Published on 12, July, 2020
Hi everyone,
I hope u don’t mind me bouncing my experiences off u all but I’m hoping that one or two of u can maybe validate them and give me a few tips. Basically I had a mega light bulb hour last night. I’ve suspected I’m on the autistic spectrum for a while, ever since my grandson was diagnosed 4yrs ago and my daughter and I had many long phone calls about it all. She thought we were both on the spectrum ourselves and she certainly does have some tendencies but unfortunately we are not in contact at the moment. About my own tendencies I dont know where to start but I’ll try not to go on & on too much (one of my many tendencies!) I probably should mention before I start that I’m a 64yr old woman with a no. of heavy duty medical problems and also complex PTSD from a very abusive marriage in my late teens and i think the effects of these have obscured the various signs of (?high functioning) autism. I also nursed for a no. of years in my youth and have been a practicing Buddhist for the last 25yrs - both these have given me coping strategies in social situations which may have masked things too at times, particularly the Buddhism which has had a profound effect on my life generally and has also shown me my mind and the way I relate (or don’t relate) to others more & more clearly. The nursing served to highlight some of my ‘failings’ too which is one of the reasons I was forced to change career. I had a few of the usual sorts of social blunders yesterday and there was a conversation with my Mum recently about how I’d had what she called ‘tunnel vision’ ever since I was a toddler and these made me at long last check out my various tendencies & experiences online - and they led me straight to autism sites/blogs. And it was just “Yes this is me!” again & again, not with everything but with quite a lot more symptoms than would be just coincidence. To be honest it was a huge relief - at last I know why and I can stop beating my self up about these tendencies and maybe do something constructive about them.About my ‘tunnel vision’ my mum said that I when I was doing something I just didnt seem to be aware of other people or my surroundings or the context of a situation, that I didn’t seem to think of the consequences, of how what I did affected others. I was totally unaware I was doing this and often didn’t really get it when ppl got upset or tried to explain what I was doing wrong. I can look back now and see that some of my bad choices when I was younger were because of this tendency, there were always really obvious parts of the picture that I didn’t pick up on. Mum says I’ve improved over the years and my Buddhist practice has undoubtedly helped with this and I’m more aware now of this tendency. It still happens again & again though, even though I care a lot about others and always have. My spatial awareness is also very poor - my partner remarks on it frequently and in school sports I was banned from the javelin etc for this reason.Nothing was ever done about any of my tendencies because ppl just weren’t aware of the autistic spectrum when I was younger. My parents & friends knew I was ‘different’ in some ways and ‘in my own world’ and for all my intelligence just devoid of the ‘common sense’ my peers had. I always had a a sense that I was somehow ‘different’ too. My teachers knew I think but no label was there to be attached - I was the only one in the whole of the 6th form for instance (numbering maybe 40 of us) who wasn’t made a prefect. I was always described as impetuous too, unable to contain myself if I knew an answer or had something to say and I acted on impulse ‘without thinking’ - with me though there wasn’t ever a thought there to think. I was the one that would always do a dare, I wouldn’t see the consequences, once it was suggested I just had to do it. My nickname in school was ‘the mad professor’ - I guess this was one of the reasons I did have friends, because I amused them and I think I was a good friend in a lot of ways but there have been many times since where I’ve just frustrated and bemused the ppl close to me. “But why didn’t u think?” has been said to me so many innumerable times since and is to this day. I have no answer to that, I just don’t know why.
As I said, I’m now a 64yr old Buddhist and this particular tendency is mainly confined to social blunders now but I frustrate and bemuse myself when I realise after the event (or I’m told) that I’ve said or done something silly/tactless/inappropriate/strange/eccentric. I have a sense so often these days that a lot of ppl find me a bit odd generally and to be honest I dread social situations with ppl that don’t seem to accept this or seem to be laughing at me in not a nice way. People that I’ve blundered with already, that I think I’m going to blunder with. I guess it’s progress that I’m becoming more aware, but I have to be really careful, I just cannot relax my focus or I’ll blunder. Once ppl have experienced a few of these blunders though and they are obviously starting to think I’m a bit odd then it’s nerve-wracking for me. Sometimes these days I actually do have a sense that something I’m about to say or do is not appropriate, but a sort of recklessness or impulse makes me say or do it anyway. Or a feeling that yes it is the right thing to say or do so I go ahead. I guess that’s progress too that I’m starting to get an inkling sometimes that I shouldn’t say or do something - that again is the effect of my Buddhist practice. But it’s an almost daily issue for me.
I have a lot of good close friends in the Buddhist community, they know my oddities but they aren’t phased, they focus on the good things about me and I try to do this myself with other friends with mental or physical challenges. I also have PTSD as I said and a lot of physical challenges & disabilities and i now have hearing loss too so I can understand a lot of what ‘challenged’ ppl go through - again this is part of my Buddhist practice but I’ve always had strong compassion right from a child. Don’t know how this fits with tunnel vision or my possibly autistic tendencies but somehow they seem to have co-existed with intense emotion about people or animals suffering and a burning compulsion to do something about it which persists to this day. As a child I collected for the RSPCA etc and was nearly beaten up quite a few times defending the class underdog or making I guess unwise remarks like we should eat our horrible school dinners because children in Biafra were starving. As a young divorced mum in my 20’s & 30’s I was heavily involved in, obsessed with CND, the Anti-Apartheid movement, Oxfam, the Labour Party etc - I was doing it I thought for a better world for my daughter as well as for people that were suffering but somehow I didn’t click that it wasn’t helping her in the here & now. By now I was suffering with PTSD and without going into details our family life with my parents was horribly dysfunctional but my daughter has said many times since that even though I did do alot of things for her &with her that she didn’t feel loved or connected to me. Quite a few of my boyfriends finished with me because of this too. Then we lost my sister to cancer and my daughter, in the 3rd yr of Uni was diagnosed with OCD. Since then my daughter has estranged herself from me for long periods, the latest one involving my grandson as well. This is going off the point a bit but looking back my mother and I can see how my ?autistic tendencies and PTSD have been big factors in it all and have been the cause of my worst mistakes with my daughter.
In more recent years, since I found Buddhism and started sorting out my mind, as I was suicidally unhappy by time I reached my 30’s, my physical health has fallen apart and with it came a lot of the apparently normal anxiety that accompanies chronic illness & disability. I had crippling social anxiety & extremely low self-esteem related to these issues and not being able to work because of them. I was also obsessive about having to do/not do all sorts of things related to my health - some were rational because I knew what would happen if I did/didn’t do something but some were definitely OTT. I still have this tendency tho I’ve been trying to let go more the last few years - maybe b/c I’ve been so obsessed with protecting my 87yr old Mum and my partner on cancer treatment from Covid that there just hasn’t been the mental space for much else. My PTSD was also diagnosed 13yrs ago and I’ve seen it playing into all these health anxieties. I had medical crisis counselling and also CBT for my PTSD and again my Buddhist practice has held me up. I feel a lot more accepting & confident about my own health stuff these days and my Mum, partner & I are supporting each other as we come slowly out of Covid shielding mode. I only mention all this because i think my ?autistic tendencies have played in too - the extreme anxiety when something changes and I have to try & adapt for instance. Health anxiety for sure but I’ve never dealt well with change and my Mum says it was a really big issue when I was a child. It was the reason why my parents wouldnt allow the school to put me up a year as I would never have dealt with a new class and also kids a year older than me. Nowadays my Mum and partner have become veterans with health-related things having to be done in a certain way or I can’t cope, they find it easier just to go along with it. And if something ‘big’ is happening like the day we’re finally going away after weeks of packing then I take a Valium to stop me melting down.
Something else my partner has had to put up with, and my parents when I was a child, is once I focus on something I think is important or has gripped me I’m just ‘driven’. My focus is intense and absolute to the exclusion of all else. I have to do it perfectly and it can take much longer as a result. My mother called this ‘tunnel vision’ too. These days I’m made more aware by my partner telling me again & again to stop and do something else I need to do like test my blood sugar or eat something or settle down to sleep. But often I just feel defensive and compelled to carry on anyway sometimes for hours and hours more. It’s a big almost daily challenge for me, especially as it often involves things that aren’t that beneficial or useful and detract from things that are. I’ve been 6hrs straight composing this post for instance but I hope it’ll be helpful. My daughter is the same with her work - at times she’s even collapsed due to not eating or exhaustion. She is also extremely emotional and has very frequent meltdowns but luckily she has a very good husband.
I’m also more & more finding I cant multi-task at all. I never could do this easily but my brain is ageing now i guess and being affected by wildly oscillating diabetic blood sugars etc so I just can’t manage at all anymore. I can only think about one thing at a time and can’t cope at all with other things coming in. I can even meltdown occasionally. And if I’m trying to focus on conversing with someone and they have the TV on or my partner’s strumming his guitar or even my Mum is doing her habit of rocking her foot back & fore I just can’t do it. I have to ask them to stop so I can concentrate on what I’m trying to say. When i am able to concentrate on a conversation though I go on & on & on apparently, saying the same thing over & over. My daughter has always done this too though it’s partly due to her OCD. When I am aware I’m doing it it feels a bit compulsive. I also interrupt a lot, I always have apparently. Everyone complains about it. I try not to but it always seems to happen. I just can’t control the impulse.
Another one that I have is sensitivity to light, particularly in the morning, and to noise. Re the latter my hearing loss has helped a lot with this - I only wear hearing aids when I have to. I much prefer to live in my muffled world and am grateful I have this. My daughter has these sensitivities too and my grandson has sensory processing disorder amongst other things. Time is also a big difficulty with me, I just can’t judge it - everyone says I have no concept of time and no matter how I try I’m always late.
Sorry this has been such a long one. I hope there may be one or two of u tho that have experienced similar things and could maybe point me in the right direction. I saw some videos last nite of ppl talking about their experiences and it helped a lot, I recognised myself a lot. It was such a relief. I don’t know whether it’d be helpful to try and get a proper diagnosis at my age and with all my other conditions that complicate things. I’ve been thru enough to be honest without putting myself thru a process that could strip me of self-confidence yet again. But I wonder if there are things I could read or techniques I could try - if I could find techniques that will fit with my Buddhist mind-training for instance that would be really helpful I think. Some I already do, I’ve just learnt over the years that they help - another lightbulb moment last night was coming across an article that basically listed all the techniques I’ve been using to cope with daily life tasks right down to colour-coded lists!
Anyway thanks very much to any brave souls that have got thru all this and can manage to reply
Karen
I can relate so so much to your post and even to the fact of how accurate you needed to be in explaining your symptoms inabsolute detail so we are clear , making the post super long yes but this is literally me too, I cant do short speak and hope someone gets what I mean- I have to also be absolutely clear on the details and yes people get long winded messages from me too and yes it can take forever to write and I lose track of time as I so it normally if in relaxed environments or if not then Im super stressed but need to complete it as I get agitated and my mind cant come off it till Ive completed it but then having that distraction happen is a complete nightmare as lost train of thought and struggle to say what it was I wanted to say or the point.
I also get distracted by things so much, by thoughts or people or noise. It can take forever to get back into it often I give up but not for lack of trying. I also get that tunnel vision as you call it , its hyper focusing and I can hyper focus for hours and hours to the point I feel sick and exhausted and realise Im shaking cos Ive not ate or drunk anything.
I leave everything to the last minute, not because I wanted to or lazy but because of all the distracting thoughts - i just got to do this , oh just need to do oh wait got do this and most times not one of thos things got done as I cant decide which one i should first in order of importance or time to do.
I too have not been diagnosed with autism or anything other than severe dyslexia and probably dyspraxia and that was last Autumn, I am 52 years old. I am only just discovering a whole heap of things now from whether I am adhd or add, I also realise now I have a severe auditory processing disorder and that affects me massively on a daily basis and has done all my life but has got so much worse as Ive got older.
I have always struggled with friendships despite being super caring and empathetic to people and animals (I also have complex ptsd) so assumed it was also do to with this but now only realising its something more. I am very obsessive but now realise i am doing that i am trying to curb it and not always successfully.
I am also very spontaneous decisions and not a great thing with me as has led me into so much trouble, I could be thinking "not doing it not doing it" and next thing yh im doing it or done it. Yet I hate money gambling I wont do it but impulse buys, to doing something crazy that could potentially put risk or harm to me I seem to do. I was more risk taking when I was younger but it just affects me in different ways now.
This reply was only meant to be a quick one but Ive full on now just realised its quite a long one...
My children I strongly suspect - well actually I know has autism, I suspect Aspergers in at least 2 of them but now thinking actually 3 as I think about it more as makes so much sense. One of my uncles on my mothers side is Autistic too.
Im also aware I seem to get on with people far more who are either autistic or I suspect are and again this is only something I am just realising.
I am only just learning that autism is vast in symptoms and various levels. I never thought for one moment growing up as a child to the age I am now that I may be autistic, as a child I was known as and even now I am referred to as super sensitive
Nothing much at home changes as in where things are placed, My furniture placement pretty much stays as is and changing my furniture around kind of diorientates me at the thought of moving it and makes me anxious. On moving things it has to feel right or I will just stay on edge and not relaxed about my environment.
Im not always comfortable with change, it unnerves me and I get anxious and overworry about it , so I try not to think about it all and just deal with it when it happens now. Sometimes this works and sometimes it doesnt depending on what it is.
I can be in the company of someone which while I want to be there, I struggle to cope with conversation unless its something im interested in otherwise I cant take in the conversation no matter how much i try, I zone out unintentially as I struggle to understand what theyre saying as in context. I often wonder they must think im so boring as I seem to have nothing relateable to speak back yet when it is something I am interested in or relateable I interrupt so damn much and I dont mean to. I also have severe memory issues. I can be in a conversation or read something and not be able to recall barely any of it but if its something that interested me then I can remember so much. Its easier to stay at home then I dont have to worry about meeting people and talking. Yet noone realises I have problems with communicating as I appear sociable and welcoming. The whole thing is just so confusing to explain.
Theres lots more but I am aware of how long my "quick" reply is taking :/
I would also like to know of anyone can relate to any of this as I too would like to know if these are signs of Autism.
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Hi there
Thank u very much for yr very detailed reply. It was all so interesting to read and u describe in yr first two paras absolutely exactly where I’m coming from when I’m trying to communicate thru messaging etc. So-o-o helpful to see it put into words! I too am absolutely compelled to finish the message (or other task) to the exclusion of all else, important or not. Often these days I’m aware I’m doing this and it’s not healthy but I’m just compelled.
I relate to yr 3rd para about procrastinating too and then the last minute panic with me and the extreme tunnel vision trying to do the task ‘quickly’. Sometimes I can’t start anything and I find myself surrounded by undone or unfinished tasks feeling quite panicky and scattered, not knowing what to do first or how to prioritise them all. I find this pretty uncomfortable as I do find security & relief in getting tasks ordered, catagorised, prioritised.
I’m sorry to hear how yr auditory processing challenges are causing u so much difficulty, I hope u can get some help with this. My daughter was given a lot of different things to do with my grandson when he was diagnosed with sensory processing disorder. One of the things that helped a lot with the auditory angle was special headphones. I remember the poor babe putting his hands over his ears and running away from noise and us having to creep around & whisper. I’ve not tried the headphones myself but before my hearing loss I relied on good earplugs, sleeping in the quietest possible place and not trying to do difficult things in noisy places. I guess u do all these things yourself but worth trying the headphones if u can afford them.
Very interesting too to hear that u also have social problems even tho u are naturally empathetic & compassionate and that ur dealing with complex PTSD too. I’ve found Buddhism incredibly validating and helpful tho I realise that not everyone is attracted to this sort of thing. The tradition I’m in is very laid back though and allows ppl to come & go as they wish and to take whatever they find helpful without becoming Buddhist. Or there may be some other sort of thing that fits with yr personality and helps u - I hope u’ll find it or already have it.
Yr description of yr spontaneous decision making & risk taking getting u into trouble - goodness that’s been me exactly over the years! And the way u are super-sensitive. I and my daughter are very much like this. And the way u have difficulty if things u can see around u aren’t exactly right. I do this particularly with picture frames, they have to sit exactly straight & evenly spaced, and I find things in the house that clash with each other particularly difficult. This trait has come out more & more as I’ve got older. I too zone out but put it down when I was younger to my interests & beliefs being so different to most ppl but these days my hearing loss definitely has a big effect. A paternal uncle of mine, a professor in geography, and one of his sisters did this very frequently amongst other traits and my mum and I now suspect they were on the autistic spectrum too. It does really fit with yr children having autistic traits and u having them too - I hope u can find the answers and the help u and they need.
Yr memory issues I also relate to as I’ve been experiencing them all my life - when I was a child my mum had to put my gloves on a string around my neck and I wasn’t allowed an umbrella as I always lost them immediately. As a young nurse I had to write down all the details about the patients given in the handover, I couldn’t cope at all without this and got into trouble for doing it on one of the wards I was on. In fact I’ve relied on lists about everything all my adult life - and revision notes too with exams - somehow things being in writing helps me internalise/remember them more. My memory issues increased greatly with the severe M.E. I experienced for 6yrs and these days with my very unstable diabetic blood sugars and the sheer 24/7 overload of all the medical conditions/treatments/appts I am dealing with - I even went to my GP a while back worrying that I was starting dementia and this was her opinion of why my memory is now so bad. Would it help reassure u if u went to yr GP do u think? One of things I had to do for her was to count backwards from 20 down to 1 and I still do this sometimes if I start worrying again.
I wish u all the very best anyway and thank u again for taking the time to explain yr experiences so clearly, it’s been very helpful & interesting,
Karen xx