Autistic...or just odd?

Hi everyone,

I'm in my mid twenties and finding things harder than ever. I really struggle with social skills and although I've always been told I'm "just shy" I've always known something is not right. Despite having outgrown the awkward teenage years I still find it incredibly difficult and confusing holding a conversation with pretty much everyone apart from very close family, even some friends I've known for years. 

I've never been like other people, with strong interests and beliefs, not understanding or agreeing with social norms but recently become more aware of just how odd I am (must look for patterns in reg numbers, must always have car windows open even in January! etc...). I think I might be autistic but I'm terrified of going for a diagnosis to be laughed at and told l am just shy and a bit strange. I work with autistic people and although realise it's a spectrum disorder, I am nowhere near as affected as them. I think I probably come across as a little eccentric, lacking in self confidence and very shy.

I am really struggling with self confidence and self doubt and think a diagnosis would probably pull me out of the hole I've dug for myself; but am I just socially awkward, unusual, and looking for something to take the blame?

I guess I'm asking how autistic do you need to appear to get a diagnosis??!

  • Abc123 said:

    Hi everyone,

    I'm in my mid twenties and finding things harder than ever. I really struggle with social skills and although I've always been told I'm "just shy" I've always known something is not right. Despite having outgrown the awkward teenage years I still find it incredibly difficult and confusing holding a conversation with pretty much everyone apart from very close family, even some friends I've known for years. 

    I've never been like other people, with strong interests and beliefs, not understanding or agreeing with social norms but recently become more aware of just how odd I am (must look for patterns in reg numbers, must always have car windows open even in January! etc...). I think I might be autistic but I'm terrified of going for a diagnosis to be laughed at and told l am just shy and a bit strange. I work with autistic people and although realise it's a spectrum disorder, I am nowhere near as affected as them. I think I probably come across as a little eccentric, lacking in self confidence and very shy.

    I am really struggling with self confidence and self doubt and think a diagnosis would probably pull me out of the hole I've dug for myself; but am I just socially awkward, unusual, and looking for something to take the blame?

    I guess I'm asking how autistic do you need to appear to get a diagnosis??!

    Hi Abc123 - welcome to the community

    ....and welcome to my world!  I don't mean that flippantly.  Everything you've said here is everything I'd have said about myself in my 20s.  I still say it about myself now, even though I now have an ASC diagnosis to explain to me why I've always been 'odd'!  Actually, it's not odd at all.  It's just different.  It's not like the majority - and anyone in a minority is bound to feel odd and probably be regarded as being so.  But no... we're just different.

    I'd say it sounds very much like autism could be at the root of your issues.  Have you taken the AQ test?  It's the standard test that's used in pre-diagnosis to determine if there is a possibility of autism.  Scores over 32 are generally indicative.  I scored 39, and was diagnosed last year at age 56.  Before then, like you, I just went through life wondering what on earth was wrong with me.

    If you do go down the diagnosis path, it's nothing to be fearful about.  The diagnosis, for me, has been overwhelmingly positive.  It's given me validation.  It's enabled me to put my life into context.  And it also enables me to get taken seriously and to get access to appropriate support.

    Here's the link to the test.  It only takes about 10 minutes to do.

    aspergerstest.net/.../

    Welcome again.  You're amongst friends here.  Lots of people will identify with you.

    Best wishes,

    Tom

  • Thanks for your reply. I score around 40 on the aq test but then worry that my awareness of the condition might skew the result. 

    I am just not sure whether I am on the spectrum but being female present atypically in some respects, and have developed a lot of coping mechanisms to get by; or whether I'm just looking for a scapegoat for my inability to fit in!

    I think going for a diagnosis and being told I am not on the spectrum will be very hard to handle, but I suppose there is only one way to find out.

  • Abc123 said:

    Thanks for your reply. I score around 40 on the aq test but then worry that my awareness of the condition might skew the result. 

    I am just not sure whether I am on the spectrum but being female present atypically in some respects, and have developed a lot of coping mechanisms to get by; or whether I'm just looking for a scapegoat for my inability to fit in!

    I think going for a diagnosis and being told I am not on the spectrum will be very hard to handle, but I suppose there is only one way to find out.

    Your feelings are quite natural.  I knew about autism before I took the test, too, but I answered with absolute honesty - as I'm sure you did.  We all develop coping mechanisms, because it's the only way to survive out there.  I've been told 'You can't have Asperger's because you don't....' etc, etc.  I try to tell people, though: I've had to learn through very hard lessons what most people take for granted, and can do instinctively.  I can't understand all body language.  I certainly don't understand flirting and 'come-ons', as several past girlfriends have testified.  I have to force myself to make eye contact with people.  I'm a care worker with special needs (including autism) and do the job well.  I can care for people.  But that doesn't mean I can put myself in their shoes and empathise with them.

    If you go down the route of diagnosis, start with your GP.  Tell him or her of your issues.  Tell him or her about your AQ test score.  Push it if they're resistant.  Insist on getting a referral - and if you're like me, you find insisting a very difficult thing to do.  But it's the only way.  Check out other resources in your locality that might be able to offer advice - but the other people on here will certainly be able to help you with that, too.

    I exhibit many of the behaviours and feelings that you describe.  When it came to having my final diagnosis, the clinician listened long and patiently.  She was in absolutely no doubt about it.  They're not there to catch you out.

    Good luck - and keep talking on here.

    Tom

  • Yep, ABC, your GP should always be your first port of call. I just hope you have a good one because it can be a bit of a lottery.

    Good luck.

  • Hi all,

    I am also new. I am not sure on the etiquette for introducing oneself on the internet, as I never have before.

    I saw this and had to post. I am in almost exactly the same position. I am a 20-something male, also scoring around 40 on the AQ test, and also feeling a little fraudulent (and scared) about going to the GP for a diagnosis referall. 

    Abc123, would you mind if I asked what traits/tendencies you have that indicate Autism? For example, some specific situations that are really stressful, some behaviour that may seem odd etc. It may help boost your confidence if others, who are already diagnosed, chimed in with their experiences of similar situations. It would absolutely help mine, as I have no frame of reference.

  • I'm in my late 20s, always went through life feeling slightly different. i just wanted to share that my GP was very supportive and a referral was the right thing. I have my assessment in just over two weeks slightly anxious but really starting to feel that I'm going to get a diagnosis. 

    I've attempted the AQ a few times, answering honestly each time and not yet scored below 40 which gives me good indication. I attempted the Ritvo autism Asperger diagnostic scale today as well and was scoring higher than average for ASD, 231 I think it was. 

  • Hi abc123,

    I can certainly relate. I posted a thread recently as I wonder if my long-term history of anxiety and depression has prevented healthcare professionals picking up on possible Aspergers. I'm not looking for a be all and end all answer, just think there must be one as opposed to being 'the shy one' that could explain things? For me it's not a case of not saying much, I am left very confused and overwhelmed by a lot of social situations. I'm female too and with the way I dress and some coping mechanisms I use etc. people unfortunately just assume I'm 'snobby' or quiet. I hope you manage to get to the GP for an assessment x

  • Situations that cause me a lot of anxiety and stress include:

    * Sudden changes to routine, such as being asked at the last minute to work overtime, or to do a task I'm not over-familiar with.

    * Being asked to do something a different way, even though I might be doing it in a perfectly adequate way (such things can lead to panic attacks).

    * Being in the presence of people with confident, forceful personalities - even if I know more about a subject than they do.  In such situations, I invariably make mistakes.

    * Going to any form of social gathering, even if it's with people I know.

    * Having a stranger enter my home.  I usually need to vacuum afterwards.

    I have routines that I need to stick to - such as housework days and times.  I prefer to buy things like apples in even numbers, not odd numbers.  I'm hyper-sensitive to criticism, and it will usually lead to my making mistakes in tasks that I'm usually competent at.  I will go out of my way to avoid an argument because I never feel confident in being able to hold my ground.  If someone, in talking to me, makes a remark that I take issue with (such as a racist or sexist remark), it anguishes me - but I never have the confidence to tell them I would prefer them not to talk that way to me.  I need to work in an ordered environment.  If I'm doing a job in which I'm taking over from someone else, I have to rearrange everything to suit my sense of how it should be.  If I know I'm taking over from a particularly untidy person, I have to go into work early to give myself time to do all the rearranging. 

    The list goes on and on...

  • Martian Tom, thanks for that. How would you rate the annoyance level/intrusion on your life for each of those? How does your anxiety manifest itself?

    For me, I can remember a lot of vomit when I was younger. I can remember being 'comfortable' with vomiting such that I could be walking along, turn my head to the side and vomit, without breaking my gait, and without getting any on me, haha. These days I just seem to get really, really, really grumpy and frustrated with everything. Sometimes, I can feel the exact moment adrenaline hits my heart.

    If you'll indulge me (I'm going to go through your points in order): 

    This is the sort of thing that makes me unsure if I have autism or not. I can handle minor changes with my daily routine without stress. For instance, if someone is in the bath room when I wake up (that is when I brush my teeth, I will move on and in all likely hood, forget to brush my teeth). Or someone coming round unexpectedly. I can even handle going and doing big things like driving 1.5hrs away to pick something up with an hours notice (as long as someone else drives) without thinking too much about it. I need some time to prepare for it though. 

    With that said, I think I am in a really good place right now, which allows me to feel comfortable. I know that after doing things like the above, I can come back to my house and not have to see anyone/talk to anyone for a while. I also know that everytime I have tried to be 'normal' and do 'normal things', like have a 9 to 5, spend lots of time around others, I have been broken by it, I don't seem to cope well (anything from shouting to tears to suicidal thoughts). So, I dare say I would cope less well if my circumstances changed. 

     

    I think I might have overcome that. I have learnt I am allowed to say no (only learnt that in the last year though, when I started doing my own thing). I doubt that is helpful to you, especially if it is your boss that tells you to do something.

    I also have a problem asserting myself in similar situations. For instance when buying a car. I have a degree in Engineering, but I just seem to forget everything I know as soon as the salesman starts saying things contrary to what I know, or I cannot supply an answer in a reasonable time frame.

    Social events get me also. Especially ones which are sufficiently far for me to not know where I am going/going to: park/go to the toilet/eat/drink/be expected to dress up/talk to many people/ etc etc. Needless to say, they never happen spontaneously, nor very often. As an aside, I am perfectly happy to talk to people when the format is correct, such as at the builders merchant, where I have a list of things they can supply me with. Job done. I don't really enjoy small talk.

     

    I set the volume of TV/PC/stereo in sets of 5 only.

     

    I am dreadful at conflict. Hate it, especially verbal, my brain just doesn't work fast enough. Physical arguments I have less issue with. My Mum told me when I was little: "never start  fights, just make sure you finish them".

     

    I dislike people watching me do things. I can almost feel their eyes drilling holes in me. I always make mistakes. I don't mind criticism too much as long as I respect the person criticising me, and the criticism is constructive.

    I do try to work in a tidy area, but it just ends up really cluttered up. I need some level of structure/planning to produce any meaningful output. I have just discovered lists are pretty useful for getting me to do things. I bought some whiteboards, one for the things I want to achieve/finish tomorrow. I don't tend to write more than 4-5 things on it however. One for current/short term jobs. One for longer term. Both of these can have many, many things written on them. I feel the physical act of rubbing off the boards is quite motivational.

    To add another point:

    I do not enjoy places that appear crowded (it is a person per unit area thing). It seems roughly speaking that 4 people (other than me) per 3 square metres is enough to make me feel the fight or flight response.

     

    I apologise for the long read/length of time for reply, again, I am not sure what is appropriate for a message board, additionally, I am having a hard time crystallising my thoughts into sentences that accurately represent my experience. I had to write notes, which I've re-written/edited etc, this post took more than 3 hours to write (I have to do this a lot).

    Also, apologies for the thread hi-jack.

  • All

    My Boy does not hardly make any eye contact anymore , and does not notice that ive  return home from work, he dosnt talk anymore but only use to say mum dad car no sentenaces. He dosnt commucate with any of the child in pre-school. He used to play football, but this has stoped aswell now.

    He loves watching tv and cuddling his mum. He also likes his food.He is very strong and has good balance and walks up the stairs and climbs steps with ease.

    We have recently seen a pedatrision who has recommened speech theraphy everyday for six months, but cant tell us what he thinks this is. My boy is 2 years 8 months old.

    Does anyone have any ideas apart from autism?

    Regards Steve