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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.

PepsiBubbles Fri 18-Oct-13 22:31:52

women with asds that have achieved remarkable things and helped many people.

I was worried about that too. I'm only 22 and haven't actually done much since leaving school, just worked in boring dead end jobs tbh however I do have things I want to do. I started college in September and am planning on going to university next year. I want a good career and think I'd be able to do it however I'd be worried about what potential employers would think. Not sure if you have to disclose it or not even if I am good at hiding it.

PepsiBubbles Fri 18-Oct-13 22:34:32

I didn't involve either parent in the diagnosis process. I could answer the questions about my childhood well enough myself. If they can't ascertain the relevant childhood information, it doesn't mean you can't be diagnosed.

Speaking of which, I remember when I was young I would spend hours just lining up my felt tip pens and barbie dolls. I wouldn't really play with my dolls, just spent hours lining them up. My mum remembers me doing this but just thought it was a little odd. She didn't think any more of it.

WestieMamma Fri 18-Oct-13 22:34:35

Did you have any kind of counselling/ treatment Westie?

There is no treatment as such but I do get help. I'm not in the UK anymore so it's probably very different. I regularly see an occupational therapist who is helping me with the areas I find particularly difficult. I have a weighted blanket on prescription which helps deep sleep and improves cognitive function. (Sounds like sudo-science, but it's well researched and I'm impressed at what a difference it makes) I also have a phone on prescription to which has special software to help people with cognitive impairments.

I'm also supposed to be getting help from social services. My occupational therapist requested someone come in each week to work with me and help me with structure and planning, particularly around meal planning/shopping/cooking. So far this hasn't materialised as social services are refusing to do it even though we have been through the entire court system and the Court of Appeal have ordered them to.

CrabbySmallerBottom Sat 19-Oct-13 00:01:37

From your description you sound very much as though you have AS/HFA, and if you print out that post and take it to your GP, they should refer you. Good luck and I hope you get some answers. My DD was recently diagnosed with AS and I see so much of myself in her, it's made me wonder whether to look into getting assessed too. I certainly have a lot of traits and so does her dad, big time!

WellThatsLife Sat 19-Oct-13 00:19:41

Dd1 has just been diagnosed with aspergers. Looking at lists I tick many of the boxes

We were at a guide party tonight saw dd1 standing on the edge of a group of the girls obviously wanting to join in but not sure how to then found myself doing exactly the same with the other mothers, stood on the edge of the group not sure what how to join in the conversation. it was quite frightening how we were mirroring each others behaviour, even the nervous body language

IHaveA Sat 19-Oct-13 00:21:45

AS is complex and simply can't be diagnosed on the Internet. The only sensible advice to give someone who is concerned about AS is to tell them to consult their GP.

CharityFunDay Sat 19-Oct-13 00:24:42

I didn't involve either parent in the diagnosis process.

That's odd. CLASS were quite specific that I had to be accompanied by one of my parents. Perhaps different clinics do it differently, and I'm guilty of arguing from the particular to the general.

Coming back to what I said earlier, my diagnosis has enable me to get help that I was never entitled to before, and I am glad of it, but since then I have lost all personal and creative drive.

Thinking about it, that could be because I lost my job and escaped an abusive relationship at about the same time, and have been on various psychotropic drugs ever since.

Perhaps in a few years I will feel 100 per cent positive about diagnosis but I don't at the moment. Like AS itself, diagnosis has been (imho) a blessing and a curse.

CrabbySmallerBottom Sat 19-Oct-13 00:41:55

By the way OP, Tony Attwood, who you linked to, has written a very good book, called The Complete Guide to Aspergers Syndrome. You might find that helpful.

FesterAddams Sat 19-Oct-13 00:49:42

To be frank, I think you should examine carefully your reasons for wanting a diagnosis before going down this route.
Are you looking for a diagnosis as a gateway to accessing support? (Which may not exist)
Or are you looking for a label that will provide validation and so absolve you of having to work through your difficulties?

I'm almost certainly on the spectrum (as are both my siblings), but I have resisted seeking a formal diagnosis because I know that I would use it as an "excuse". I may be projecting, but your posts make me think you would do the same.

Instead I've read up and worked on some strategies for dealing with difficult situations, e.g. the random social situation that you describe and that I recognise so well. You might want to consider taking this more practical route instead.

(To be clear, I don't think that anything that I've written applies to your DD - practical support may be difficult to access, but does exist for children).

legolamb Sat 19-Oct-13 01:01:01

I'm really glad to read this post. I'm in my mid 20s and am wondering the same thing. I've always struggled with social situations, especially group conversations, as well as many other symptoms.

I'm struggling with work due to my social skills. For those who were diagnosed as adults - do you tell your employers? I'm confused as to whether it would be beneficial to get a confirmed diagnosis.

mypavlova Sat 19-Oct-13 01:09:10

I think previous posters are right that you would need to be assessed, but did want to mention that lots of people share various aspects to varying degrees, so there are many connections that you may make with others.

I also read recently that research shows women tend to obsess in general. It was a developmental book about how to help daughters navigate obstacles and the author's point was that you want to help your girl manage that tendency in a positive way. your obsessing is more 'normal' than you may realize.

CharityFunDay Sat 19-Oct-13 03:37:00

For those who were diagnosed as adults - do you tell your employers? I'm confused as to whether it would be beneficial to get a confirmed diagnosis.

I did.

I regret it.

They lost my diagnosis letter, lost the follow-up letter from the clinic advising them about disability discrimination, and refused to perceive anything different about me for three years.

Then I got passed over for promotion (on what grounds was never explained) and my new manager -- who was told he had to have fortnightly one-on-one meetings with me to discuss my needs -- started to bully me.

To be honest, I have not recovered, and I am less than optimistic about my handling at the hands of future employers.

Others may have more positive experiences, but mine are to date unremittingly negative.

Lizzabadger Sat 19-Oct-13 05:52:21

You seem to want permission to be how you are. Well, you have it anyhow.

You also seem to want an explanation for why you are how you are. A diagnosis of AS does not provide this - it is simply a redescription of certain behaviours.

I am really not sure what having a diagnostic label, which, in any case, is not cut-and-dried (it involves an arbitrary cut-off point along a spectrum and massive within-syndrome heterogeneity)will buy you.

It's not going to be the answer to all your problems. You'll still have those.

ProudAS Sat 19-Oct-13 06:39:50

I was diagnosed at 30 after going private and your story sounds very familiar. I'm not only female but married and working which while compatible with AS stood in way of NHS referral.

Drs were under impression that diagnosis wouldbt help me anyway but it has saved my marriage and given me much better understanding of myself.

You are not obliged to inform employers of diagnosis although mine have been very good. If looking for job now I'd probably try to restrict it to employers recommended by other Aspies or with two ticks (positive about disabled people) which may make process take longer but I reckon worth it in long run.

CaptainPoop Sat 19-Oct-13 08:35:58

Lizza, I have ASC and it was the most liberating experience to finally get a DX. Of course my 'problems' are still there bit I no longer see then as problems, it's just me. Part of having ASC is the need to categorise and explain how the world works, including your own personality and behaviours. This categorisation provides structure and a sense of security.

OP, I have been in therapy for a couple of years and my therapist and I have spent hours deconstructing and analysing my social anxieties, and discomfort with physical contact, loud noises and various other things, attributing it to negative childhood experiences and hoping that we could 'fix' me. Now I know there is nothing to fix.

I will offer a word of caution about going solely through the NHS for a DX. 4 years ago I asked my gp for a referral. I saw the local mental health team and saw a psychiatrist with my DM. They said I fit some of the criteria but not all. One of the main things that they said didn't fit was that I interacted fine. Also I was apparently lacking in OCD type behaviour.

It wasn't until this year that I found out that they would have used a DX criteria for men, and as a female I present very differently. They still don't have a profile just for females but work is being done to rectify that. I do actually have many little OCD type foibles, but I didn't recognise that at the time. I thought it was absolutely normal and reasonable to only walk on the left (and panic if I couldn't!), for example. My 'interacting fine' is also really common in women with ASC, we are good mimics and can pass off as 'normal'.

With this new knowledge I have finally found someone for a DX. Do some research, find someone who specialises in women with Aspergers. The psychiatrist I saw had no knowledge of women like us, she was a psychiatric 'GP' if you like.

Good luck.

Branleuse Sat 19-Oct-13 08:45:42

sounds like you probably are to me. Its severely underdiagnosed in girls, but tbh, you have a lot of classic symptoms for both male and female type, so I would say your first point would be to go to your gp, or to contact an autism support centre/group and ask for their advice on what to do next.
Your gp would have to refer you to psychology, and they would be able to start a process of diagnosis

Good luck

pigletmania Sat 19-Oct-13 09:16:42

Op go for it, go to your GP and ask for a referral. My dd6 has ASD. Why op should get nasty responses is beyond me, I like to think we're a very supportive bunch. I think back in the day, anyone who had Aspergers or Mild Autism were deemed weird or funny, teir was not the awareness and dx that we have now. I suspect I might have been on the spectrum myself, displayed similar traits to dd, but better at coping as time goes on

Good luck smile

KateSMumsnet (MNHQ) Sat 19-Oct-13 11:38:07

Hullo OP, we'll move this to Health for you.

Cailleach Sat 19-Oct-13 17:05:35

I could have written your opening post, OP. I was diagnosed at 36 (earlier this year) and it put many things into context for me, both personally and with regards to other family members who I believe have the condition.

To answer your question about getting diagnosed: I put my request in writing to my GP; this was quite a long letter outlining my lifelong difficulties, how these still impact me today, and perhaps most importantly, my belief that there is a strong genetic tendency to the condition on my mother's side of the family.

I was then referred for a formal diagnosis by a psychiatrist (autism is obviously not a mental health condition, rather a neurological one, but ASD diagnoses are handled by psychiatrists.)

You are requested to take along someone who has known you from childhood - this was my mother, in my case. I was formally interviewed by a doctor specialising in ASD diagnoses, using the standard diagnostic manual.

I was told I had Aspergers then and there, ie; verbally, then in written form a month later.

Happy to answer any questions you may have, OP.

PepsiBubbles Sat 19-Oct-13 21:53:39

Fester I wouldn't use having the diagnosis as an excuse but it would take the pressure off me. I get so frustrated when I try to change things and just end up failing and I think if I had something to explain why I'm the way I am I would be less harsh on myself when I do fail. I wouldn't stop trying to improve things I just wouldn't put as much pressure on myself when it doesn't work out.

My family also criticise me a lot when it comes to the social side of things. Like I said before, I really struggle with general every day things like small talk and they do become quite annoyed with me when I don't engage in social things. It's not that I don't want to, it's just that social situations confuse me so much. I've pretty much summed that side up in my OP though. My family don't get it though, they just tell me to stop being silly, shy, need to speak up more, etc. It's just so hard trying to explain to them that I haven't got a clue how to do those things they want me to do which everyone else finds so easy. If I had something to explain it, I think it might make them back off a bit. If I could show them that there's actually a reason for it, I'm not doing it deliberately and it's not something I can just snap out of just like that.

If my mum has to come along, I have no idea how to bring the subject up with her. I haven't talked about this with anyone in real life. Again I fear she'll probably think I'm being silly.

Something that is worrying me is what would happen if I was sent away for assessment and they disagreed and said I didn't have it? I guess I would just be sent back to square one, with me being just an oddball.

pinkpjs Sun 20-Oct-13 08:46:26

Why don't you try one of the online Aq tests ?
They can't formally diagnose aspergers or autism , but they give you an indicator as to whether you should consider looking for diagnosis .

Having said that ... I scored 40 on an Aq test ( anything over high 20s is indicator you might have it .Its a questionare out of 50 ).
My youngest has asd , my middle child behaves exactly the same way as my youngest but isn't diagnosed ( long story , refused to go to consultant appointments when younger , little one wasn't given the choice grin )

My dad is generally thought to be asd ( not diagnosed , but completely textbook with symptoms ) .
I've got the behaviours , but was diagnosed with OCD / depression ( often co-morbid to asd ). .
Have sister and brother who are also full of the traits and behaviours .

Best thing I would recommend is have a close look at your relatives , if there is asd in you , it will also be in someone else in your family . Actually , it will probably show in many members of your family to some degree. Some will be more obvious cases than others .

Consider this before you seek diagnosis , will it change you ? No , you will still be you . You might be happier having a " label" . It might find you your place in the world , it might explain why you feel and act the way you do . But it also might change the way others perceive you .

Crittisism of others not doing things the right way , or being right in themselves is ironically one of the things that could be an asd indicator .
( I'm sure the irony will not be lost here wink ) .

As for feeling like an " oddball " , don't be too hard on yourself . Everyone is unique , asd or not . And by that very thing , because we are all different , we are all oddballs in one way or another . So by being the oddball , by feeling different , you have just proved the point that your just the same as everyone else , a human being .

Having or not having asd , does not make you any less or more a valuable member of the human race . It does not take away any of your talents and qualities . Asd people often have social anxiety , which non asd people also can have . Asd people often have super talents , which non asd people can also have .

Whatever you decide to do , remember there are lots of reasons why your relatives might want to put you off seeking diagnosis , both positive and negative , but they are their reasons , not yours .

You have to do what feels right for you .

If you get diagnosed , then so be it . If you go for assessment and its decided you don't get diagnosed , then that's ok too . It's just something you've looked into , it won't set you back to square one , because you will know for definite , a box will be ticked off .Square one is the point your at now , wondering what to do .

What ever you decide , best of luck , and I hope this little journey your considering has a good outcome for you , whatever path you choose to go . thanks

PepsiBubbles Sun 20-Oct-13 22:52:43

I was speaking to my mum earlier today and I plucked up the courage to bring up the subject of me possibly having Aspergers and how I was thinking about seeing if I could find out for sure. She didn't seem surprised and told me that when I was about 5 or so, my parents were actually called in for a meeting at school because my teachers were concerned about me. Apparently they told my parents that there was a good chance I was on the spectrum and thought it would be a good idea for my parents to take me to a specialist. However they refused and apparently brushed it off. My mum told me they thought the teachers were overreacting and I'd grow out of it hmm. She then told me that she still doesn't think I have it though. She said I'm just 'quirky' and that AS would just be an 'excuse' for me not to socialise hmm. She then said I just need to make more of an effort.

I'm actually feeling quite upset at this. Just a bit shock that they just ignored my teachers advice, thinking that they knew best. Feeling slightly ashamed too - I feel if I was diagnosed, they would still think it was an excuse for not being the perfect daughter.sad

PepsiBubbles Sun 20-Oct-13 22:55:13

pink, I did one of those online tests a while back. I know they're not always accurate but I did score quite high. Meaning there's a good chance I'm on the spectrum.

My auntie actually has traits of AS, similar to mine actually. Nobody in my family has ever been formally diagnosed though.

WestieMamma Sun 20-Oct-13 23:38:15

The AQ test is about as accurate as you can get. A lot of people seem to ascribe super powers to clinicians who diagnose. The reality is that when diagnosing adults the only information they have to go on is what you tell them. If you have the triad of impairments and explain that to them and how it significantly impacts your life, you will be given the diagnosis. It's very different from diagnosing a child where it's all based on the observations of others.

I kept a record of my consultation so can tell you exactly what it involved.

The first test is the Maclean Screening Instrument for BPD (which has to be ruled out first). 10 yes/no answers. 7 or above indicates BPD (borderline personality disorder). Here it is:

The next is the HAD-scale, which assesses for anxiety and depression. It's very common for people on the spectrum to score high on anxiety.

3rd is the Yale-Brown Obsessive Compulsive Scale. This is a test primarily for OCD, but OCD can be an indicator of autism.

Now we're onto the specific autism tests. The first is the Autism Spectrum quotient (AQ) test, which is considered the dog's gonads of autism tests and is the most widely used and trusted. Developed by the autism research unit at Cambridge University.

The next is the Empathy Quotient (EQ) test. Also developed by Cambridge University as a control test to the AQ one.

The next is a more upto date and detailed version of the AQ test called the Ritvo Autism-Asperger's Diagnostic Scale (RAADS) which the doctor said isn't really necessary but he wanted to do as it's like a second opinion and confirms the diagnosis.

Then the Autism Spectrum Screening Questionnaire (ASSQ). You answer these questions based on how you were BEFORE 12 years of age. For an autism diagnosis the characteristics have to have been present as a child and not developed as an adult. That's what this one is for.

Finally there was a brief structured interview which asked why I thought I had Asperger's, got me to describe my difficulties and how they affect me on a day to day basis.

IHaveA Mon 21-Oct-13 01:06:09

Two of my kids were extremely reserved at school and a few teachers mentioned it to me. I disregarded their observations as I knew that my DC's were lively, fun and clearly not reserved when they where with their friends or family outside of school.

I am not sure I would think much of a teacher who told a parent that their child might be on the spectrum. That sounds very unprofessional.

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