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 am 62 and was diagnosed with autism at the age of 57. Like you, I knew that my profile was autistic. Actually getting the diagnosis meant that it took me a year to accept this difference. I have been highly successful in educational leadership and everyone has always accepted that I was different . A diagnosis at our age is only relevant if we cannot accept or deal with our differences or if we want people to be really clear that we do not have dementia or Alzheimer's. The brain wiring of autism can materialise to others as dementia because whilst autism does not get worse,ageing impacts on autism. I did not seek a diagnosis. I was being tested for Alzheimer's and my profile did not match others of my age and gender. After discovering two other things about my profile the third issue led to my diagnosis and my autism. My greatest difficulty therefore is my health and trauma. When trauma - and PTSD - meet autism I am overwhelmed. How you manage the trauma/PTSD and autism individually is when you function the best
My strategies -my medication supports my health , Alexa is used to create the timetable/framework I need to function through daily reminders and alarms as well as mood music that supports my mental health
When I know I am having a bad day I use my daily diary to draw and write all the positive things that I hear from everywhere ,- including the radio or TV. Selecting key words and phrases that are positive calm the mind.
When my trauma and autism clash and I cannot function I ask my doctor to refer me to a neurologist/counsellor with autism experience . As I still work I also use the Access to work govt scheme for identifying support needed .
I use Alexa to bite size anything that I do : reminders of breaks and I stop what I am doing and restart this way .
I use my noise cancelling headphones to help with my noise difficulties
I talk to my husband about how I still need a fan even though I. cuddle into a duvet because cuddling into something is an issue about senses not the neurotypical sign of being cold. The person who lives with you the longest knows how you behave and speak. My best advice is to use their support by telling them why you do something. This is only difficult if you don't know what you do .
Know the difference between an enabler - somebody who helps you because they have decided that you need something because you are autistic and - being enabled - when the person does things for you because you have made it very clear that it is helpful .
Know the moments that trap you in your autism. For me this is not going out/not going to groups/not working - as these things will make it hard for you .
Know the things that make you feel that you have a voice and do more of these things .
I have been very successful in my life and if my doctor and specialists had not been looking at whether Alzheimers was my difficulty I would never have gone for an autism assessment. There are no adult services for us and little understanding. You must choose if knowing is right for you. I have heard many people say that having a diagnosis helped them understand themselves. It did not have this affect on me. I already knew but everyone accepted me as I was. Now I have to second guess everything I say and do as to whether I have missed something or viewed that autistically, hence I lost my confidence in self. I am still as good at what I do as I have ever been but now I am different .
I wish you good fortune with whatever you choose to do re diagnosis. If like me you have health and trauma difficulties you may want to know if you are also autistic. It may not bring you the answers you seek but only you can think about what impact having this knowledge will have on your life.
Hi there
Thank u so much for all yr tips & info and the clarity with which u describe yr experiences. You’ve obviously taken a lot of time to reply to me and I’m really grateful.
Its very inspiring to hear about how uv been so successful in yr working life despite (or maybe partly because of) yr experiences of autism & trauma/PTSD. You’ve obviously found yr niche in life and have probably helped a lot of ppl which is really great :-) And really glad yr colleagues accept/ see past/ more than likely really value yr ‘differences’. I too tried teaching - at university level when I was younger and teaching Buddhist meditation more recently. Re the former I was very committed & thorough but I just fell on my face basically - I was in my early 30’s, a very stressed & debt-ridden single mum and at the very end of my tether emotionally after years of undiagnosed PTSD and I guess now autism. So it wasn’t a success and I lost what little confidence I had. The Buddhist teaching was a totally different experience tho, I had the same issues but I was much more able to deal with them, the very opposite of suicidal, and I am told I did it really well. Unfortunately increasing health difficulties ended up stopping me doing this and I still miss it but there are other ways to help ppl.
Yr comment about autism mimicking dementia - about it not getting worse over the years but ageing impacting it was very interesting. Would u be able to expand on this when u get chance?
Also yr tip about dealing with autistic traits and PTSD individually and the way they can meet & overwhelm is very helpful & interesting. I don’t have the mix between the two clear in my head as yet, I guess this will take time, but yes this double-whammy experience is definitely one to watch out for. I guess I would need an autism diagnosis as well to get medical & counselling support for it - really glad u have this, it sounds like you’re very fortunate but maybe it’s also because yr career background has given u qualities & knowledge that help with accessing it?? I’ve found in this long era of austerity that I need to be very pro-active and second-guessing to get what I need re my various medical issues - often I don’t get what I need these days but I get more than I would if I just sat back and let medical services come to me or relied on over-worked GP’s & consultants being able to treat me holistically like they did in the past. Yr use of Alexa sounds familiar - I do the same things via lists, diaries and my amazing partner who spends his life reminding me to do things, sometimes repeatedly poor guy! He’s always saying to use my phone alarm but very often when the alarm sounds I just turn this irritating ‘distraction’ off, engrossed in whatever I’m doing and completely forgetting that it’s reminding me of something or what it’s reminding me of! He can’t understand this at all and I can’t explain why I do this. Maybe Alexa actually telling what I need to do - repeatedly until I do it - would be a better method than phone alarms - or indeed my insulin pump alarms! Believe it or not I do the same thing with my pump as I do with my phone! Needless to say I’ve not told my health professionals about this - I could lose the pump then it would be back to injections & comas. So thanks very much for this Alexa tip! And it would certainly take the pressure off my partner.
Positive keywords & thought techniques I also use continually - these are directly from the different Buddhist teachings that I’m really relating to at different times. I’ve never been able to do the recommended Buddhist training of doing one a day of a set number of ‘Lamrim’ meditations in sequence - it’s just too much for my mind. I take days or weeks over each meditation and can only very loosely do them in the recommended order. It’s a big relief to realise that it’s probably having an autistically wired brain that’s causing this. From now on I’m not going to worry at all about this. Thanks for triggering this very helpful realisation!
My partner seems relieved that autism may explain things too - probably because he now knows the reason for my many difficult to deal with traits. And I’ll be able to explain them more easily I hope. Yes it’s very valuable to be able to do this in a close relationship.
I too have to cuddle into whatever is covering me when I’m going to sleep. When it’s hot I find it easier to wear something cool enough to enable me to still have at least a sheet to wrap around me. Gosh there are so many ramifications to being on the spectrum aren’t there!
I see what u mean about distinguishing enablers and being enabled - I’m guilty of being the former myself at times, something I need to work on because yes being on the receiving end of this is not a good experience, particularly when u have PTSD. I had a very traumatic, triggering ‘friendship’ once with a very judgemental ‘enabler’ - I had to extricate myself in the end as i was going thru a very bad time generally and it was just destroying me.
Yes all my various challenges have at times stopped me from going to various social things and it has felt isolating. Fortunately the advent of Covid restrictions brought live-streaming with it and some of the big crowded Buddhist events I so wanted to go to but found so physically & emotionally demanding were suddenly accessible to me - it’s been really enriching, I just wish it had happened for a less tragic reason. I welcomed online medical appts and Facetime with friends too - so much easier in so many ways. Maybe it’s a cop-out but it’s generally so much easier for me - and I don’t end up in risky situations re my diabetic blood sugars etc or in hospital with them. Work is impossible for me unfortunately and has been for a long time - it hit my self-esteem badly especially when the govt/media started attacking benefit ‘scroungers’ - it was PTSD so big-time that I couldnt bear to see govt figures on the news. I shut myself right off from the news and also from social contact with ppl I didn’t know or who I felt would misjudge me in this way. I feel a lot better about it all now, I accept my medical conditions & disabilities now and my inability to do all the things ‘normal’ ppl do but at the time it was really awful and it very nearly destroyed me.
About having a positive voice - online campaigning about the things I care about helps a lot as long as I keep it under control - it can take me over if I’m not careful, the tunnel vision effect again. And my Buddhism and the ways I can help others with even just a shoulder if nothing else. This is what you’re all doing for me now with this blog and I deeply appreciate it. Hopefully once I’m more experienced I can help others with autistic traits the way ur all helping me right now :-)
I think it could go either way at different times re having formal confirmation that I am on the autistic spectrum. Right now it’s such a relief to know why I have all these strange tendencies and to have other ppl validate them and explain similar experiences. I can see that on bad days a formal diagnosis may affect my confidence but I’ve had a lot of experience with other conditions doing this to me and how to head it off and Buddhist teachings & practices help hugely. A really good Buddhist line of thought that has helped me a lot is to not conflate my various conditions/disabilities/inabilities with myself as a person or to see them as completely fixed. Yes some are more ‘fixed’ than others and they all need dealing with in various ways & in a business-like manner preferably - but they are not me. The teaching goes on to say everyone has huge potential within and to focus on that with ourselves and with others. I don’t know if this helps u or anyone else at all or if it’s even allowed on this blog (apologies if it isn’t) but it’s been an absolute game-changer for me.
Anyway, I must stop this long ramble now but thank u again very much for such detailed and clear advice and wishing u much good fortune back, Karen xx