To wonder where introspection ends and autism begins?

[PensivePension]

So, please hear me out before piling on!

I have a DS with autism. I do know a lot about it (well the autistic traits he has). He has good language, some rigid thinking, but can come across as NT to those that aren't looking for it.

But this is thread is about me.

I'm asking because I hear a lot about women (especially) getting diagnoses of autism in their 40s. Now, you have to assume that the difficulties the autism creates weren't so obvious or debilitating as theye people got to their 40s, got jobs, mortgages, had families etc. Not without a lot of masking, and internalised distress I'm sure, but to people looking in, any eccentricities or difficulties were not screamingly obvious.

Which brings it to me. I need more 'down time' than anyone else I know. I can do small talk, enjoy it sometimes, eye contact etc, in limited doses. I hate parties, being around lots of people, attention on me. I find some places way too 'much' though I can cope with them. When I get home after seeing friends, even if it is a low-key evening, I need a good 2 hours to decompress before I can sleep. I am happy spending whole days not talking to anyone. If I see people unexpectedly, even friends, my instinct is to literally hide.

I consider myself to be a friendly introvert, who just needs lots of space. However I am beginning to understand how 'extreme' my introversion is, and the toll on me if I do not get time away from people - including my family.

Where is the line between finding being around other people hard to cope with on a daily basis, and the social interaction aspects of autism?

My DH has autism, his mother would tell me all the time 'he's got autism you know' and I use to think no he hasn't your deluded woman (lol) then I started to notice it, doesn't like clutter, hates confrontation goes from 0-100, can't cope with stress again 0-100, memorises number plates the same way I know how many biscuits are left in the cupboard, and a few other things. BUT he can make friends with anyone anywhere Anytime loves a good chat with the man in the Chinese or at the garage.....

I can't believe how many people in this thread are all saying the same thing - and me too, I could have written this post.. My DS has autism, and I can see traits in the whole of our family (including the 2 other siblings). I have not explored getting a dx for me - I am functioning okay, but struggle with some things (noise, textures, avoiding spontaneity, some social difficulties).. but I do think anxiety and stress are really big problems for me.
I have wondered whether changing hormones can worsen things (have been in peri-menopause for a number of years, and have become much more aware of ASD-type traits in myself) - or maybe things have just worsened in parallel with the kids becoming much more of a handful... not sure!
I suspect it is much much more widespread than is generally believed (at a borderline level). I feel that for me it is just a different shade of 'normal'....

My mother was diagnosed in her 40s. I also have a young sister who was diagnosed. My mother, now aware of what ASD is believes I have it too. I believe I probably do but I do question myself how much of my behaviour is learnt. I have been treated for depression and anxiety since I was 14, and believe this could either be because I do indeed have ASD or because of a result of having a mother with ASD but I'm still trying to work out how to differentiate the behaviour. Mine are very similar to my mother's but do have some differences. She says looking back I was a classic example of a child with ASD.

I feel like knowing for sure and going for diagnosis wouldn't really benefit me now I'm in my mid 30s. But I do now have a baby and I wonder if he will have it as well and if me knowing for certain that I have it will have any benefit on him?

I relate to this post! I am 36 and over the past number of years have become convinced that I have autism. The thing is I am very skilled at masking and have an amazing husband. I have a great job too so I am lucky, but what triggered a lot of this reflection was how badly I deal with interviews. My anxiety is unreal and I struggle to answer questions because I ramble, give far far far too much irrelevant detail and masking takes up a lot of my concentration. I would say I appear normal at work but I have very few close friends and at school had no interest in friends and actually felt really anxious when people wanted to be friendly (I did have some intense friendships as I am comfortable one to one). I don't like big groups and could happily sit in complete silence alone all day. I stim also. Find it very very hard being a mother as my kids interrupt my downtime continuously and I need "rests" of complete silence and peace. Lol. Have never done imaginative play with them as I have no interest but when small I enjoyed daydreaming and so on. I overthink and analyse and love going on and on about the same topics. Used to self harm as a teen and suffered depression and anxiety which I now believe is due to autism. So, how would I go about pursuing a dx? The thought of unmasking fills me with horror! Spend so much effort presenting as normal.

Done a namechange...

I've recently got a diagnosis in my mid thirties... looking back I've been screaming "autism" since I was a baby (it was suggested by a health visitor at 4 years old... for a health visitor to suggest it for a little girl at that point historically I must have been quite obvious! But my mum wouldn't have it so here I am). My life has been utterly debilitated by it, I've tried and tried to get on but it just hasn't worked. If I hadn't met my husband nearly 10 years ago I'd be living on the streets I think. My parents pretty much chucked me out after I ended up back at home as an adult. FWIW I excelled at education although I was basically a school refuser that was saved by circumstance and an understanding school... higher education was stressful but suited me down to the ground but a PhD was impossible due to lack of structure. Then I tried to enter the world of work and have been chewed up and spat out so many times I can't even count any more.

Weirdly for casual acquaintances (who don't know about autism) I come across pretty normal! Quirky maybe. I've also been in and out of therapy for depression and anxiety but I think the people I've seen have not been trained to spot autism and I was probably masking pretty well... But I'd bunk off therapy after a few sessions usually and could never do my homework.

I've been ditched by friends because they couldn't cope with my over reactions to things. I can't look after myself properly and if left to my own devises would really struggle to maintain a well presented front to the world. This is getting worse as I get older and just seem to not have any energy for trying to mask anymore.

I've been out if work for a year after my last job was just a disaster for my mental health. I have got my diagnosis now and think I could possibly work for a sympathetic company with reasonable adjustments made. I want to work as not working is doing terrible things to my self esteem but every time I have a bad meltdown day I kind of think maybe I can't work. Yesterday I had a meltdown because somebody suggested doing something then wouldn't be pinned down to a time then messaged a bit later saying "it's ok I went in my own" I just can't cope with that nonsense.

Autistism is different for everyone and I think getting a diagnosis if you are getting on fine is up to you, it may help, it may be neither here nor there, it's certainly interesting. I needed a diagnosis because I feel like I'm so affected in a practical way. I think if I'd got a diagnosis at 4 years old my story would be very different and I'd see autism as a gift. I might still get there. But here at more or less rock bottom (although it could be a hell of a lot worse so maybe not rock bottom, just a deep pit in the topsoil) it really doesn't look positive at all.

To answer the original question. I'm well over the line and I'm not even that introverted.

You get a diagnosis by talking to your GP, they refer you and you wait 6 months (NHS, budgets etc) then get seen by a specialist team. My diagnosis was very straightforward in the end, it only took some forms and one session. Although the forms and questionnaires were horrible.

I can relate to this. Was anxious and probably depressed through school as I didn’t fit in and underachieved. Things improved late teens to early 30s and I thought I had grown out of it. The effort of parenthood, DD1 aged 10 always difficult and poor sleeper ASD diagnosis at 8, has left me with less energy to cope. I feel on the edge of things, on the outside looking in. Out of control of my life largely due to having an austitic child with behaviour problems. I see autistic people in my family and DH’s (convinced he has Aspergers).

I think DD has PDA but it’s not diagnosed here. She can cope when no demands are put on her, charming, funny, friendly. She is now in special school because of her behaviour and is heartbroken. I was introverted and quiet at school, didn’t understand the other child and constantly felt life was unfair. I have sensory issues in common with DD. Forced to wear uncomfortable clothes by my parents.

I sometimes feel I could forgive myself if I had a diagnosis. I am very, very hard on myself. DH won’t even discuss it, him or me.

The biggest thing for me in getting the diagnosis has been finally being able to forgive myself for being shit.

I am approaching 40’s and always dismissed autism as I am a bit of a chatterbox although I can be socially awkward. Recently however I met an autistic lad who is the biggest chatterbox and it’s got me reflecting again.
I have always felt slightly out of place and different to other people, although was popular at school later on (when I blossomed) In primary school I was very odd and had lots of intervention and I suppose would have had some diagnosis of ADHD if it was around then. I remember feeling like I was in my own world. The main thing for me though is eye contact I HATE it but I do it as I was taught how to. My father (amount his abusive faults actually got this right, he realised I couldn’t do it and made me practice with him for weeks using tips of where to look).

Still though if someone looks at me I see their eyes and in my head an image of their eyes. My brain flicks between these four eyes and it freaks me out a little having four eyes staring at me and I have to look away. I look at peoples nose ridge and flick between the two eyes, then away for a bit and repeat. It gets quite hard to concentrate on what people are actually saying but I’m much better at it now. I would be interested to see if anyone else has something like this.

Yes definitely with the eye contact. I can do it briefly but can't sustain it... the four eyes thing is familiar and I also focus on the nose ridge because I was taught to (think I read it somewhere actually, used to obsessively read articles about nonverbal communication whenever I found them). I hate going to the hairdressers because I have to avoid eye contact with myself in the mirror for so long.

The biggest thing for me in getting the diagnosis has been finally being able to forgive myself for being shit.

I’m sorry to steal your words AutisticPenguin (great name!) but yes, I felt exactly this. After dx and reading the penguin analogy.

I’m not wrong, I’m exactly who I’m supposed to be, I’m just not NT and that’s why, when measuring myself against NT I always came up short.

DS1 was diagnosed, DS2 was nearly diagnosed and it wasn’t until DD was referred and I started researching autistic females that I realised!

The dx made an enormous difference to me, because it validated me to myself.

I think the thing I worry about is masking and them missing it
I obviously mask really well because people are surprised to find out I'm autistic, but the psychologist who diagnosed me said I was a really obvious case! People on the outside don't see the real you. I guess when you're being assessed you subconsciously feel like you don't have to pretend any more. If people saw me at home they'd probably have zero doubts!

I come from a very neurodiverse family and I married a man who was later diagnosed with AS.

I was extremely 'shy' as a child and had terrific problems making friends. My behaviour could be a bit 'bizarre' at times. I think this contributed to the mental health difficulties that led to hospitalisation in my teens and twenties.

Looking back on my life, I know I would meet many of the criteria for ASD and, because I am quite socially isolated and struggle in some day to day tasks, I am confident that, if I pushed, a referral, assessment and diagnosis could be obtained.

Yet, I am in my late fifties. Everyone in my immediate family has a diagnosis of autism or a related condition and my role as not-autistic, is important to them. I have career (now part time) which I enjoy and which gives me opportunities for self directed research (which I also enjoy).

The social isolation, problems with organisation and budgeting, will be solved with a bit more effort (I have taken another small p/t job). So assessment and diagnosis would really not be advantageous to me. It would simply pathologise the traits that i can now pass off as 'quirks'.

I know for others, diagnosis has been liberating and helped them to make sense of the world, or it has helped them to acquire the support they need. However, for me, I sort of 'know', but a formal diagnosis is not necessary.

You get a diagnosis by talking to your GP, they refer you and you wait 6 months (NHS, budgets etc) then get seen by a specialist team

Just wanted to add to this thread in case anyone is reading it and thinking of seeking a diagnosis: waiting times for NHS assessments vary massively depending on area and I've seen MNers on the SN board who have got their diagnosis within 3 or 4 months of seeing their Gp. At the other end of the scale, my GP referred me for assessment in December 2016 and my assessment date is currently estimated to be in February 2019! Though I have been warned that it may be an even longer wait than that as pressure on the service increases. A friend of mine was recently suffering from such poor mental health as a result of undiagnosed asd that he lost his job, was technically homeless and needed 24/7 care but still had to wait months for an assessment.

Like you OP I have moments when I think I have asd and moments where I think I'm just extremely introverted. I have started being a lot kinder to myself now which has improved my mental health massively. I used to push myself to be like everyone else and I assumed I would just learn to deal with situations I found difficult if I practised enough; I'm much happier now I don't do that. Looking at my behaviour as potential asd traits has also helped me understand why I have meltdowns over things that don't seem to bother anyone else and certain obsessive and sensory quirks I have.

I think this is a really interesting post.

I'm shy and fairly introverted, and prefer to be on my own. I am pretty certain that I have not got autism, but if I do a questionnaire things come up that I don't naturally do/like as markers.

I'm not sure where the difference lies. I was going to say that for me it's a preference rather than a must. Does that make sense? For example, I prefer not to give eye contact unless I know the person really well, but I will make it in situations where I know it's expected without feeling bad about it.

At what point does it go from being a personality/preference to autism. That probably isn't a firm line. Is it where it starts effecting day to day living perhaps? I don't know.

Trinpy, that's a shockingly long time to wait for assessment. I thought 6 months was bad but pretty standard.

Adult relative was 18 months for NHS assessment, then told it could be at least 2 years, then got in at very short notice as there was a cancelled appointment.

Just a thought. The NHS is overloaded with adults wanting ASD assessments, could anyone who doesn't need an NHS assessment, i.e. can function perfectly well without difficulty in their home, work and social life please consider going private to ease the load a bit?

At what point does it go from being a personality/preference to autism. That probably isn't a firm line. Is it where it starts effecting day to day living perhaps? I don't know.

from the NAS website The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning"

It's the bit in bold above that makes the difference. The long-term presentation and the limits it causes in your life.

Hasn’t everyone got some traits? I am pretty unsociable, am not bothered about interaction with others but I don’t really have any other markers so I am not autistic. It is very interesting as I have 4 children so I can see SOME traits in all of them, one is like me very unsociable, others are social but one is a clean freak but none are autistic. No-one is the perfect rounded human with intelligence, amazing social skills and great relationships. There is a scale and most people will not be autistic.

zzzzz what do you mean about removing pronouns?

You have described me as well. It's a relief to know but what's next? Do I give up trying to be 'normal' and having a job etc?

The NHS is overloaded with adults wanting ASD assessments, could anyone who doesn't need an NHS assessment, i.e. can function perfectly well without difficulty in their home, work and social life please consider going private to ease the load a bit?

This may not be true of every area but from reading through other people's experiences it seems common for there to be a screening process of some sort before patients are accepted onto the waiting list for assessment. This is certainly the case where I live.

Enough If you're struggling with something at work you can ask for reasonable adjustments. Depending on your workplace you may need a diagnosis for this.

The NHS is overloaded with adults wanting ASD assessments, could anyone who doesn't need an NHS assessment, i.e. can function perfectly well without difficulty in their home, work and social life please consider going private to ease the load a bit?

If you can function perfectly well you wouldn’t be referred for diagnosis!

Doesn’t it have to be disabling?

I pointed that out in one of my posts earlier.

Poor phrasing on my part for some people wanting to pursue dx.

The screening process in this area can be a bit Catch 22.
It's to screen out anyone who has MH problems, but because a lot of women in their 30, 40's and more have gone through life undiagnosed with ASD because it wasn't recognised in their generation, if they've struggled, they've been often wrongly dxd as having MH problems and they have been treated for MH problems.