Not Autisitic enough

Even when you had the diagnosis you were hoping for there is n magic wand being waved. You don't instantly feel better.  Well you do on a level because you know you not imagining it - but it don't change things.

There is nothing whatsoever stopping you from getting hold of the books appropriate to your need and telling your friends you are undiagnoses Autism.....

You still put all the hours in for nothing, in getting to know yourself and find better ways of coping or in my case people who care when you are not coping.....

It easy to say as I was happy at my diagnosis.  But we do forget the real matter here. If you are not happy then go back to the GP and see what else there may be support for you take a list of things in with you to explain what you are not coping at.

Though I do add that point well if you are coping you are not autistic... doesn't seem helpful at all.

I'd heard about that sort of stuff: perhaps I was luckier than some in that regard.  Fortunately at school both boys and girls had to do woodwork, metalwork, needlework and home economics and the top performers in our engineering drawing class were another girl and myself.  My parents, even though fairly conservative, also provided an example where both would share in domestic stuff like cooking and so on.  I tend to assume everyone's upbringing is much the same.

There were certainly strong and unwelcome attempts to push me in the direction of "maleness" but that wasn't something that was overly stereotypical '50s Stepford Wives sort of stuff, fortunately.

Well I wanted to be an engineer or architect, I wanted to do metal & woodwork at school, I loved geometry & physics, I wanted my dad to teach me how to fix the lawnmower & take me sailing. None of it happened...I was put in a girls schol & steered towards domestic meekness. Not much you can do when you're a child, then growing up bewildered & undiagnosed, no confidence to do otherwise.

I agree in part, but I do wonder how much of a role socialisation actually plays and how much is innate.  I guess I have a slightly uncommon perspective but I would say that socialisation played a fairly minor part except for pressure to do stuff I wasn't comfortable with, although I guess the same is broadly true of other ASD people.

Edit: to be a bit less abstract, I was socialised as a male.  It didn't agree with me.

For the sake of argument, if someone had cancer, or was deaf, they might 'cope' or 'not cope' (as defined subjectively by an observer). Two people with the exact same clinical symptoms could develop very different coping mechanisms, based on their situation, experiences, support or lack of etc. 

Nobody in their right mind would go on to suggest that the person 'coping well' with deafness or cancer was not actually deaf or suffering with cancer.

This is why, when I saw that Horizon program in which Simon Baron-Cohen suggested that diagnosis should only be given to those 'not coping', I wanted to shout 'but that's completely unscientific!!!' at the TV.

Also, regarding gender, like it or not, males and females were/are socialised in very different ways whilst growing up, arguably more rigidly so the further back in time you go. Girls who were/are introverted, attentive to detail & follow rules at school probably won't get picked up. As they grow up they may well act out obsessions completely differently (which is why I'm sick of male-centric assumptions & diagnostic questions about car number plates, dinosaurs, maths, trains etc.)

Due to different socialisation, i.e. availability of socially acceptable options, girls can be more likely to obsess over, for example, collecting dolls, toy ponies, clothes, info on cute animals, and when older, info on film or pop stars, putting on perfect make up as a ritual, doing housework perfectly, repetitive crafts. I'm not saying this is always true of all females on the spectrum, just that activities like that are far less likely to get noticed as 'Aspie'.

Secondary depression & anxiety for undiagnosed AS women is almost inevitable, women tend to turn in & blame themselves for 'failure' to fit in or cope, rather than acting outwards as many males do, so again are less visible. The depressed, anxious woman who shuts herself away (perhaps hiding behind a domestic role) is very easily dismissed medically, not so much the man out there in the world, acting 'oddly' in front of a variety of people.

Women were/are socialised to be the ones who 'look afrer' and nurture others. Boys/men tend to be socialised to expect to be 'looked after', as well as having more of a general sense of 'entitlement' instilled. For example, men expect to always be paid for the work they do, whereas women are generally expected to work unpaid when performing housework & caring.

I realise this is slowly changing, and anecdotally there are many individuals these days who thankfully don't fall into these generalisations. I'm referring more to women who were brought up a few decades ago when the world was even more sexist, and still-dominant prejudices, particularly among doctors.

In my opinion, because of differences in socialisation, perception and 'sense of entitlement' women with AS are far less likely to access accurate diagnoses. This is discrimination based on gender, i.e. sexism, and people like Simon Baron Cohen who currently play into this (writing male-centric diagnostic questions, using loaded phrases like 'extreme male brain') have a responsibility to re-examine the effect their words and actions are having.

How very interesting - I had a similar experience to Atypical after being rejected a formal diagnosis - got the same crap about not having enough autistic traits etc etc .....and I can remember feeling so upset once I heard the words - 'You are not autistic' that I almost froze. I too will be considering a second opinion via a private consultation at some point in the future once I have enough cash - its good to know I am not the only one who felt hard done by. 

Well, I wish Atypical good luck but I do think it would be a good idea for her to consult a private specialist at some point in the future (if she is able to afford it) to at least explore her condition more and discuss how it impacts on her life and how it might impact on her life in the future. I think it would also be interesting to compare what evaluation she gets going private compared to using the NHS. I get the impression that Atypical is not completely comfortable using this forum because she feels she might be a bit of a fraud, not having received a formal diagnosis from her NHS visit, so from that angle, at least, it might be useful to obtain a second opinion if and when her finances permit it.

Well, I wish Atypical good luck but I do think it would be a good idea for her to consult a private specialist at some point in the future (if she is able to afford it) to at least explore her condition more and discuss how it impacts on her life and how it might impact on her life in the future. I think it would also be interesting to compare what evaluation she gets going private compared to using the NHS. I get the impression that Atypical is not completely comfortable using this forum because she feels she might be a bit of a fraud, not having received a formal diagnosis from her NHS visit, so from that angle, at least, it might be useful to obtain a second opinion if and when her finances permit it.

I am glad that Atypical has an outcome that she can work with. Neither of the possible outcomes is a bed of roses but if it gives one insight and more acceptance of who one is then there are positives to be found.

lostmyway said:

I'm not too impressed by the plethora of self-help books out nowadays promising this and that because they don't usually work and really one needs the help of a trained professional within a structured regimen to stand a reasonable chance of real progress.

I always despised self-help books but perhaps one of the reasons for that is that they are mostly not written by and for the autistic person. Recently I have found that I can pick and choose the advice and think about how the particular advice could be exploited, or not, by someone with autism.

Thanks for the defence Lost.  You are right, the diagnosis I got could leave someone very confused and doubting themselves. However in my case once I realised the assessor was not saying I didn't have autistic traits I felt much better.  Before I was doubting myself: I wondered if I was wrong to think I was better socially than most autistic people.  Once we sorted out exactly what she meant, the diagnosis (autistic treats, but not meeting the diagnostic criteria because of my social skills) actually fitted with my self-view pretty well.  So though it's been a very emotional and upsetting journey, I have got what I think I most needed in the end.

I am planning to write an email to my assessor to say that I think just saying 'your not autistic' was the wrong way to tell me, as it sounded like I was imagining it all. If she'd given me the longer version first I think I'd have been much less upset.

I might get a private assessment at some time in the future, but I'm not considering it any time soon.  I needed some validation, and in the end I got it.  Putting myself through the process again right now seems pretty pointless.  Maybe sometime in the future when I have the money to choose where I go (and maybe when the diagnostic process has improved) it would be interesting to find out more about my brain.  But I've got my validation.  I've got people telling me I can still post on here.  I'm getting a bit of paper saying I have autistic traits: all good stuff! Diagnosis is a luxury: it wasn't available for people like me when I was a kid.

More points on diagnosis: at the moment we don't know what autism actually IS. As such there's no blood test. There's going to be a grey area and I'm in it!  The current diagnosis is largely based on social skills. Personally I suspect that poor social skills are a secondary effect of having an autistic brain, with sensory issues being the primary symptom (sensory overload interfeering with learning social skills). But sensory issues have only recently been included as part of the diagnosis at all!

One of the primary theories of what Autism IS is that it's having more neurons and connections in your brain. Normally during early developement the brain grows massive numbers of connections.  These are then 'pruned' (lots of them die) leaving whats needed to work 'efficiently'. In Autistics (or at least some autistics) less pruning happens. As a result the brain continues to respond to stuff that neurotypical brains don't, hence the lack of a 'filter' for our senses.

So, there would be a spectrum in terms of how much pruning happens. Interestingly there's even some recent research that suggests schizophrenia is caused by over pruning, in which case they are the other side of neurotypical in this respect!

Also this might interfere to greater or lesser degrees with learning of social skills: more 'noise' and input making it difficult to pick out the relevant stuff to learn. Different enviroments would also influence how much social skills kids managed to learn.

I don't think autism gets worse: but I am thinking that as you get older there may be aditional problems with health and isolation that make it harder to cope.

I also think it's quite posible that the reality is that there's several types of autism, and we'll find that out as we learn more about the brain. For me the 'overwiring' model fits, and I do believe there's a spectrum according to the amount of wiring and the effect it has on development.

I also feel there's advantages to being overwired. If neurotypicals are not aware of a lot of the things I'm aware of, to me that sounds like they are half deaf and blind. Their world must be a bit dull.

PS: I wouldn't mind getting my glasses paid for though.

lostmyway said:

you cannot be slightly pregnant

Exactly so, but then pregnancy is never referred to as a spectrum condition. Some things are best understood as having degrees of affect - intelligence has an IQ scale that varies around the population average, emotional intelligence (one way of thinking about autism) also varies, hearing and sight loss also have degrees of impact and we expect to buy our own glasses if we are slightly affected but expect much more assistance if we are totally blind.

I take your point recombinantsocks, and it's all very well Atypical being told she is functioning well enough not to warrant some form of help, but this to me, seems a cop-out because, as I said, you cannot be slightly pregnant, you are or you are not and to be marginalised like this seems to be sending the wrong message to her. She is clearly not too happy with her experience else why is she considering consulting a private consultant? If I was told what she was told I would start to question whether I really did have a spectrum disorder and perhaps even tell myself I might even be exaggerating the whole thing. It's right that people who are managing their condition pretty well should not be receiving help before others who are really suffering and need help but does that then mean they are not entitled to some form of therapy from a trained careworker? 

I'm not too impressed by the plethora of self-help books out nowadays promising this and that because they don't usually work and really one needs the help of a trained professional within a structured regimen to stand a reasonable chance of real progress. As you know, Aspergers does not simply go away and therefore will not clear up and perhaps may even deteriorate over time, I don't know, so to tell someone they basically have to get on with it is just not good enough in my view. And the problem is that if Atypical found her problems getting worse at some point in the future she might well not feel she would be entitled to seek help from the NHS after being rejected in the first case. I still think that underfunding must play a part in choosing who gets a proper diagnosis and who doesn't and I feel what the NHS has done here is to move the goalposts. All this, to me, is just one more indication how the NHS is unable to cope and is pushing people to use private services, i.e, the creeping tendency to privatisation.

I think what Atypical really seeks is an official diagnosis of her condition so that she can then move on and manage her life. At the moment she is not very sure about her difficulties, it seems to me, and without being told she is definately within the autism spectrum will not quite know how to manage her life in the future.

Yes, the mental health side of the NHS is woefully underfunded but that does not determine whether one gets diagnosed with a condition. The underfunding causes delays in diagnosis and it causes shortages in the resources required to help people with problems but I have seen no evidence of them erring one way in their diagnosis decision because of funding.

Diagnosis depends on someone having enough of a problem to require intervention. If you are managing fairly well (this is a very grey area) then you do not need intervention and you should not get a diagnosis. If you have consequential mental health issues, issues holding down jobs and getting into work or staying employed or issues keeping out of prison (this is not an exclusive list!) then you need intervention and you should get a diagnosis.

Lots of people could benefit from greater insight about themselves and have scope to making more of their lives - the self-help section of a bookshop will always be busy and bursting with offerings in that area. The NHS doesn't cater for those people but instead concentrates on people who need intervention. People with autistic traits who manage their lives reasonably well (this is not a high standard - think of the average character on EastEnders perhaps) do not fall into this category. I'm aware that I am at the very high functioning end of the spectrum and I only got into the system because of major fallouts at work (physical objects and insults were getting hurled around the office) that lead me into dark mental places and a progressive failure to cope with work etc. My contact with other diagnosed people through the local autism service tells me that most people in the system with a diagnosis are actually right at the margins of society, they are really not coping with life at all well and are in dire need of help. It seems to me that the right people are getting diagnosed and that those who would benefit from some greater insight might well be able to look after themselves at their own expense. Now, I am absolutely unable to make a judgement about whether Atypical or LMY are in greater or lesser need than myself but I think it is clear that diagnosis has to be judged based on the individuals need for intervention rather than on them having the traits of autism.

Atypical, I think you probably are an aspie but the problem here is that because of the disgraceful underfunding of the NHS in general and the lack of mental health provision in particular, mental health carers feel compelled to ration what resources are available to cases that are judged as urgent. In other words, if it seems you can function faily well you won't be judged as being within the parameters that have been laid down that effectively screen out people who would otherwise be classified as well within the definitions of the autistic spectrum. I can understand how frustrating this must be because it is only natural to want to obtain an official recognition of what you feel is your condition and be able to move on and the only course seems to go private if you really feel very strongly about it. This would be very expensive but, perhaps, it would be a good investment if it sorted out your life for the future. The alterntive is to continually live in doubt forever, something that wouldn't seem very helpful to me.

When you think about it, the autistic spectrum covers a large number of individuals and the question over where the cut-off point occurs must be a vexed one because how can someone be classified as autistic if they score a few points one side of an arbritary point and not autistic a few points the other side of it? It is obviously not quite as simple as that and it has to be viewed as a relative condition based on how problematic an individual is experiencing it in relation to the remainder of the general population. It's kind of like saying somebody is 'slightly' pregnant; you either are or are not! It's all relative. This is probably why psychology is not considered as one of the 'hard' sciences (such as physics) but more of an art that uses scientific measuring techniques and you have to wonder how acurate such techniques really are.

Thanks for your answers. Though it was a massive shock at first, I think that was partly because for a moment I thought I was getting the worst news: that I was imagining it all, deluded etc.  Talking more and realising she did acknowledge I had autistic traits I realised that really what she said matched with my view of myself.  So can't really complain, and it is nice to hear my social skills are ok. I was actually wondering if I was kidding myself on that, and I was worse than I thought. So that's great to know.

I also think I'd have been a bit upset whatever the news was: it was always going to need some getting used to whatever the outcome!

And it's great that people can still accept me on here!  I still think I have a 'different' brain.  Maybe in future I'll have another go at finding out more about it, but I think I won't do that until I'm really in a position (ie money to go private!) where I can chose where and what assessment I get.

Hi Atypical,

I'm really not sure whether to say I am sorry that you didn't get a diagnosis - if they have judged it correctly then this means that you don't have enough problems, arising from the traits, to need treatment i.e. this is good news! I think you should absolutely continue to post here and feel welcome and at home, if you have successfully developed enough coping strategies and those strategies give you more benefit than stress then you are well placed to help nudge other people in the right direction.

Pixiefox, very reasonably, raises the question of not wanting a disabled label. I think that there is stigma and prejudice that applies to this label even now. The "does he take sugar" attitude needs to be unpicked, dismantled and buried. One of the problems with it is that it used to apply only to people who were severely and obviously disabled. Disability is a spectrum that goes from the people in a vegetative state to people who actually just need a hand up to enable them to function effectively and happily in society. I am trying to make myself comfortable with the disabled label as I am "autistic enough" to get a diagnosis of autism and therefore am able to claim protection from the Equality Act. I do need a hand up (i.e. Reasonable adjustments to manage better with work and social life) and I do need treatment/advice etc to help me work how to deal with being on the spectrum. I don't need PIP or anything like that but PIP is (correctly) awarded on actual need rather than on whether you have the autism label. Having a disability doesn't mean that the overall net worth of yourself is negative, it just means that you have one problem but you are still free to have many assets.

Although I am "autistic enough" I don't really think there is any difference between me and Atypical and other posters on the thread who have been judged to not qualify for this "privilege" of diagnosis. I am male (a disability in itself in some minds!) and I suspect that the impact of autism is moderated by a bundle of other attributes that allow many people to have straightforward and unchaotic lives with the traits whereas others have traumatic and chaotic existences. Some people will fall into the grey bit between these extremes and it is hard to work out whether one is far enough along the scales to tip it in favour of diagnosis.

Hello Atypical 

I'm so sorry to hear how distressed that situation made you feel. 

As I posted earlier on this thread, I did not take up the offer of a referral from a GP and after reading more about the diagnosis process I know that I made the right decision for me. I'm sure I would have been devastated to go through all that and be told I'm "not Autistic".

I understand completely why you sought a diagnosis, but for people like you and me (also female, aged 55) we've learned to cope so well that many of our traits are "masked", particularly when we're dealing with people we're not close to. 

I've just finished reading a book written by an "Aspie" which is a guide to self-diagnosis. The opinion of the author is that there are many undiagnosed Aspies /Autistics who manage to get jobs, have one or two close friendships and maybe a partner. Some even have a social life and/ or children too. But that doesn't make us neuro-typical. We are born with brains that function slightly differently to the majority of people and we know we are "different". 

Learning about the challenges of autism has made me feel proud of myself. Despite the fact that dealing with people all day is very tiring I manage to work and my analytical, creative mind makes me better at some tasks than my colleagues, which leads to praise for the results I produce. Despite finding it difficult to learn in a classroom environment, I've managed to gain useful NVQ qualifications in learning support and accounting, an open university diploma and a Certificate in English Language Teaching to Adults.

I no longer feel guilty about turning down invitations to work social events, as I understand that there is a valid reason why I don't enjoy them and I don’t see why I should feel bad about not doing something that makes me feel uncomfortable. I'm polite when turning down the invitation and happy to tell people it's because "I have aspergers" if they are curious as to why. I thought colleagues would say something along the lines of "you can't have aspergers, you don't seem Autistic" but they've been surprisingly accepting. Two of my colleagues have relatives on the Autistic spectrum, so they understand a bit better than many other people. 

I don't want to be thought of as "disabled" so if I talk about it I explain not only the challenges I have (e.g social exhaustion, sensory issues, becoming overloaded when stressed) but also the strengths it gives me (such as analytical and creative thinking, attention to detail, high levels of accuracy). As well as the natural abilities I've also learned good communication and organisational skills over the years.

Keep posting here - everyone seems very accepting of each other and I hope you continue to find it useful and informative. 

Take care 

Pixie 

Hi all.  Not posted for quite a while, and I was coming on to post my own post, but this seems the right place.

I used to post a lot last year, but as I wasn't diagnosed I always felt I might be 'a fake' in some ways giving my experience or opinions based on my experience.  Still I found lots that I related to here. And considering myself as autistic helped me deal better with problems I have such as meltdowns. And I felt that maybe having an official diagnosis would help with problems I have in real life: a few messes with finances and paperwork which people might possibly be more understanding about. I always knew that I had less problems than many on here with communication and social skills, but maybe that's because I'm female, had a life that has taught me strategies etc etc.

So I was delighted when I finally got a referral after several dead ends.  I didn't post on here, looking forward to coming back with my official 'autistic' badge. Of course I kept reminding myself I might not get it, might even get told I was imagining it all.

I had 4 hour long appointments in all: an initial screening (apparently mostly to make sure I wanted to be diagnosed!). I also had forms for my family to fill for that: got the courage to ask several family members and did one myself. Then an appointment with an expert, then with her again for ADOS.  Yes, I got one... Finally a few days ago I had my feedback session to get my diagnosis.  A couple of weeks after the ADOS, so it hadn't been a pleasant wait!  On the morning I could hardly eat, which is not normal for me.

So finally, sitting in the chair, and I hear the words 'I don't think you are autistic'.  I was just so shocked.  I just closed my eyes and cried.  I'd tried to prepare myself that might be the outcome, but when it came I basically went into shutdown, which is very rare for me.  Just closed my eyes and withdrew. Anyway after much talking (next appointment cancelled, so I think we were actually there for getting on for 2 hours) I eventually realised it wasn't quite so bad as I thought.  She didn't think I was imagining it all: my official letter when I get it is going to say something like I have autistic traits but don't fit the diagnostic criteria.  In her definition you are only on the autistic spectrum if you are diagnosable.  Autistic traits are not enough for that 'label'. So she wasn't saying I was imagining my difficulties with organising, meltdowns and sensory sensitivities... just I was too socially skilled and imaginative to be diagnosed autistic.  Not so far from my self diagnosis really... and nice to know in a way that I am reasonably skilled socially, I was begining to wonder if I had that wrong and was worse than I thought!

So I can't really say the diagnosis is 'wrong'.  I think maybe a different diagnostician might have made a different choice of what side of the line to put me?  But I can't face putting myself through fighting for a second opinion when it's close.  If she had said I was imagining it all... but she didn't deny my traits and problems.  Maybe one day when I have the money I'll go privately to the best expert I can find for diagnosing women.  But for now I have to live with the result I've got.

So here I am, without an official 'autistic' badge. I'm hoping that people can still accept my thoughts and opinions from my experience as someone with 'autistic traits'.  I am well aware that I'm better off than many on here with having better social skills.  But I'm still hoping there's still a place for me here.  I find this community is useful to me, and hope I can be useful to others here.  So hopefully I'm still welcome?

(PS: she did offer me counselling, since I was so upset.  So I'm being referred for CBT, as I've found it more useful for me in the past than straight counselling).

Autistic traits, are not in and of themselves solely the property of Autistic people.. they are often extreme examples of common traits.  To that extent, it is possible to have some Autistic traits, but they might not have an overwhelming affect on your life.  

To have found ways of managing or coping with your difficulties might suggest that they are not overwhelming you.  In saying that, I mean no disrespect nor do I seek to minimise how much they can affect you, just that for me, only a total avoidance of situtions works, I can't "manage" a situation that I am incapable of understanding.

Having myself only just been formally diagnosed (yesterday) with Asperger Syndrome at the age of 60, there are so many social situations that I have no ability, even at my age, of coping with without sever anxiety and running away.

In your situation, I would ask my doctor to refer you to a psychologist, and ask that psychologist, as I did, to talk you through your life and how things affect you.  After 5 sessions my step 4 psychologist gave her opinion as Autism, and asked for an assessment for me..

It's always worth persuing something if you feel in your heart that it will help you understand yourself better. It took me 20 years of psychiatric "help" before I got an answer to my problems, so don't give up.

Hi JennyRobin,

I was assuming that the mental health team would be the only option for providing CBT etc. However, on reflection, I am not certain that this is actually true. I would think that the GP could prescribe CBT and have that provided by counsellors who have some understanding of ASD.

Ultimately the GP is responsible for her mental and physical health so the GP must provide the appropriate care.

This also has a bearing on those who do not have a formal diagnosis. if you need help with mental heealth issues then the GP has to make sure that you get the approropriate treatment regardless of having a formal diagnosis.