Is going through the diagnosis process worth it?

Good grief. bf1 I am reading this thread because I am about to make my first visit ot the gp to ask for a referral to get diagnosed, but seeing it took you 2 and a half years has made me think again. That's shocking! When my son was diagnosed with Aspergers at the age of 11(in 2004) we were on a routine visit to our paediatrician who he was seeing due to speech and communication difficulties and dyspraxia, and we mentioned we had been reading about Aspergers and felt that it might be a more appropriate diagnosis for him and she agreed. she didn't do an ADOS or any of the other tests, she just said, yes I think you're right and that was it. I assumed it would be the same with me.

Good grief. I am reading this thread because I am about to make my first visit ot the gp to ask for a referral to get diagnosed, but seeing it took you 2 and a half years has made me think again. That's shocking! When my son was diagnosed with Aspergers at the age of 11(in 2004) we were on a routine visit to our paediatrician who he was seeing due to speech and communication difficulties and dyspraxia, and we mentioned we had been reading about Aspergers and felt that it might be a more appropriate diagnosis for him and she agreed. she didn't do an ADOS or any of the other tests, she just said, yes I think you're right and that was it. I assumed it would be the same with me.

Here we go.

For Macmillan I do book reviews.  I think they use them to inform their own libraries and to decide what to recommend to patients.  I've always enjoyed reading different types of books.  There's a range of books on the review list so I get to learn about different things.  There are quite a few that are about people's personal experiences of cancer but I usually don't go for them.  I've had my own personal experience, which I found doesn't relate to other people's experiences that well anyway, but I don't feel the need to read a book about someone else's personal experience.  

I've heard the thing about cats too.  I found that odd as everyone says that I seem to be able to understand our dog in ways that other people don't.  Apparently I know exactly what he wants.  But I think what has happened is that I've observed his behaviour and learnt what it is he's trying to communicate.  So I guess I'm very well practiced at that having done it all my life in social situations with people!!!  I suspect the comparison to cats is probably more correct.

Ah I see what you mean about the books, the content being appropriate to the audience at that time and the serialisation of them.

I've heard that too about having to sell yourself more than the book.  It may have always been the case but I wouldn't be surprised if it is even more the case now.  You'd probably need to employ a PR consultant to do it all for you if you were serious as they would already understand what works best.

I'm doing a couple of different types of review at the moment, but they're confidential so unfortunately I can't tell you anything about them.  When they're published I'll tell you it was me!!!  One of the reviews involves a lot of data so I'm particularly suited to that one.  Most people would find it very dull, but wading through lots of similar data and organising it is one of my skills that I also happen to enjoy.  So it's win-win: I enoy doing it and someone else who finds it dull doesn't have to!

Hi Flux

There's a course on Futurelearn at the moment called 'Understand Autism'.  In it they've talked about 'double empathy'.  As far as I can see it's recognition that someone with autism doesn't intuitively empathise with someone who is NT, but similarly someone who is NT doesn't intuitively empathise with someone with autism.  On that basis to suggest someone with autism cannot empathise isn't necessarily correct.  

The suggestion seems to be that in a roomful of people where only one of them is NT, then would they be able to empathise with anyone else in that room or would they have to observe everyone and learn how to react but never totally be able to empathise?

I'm not saying that they wouldn't be able to, but it does put a different perspective on the whole concept of suggesting that someone who is autistic can't emphathise.

Then there's how you express empathy.  You've described a situation where you feel that there is a time factor, so perhaps you need to have time to process things.  In which case it's not a lack of empathy, it's just a different process or a different way of expressing it maybe?

They're also making a point on the course of saying that each person with autism is different so you can't compare one person with autism to another.  So that counsellor you refer to probably could do with understanding that!

I believe the tomatoes are meant to be snow white, but it depends on how much sun they get.  The way this comment box has come up means that I can't see the rest of your comments in that particular post at the moment and I can't remember everything else you said in it without being able to read it.

Hi Capers123

You've not wandered off topic at all.  I can see why you've shared your story as we were discussing health issues and how our reaction to them doesn't appear to be the expected one.

Your response to what happened with your daughter is understandable to me, though I won't suggest that I know how you feel as that is your own experience.  It shows to me that you really care as you were trying to find the best possible way to look after her.  Looking after someone doesn't necessarily mean throwing as much treatment at someone as possible.  It's also looking at what is best overall and you can't make that decision without trying to understand all of the issues involved.  So it doesn't sound cold and heartless to me, it sounds like there was a whole lot of heart involved.  

It may not be the way that a lot of people might have approached the situation, but it doesn't make it any less an emotional experience for you.  How you express your emotions is just different.  The doctor involved just made an observation.  It doesn't mean that they thought that it was cold or heartless, it was just an observation they made at that time.

I have to admit that I also seek the information out that is directed at the medical profession. I read the stuff that's aimed at patients and there's not enough detail in it for me to understand things at the level that I need to understand them.  I usually have more questions than I had before I read the leaflet aimed at the patient.  I don't understand how anyone can read those leaflets and find them to contain sufficient detail!!

Hello Capers, sounds as if you've had a lot to deal with. I'm not sure people with Asperger's have the "wrong" emotional response to emotionallly difficult situations. They just don't serve up the "right" one when expected - but I can only speak from my own experience. I know what to do and say, but it feels insincere because at the time I'm not feeling it, because my empathy levels are zero face to face. That doesn't mean I don't feel sympathy. I think feeling it "live" is what people not on the spectrum mean when they talk about empathy. But I apparently don't have it so I can't tell.

Hope your interview with your GP goes as you wish it to. I thought mine was going to play it down, but when we got talking he became convinced enough to refer me for Asperger's appraisal - if that's the right word - well, there are tests! Unlike a counsellor, who told me dountfully that she had a client with Asperger's and I was nothing like him. And not being believed is the first hurdle to diagnosis - or was for me. I'm sure most people I enocuntered in my working life thought was I just eccentric or difficult, and could have shaped up if I really tried.

Good luck with it

Hi, Katfish & Flux. 

I've got an appointment booked with my GP next week to ask to be referred. I'm mid-50's and like you both, have a number of health issues.

Sometimes I find people think I'm joking when I tell them factually about my cholesterol level (was 18.9 - thanks dad for that FH gene), or the several angioplasties over 25 years - or that the last one took 2 hours but they couldn't get through the blockage before I'd had too much radiation), or the diabetes (thanks mum). 

I quite like the health professionals, especially once they talk to me at a level that gives me enough information for me to make my own decisions (i.e. more than the average punter).  I even attended a Heart UK cholesterol medical conference which I found fascinating - so much information to absorb :).

20 odd years ago, our eldest daughter had severe problems during the birthing process. My wife (who is probably within the Aspie range) and I had to decide if support should be withdrawn from her to let her die, or to keep her alive but very poorly.  The consultant involved seemed quite surprised by our (especially my) attitude - for although we know there was an approriate emotional response, my main aim was to be learn as much as we could be, so we could make a rational, logical response.  He said that he'd not known anyone take such a celebral approach to the matter (I've just thought that maybe 'celebral' was an inapproriate phrase, given that brain injury was one of the problems).  Maybe it sounded cold and heartless, but to us we were making the best possible decision in the best way we knew, for our daughter. 

Sorry if I've wandered off topic.

A white tomato! Like snow? Or whitish like a white rhino? Never seen green cauliflower nor papalo. My food tends to be ruled by routine - broccoli, beans, chic peas, fish and chicken, veggie grills, bread I make with a maker, espresso coffee for cappuccinos, tea - rotating menu, set times. Not that I won't try new things of a diabetes friendly nature - lowish GI, not too carb heavy -, as long as they turn up at the right time, important for diabetes and my head. When I see all the weeds growing I regret there aren't more of them we could eat. I mean apart from chewing grass.

To what end do you read books for Macmillan? I mean, why do they want you to read them? (Dear Macmillan. They have an out patients' facility in the hospital I attended, and when I was far sicker from chemo than I'd ever felt due to cancer they took the whole weight off me.  They got me admitted to a ward the same day, sick as a dog but relieved beyond measure by the kind and understanding way they took over when I staggered in.)

I'm sure support groups are useful for most people. I do envy people ease of interaction with others. On the other hand, the group is an alien beast to me. Someone told me that there was a tongue in cheek theory that cats all have Asperger's. It suddenly occurred to me today that it must seem odd that I will get up and leave a social group without explaining myself, to be somewhere alone,  and how much like the cat that it is.

As for tests - I was told I could live another 20 years with after care. I don't want 20 years of measuring out my life between medical appointments. So I'm just being open ended about it all. When you're dead it makes no difference how long you lived.

I have read The Moonstone and other Wilkie Collins' novels, but can't remember them much. Ditto Elizabeth Gaskell, but I can't remember much about them either. Many (most?) 19thcentury novels were issued in parts. Dickens for example. I suppose novels were much like soaps today. People are nosey, and a dinner in a mill owner's house would be of interest if that's all you had - no photos, no TV, no internet. And parts meant poorer people could afford them.

I published a novel on Kindle and had a couple of poems in a paper and magazine. A novelist of my acquaintance read one of my early stories and said it was entertaining and / or funny, but it needed editing down and I needed to sell myself - not the book! I can't sell myself. I haven't the foggiest who I am, and I have no wish to create a persona for public consumption, even if my work would interest people.

Who do you review for? And what kind of writing?

There's not a Lidl or Aldi near me at the moment.  Though there's talk of building one a couple of miles from here.  So I'll have to look out for one when I'm out and about.

I'm also told I'm a coffee snob and I really don't get the 'proper coffee' chains that can't make proper coffee anyway.  I went in one and asked for a filter coffee only to be told that they didn't have any.  Huh, how does that work then?  I like independent cafes who have filter coffee all the time and do free refills.  That's how to do it!

I guess with the medical tests it depends on whether it makes a difference.  For me I'd have to be symptomatic for further treatment, so there's no point having the tests anyway.  But some types of cancer are more 'silent' and as such the tests can highlight something that can be treated before it becomes symptomatic.  But I know from discussions on the cancer forum that even with the same type of cancer we all seem to be taking a different approach.  So we can all only do what we are most comfortable or content with doing.

Hmm unusual veg.  I'm not sure these days as supermarkets seem to try to stock all sorts of things.  This year I've planted some seeds for white tomatoes, tomatilloes and a herb called papalo (which is meant to taste a bit like coriander).  I also got some green cauliflower that grows with a spiral shape, cinnamon flavoured basil, a different type of beetroot.  So I try to grow things that I think I will like but you can't find readily available.

I've also got some more usual veg.  A friend gave me a load of different types of beans to plant.  I also managed to get some seed out of a shop bought butternut squash and some chillis a couple of years ago.  They did grow last year so I collected some more to plant again this year.  Free seeds!

My blueberry bush wasn't very good until I put it in a pot with ericaceous soil.  This year is the first year that there are loads of fruit starting.  Just hope the dog doesn't try to eat them before I get to them like he did with my raspberries last year.

I play tenor sax! I learnt when I was at school which is possibly the best time to learn because there's a lot of structure to encourage you to keep going.  So I do tend to like lots of music with sax in it.  Jools Holland does some great arrangements for sax.  As does Mark Knophler (duetting with guitar).

Someone bought me a CD collection of sax pieces which bridges the period between the jazz age, big band and rock n roll.  Some of the pieces from the 1940s sound very like the rock n roll of the later 1950s when it was supposedly 'discovered'.

I like a bit of Dylan too.  I think I like music that says something or has some kind of meaning.

Have you read Wilkie Collins 'The Moonstone'?

I just started reading a book called North and South which is meant to be a social commentary on the treatment of workers in the industrial north in the mid nineteenth century.  Although I'm finding it a bit slow at the moment.  There's been a lot of walking around in the countryside and eating dinners so far.  Not sure that really brings a book alive!  But I believe it was written as a series and as such may not read as well as a whole book.

I also read books for Macmillan Cancer and write book reviews.  I'm not sure what to say about the one I've just read. I don't think I get the point of it.  You do get to keep the books afterwards so I'm getting quite a collection.  I think I'm going to take some of them to the local library to see if they want to put it in their healthy books display.  Although a couple of them I wouldn't recommend at all.

Have you ever had poetry published?  You mentioned a novel earlier that was published online?  There are independent publishers who publish short stories and poetry.  Do you subscribe to anything like that?  Or have you got a poetry blog online?

Hello, Katfish. Aldis or Lidls do a packet of individually wrapped plain choc wafers that work for me as Terry's taste alikes.

I will sometimes drink instant coffee for a quick caffeine boost, but when it comes to real coffee drinking, I'm like a wine snob. As for the stuff some everywhere coffee shop chains have started serving! Tastes like farmers' wellingtons. They should be ashamed.

I stopped medical tests because  if my body can't be healthy with the amount of broccoli, blueberries and exercise I inflict on it then it never will be. And I hate people knowing things about me before I know them.

What's an unusual vegetable? I'm hopeless at growing. I had a blueberry bush with one berry. My broccoli was doing fine until catterpillars stripped it seemingly overnight. I've got an acer tree that's doing OK. As for the rest, we have large unidentified bushes that were there when we moved in, flower occasionally, and grow like the broccoli ought to have.

I listen to music but can't play it. I bought a saxophone but ended up giving it to my mother-in-law. Our three years old granddaughter makes a better sound on my guitar than I can. What sort of music do you like? I have mostly jazz cds and a lot of singer songwriters like Bob Dylan, Neil Young, Van Morrison, Lucinda Williams and so on.

I do read novels - 19th century, modern detective mostly, although I can go through three or four novels by modern authors like Pamuk. I used to read and write more poetry than I do now. Phillip Larkin, Heamey, that kind of thing, evocations of everyday life. My real father was a poet, which raises interesting questions about genetics - I came from an unpoetic home situation but wrote like the proverbial chimp who given a typewriter and enough time would write the works of Shakespeare.

What do you read? What do you analyse? I like order but that's a given.

Oh wow I haven't seen Terry's dark choc wafers for years.  Now I'd really like to be sitting nibbling one but don't know where to get one from. Although I think my absolute favourite is a dark chocolate orange.  Never quite got the 'tap and unwrap' thing though. Usually it's whack it off the kithen counter, unwrap and then go at it with a knife.

I see what you're saying about the Aspy group.  I must admit I'm a little uncertain about whether I'll find it helpful or not.  But I'll never know unless I go.

Similarly I have trouble following conversations, particularly if it's more than one to one.  I just can't follow the conversation as it moves too fast for me.  If it's a large group of people with several conversations then I have no chance and tend to switch off.  And then someone asks if I am alright.  Well not really but how do I explain that I can't really follow the conversations like everyone else can?

Why did you decide not to go to any more follow ups?  I still go to my follow ups, though there's no scans or treatment until I have symptoms again anyway.  Similarly I don't identify with the concept of 'battling' cancer.  I find it unhelpful to think in those terms because it implies a struggle or a fight against your own cells.  I also didn't like being called a 'survivor' by a nurse without being asked if I identified with that (which I don't).  Clearly some people do identify with these things but it would be nice if there was recognition that not everyone does.

I must admit to having a penchant for a bloodthirsty story.  I was talking to friends a couple of weeks ago about what we'd all been watching on TV lately.  Everyone just looked a bit horrified by my list of things, particularly when I was happily explaining what they were about.  Do you also read a lot or are you more interested in writing?

My interests - hmm, they do change with the season, though I do often come back to the same ones each year.  Over winter I tend to be more musical but over summer I grow vegtables (usually I hunt out unusual ones to grow as I like to prove people wrong when they tell me they won't grow!!).  Always challenging perceptions????!!!!  I've been trying to learn new languages for years, but it's something that doesn't come easily to me at all.  I tend to be able to read it ok but the talking just throws me.  I"m also doing some analytical research at the moment to use my analytical brain cells and keep them happy.

Mmm coffee, but it's got to be freshly brewed.  Can't stand freeze dried stuff because it just tastes stale.

Hello, Katfish. Chocolate! Now you're talking. Since I gave up cigarettes and alcohol, chocolate is the thing, and coffee. 85% chocolate and espresso. As far as bars go - Terries' plain chocolate wafers; but being diabetic I have to be careful. But not too careful.

Your experience with the cancer group is what puts me off joining Asperger's groups. One professional in the field told me that when people with Asperger's get together they all talk about their own interests, no one listens to anyone else, but they enjoy it. I do like the allusion that someone listens to me. So the written word is ideal. No one can cut you off or yawn in your face. I've known NT people listen to me holding forth for a while and then just cut me off in mid sentence way, which is probably understandable from their side. Especially as I sometimes don't respond to other people if they go on too long, because I don't process information as fast as them, which must look as if I'm rude or stupid. For years I thought I was deaf, then one day I realised I just stop listening because I can't keep up, and if there's more than one other person, I get left out, because the smarty pants NTs just talk to each other.

So, yes, if we could find people who share our interests the chances of dialogue would be improved. What are you interests?

I had the cancer op, and then the chemo, and then some follow up, and then decided not to carry on with further tests, so I don't know if I'm "out of the wood" as the doc put it, because out of the wood was two or three years away. To crib the grafitti, I'm immortal - so far. Ditto diabetes tests. I really can't relate to the idea of "battling" cancer. I've been lucky. No one's told me I'm inoperable, just that I may be found to be if I discontinue tests.

Having said that, I can't pay enough tributes to the NHS staff who looked after me, and the Macmillan people who looked after me when I first presented with chemo problems.

My novels mostly involve people with issues from childhood, as a way of coping with my own. Oh, daddy, why did you run out of me when I was a baby? And why didn't anyone tell me the man I called dad was no such thing? Etc ad nauseumn. And also about the baddy getting his comeuppance, sometimes somewhat blood-thirstily. But hey ho, Shakespeare was bloody too. And I'm alive and he isn't.

Hi Flux

Your comment about the lack of emotional response is something I can relate to.  I've found that people don't entirely understand my cancer diagnosis initially and I couldn't understand why.  My sister told me that it's because I tell people in a 'matter of fact' way which means they don't pick up on the scale of it (I've still got it and it's untreatable).  But to me it is a matter of fact.  I do have cancer, it's there and moaning about it isn't going to change that.

Similarly my oncology doctor speaks to me differently to how she speaks to other patients.  I told her to speak to me candidly from the start.  She does so, and told me that it's different for her to do that because she had been told by other patients that she was too blunt.  I prefer her to speak to me that way because it means I know where I am.  If someone says to me 'everything will be ok' I just don't get that comment.  Why will it be ok, what do you know that I don't???  She's never said she thinks I'm autistic, but I'm so glad that she picked up that she can speak to me the way she does without having any kind of label involved.

The cancer support group was something I didn't want to go to anyway but was ushered there by one of the leaders of the group.  I didn't find it helpful at all, though everyone else seemed to be engaged with it.  I found myself biting my tongue a lot because I didn't think that I could say what I was really thinking without causing offence (I guess because I have learned from experience that I often say something that confuses other people or that they don't relate to).  There's an extra layer of sensitivity in a cancer support group I think, so I found I was even more on my guard than usual.  I came up with a polite email after the first group to say that I didn't think I'd be continuing with attendance.

I like your comment (don't know if I was meant to like it or not!!) that you "want to spout inaninities and chortle at trivial pleasantries" which is how I see a lot of socialising too.  I'm often jealous of how easily some people laugh at things that I saw coming a mile off or it's a punchline that has been said many times before so why would I find it funny the tenth time around?

I think I can talk about things that other people think are inane.  I remember at work there were two of us who could talk about the qualities of different chocolate bars for hours, i.e. the texture, which has the best mix of crunch and smooth, the quantities of cocoa solids, etc.  Yet I can't get into a conversation about stories in a soap opera for any longer than "no I don't watch it" (seemingly a popular topic of converstion in an office).

Similarly I think to say an NT is 'normal' as opposed to non-NT isn't right.  NT is just more common maybe?  But there's no such thing as 'normal'.  It's just that we tend to be the one that isn't NT if in a group of people.

Maybe we should each start a conversation on this group about things that interest us that we would like to talk about.  It's so rare in everday conversation that I find someone who likes to talk about the same stuff as me to the same extent.  I wonder if there would be enough of us with the same interests to be able to have those conversations on this forum?

Flux - what kind of novels do you write?

Hello, Katfish. I can relate to some of your problems, maybe. I developed diabetes, then had an op for a twisted bowel, then had an op for cancer the following year, and the year after that was hospitalised for a week due to adverse effects of chemo. After this I began wondering if I was somewhere on the autistic spectrum because I had no emotional response to this run of problems. My GP made a gesture that I read as "me too" when I said I didn't like socialising. To be fair, he made an effort to get me referred for assessment, to the extent that one of the people I saw due to his efforts commented on it. After seeing a psychiatrist - who believed I had Apserger's - I was referred for further assessemnt, and several months later I was diagnosed. I think I thought it would be a turning point, but it hasn't happened like that. The idea of socialising - at the risk of sounding melodramatic - horrifies me. Yet I feel my isolation. I write novels, which I don't even try to get published (other than one on Amazon), but they mean I can create worlds I control. But you can't write fiction and go for walks with your wife every waking hour. I do envy NT people. I want to spout inaninities and chortle at trivial pleasantries, which is how socialising looks and sounds to me. I don't see neurotypical people as "normal" as opposed to my oddity. But it sure looks and sounds easier than looking at a family group sittimng round a dining table and feeling as if I'm watching a play that I can't step into becaue no one gave me the script. I'm 67 and putting all my money of reincarnation, in the hope I can have another go round.

I was diagnosed with the condition this year at 67 years old, after a meeting with GP and psychiatrist and then with  Learning Difficulties. I see it as a navigation aid. But it hasn't helped with feeling isolated and stymied as far as social interaction goes. I have been referred to a support group but can't get myself to contact them. My interests are so specialised and my aclimatization to people takes so long, I just go with what I've got. Luckily a supportive wife.

bf1 - what a fantastic story.  I wish I could hear of this happening across the country for people for all sorts of reasons.  We really need to start looking at the 'can dos' of a situation rather than the 'can'ts'.  Your employer sounds like a good one who is helping to challenge unhelpful perceptions.  Yay.

Thank you all for your considered responses.  All of them are very helpful to me.

I don't think I'm concerned about doing the assessments themselves.  I think the bits that I'm anxious about are having to try to convince people to refer me to start with, knowing how to explain to people why I think I'm autistic and what I would do if I was told that I wasn't autistic when I feel for the first time in my life that I can connect with something.

bf1 - that synopsis of the process is really helpful, thank you.  I'd like to think it's the same across the country, but reading other people's comments it doesn't sound like it's always that way.

I've just found a local group for adults with asperger's/autism.  I think I'm going to contact them and go along to a couple of meetings.  They state that they welcome people who are not diagnosed but who identify with autism.  On that basis I feel that I qualify.  I wonder if the solutions to what I am asking perhaps lie in that route, i.e. looking for techniques to help with organisation and anxiety.

I found that I identify with people on this online group far more easily than I do others.  So I'm hoping that if I go and meet some people I'll be able to identify with them too.  I think if that happens then it will be all the diagnosis I need anyway.  

My theory does come from experience.  I also have cancer and I am on an online group for that.  Whilst I relate in some ways to others with cancer there are many aspects of having a cancer diagnosis where I don't seem to relate to most other people - that has happened both online and when I went to a local support group (having been strongly advised to do so by someone, despite not feeling like I particularly needed to).  I suspected I was on the spectrum long before I was diagnosed with cancer.  My cancer diagnosis and my reaction to it, along with how I have coped with cancer, has only increased my understanding that I am autistic.

I agree that there is so much stigma attached to mental health.  Similarly there's a stigma attached to cancer.  People have such perceptions of things that they seem to find it difficult to see beyond those perceptions.  I never know what to do when I tell people I have cancer and they respond with "Oh I'm sorry" in a particular tone of voice.  I bite my lip to stop me saying "why would you be sorry, it's not your fault?" because I've said that before and it turns out that's not the right thing to say!  And that's cancer, which is much more widely talked about and supposedly understood.  So, I honestly don't know what I would do with a formal diagnosis of autism.  I don't know how you tell people or how much you have to explain.  Knowing how people have reacted to cancer in a variety of ways (some have done the "I'm sorry" thing, some have disappeared, some have ignored it, etc), how on earth would they react to a diagnosis of autism?

I think the world would be a lot simpler if we didn't have to label anyone and everyone could just be accepted for who they were.  When you meet someone you go through a quick intro with them to find out how they want to be treated and you accept that for each individual without worrying too much about whether they got a score of X or Y which took them above or below a particular threshold.

Thanks again all for your helpful responses.

I posted a similar question to this last year, when I was conflicted about whether to go for a diagnosis or not. So far, my decision has been to not bother. For me, there's no practial need for a diagnosis, and I don't need to be told that I have Aspergers. I've done all the online tests, read various books and in comparison to others who have been diagnosed, I seem to be a lot further along the spectrum. There are thousands of people afflicted with physical and mental health issues who don't seek medical attention, so I don't see that it is in any way unusual to self-diagnose a condition if you don't feel that treatment is available or suitable. I don't need to go to a doctor to be told I've got a bad back, the pain tells me that; equally, I don't need a psychologist to tell me I have an ASD. I wouldn't presume to make an accurate diagnosis, but psychology is not an exact science anyway.

I'm also not comfortable with getting involved with mental health professionals. I just can't see how I can walk into a doctor's surgery and say 'I think I have Aspergers....' without that leading to questions about my mental health, and I really don't want to go there. Am I going to end up with a diagnosis of various co-morbid conditions? If that happens, I'll then define myself as mentally unwell, and I fear that would remove the last remnants of my self-respect.

I feel that mental health issues are still rather stimatised, and many people tend to associate Aspergers with mental health disorders and rather more severe personality problems. I am just not very comfortable telling people that I have the condition, but realising I do have it has helped me accept some of my failings, and helped me to come to terms with many of the decisions I have made.

I can see many good reasons to get a diagnosis: for work, to explain difficulties to family members and friends (I have few of the latter and none of the former), and for young people I would say it is an absolute necessity to get a diagnosis in the early teenage years - that would have helped me enormously. But for me, I can't see the benefit at the moment. A diagnosis is not a cure, and there's no treatment for Aspergers - you'll still be the same person one way or the other.

It's all very subjective. I've gone through my reasons to carry on as I am, but they may not apply to you. I think the important thing is that if there are no clear-cut criteria to get a diagnosis, you shouldn't feel pressured or obligated to get one just because there is a label that can be applied to your 'condition'.

Hi katfish,

Reading your post is like reading a description of me. I attended an Autism training day and discovered that was me - wrote down all my behaviours, matched them up to the definitions, realised I had it. It turns out that having autism does not mean you are Rainman, which is why I never suspected I had it. Movies have a lot to answer for!

It took 2.5 years to go through the diagnosis process (I was 38 when I finished it). The thing I wanted to get out of it was to stop feeling in limbo. Once I knew I had it, I wanted to get the diagnosis as proof. Until then, it wouldn't be official. Having a clinical psychologist assess me and say "yup, that's you" would take me out of limbo and help me define, come to terms with, and understand myself better. I already understood myself well, but having a definite "root cause" of how I think, feel and act for some things, and corroborated by a professional, I thought would help me. It would help me explain myself better to myself.

Additionally, I thought it would help at work. Twofold: a few years ago I got a bad rating in my annual appraisal, and I wanted to prove to my boss that he was wrong in his assessment (I have a strong sense of right and wrong, and he was wrong); secondly to use as proof that I have extraordinary abilities in certain areas and terrible abilities in others, namely "people" and "organising/coordinating". I have a one-pager that describes me perfectly that the psychologist created for me, and means that people give me problems that no-one else can solve (which I enjoy doing), and shield me from the social/organising aspects. "Coming out" as someone with autism to my boss had a very positive effect, because here was real proof that I think in a very different way to everyone else, and that I thus provide great value to the company. Since I told him, I've been rated as "Outstanding" in my annual appraisals, and he says the quality of my work, and my ability to create value for the company, is self-evident from the work and from feedback he's got from others. It's like a badge of recognition and helps me get the work that makes the company perform better, whilst not giving me the stuff I would struggle with. I don't get assigned any types of work I struggle with now, where I would have to interact a lot with others or go into a chaotic team; at the same time I drive forward and define new work and solve the unsolveable, so everyone wins and I'm seen to be excelling.

I didn't find the Diagnosis/Assessment process stressful. I only saw one clinical psychologist (twice), one office worker (once), and my GP (once).

Here's how I did it:

1. Spoke to my GP, who told me what the policy was in my county. They had to submit a form to the Autism provisioning organisation, then the Autism people would get in touch.
2. I got a copy of the form and filled it all in myself, including examples and about 6 extra pages :) . I gave this to my GP and said "send this off, please".
3. I got a letter from the Autism people requesting a first interview.
4. I turned up and spent an hour with a kind office worker, who just chatted to me about what I'd put in the form and then made some notes. This was basically a screening process to see if it sounded like I have autism, so I should go through to the next stage.
5. They said it would take 18 months before I'd see the psychologist because I'm an adult (not much provision in my county) and I'm not really struggling with anything right now - like, I'm not unemployed or homeless or depressed.
6. I waited 18 months then e-mailed them to say "it's been 18 months"
7. They e-mailed me with a date for about 4 weeks time to go see the psychologist for my assessment.
8. I went to see the psychologist. She was very friendly, we were in a quiet room, she asked me questions for about 2 hours and we did a couple of tests - I had to read a picture book without any words and describe what I thought was going on. At the end she said "I think you might have it, but I need more information about your early development." so asked if she could speak to my mum. I said yes, but do it by letter not by 'phone (because, haha, it's genetic and guess who I get it from)
9. The psychologist lady 'phoned me up a few months later to say she'd received the responses from my mum and there was no indication of early developmental problems, so she wasn't sure I did have it. She asked if I'd like another meeting with her to go through the results and I said yes.
10. I went to see her a few weeks later. This time I told her exactly why I thought I had it, because she hadn't asked this before, and then she suggested we do some more mental tests. She gave me series of numbers to recite backwards, I had to manipulate some coloured bricks as fast as I could to match the picture, and I did some maths problems. I think it was called the WAIS test which measures different parts of your cognitive ability. I enjoyed doing these, it was fun, but maybe that's just me! I also told her she should speak with my sister, because my mum wouldn't have noticed anything "abnormal" in my development since it would all have been "normal" for her.
11. I received a letter from the psychologist in December last year saying I had it, that was my formal diagnosis. The tests had shown peaks and troughs in mental ability (for a "normal" brain, the results are evenly distrubuted, and my results ranged from the "very high" to "above average"), and my sister's testimonial and observations were consistent with someone who has an AUtistic Spectrum Disorder. Me and my wife had a good laugh about some of my sisters answers - I couldn't remember some of the occassions she mentioned but it definitely sounded like me!

Declaring your diagnosis is completely optional - you can get it done but you don't have to declare it at work or to the police or anyone at all. For me, it helps when I need it to, and I use it when I need it to, and it's helped family life because now people understand what I can do, and what I can't.

I hope that's helped.

Hi,

I have recently had a "diagnostic day" at a local centre; I must say that I didn't find that stressful at all. Like you I had some awareness of my differences, have had counselling in the past but only recently considered Autism Spectrum Disorder.

I did some of the on-line tests and wrote down a few bullet points, relating to my experiences and behaviour, and made an appointment to see my GP.  He was very open to listening and sent me away with an AQ 10 test - which you can get here:- https://www.autismresearchcentre.com/arc_tests

I had aother appointment where he looked at the results. An NHS referal could have taken over a year so I had already researched a nearby centre who would see me privately (in around three months) subject to a GP referal and he was happy to refer me.

I am retired now and I wouldn't have gone for a diagnosis while I was working and I'm also happy that I wasn't diagnosed earlier in life as I wouldn't have had the career that I did.

I have just read a very good book which covers some the challenges of ASD and some techniques for addressing those challenges (including issues of everyday organisation and anxiety), it was called "Living Well on the Spectrum" by Valerie L. Gaus