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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 www.tonyattwood.com.au/index.php/about-aspergers/girls-and-women-who-have-aspergers

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.

IneedAsockamnesty Fri 18-Oct-13 21:58:02

Please please report your post and get it moved to health,I'm a bit concerned that you may get some very unpleasant responses and you don't need that.

But best of luck and chat to your gp about a referral x

Dawndonnaagain Fri 18-Oct-13 21:58:08

I was diagnosed at 45. Go to your GP and get a referral to CLASS.
here
Definitely worth a go if you are wondering and yes, it's surprisingly easy to cover it in most circumstances.

PepsiBubbles Fri 18-Oct-13 21:59:21

Why would I get some unpleasant responses? I think it's probably best if it went in health anyways.

PepsiBubbles Fri 18-Oct-13 22:01:25

How do I get it moved?

I'm scared that if I go to my GP he'll say I don't have it and won't refer me anywhere. Out of curiosity, dawn, how does it get diagnosed?

Goldmandra Fri 18-Oct-13 22:01:25

I can't comment as, although I definitely have lots of traits I've never been assessed. Both my DDs have it.

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.

My DD1 is so skilled at covering her symptoms that lots of her previous school staff believed she didn't have it despite seeing her every day for four years.

It is perfectly possible for you to have covered up your difficulties this well.

What you need to ask now is how a DX would help you. Is it about understanding yourself better, getting support or something else?

PepsiBubbles Fri 18-Oct-13 22:07:55

I guess it would be to understand myself better. I've went through my whole life pretty much thinking I'm some kind of freak, that there's something wrong with me. Having a diagnosis would also take the pressure off me. By that I mean, my family are aware of my quirks and always try to get me to change them, especially regarding the social situations. If I had an official diagnosis then at least I could tell them there's a reason for it, I'm not just being awkward.

ICameOnTheJitney Fri 18-Oct-13 22:07:58

Pepsi people here will find any reason to give a nasty response. This is AIBU...it's an open war zone. Ask to get it moved.

Crowler Fri 18-Oct-13 22:10:31

This post resonates with me because after a lifetime of having difficulties with my dad, we've worked out that he has Aspergers. I can tell you that my dad, being in his 70's and his condition pre-dating any kind of intervention, has never really had a proper existence or a real relationship with my sister and me.

See your GP.

Snatchoo Fri 18-Oct-13 22:13:08

I don't know about diagnoses, but DSS is being assessed and I am interested to know what tangible difference it makes to have one.

DSS is 'only' socially awkward, he doesn't display any of the other classic traits (that I read about on the autism.org website).

Hope you get some helpful advice soon!

CharityFunDay Fri 18-Oct-13 22:16:45

Your GP would have to refer you to a diagnostic specialist, and you will have to argue your case very strongly with him/her. Helps to make a list of your problems, or take along a filled-out ASD AQ/EQ questionnaire. Only the specialist can decide whether or not you have AS, and this diagnosis takes several hours and you need one of your parents present to give insight into your development as a child.

I was diagnosed by CLASS at the age of 35, so you've not left it too late.

All I'll say is that I coped better before I had a diagnosis than after. Receiving a definitive answer to my questions made me give up struggling in some senses. Whether that was a good or bad thing ... too early to say.

Good luck with whichever course of action you choose to pursue.

And yes, I second getting this thread moved from AIBU.

PepsiBubbles Fri 18-Oct-13 22:19:03

What do I say if I go to the GP? Do I just go in there and say I think I have it, can I be referred somewhere? I guess my biggest worry is that I'll go in there, he'll disagree that I have it (especially as mentioned above I'm quite good at covering it up) and I won't get sent anywhere. That would just be humiliating.

JerseySpud Fri 18-Oct-13 22:19:21

Im very much the same as you OP and have always wondered.

I don't do well in social situations. DH jokes i am a total control freak because i can't cope with change. If something changes suddenly i get stressed and angry. I don't like being touched either. I've got used to it with DH and DD's but other people no. I can't take it at all.

I never know what to say and always feel like people see me as a silly little girl (at 28) and that no one really wants to be anywhere near me.

I also have an extremely bad habit of just saying what is n my head and not really seeing why people don't overly want to hear it. If you suspect OP go to your GP and speak to them. I daren't.

JerseySpud Fri 18-Oct-13 22:19:51

And im obssesive. To the point of extreme.

moralimbecile Fri 18-Oct-13 22:20:34

I am currently awaiting an appointment to assessed for adhd. Not the same thing but it was easy to get a referral from my gp.

I stated clearly my symptoms and that I'd checked the criteria of WHO, NICE, and DSM, and that I tick most boxes. Still waiting for the consultant appointment, but it is very easy to be referred.

Hope this helps, and good luck smile

WestieMamma Fri 18-Oct-13 22:21:00

I was diagnosed in my 30s. Getting it confirmed was one of the best things to happen to me. I know that might sound weird but it's true. It's like all the unanswered questions of my entire life could finally be answered. It was also a release from trying to be 'normal' and permission to be the way I am. To be me. Although I still have massive difficulties, I have found peace since my diagnosis.

ceramicunicorn Fri 18-Oct-13 22:22:06

I'm tempted

bump6 Fri 18-Oct-13 22:22:17

Gold mantra, how did your dd cover her symptoms?
I knew a girl years ago who I thought had aspergers, she behave so differently outside school to how she did in school.. I have often wondered how she did it.

PepsiBubbles Fri 18-Oct-13 22:22:56

Is it really necessary to have one of your parents there? I can't really see them agreeing to come along. They'd probably think I was just being silly and tell me they would know whether I had it or not. They're the kind of people who just disregard this kind of thing. It's happened several times before when it comes to anything medical - just brushed me off and told me not to be silly.

ceramicunicorn Fri 18-Oct-13 22:23:19

I'm tempted to try and get a diagnosis. Did you have any kind of counselling/ treatment Westie?

defineme Fri 18-Oct-13 22:25:47

I think if you are assessed (I know Professor Baron Cohen's team diagnoses adults) then having a name for what you have always felt will be a positive. If you do have an asd then there are support groups, books, and all manner of many things that could make you feel less isolated and understand yourself more than you do now.
The NAS website has an asd test on it I think.
For what it's worth you do seem to have a lot of the traits that my asd ds has too.
I would highly recommend reading books by Wendy Lawson and Temple Grandin, women with asds that have achieved remarkable things and helped many people.

sewingandcakes Fri 18-Oct-13 22:26:58

Hi Pepsi, I was interested to read your post. I've recently been wondering the same thing about myself; I've always felt different, really struggled with eye contact, painfully shy with most people, except those I know well, and spent most of my time reading or drawing in preference to being around people.

I'm in the process of having my 8 year old son assessed for behaviours that I think are explained by Aspergers, and in reading about it, I recognised it in myself. I'm not sure whether to take it any further, so can't offer much advice other than letting you know that you're not alone!

And YANBU!

PepsiBubbles Fri 18-Oct-13 22:27:23

If I get a diagnosis, I think I'd be the same as WestieMamma

I think it would be a relief more than anything and would explain so much. I've spent most of my life trying to change and always end up failing so if I knew there was a reason for it it would take the pressure off constantly trying to change and justify myself.

WestieMamma Fri 18-Oct-13 22:27:51

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. It just means you are more likely to get a diagnosis of PDD-NOS (pervasive development disorder - not otherwise specified) which basically means 'on the autistic spectrum but not enough information to decide whether HFA or AS'.

IHaveA Fri 18-Oct-13 22:31:26

Being a bit 'odd' is perfectly normal especially in my house grin I think it's OK unless you think it's making you unhappy.
If it is making you unhappy do you think a diagnoses one way or another would help?
Are there aspects of your personality that you don't like or that cause you problems?

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: psychiatry.ucsd.edu/forms/Mclean.doc

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.

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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