To diagnose or not diagnose? That is the question

I was 42,5 when I turned out to be pregnant. Though welcome it was very complicated. I totally couldn't relate to the other pregnant women and their cloud nine feeling. So initially the psychologist I had been visiting (midwife's advice) thought I was in prenatal depression and probably going to suffer from postnatal depression as well. 

So went to specialised counselling sessions and because I really wasn't doing any better at all, a psychiatrist was called in for advice and it was her who immediately said: I think you are autistic.

Pregnancy was difficult, but only mentally really, as I was still walking two hours a day at the end.

I was scared I wouldn't feel maternal at all and really struggled after birth. My partner is superpaternal, so that helped.

To be completely honest, it took me about ten months to feel slightly maternal or comfortable with the idea of being a mum. Until that time I just pushed through and did the best I could.

I still struggle because a baby is very hard on the senses and I don't have that maternal patience thing. But we have got a smartie pants kid and it is rewarding to see that you get what you give. Like a computer: lots of input = decent output ️

Well im glad someone is similar to me!

Yes that could be stimming. I understand stimming to be something done for comfort. I was wondering if this is stimming but its not all the time.... i go through phases where i have a really dry scalp. Ive not had it (touch wood) for 2 years now. But when i have it i LOVE picking it. The feeling of it. Its like an addiction. My partner thinks its disgusting. I try not to do it in public but its hard not to.

You see other people might do this too. But they might not have difficulty with social situations. Or get annoyed with little sounds. Or get really stressed when plans change. I think im seeing more where the line is (albeit a blurred one) between NT and ND. 

Hi out_of_step

I could've wrote that first paragraph, it's me 100%. I've always been a quite guy from as long as I can remember. I've always had a bad habit of pulling at threads on my clothes, mainly inside my sleeves or pockets. I twirl them in my fingers until it forms a ball, it's a great feeling. It's only till a few weeks later, I'll notice a hole forming, I've ruined so many jumpers and pants. I've always found it comforting and sometimes I don't realise I've been doing it until someone says something, mainly my wife. I guess that's what you might call stimming??

I'm also like yourself, I have days where I feel so comfortable in myself until something changes or puts me out of my comfort zone.

Ive never felt average. Ive often felt socially awkward especially in new or unfamiliar situations. At school i was always described as quiet. Some people still think i am unless they know me well. In groups im very quiet but its cos i get lost or struggle to join in.

Anxiety is my default setting. Im not sure about stimming unless there are things i do which im not aware of. I did have a comfort blanket which is at my parents now but that was always there for me when i lived at home. I still love the feel of it now!

I took some of the online tests last year. I scored a "maybe" for ASC (I think it was 26) and above NT average for reading emotions! Im going to take them again soon. I struggle with some of the online tests which i find male-orientated. (I have no interests in trains or timetables for example).

Im having difficulty at yhe moment as life (thank god) is running smoothly so i feel very comfortable in situations and cant see how i could possibly have AS. i do know this changes when problems come up. Then im convinced i have it.

I've always thought that I'm not your average guy. I can be socially awkward, quiet and quirky. I'm only just starting the journey of self discovering that I may well have some form of Autism. I relate to so many symptoms such as Anxiety, stimming, repetitive tasks and hobbies, routine etc. I've always thought that this is just the way I am.

I also only just took one of the online tests this morning (I know this doesn't really prove anything), but I scored quite high based on my honest answers.

I guess I would like to get a diagnosis as this would explain my reasons for being different.

I can identify with a lot of what you say. 

I only got my ASD diagnosis on Friday but it feels like a huge weight has been lifted. I have spent a lot of time feeling responsible for various upsets without realising the limitations being autistic placed on me. I am going to be much kinder to myself now. 

Whether other people accept my diagnosis kindly remains to be seen. If they don't I will start to distance myself from them. I have spent too many years suffering it's time to find some joy in life now! 

I didn't think that I would want to seek an official diagnosis at first, but I decided to in the end because I wanted to be absolutely sure. I might have been able to live with the slight uncertainty if I was alone, but my husband has been quite hostile to the idea that I might have Asperger's syndrome and I need proof. I realise he still might not accept it, but at least I'll have tried. I also want whatever follow up help there might be out there (such as it is) for me and my family.

Self diagnosis was a lot less stressful than this, which surprised me. I think putting myself forwards for assessment has made it more real. I've been remembering past events in my life with a new perspective, and I don't like some of what I see. But I can also see that some blunders weren't my fault. I've been reading all the books I can find which have positive things to say about autism, and more convinced than ever that I am on the spectrum.

I did have a moment of "epiphany" when I realised, just for a moment, that I am made the way I am, and this is me, and I am whole. But the next day I was in turmoil again.

Sometimes I wish I hadn't started it, but it's too late to "put the genie back in the bottle" now. No matter what the outcome, even if I get told I don't actually have Asperger's the process is changing me. I hope it turns out to be an improvement.

My students want to learn English, so they are the non-natives. I felt very alienated in the job for a long while. I was not expected to learn the local language, in some cases, actively discouraged from using it and I hated that. Workplaces are as bad as anywhere with all the in crowds and office politics. The students I get on best with share an interest in current affairs and can talk more openly about things - it is no longer really a great idea to do it at work for most people. 

Good on you for doing what you did and moving to another country. I think having a reasonable niche in the big bad world isn't too much to ask for. Many people are not content with their lives ant nothing is perfect. We just have to fit in where we can, do what we can and make the most of it.

How do you feel your ASC fits in with being a non-native in the country you are living in? I teach English to foreign people in the UK. Some of my friends are from other countries. I feel that I fit in with them as quite a lot of the time for me, communication is a cognitive rather than intuitive thing. I think this is how my students feel about speaking English as a second language.

Thanks Blank. So it took a big event before you found out.  You know, having children is one of life's mysteries to me. I am 33 years old and have never felt maternal. I am warming to the idea but I think it's more of a practical sense than an intuitive female thing. There are many aspects to having children and going through pregnancy and birth which have whirled through my mind. I think I have tocophobia. I'm scared that if pregnancy does come along I won't be able to cope. I feel that if I were to be diagnosed with ASC  there would be additional support available.

Thanks Trog. For me I think it would give me more confidence to explain why I find something difficult or why something makes me anxious. Things that normal people don't understand. I also think it would help me going forward in life to get support for any future life events which (for "normal people" are difficult anyway) but for me seemed a lot more difficult to deal with.

Thanks for your reply. From what I understand on other posts, you have had quite an in-depth assessment which has given you a greater understanding of yourself.

I hear what you are saying about miscommunications with your other half. I feel like me and my partner have had many miscommunications and that since i have been reading about ASC I can identify that this may be been a contributory factor. Since I have been reading I feel that I have a greater understanding of myself and we have come up against fewer of these "miscommunication" problems.

I'm not sure if I am bothered about raking things up from the past. Although I know I might underestimate this. Since I've been more ASC aware I can see how it fits with things which happened in my past or childhood. I've been lucky that I've had a good upbringing with a loving family although I did experience bullying etc when younger at school.

That's good you have a supportive boss. Mine is the same but I have only learned in these past few years to talk to them if I am struggling. But I only think that is because I am more comfortable there now. I feel part of the furniture. I haven't mentioned potential ASC. I went to her in summer about my struggles and she still checks in with me every now and then to see how I am coping at work. I really value that.

I didn't actively seek a diagnosis. I crashed during pregnancy and they put me in the Post Partum Watch programme before giving birth, thinking it was that. The psychiatrist there immediately said: 'Has anyone ever said you might be autistic?'

Then after giving birth the entire procedure started up and after a year I got my diagnosis.

I didn't seek a diagnosis as an adult. But in the early 90's I accidentally found out in my medical notes it was thought I was prepsychotic. I did suspect something like that, as I know these things were seen as craziness rather than anything organic. This was because of not cooperating at school, big tantrums at home, obsessions with letters and numbers and regressing at 18 months, losing a lot of speech, though that picked up again.  I always sensed something unpleasant was being kept from me and that my doctors and teachers were not being really honest with me. 

I certainly never wanted that sense of stigma again and of being observed but in any case, there was nothing written about what happened when children deemed with such lovely labels grew up. In the 90's they were just waking up to it but when the issue re-emerged later after another family member was getting scrutinised for autism, it really did bring up very painful feelings. Too many wounds reopened and if true, here was a label that is not just some kind of childhood illness, but life long!!!!! And I also felt the attitude of family towards me was changing.

The thing is, I graduated in 1981, when there were 500 graduates to one job. At uni I got o to a deep depression after it became clear it was still difficult to make friends, alongside a few other existential angst after too much navel gazing on all things esoteric. I had a lot of flak for not making eye contact, for example. 

I had been bullied all through school, on a placement in Italy I got rejection for having supposedly a cold Nordic temperament and encountered new hostility. Then it was kneejerk  hostility for being unemployed, but this time I got very rebellious and was living a very 'alternative' lifestyle. In the 90's I had high hopes of being fully self employed, but that died a death after the recession of 91-2. The A word just seemed to confirm all my worst fears about myself. 

I did not want to be workfare fodder either and be forced into anything against my will so Ieft the UK. I wanted to know for myself without a doubt I was capable of being completely independent. And after 20 years of what has not always been a match of heaven in the word of work, the A word means a lot less now. I have a reasonable niche within the big bad world, though lord knows what could be round the corner in these evil days of rampant popularism, possible recession, Trump, Putin etc.al.

Actually American intelligence has been said to view Putin as an aspie, though I doubt it. Interesting idea though.

My boss realised i was struggling a few weeks before I did, and just kept making me aware he was there if I wanted to talk. Eventually it got to the point that I admitted I was struggling and then we just had a chat. I still dislike talkign and find it hard, but do now realise it helps.

On the "for" side, I agree with all of your points - the self-knowledge and taking away the doubt have been extremely worthwhile for me. It also gave me the licence that I felt I needed to fully take part in communities like this one, which has been a massive help (though I realise now that the autism community would have been open-minded enough for that not have been a problem.)

On the "against" side, the only one that's presented any problems has been working out to what extent I'm limited, what I have to accept, and what is amenable to change. But that has only really been a matter of looking at something that I had always struggled with my whole life from a new perspective - in reality, I always had been questioning why I seemed so limited in some areas, and whether I should withdraw from certain things because of the anxiety that they provoked. The difference is that now, these things can be conscious, rational choices rather than aversions forced upon me by poor self-esteem and mental health problems.

Disclosure can be a tricky issue, but there is absolutely nobody that you are required to tell, nor are you obliged to change your behaviour in any way at all if you don't want to. However, you will at least have some evidence to back you up if and when you do decide to disclose. Even if you don't need that right now, bear in mind that autism is life-long, and it's better to have that confirmation now than have to scramble for it later due to some future crisis.

On the whole, I'd say that absolutely nothing has to change after diagnosis unless you choose it to, but for me, it has opened up new options for making improvements, and has given me much more sense of being in control over what options I choose.

I have just completed the assessment process and I will find out the conclusion that has been reached this Friday.

I decided to try and get an autism diagnosis because I was getting tired of going round the same cycle of doing a job, getting on OK at first, then finding it hard, getting another job... I've got relatively little time left at work and I want to find ways of making it less stressful. I've recognised autistic traits in myself for some time.


My husband and I sometimes have ridiculous miscommunications and I get extremely upset if he moves items I have left piled up around the house. I think it may improve our relationship considerably if I find ways of organising my things better and he understands why moving stuff is so stressful for me. I think some of what causes me to be disorganised is due to executive disfunction and exhaustion from working very long hours.

The main factor holding me back was thinking about involving my parents. I now know the assessment could have gone ahead without their input but I thought it would provide s more complete picture if they were involved. In the end I got my sister to ask them and they were absolutely fine about it. They are very elderly and it has improved our relationship already - we can blame autism for some of the tensions between us! 

i've got several part-time jobs all with the same employer. I've got other conditions they know about and if I get a diagnosis I will almost certainly let them know. It would explain why I find certain aspects of my work so challenging. It would also be an opportunity to explore how I can make better use of my strengths. If I do get diagnosed myTrade Union rep is going to help me negotiate any adjustments I need at work. 

Another reason in favour of diagnosis is ensuring that any future decisions taken about me are done so with reference to autism. This is more of an issue for me now that I am close to 60 years old than it might have been in the past, although any of us could find ourselves in hospital at any time (I really don't think I could cope on a busy, noisy ward). 

Regardless of whether I satisfy DSM-5 criteria I am now convinced that I am autistic. Diagnostic criteria aren't objectively 'real' in any case, they change and evolve over time. The assessment process I have had is psycho-social not just medical. They have been looking at multiple dimensions of my life to understand how it has gone up until now. In follow-up sessions we'll be looking at adjustments I can make to help me to live more comfortably in future. I intend to do this even if I don't get an ASD diagnosis. 

There are risks associated with getting diagnosed - when I've mentioned the assessment to some people they slow down their speech and start using simpler language. Sometimes that's welcome but at other times it feels like I'm being talked to like a child. Another potential downside is the amount of emotional energy it takes to pull up things from the past and look at them again. The period immediately after diagnosis seems to be quite tricky to manage too, especially if help and support are not forthcoming. Adjustment can sometimes take a really long time. 

I am sure you will come to a decision that is right for you. 

Good luck whatever you decide!

Recognition is a good way to see it. Having pretty much self diagnosed i csn be more open with my partner about any difficulties i face. He is great with this. I feel i can see why i struggle with things now

If you dont mind me asking how did yo approach it with your boss? Or was there an event happened which allowed you to open up about it? I need to open up to my parents about it but just dont know where to start. 

I sought a (recent) diagnosis for validation and understanding, and am glad I did. I still struggle, but knowing WHY I struggle helps. In some areas I struggle more at present as it has brought a lot out into the open in my head that I guess I always suppressed before. However I am hoping that with understanding some of these struggles will diminish in time.

You do not have to legally disclose to an employer. I did (actually my boss had been very supportive in getting me to talk well before I decided to get diagnosed) and has been great since.

I don't see it as a label, but I do see it as a recognition. Talking to others in a similar situation on here has also helped me a great deal.