didn't seem to be hearing things and might be partially deaf.  But what happens is that if I'm listening to one person talking and another person interrupts I'm aware of it but won't hear because I can't deal with two stimuli at once - my mind seems to block out the second stimulus.

When I was 11 years old my class teacher told my parents I was getting behind at school and I needed tuition for maths.  My parents took me to a private teacher to whom I didn't respond very well.  This teacher said she thought I was autistic and I should see a doctor, so my parents took me to the family doctor.  I must have responded to him much better because he said he didn't think I was autistic because I answered his questions and looked him in the eye.  It's true that I can make eye contact in most situations but when I'm stressed, emotional or feeling awkward I find it very difficult if not impossible.

It's difficult for me to know what other people are thinking or intending to do.  I recognise when someone is happy, sad or angry but miss the more subtle ones.  I worry too much about what people are thinking about me, get paranoid and sometimes wrongly accuse people.  I get most jokes when I'm expecting it and it's accompanied by a laugh or smile, or I know the person and his or her style of humour well but if it's said seriously or unexpected  either I don't get it or don't know how to react.  I don't do banter, often don't understand it and it makes me very uncomfortable.  However, I understand most idioms and metaphors.

Recognising faces is very difficult for me.

I apologise for the length of this and thank those who have taken the time to read what I have to say.  It helps me to share my experiences with people who can relate to them and understand me.

  • Ghostwriter said:

    Well locommotion jeez I got that song in my head now . I can totally relate to your life experiences . Its not easy and its not easy to be branded for a life just to find out the branding had the wrong barcode . All sorts of emotions then a million thoughts  run through your mind of "what ifs " and "what Nows".  Discovering your an Aspie is enough to drive the anxiety out in any Aspie in its full glory . Do not despair I was diagnosed and it only took a week after it was picked up after the numerous continuation of troublesome situations I found myself in and there was me thinking I was just an arsehole and so was everyone else actually . Anyway It has helped me I now know I am not MAD or BAD I am different and the best part is I no longer have to fake being a NT i can just be me . But the downside is I have taken a serious knock in my confidence and Im very angry with the  life I could of had without the Aspergers and the struggles could of been so different if only I had been understood on Mass . and the realization that I really am alone and I dont want to be I also hold a certain sense of embarrassment as a woman of 35 who should be like all the other women of 35 and I am just a car crash . and I struggle to see how I could ever inflict that upon a life partner they would need a nobel peace prize . I hope you can just now start to accept who you are and getting a diagnosis confirms and explains and it helps open up avenues of support . I had to personally get a diagnosis as to open up the correct services as My Aspergers is pretty apparent from the offset to the point I was just branded mental and very challenging . I am not really I dont think im that bad . I just end up in ridiculous scenarios on a regular basis . now these ridiculous scenarios hopefully wont get out of hand so much as I will be more understood in the context of aspergers . I need to get the frustration and anxiety under control more . I hope though you find your path and in this world with complete social Blindness its never going to be easy . I mean I wish we lived a life on the internet ( well I actually do ) because the difference in my ability to communicate in the written word compared to the presentation of my physical self is north pole south pole . so good luck  

    As a 41 year old adult I've learnt to cope with most everyday situations, meaning that I can think of what to say to people, but my conversations don't flow the way they would do for an NT because I have to think of a good reply and there's a slight but noticeable hesitation. It doesn't come naturally. I'm wearing a mask. The thing I still find hard is picking up on the hidden messages behind what people are saying, or the subtle nuances that pass on those messages, so if I'm not told something directly, I just won't get it. And I don't pick up on people's moods and emotions very easily, unless it's obvious, like laughing or crying. I also get overwhelmed and stressed easily. But all in all, I would say I was affected quite mildly by AS... that is, until I have to face a new situation like a new job, for example - that's when I get overstressed, and the symptoms begin to emerge, become more prominent and less easy to hide.

    Most of my socialising is done on the internet these days, too. I also express myself better in writing.

  • Scorpion0x17 said:
    I'm no expert, but, from what I understand, the 'symptoms' of ASDs can also be the symptoms of one or more mental health disorders, with the key differentiator being whether you've had difficulties from early childhood or not (mental health disorders are caused by some event so there's a 'before' and 'after', whereas ASDs are developmental disorders that one has from birth (though the severity of symptoms tends to change over time)).

    There can be similarities but they are not the same and not all the traits would match.  Failure to understand subtle expressions in others and humour are giveaways.  Glad you got your diagnosis OP.

  • Well locommotion jeez I got that song in my head now . I can totally relate to your life experiences . Its not easy and its not easy to be branded for a life just to find out the branding had the wrong barcode . All sorts of emotions then a million thoughts  run through your mind of "what ifs " and "what Nows".  Discovering your an Aspie is enough to drive the anxiety out in any Aspie in its full glory . Do not despair I was diagnosed and it only took a week after it was picked up after the numerous continuation of troublesome situations I found myself in and there was me thinking I was just an a******e and so was everyone else actually . Anyway It has helped me I now know I am not MAD or BAD I am different and the best part is I no longer have to fake being a NT i can just be me . But the downside is I have taken a serious knock in my confidence and Im very angry with the  life I could of had without the Aspergers and the struggles could of been so different if only I had been understood on Mass . and the realization that I really am alone and I dont want to be I also hold a certain sense of embarrassment as a woman of 35 who should be like all the other women of 35 and I am just a car crash . and I struggle to see how I could ever inflict that upon a life partner they would need a nobel peace prize . I hope you can just now start to accept who you are and getting a diagnosis confirms and explains and it helps open up avenues of support . I had to personally get a diagnosis as to open up the correct services as My Aspergers is pretty apparent from the offset to the point I was just branded mental and very challenging . I am not really I dont think im that bad . I just end up in ridiculous scenarios on a regular basis . now these ridiculous scenarios hopefully wont get out of hand so much as I will be more understood in the context of aspergers . I need to get the frustration and anxiety under control more . I hope though you find your path and in this world with complete social Blindness its never going to be easy . I mean I wish we lived a life on the internet ( well I actually do ) because the difference in my ability to communicate in the written word compared to the presentation of my physical self is north pole south pole . so good luck  

  • Hi Mason, Yes, I did have an assessment with a neuropsychiatrist over a year ago now, and he gave me a diagnosis of AS and Major Depressive Episode. I don't have Dyscalculia, but know that it is often associated with AS. My problems were more that I was very slow to complete classwork due to being easily distracted, and that if I wasn't interested in what I was doing, I just woudn't bother, so I had about two years of really bad grades, then the teachers decided that I needed to go into a class for slow learners. But in the end I did ok in the exams, and did better at maths than my teachers were expecting, probably because I was better able to concentrate in class conditions. I think I probably have a touch of ADHD on top of AS.

    If you want to go ahead with getting a diagnosis I would suggest that you write down all the symptoms that you have, and how they affect your everyday life, and then take it to the GP and ask for a referral - something similar to the one I wrote above, but you could cut it down and make it briefer if you wanted.  That will take the pressure off having to explain - I know how difficult that is. If you look around this site, there is a lot of information about the diagnostic process which will help you to prepare. Good luck!

  • Hi LoCommotion, how did your assessment go if you've had it? When I read your post, I felt like I could have wrote it. It was exactly the same, even your interests in space and a strong and now language. and your difficulties in Maths (I have dyscalculia). It's so strange but if I wrote my story out it would be the same. I'very not spoke to anyone about my concerns and I don't think my parents would take me seriously because I've had so many problems with depression and anxiety. But i know there's more to it all and that I struggle so much socially. I notice it more when I meet new people and this years been difficult because I've moved back to my hometown and I don't have any friends here. I've made two friends now at work but they keep getting on at me for not making decisions and plans and mokstly for not texting them back or replying to Facebook messages but I don't know what I'm suppose to say so I leave it and then forget about it. I'm also terrible at keeping up with conversations just like you desribe and I tend to talk too much and go into too much detail when I do talk. But these two friends seem to accept me for who I am just like my friends at uni did so hopefully it'll work out ok.

    I think I would benefit from a diagnosis also but I don't know how to go about it because I have trouble explaining things to doctors

  • Congratulations Susie and welcome to the club!  Today is the first day of the rest of your life :-)  I'm having a lot of "what if" thoughts but knowing is better than not knowing.

  • Hi I've been diagnosed with Aspergers today. I'm feeling very positive about it and my only regret is that I did nt ask for an autism screening years ago. Now I'm hoping my life will begin.

  • Yes, in many ways it does make it easier to accept myself.  Before I spent a lot of time frustrated with myself and my behaviour and had low esteem.  I'm far from perfect but at least I know a lot of it is due to neurological issues and not because I'm a bad person.

    I also read Aspergirls.  It helped me to make the decision to seek a diagnosis.

    You don't need an official diagnosis to recognise the traits in yourself, and this in itself can be a great help to understand yourself better.

    I also hope your son's diagnosis will help him overcome the difficulties I know he must face at school, and that his teachers are understanding and accommodating to his needs.

  • Update: I had my diagnostic assessment and have been diagnosed with AS, I'm now just waiting for the report and confirmation in writing.

  • I know what you mean about being an oddball, that's how I've felt all through my life. Having a disability certainly doesn't make you mad and I think a diagnosis is an important step towards accepting and understanding who you are, which is why I'm having a diagnostic assessment. The assessment's about a week from now and I'm getting increasingly anxious about it, especially since I've had virtually no information about what to expect, or whether to bring any documents along or family members.

  • helo i am 55 was diagnosed in aug this year with aspergers syndrome plus adhd has it helped me ?? well yes i have a disabilty i am not MAD i have grat difficalty with site like this as i find it difficult to express myself in the written word as i also have dslexia a had name to spell rite with my problem but life does go on  the hardest hurdle is peoples acceptance that you have a disabilty  as for not fitting in well i should have a gold medel for that one i am and always will be an ODDBALL but thats me i just need someone to talk to that can understand my plight thats not in the health proffession some one like me thanks for reading stay lucky xx

  • Hi ashenputtel.  I didn't have much talking time at the GP's so I didn't get to mention all the things I put in the post.  I told her that I had come to request a referal for an assessment for Asperger's and she asked me why I thought I had it.  I told her I'd been having a lot of problems throughout my life, particularly with socialising, making friends and keeping a job, and that these problems were similar to the symptoms of Asperger's.  She asked me if I had a history of job problems, whether I had any learning disabilities, and whether I was self-harming or had suicidal thoughts.  My mum was there and she asked her about her opinion.

    I think that my general demeanor convinced her because I found it hard to express myself and to make eye contact, and was rubbing my hands and fiddling with my hair, something I can't help doing when feeling stressed.

    Good luck, ashenputtel.  Make sure the GP knows exactly why you're there and it'll be fine.

  • Hi, 

    I've just joined here and I've just read your OP with interest - it was like reading a pen portrait of myself! 

    I've been wondering for a couple of years whether I could have Asperger's. I'm 37 and tick so many of the boxes. Your story sounds so much like mine. After reading your post I am going to make the appointment I've been putting off for so long. 

    Can I just ask you, when you went to the GP did you pretty much tell them what you'd written in your opening post? 

    thanks.

  • ^Thanks, that's useful information.  I'll do that.  My GP has also written them a letter giving the reason for the referal, that should also help.

  • LoCommotion said:

    Thanks Jon for your recommendations.  I have read the first book, and it is one of the reasons why I decided to ask for a referral.

    It's time for an update to this thread.  I went to see a GP and she referred me fairly quickly, and I have an assessment date in November.  I've been told that the assessment lasts 1 1/2 hours and will result in a diagnosis.  Somehow in light of the descriptions of the diagnostic procedure and difficulties faced by others on this forum this seems too easy...  can a diagnosis be made after one session?  Or will they want to conduct further tests?  This may be difficult for me as I have to travel far to get to the diagnostic centre.

    I got a diagnosis after one session with a psychologist.

    I think it depends on how you 'present' - if you go in saying "I don't know what is wrong with me" then they have to work through loads of options, but, if like me you go in saying "I'm pretty sure I have Asperger's" then they'll just assess whether that likely to be correct or not (and only look at other things if not).

  • Thanks Jon for your recommendations.  I have read the first book, and it is one of the reasons why I decided to ask for a referral.

    It's time for an update to this thread.  I went to see a GP and she referred me fairly quickly, and I have an assessment date in November.  I've been told that the assessment lasts 1 1/2 hours and will result in a diagnosis.  Somehow in light of the descriptions of the diagnostic procedure and difficulties faced by others on this forum this seems too easy...  can a diagnosis be made after one session?  Or will they want to conduct further tests?  This may be difficult for me as I have to travel far to get to the diagnostic centre.

  • ...two very good books:

    The Complete Guide Aspergers Syndrome

    and

    Coming Out Asperger Disclosure Self confidence

    .....they will help you clarify your thoughts prior to an assement. Self-advocacy is really important.....

    Good Luck Wink

  • Thanks Hope, that's very useful information Smile  I'm now fairly sure I have an ASD.

  • Theory of Mind difficulties are unique to autism: problems understanding what someone is thinking and feeling and responding appropriately. Uta Frith (psychologist) has identified this as being the key differentiator between ASC and other conditions.

  • I see your point.  I can't think of any traumatic event in my childhood which happened to me directly that could have caused a mental health disorder, but I suppose it can't be ruled out...  anyway without a formal diagnosis it's just speculation.  I certainly don't believe in self-diagnosis as only a qualified expert can judge whether I suffer from a disorder.

    The reason I would like to be assessed is to have some closure for the difficulties I've had and so that I can stop blaming them on myself and other people.

    Are there any symtoms which are unique to autism spectrum disorders which can't be explained by a different unrelated disorder?