Feeling like a failure

I’ve had a difficult few months and recently I’ve felt like such a failure. I’ve been thinking about my life and all the struggles I’ve had just to cope with normal life - stuff that so many other people seem to breeze through and cope really well with - and I’ve just had this awful overwhelming feeling today of feeling like such a failure. I know now that much of my struggle with day to day life is due to me being autistic (and also my childhood with parents who were very flawed and emotionally distant) and most of the time I try to be positive. But these last couple of weeks I’ve found myself experiencing a lot of self hatred and feeling like such a failure.

I realise this sounds like self pity - and maybe it is! I don’t want to be thinking like this and I know it’s self destructive. 
But how do other autistic people come to terms with the fact that they’ve spent their lives struggling so much with day to day life, and living with a lot of anxiety etc? When I was younger I think I felt better about myself - I enjoyed being different and unique. But now I find myself looking at other people who have had more conventionally ‘successful’ lives and friendships and feeling like a failure in comparison. I think being autistic has made life very difficult for me. 

How do other people come to terms with being accepting of these sorts of thoughts and feelings? And how do you keep positive about the way being autistic has impacted on your ability to really engage with life and achieve things? 

I want to be more positive but am struggling today. Does anyone else sometimes feel this way? And how do you deal with it? 

Parents
  • I've got to admit to having similar feelings at times, and especially after a run of difficulties compounding it all.  But then underneath that I'm also very attached to being me, leastways when I feel I'm safe enough to be genuinely myself.  

    So I'm wondering about the various "conditions of worth" that are routinely placed upon us, via parental figures, educators, employers and yes, our culture as a whole, which often seems to judge people through a very narrow lens of economic productivity and fairly stereotypical ideas about "success".  We internalise all of this and then, I find, even collude with the subtle and not-so-subtle oppression which makes us feel "less than".  I do it myself on a regular basis.  Indeed, I think I've been programmed by all of the above influences to do that.

    In order to find a place of calm and self acceptance, I regularly need to sit with this for a while, allowing all the external stuff to subside or using a cognitive therapy approach to target and dismantle some of it.  It has deep roots so it's something I come back to every so often.  I need reminding.

    Once, while I was watching some YouTube videos by Emily and Amelia Nagoski on the subject of burnout one statement leapt out - "The game is rigged"!  Yes, it is!  And it's not my fault, it's not yours, and it's not that of our autistic community.  We're a minority, experiencing minority stress and we didn't create the game, although we're inevitably made aware of its relentless standards and the conventional path through life that goes with it. 

    I"m not sure whether any of this rings true or feels helpful.  I'm all too familiar with the struggles, as you'll see from my other, often desperate posts.  But I just wanted to emphasise that this "failure" can masquerade as an individual one whereas in reality we have lots of strengths and skills that are either devalued by society or not allowed to flourish more visibly because we seem to be "off the beaten track".

    In terms of living our lives, this is enormously difficult, we get tired and, when we're tired, the cultural standards that are all around us and even within us, come back to clobber us when we're least able to cope.  I may be getting too philosophical here but I like the quote from Nietzsche, ""When we are tired, we are attacked by ideas we conquered long ago". And I think we get tired a LOT.  

    I think and hope, especially in the light of other responses here, that you know how many strengths and positive qualities radiate out from you, whenever you speak in these forums and no doubt in your life generally.  It does feel very much as though more is asked from us just to get by, but the development of such qualities and character is, I believe, what life is really all about and the true measure of "success".

    Can I push the boat out and add a little poem?  Again, it's another little touchstone to which I occasionally return to combat the programming.

    Success, D H Lawrence

    Success is a played out game, success, success!
    Because what have you got when youve got it?

    The young aren't vitally interested in it any more.
    Only third rate swabs are pushing to get on,
    nowadays.

    Getting the better of other people!  Who cares?-
    Getting the better of them!  Which better, what better, anyhow?

    Our poor old daddies got on,
    And then could never get off again.

    If only we could make life a bit more just
    so that we could all get along gaily
    instead of getting on and not being able to get off again. 

  • Oh Jenny - what a reply! It is filled with wisdom, compassion and kindness! I am so moved by what you’ve written here - you’ve expressed it so brilliantly, so eloquently. You should write a book! (Maybe you have!). It definitely does all ‘ring true’ - thank you so much for sharing your thoughts and experience. Pray

    I’m always astonished on here at the degree of self awareness people have about their place in this world as an autistic person, and the way we have to work so hard to navigate the world on a day to day basis. And also how imaginative autistic people have to be to find ways to cope. I’ve had MUCH a better advice and support on here than I’ve ever from the many books I’ve read about autism or anxiety, or from any Doctor or Education professional. 


    You are so right about the impact of being tired. I feel I am always tired at the moment - from the moment I wake up I am tired. The Nietzsche quote is brilliant - thanks for including it - it’s exactly what my head is doing right now. I will check out the YouTube people you mention too. This is all so helpful Jenny! 
    The poem is wonderful (I studied DH Lawrence at A level). It’s a great poem - and I agree with him. 

    You refer to your other ‘desperate posts’ - I’m sorry you are sometimes feeling this way too. If it’s any comfort I think everyone’s posts on here - and perhaps especially the more desperate ones - are part of a wonderful support network that I think is genuinely quite extraordinary. The people in this community are doing something very special (in my humble opinion!) - they are helping to banish the loneliness and isolation that so often comes along with being autistic. That is no small achievement. When my youngest son was at school - struggling so much with isolation and loneliness - I could never understand why more people didn’t reach out to him and try to gently include him. He really wanted to connect with people but found it almost impossible to take steps toward that himself. 
    On here there is no shortage of the most friendly, kind, supportive and comforting support - all through the day, everyday. It’s wonderful - and everyone in this community deserves credit for creating this wonderful environment that every autistic person can turn to - for help, for company, or just to have a chat. It’s so special. 


    Thank you Jenny! I’ve found your words so moving and encouraging- you have really helped me. 

    You are a very wise woman :) 

  • I need to return the thank you because, although I'm quite often just swinging by and don't comment, I definitely appreciate your posts.  And the contributions of the group often help to lift my spirits too.

    I’m always astonished on here at the degree of self awareness people have about their place in this world as an autistic person, and the way we have to work so hard to navigate the world on a day to day basis. And also how imaginative autistic people have to be to find ways to cope. I’ve had MUCH a better advice and support on here than I’ve ever from the many books I’ve read about autism or anxiety, or from any Doctor or Education professional. 

    And yes, I am very often astonished too, having been badly led down by a whole host of "experts", especially those in mental health services who failed to recognise autism at all.  And their "unhelpful help" is my idea of a significant failure because so many of those turning to services are autistic people who've been bashed about by life and basically measured by non autistic standards then "helped" in their one-size-fits-all, non autistic ways of helping.  Their ideas of success, recovery or rehabilitation never helped me much because I would always still be left with the feeling that I was somehow defective and falling short of the various goals or outcomes discussed.  And life just didn't become any easier.  In other words, I still felt as though I was being assisted in my misguided efforts to fit in and become a successful neurotypical person when that was basically an impossible task for me!  As I might have mentioned before, the Hans Christian Anderson tale of the Ugly Duckling resonates strongly with me because I suspect that, in the right environment with the right support, we may very well turn out to be swans!

    I think that, as an autistic community, we are our own best advocates because we come from a position of understanding and empathy.  And these qualities have often been honed by our difficulties.  We are a bit like the unfortunate oyster creating a pearl (from which it individually can't benefit) under the pressure of having to cope with a piece of grit thrown in by its watery environment, with the notable difference that we can and do benefit.  So I sort of come here fishing for pearls.  :)                   

  • I’d forgotten about The Brittas Empire! I feel so nostalgic about eighties tv programmes (I feel a YouTube binge might be on the horizon :) 

  • Yes, hubby and I used to watch The Brittas Empire and really laughed about "Helen's box".  Not sure if you've watched this but Helen, Gordon's long-suffering wife,  has a box stuffed with all the things that help her - drugs, alcohol. chocolate etc.  So we jokingly decided we each needed a box too.  Of course, some of my little delights can't really be contained in a box, but you get the picture.  And now, of course, they're calling some of it, like my gardening  "social prescribing", or more specifically "horticultural therapy".  But then, once someone else prescribes it, I fear it becomes something different that doesn't involve doing it on our own terms - very important to us autistics, i think!  

  • I really like the sound of your prescription! I think I’d like the same! 
    Bedtime Brownies - sounds wonderful. I’m really starting to envy you for these ‘treats’ Jenny! 
    I’ve just googled Sapphire Clinic but it’s blocked - I think it might be the parental controls on my Broadband package! Ironic! 

    I think I need to write myself a prescription too. It’s a good way of looking at it - I think I’ll get my son and husband to write one for themselves too. I’ve spent so much time running away from bad stuff recently that I’ve not had the mental strength or energy to start making positive plans for the future. I need to move away from ‘fight or flight’ and get into re-building my life mode. 

  • I still haven't felt like smoking anything, or even vaping much, although my son does.  But the edibles were a revelation to me.  They seem to have the effect that I always hoped alcohol would.  Now that's not to say I don't enjoy sharing a bottle of wine.  It's much needed round here.  But the edibles, when started slow and low, have been excellent.  Bedtime brownies are great too and without these I often wouldn't sleep from all the worry and anxiety.  Sertraline and other drugs are now off the menu for me.  Slight smile
     

    We do seem to attract challenging experiences too.  I can't take HRT because I have a liver condition that's hormonally driven (it started during my pregancies and gets worse each year).  And being seriously ill definitely makes you reassess your priorities. 

    My individually-tailored prescription is now cannabis, wine, gardening, good food and various relaxation and meditation techniques.  Oh, and avoiding psychiatrists!  We really need to get some pleasure back into our lives too and these people jsut add to our stress levels. 

  • Sorry to interject. I have a strong interest in drug science as well as autism. I do love david nutt. His most recent podcast has an interview with melanie sykes. She talks about her recent autism diagnosis and also medical cannabis.

  • After previous really (really really!)  bad experiences with prescription medications I am very nervous about taking anything (apart from alcohol) - but I’ve heard such good things about cannabis for anxiety. The last time I had cannabis was about 23 years ago - a colleague of my husbands gave him some as a thank you for a favour he did them. However it was incredibly strong and freaked me out a bit to be honest. We were smoking it though. When I had cannabis as a student it was no where near that strong. 
    I’m definitely going to look into this though - thanks for the advice. Love the idea of cannabis sweets! 
    I’ve used alcohol to calm my anxiety for years. Thankfully my tolerance for alcohol  is quite low so quantity wise it’s not been too much of a problem. I used to drink Campari and Prosecco cocktails but after I was ill last year I got out of the habit and when I tried it again I didn’t like it so much. So at the moment (of an evening I mean!) I’m drinking spiced rum - which is really lovely. Lots of vanilla flavour running through it :) 

    I’ve tried lots of herbal things for anxiety - without much success. I’ve considered HRT but again I’m worried about the risks of that. My mum had breast cancer when she was 38 - so I’m a bit paranoid about that. 

    Generally I like to take the natural route if I can with these things. I don’t think there’s exactly anything wrong with me in essence - I just think life has thrown some pretty challenging experiences my way and that anxiety in response to that is not surprising. I was so seriously ill last year and because of that my perspective on what is worthy of my worry has completely changed. If it’s not disease or death then frankly it’s not worth it! 

    I so want myself and my family to really enjoy life again. Like so many others we’ve had a rotten couple of years and I want us to move on, and be happy again. 

  • It sounds as though many of our experiences are very similar.  I can remember us taking our older son to a pantomime and having to leave early because he just couldn't stand it.  Plus, looking back, I think that it was also quite obvious that he's hyperlexic.  We basically had a pre-school child covering his ears, panicking and stating ever so loudly that, "I don't like audience participation!"  (This reminds me of another little story which I've already related on these boards of me, as a very young child, waiting at the bus stop with my parents when an older woman tried to engage me in conversation, inviting me to admire the pretty blue flowers across the road.  "Yes", I said, "They're delphiniums!")  And there was that fireworks display where our younger son clutched his chest and said the noise was hurting him.  We had to go home.  There's loads more but you get the picture.

    I'm really hoping to be in a position to help to build us all back up and move towards being the people we were meant to be, but really there's an awful lot of trauma and we're at our wit's end.  Stepping into the wisdom afforded by the neurodiversity paradigm has been a revelation for us, but I think we also need some serious bridging work before we can really experience the positivity that stems from it.  If only we could have know all this 25 years ago! 

    On the subject of cannabis, my knowledge has built up very gradually, without that much effort on my part and mainly because our son ended up relying on it to get through university (which still went very badly but he reckons using it has saved his life!), which prompted me to attend a local cannabis club just before lockdown.  I simply wanted to source a safe supply at first and was almost quaking at the knees when I went along.  But I forced myself and am very glad I did. 

    Many of the people there had long term conditions or disabilities, absolutely understood what I was looking for and were more than willing to share their knowlege.  I came back with a few products for when our son came home but, once home, got tempted by some blackcurrant candies I'd bought and decided, in my usual tense and anxious state, that it would be a sound parenting move to at least try just one before passing them on.  And my positive experience with the candies was a real turning point, in sharp contrast to my decades-long efforts with prescription drugs, OTC remedies and self medicating with alcohol!  And once I got wind of the Sapphire Clinic I registered as soon as I could - unfortunately lots of paperwork involved but totally worth it and I now get a monthly prescription delivered to my door (wonder whether the delivery man knows what's in there!).  

    BTW, on this score I'd recommend Prof. David Nutt's book, "Cannabis, seeing throught he smoke" .  Hope I'm not info-dumping here but I do find it all very interesting.  :)     

  • Wow Jenny - this is so interesting! 
    I used to take my youngest to other kids parties and dread that point when the party entertainer would say “I can’t hear you!” and get all the children to shout louder or whatever. At which point my little boy would become terrified and start crying. At these parties they were always encouraging the children to be louder - as if that was proof everyone was having a great time. Nightmare. 
    I should have given up on all that much sooner. Like you though - I felt it was good for them and that they’d get used to it and benefit in the long run. Without knowing about autism though how could we know how misguided we were? 

    What I did have the confidence to do was to take them out of school for family holidays. We all hated visiting places when they were busy (still do) so we’d pretend they were ill  and go on holiday when things were really quiet in all the places we loved to go to. Also go off season - camping in Cornwall in April and loving everywhere being half empty :) 

    I’m sorry that you’ve experienced so much distress and breakdown in your family. We have had a similar experience. It all takes it’s toll. However it sounds like you’ve accumulated a lot of wisdom and experience along the way - and that’s what will help you and your family now (and in future) to create a life that works better for you all. That’s what I’m hoping for for my own family. 

    I’m glad that cannabis is helping your anxiety. I keep meaning to properly investigate this but I just haven’t had the mental energy to take it on. It requires a level of research etc that I’m just not up to at the moment. 
    Anxiety is the hardest thing! My last few months have been totally ruined by my anxiety. I don’t want to give up though - I’m determined to be there for my youngest son as I know he needs me. 

    Thank you for sharing your experience - it’s been so incredible to join this forum and read stories that so mirror my own. It’s making such a positive difference for me - I feel amazed to suddenly be able to relate to so many people! 

    I only wish I’d come on here 25 years ago (though it probably didn’t exist then!). 

  • Yes, it's really interesting and helpful to talk things through here and know that we're amongst others who understand. 

    Within my own family I feel as though we've spent a long time out in the cold, seeking help from professionals who either didn't understand or weren't well enough trained.  And yes, we also have a long history of issues that have just kept re-emerging, from one generation to the next, for the main part without ever understanding that we're neurodivergent.  :(

    We actually did the party thing with our sons - parties, sleepovers, activities etc - simply because I falsely attributed my own difficulties to having had a very isolated upbringing with little-no chance of developing decent social skills.  So my sons started going to play group from very early on and I forced myself to keep taking them to whatever there was, just to help to "socialise" them and ensure they had friends.  I thought I was making a better job of things than my own parents did. 

    Unfortunately what I was actually unwittingly doing was trying to train them to be neurotypical and adding to their trauma.  And although they seemed to willingly go along with it (possibly because they thought they had to) and even to enjoy it most of the time, underneath all of that something very different was happening.  Our younger son explained much later on that his friends weren't really friends and that, "I always felt different inside" and our older son said he just felt out of his depth and going to these things just emphasised to him how different he was.  To my credit, I did let them stay off school for occasional days when they seemed to need them, including avoiding "reward days" when they insisted that the best reward would be not to go, but overall I now see that I was just basing all my parenting on a very surface understanding of our family and when I thought I was helping I was actually damaging them.   

    It's really only very recently that we've been doing things differently but this all comes in the wake of major breakdowns and distress and we're not sure whether the damage can be repaired.  Our youngest age of diagnosis is 26, our younger son is done with services and won't now have an assessment at all, and I myself was only diagnosed a couple of months before my 56th birthday.      

    So yes, all the signs can be there but without the knowledge needed to interpret these.  And now I really need communities like this to help me to make up for lost time.  Plus, as you'll have probably noticed in other threads, I've now added medical cannabis into my lifelong efforts to manage anxiety.  

  • Thanks Jenny - I will check these things out :) 

    I too have come to the conclusion that autistic people are very good at understanding and supporting autistic people - I suppose it’s obvious now I think about it! Although in terms of parenting I feel it’s helped me understand and empathise with my children (both autistic - one with a diagnosis and one on the waiting list) - but looking back I realise their were some failings in my parenting due to me being autistic. I was uncomfortable with social situations so my children attended less social situations - even though I did try my best to make myself take them to parties etc. However they hated other kids parties - so they didn’t even want to go! Eventually I thought “why are we forcing ourselves to go to these things when NONE of us actually want to go!”. So we stopped going. 
    For a few years I didn’t even know we were autistic - my youngest son wasn’t diagnosed until he was 10. He developed Selective Mutism when he started school at 4 and a half and the school etc just focussed on that - only later when it clicked with me that he was autistic was that addressed. This is a boy who had (I then realised) a STACK of signs of autism! He was seen by Ed Psychs etc - nothing done or mentioned! Quite extraordinary. 
    Sorry - have gone on a tangent there! 

    Thank you for all your help today - and all the interesting references and links - it’s been so helpful! 
    My anxiety has been dreadful - and engaging with the very interesting conversations on this community forum is the only thing that’s brought my mind to focus on something. 
    People on here seem to speak the same language as me - if that makes sense? 



    best wishes and thanks x 

  • Yes, I've long believed that the "unhelpful help" out there can really set us back and make us feel much worse.  More than that, I think it can compound the damage we've already accumulated over the years as we get edged by various pressures and prejudices into feeling different (in a bad way), marginalised and excluded - and this can be interpreted as another failure.  After all, they've given us all this "help" so we should have been able to use it and get better!

    Then, when I was watching one of the Ausome Training videos, I heard Evaleen Whelton also refer to "unhelpful help" and thought, yes, this is a very common experience.  I'm not alone.  We're clobbered by society and then take another few rounds from services.  "Seek help" we're told.  And we do so.  Again and again.  :(     

    So these days I tend to come here and also to listen to autistic-led training and resources because these leave me feeling bolstered, not eroded and unheard.     

    I wonder whether Hans Christian Anderson was autistic.  I can see shades of the Ugly Duckling, the Princess and the Pea and the little boy in The Emperor's New Clothes in many of us.  We're different (in ways that often turn out to be good), we're sensitive (so irritating peas won't pass unnoticed and we can alert others to dangers) and we're perceptive more generally (we don't just go along with the general mindset when it's wrong, wrong, wrong!). 

    The Nagoski sisters can sometimes be a little sciency and chirpy for me, but they definitely have a place in my thinking. They actually wrote a book on burnout before they realised that they're autistic, but there's a whole cluster of videos from after that realisation.  I wish they'd bring out a second edition of their book in the light of that.

     www.youtube.com/watch

  • Oh Jenny! You have bought tears to my eyes! I recognise every word you say! Your Oyster metaphor is just so appropriate - it’s the most wonderful way to describe it. 

    The term ‘unhelpful help’ - that is EXACTLY what my son has had from school etc all through his life. As a result he’s often felt like such a failure, and been left feeling so hopeless about his future. I really think this inadequate ‘help’ did much more harm than good. 

    And the Ugly Duckling? Gosh. That’s so interesting. You give me so much food for thought. 
    I think you ARE a Swan Jenny

    And as well as finding pearls - you are gifting them to others Pray

Reply
  • Oh Jenny! You have bought tears to my eyes! I recognise every word you say! Your Oyster metaphor is just so appropriate - it’s the most wonderful way to describe it. 

    The term ‘unhelpful help’ - that is EXACTLY what my son has had from school etc all through his life. As a result he’s often felt like such a failure, and been left feeling so hopeless about his future. I really think this inadequate ‘help’ did much more harm than good. 

    And the Ugly Duckling? Gosh. That’s so interesting. You give me so much food for thought. 
    I think you ARE a Swan Jenny

    And as well as finding pearls - you are gifting them to others Pray

Children
  • I’d forgotten about The Brittas Empire! I feel so nostalgic about eighties tv programmes (I feel a YouTube binge might be on the horizon :) 

  • Yes, hubby and I used to watch The Brittas Empire and really laughed about "Helen's box".  Not sure if you've watched this but Helen, Gordon's long-suffering wife,  has a box stuffed with all the things that help her - drugs, alcohol. chocolate etc.  So we jokingly decided we each needed a box too.  Of course, some of my little delights can't really be contained in a box, but you get the picture.  And now, of course, they're calling some of it, like my gardening  "social prescribing", or more specifically "horticultural therapy".  But then, once someone else prescribes it, I fear it becomes something different that doesn't involve doing it on our own terms - very important to us autistics, i think!  

  • I really like the sound of your prescription! I think I’d like the same! 
    Bedtime Brownies - sounds wonderful. I’m really starting to envy you for these ‘treats’ Jenny! 
    I’ve just googled Sapphire Clinic but it’s blocked - I think it might be the parental controls on my Broadband package! Ironic! 

    I think I need to write myself a prescription too. It’s a good way of looking at it - I think I’ll get my son and husband to write one for themselves too. I’ve spent so much time running away from bad stuff recently that I’ve not had the mental strength or energy to start making positive plans for the future. I need to move away from ‘fight or flight’ and get into re-building my life mode. 

  • I still haven't felt like smoking anything, or even vaping much, although my son does.  But the edibles were a revelation to me.  They seem to have the effect that I always hoped alcohol would.  Now that's not to say I don't enjoy sharing a bottle of wine.  It's much needed round here.  But the edibles, when started slow and low, have been excellent.  Bedtime brownies are great too and without these I often wouldn't sleep from all the worry and anxiety.  Sertraline and other drugs are now off the menu for me.  Slight smile
     

    We do seem to attract challenging experiences too.  I can't take HRT because I have a liver condition that's hormonally driven (it started during my pregancies and gets worse each year).  And being seriously ill definitely makes you reassess your priorities. 

    My individually-tailored prescription is now cannabis, wine, gardening, good food and various relaxation and meditation techniques.  Oh, and avoiding psychiatrists!  We really need to get some pleasure back into our lives too and these people jsut add to our stress levels. 

  • Sorry to interject. I have a strong interest in drug science as well as autism. I do love david nutt. His most recent podcast has an interview with melanie sykes. She talks about her recent autism diagnosis and also medical cannabis.

  • After previous really (really really!)  bad experiences with prescription medications I am very nervous about taking anything (apart from alcohol) - but I’ve heard such good things about cannabis for anxiety. The last time I had cannabis was about 23 years ago - a colleague of my husbands gave him some as a thank you for a favour he did them. However it was incredibly strong and freaked me out a bit to be honest. We were smoking it though. When I had cannabis as a student it was no where near that strong. 
    I’m definitely going to look into this though - thanks for the advice. Love the idea of cannabis sweets! 
    I’ve used alcohol to calm my anxiety for years. Thankfully my tolerance for alcohol  is quite low so quantity wise it’s not been too much of a problem. I used to drink Campari and Prosecco cocktails but after I was ill last year I got out of the habit and when I tried it again I didn’t like it so much. So at the moment (of an evening I mean!) I’m drinking spiced rum - which is really lovely. Lots of vanilla flavour running through it :) 

    I’ve tried lots of herbal things for anxiety - without much success. I’ve considered HRT but again I’m worried about the risks of that. My mum had breast cancer when she was 38 - so I’m a bit paranoid about that. 

    Generally I like to take the natural route if I can with these things. I don’t think there’s exactly anything wrong with me in essence - I just think life has thrown some pretty challenging experiences my way and that anxiety in response to that is not surprising. I was so seriously ill last year and because of that my perspective on what is worthy of my worry has completely changed. If it’s not disease or death then frankly it’s not worth it! 

    I so want myself and my family to really enjoy life again. Like so many others we’ve had a rotten couple of years and I want us to move on, and be happy again. 

  • It sounds as though many of our experiences are very similar.  I can remember us taking our older son to a pantomime and having to leave early because he just couldn't stand it.  Plus, looking back, I think that it was also quite obvious that he's hyperlexic.  We basically had a pre-school child covering his ears, panicking and stating ever so loudly that, "I don't like audience participation!"  (This reminds me of another little story which I've already related on these boards of me, as a very young child, waiting at the bus stop with my parents when an older woman tried to engage me in conversation, inviting me to admire the pretty blue flowers across the road.  "Yes", I said, "They're delphiniums!")  And there was that fireworks display where our younger son clutched his chest and said the noise was hurting him.  We had to go home.  There's loads more but you get the picture.

    I'm really hoping to be in a position to help to build us all back up and move towards being the people we were meant to be, but really there's an awful lot of trauma and we're at our wit's end.  Stepping into the wisdom afforded by the neurodiversity paradigm has been a revelation for us, but I think we also need some serious bridging work before we can really experience the positivity that stems from it.  If only we could have know all this 25 years ago! 

    On the subject of cannabis, my knowledge has built up very gradually, without that much effort on my part and mainly because our son ended up relying on it to get through university (which still went very badly but he reckons using it has saved his life!), which prompted me to attend a local cannabis club just before lockdown.  I simply wanted to source a safe supply at first and was almost quaking at the knees when I went along.  But I forced myself and am very glad I did. 

    Many of the people there had long term conditions or disabilities, absolutely understood what I was looking for and were more than willing to share their knowlege.  I came back with a few products for when our son came home but, once home, got tempted by some blackcurrant candies I'd bought and decided, in my usual tense and anxious state, that it would be a sound parenting move to at least try just one before passing them on.  And my positive experience with the candies was a real turning point, in sharp contrast to my decades-long efforts with prescription drugs, OTC remedies and self medicating with alcohol!  And once I got wind of the Sapphire Clinic I registered as soon as I could - unfortunately lots of paperwork involved but totally worth it and I now get a monthly prescription delivered to my door (wonder whether the delivery man knows what's in there!).  

    BTW, on this score I'd recommend Prof. David Nutt's book, "Cannabis, seeing throught he smoke" .  Hope I'm not info-dumping here but I do find it all very interesting.  :)     

  • Wow Jenny - this is so interesting! 
    I used to take my youngest to other kids parties and dread that point when the party entertainer would say “I can’t hear you!” and get all the children to shout louder or whatever. At which point my little boy would become terrified and start crying. At these parties they were always encouraging the children to be louder - as if that was proof everyone was having a great time. Nightmare. 
    I should have given up on all that much sooner. Like you though - I felt it was good for them and that they’d get used to it and benefit in the long run. Without knowing about autism though how could we know how misguided we were? 

    What I did have the confidence to do was to take them out of school for family holidays. We all hated visiting places when they were busy (still do) so we’d pretend they were ill  and go on holiday when things were really quiet in all the places we loved to go to. Also go off season - camping in Cornwall in April and loving everywhere being half empty :) 

    I’m sorry that you’ve experienced so much distress and breakdown in your family. We have had a similar experience. It all takes it’s toll. However it sounds like you’ve accumulated a lot of wisdom and experience along the way - and that’s what will help you and your family now (and in future) to create a life that works better for you all. That’s what I’m hoping for for my own family. 

    I’m glad that cannabis is helping your anxiety. I keep meaning to properly investigate this but I just haven’t had the mental energy to take it on. It requires a level of research etc that I’m just not up to at the moment. 
    Anxiety is the hardest thing! My last few months have been totally ruined by my anxiety. I don’t want to give up though - I’m determined to be there for my youngest son as I know he needs me. 

    Thank you for sharing your experience - it’s been so incredible to join this forum and read stories that so mirror my own. It’s making such a positive difference for me - I feel amazed to suddenly be able to relate to so many people! 

    I only wish I’d come on here 25 years ago (though it probably didn’t exist then!). 

  • Yes, it's really interesting and helpful to talk things through here and know that we're amongst others who understand. 

    Within my own family I feel as though we've spent a long time out in the cold, seeking help from professionals who either didn't understand or weren't well enough trained.  And yes, we also have a long history of issues that have just kept re-emerging, from one generation to the next, for the main part without ever understanding that we're neurodivergent.  :(

    We actually did the party thing with our sons - parties, sleepovers, activities etc - simply because I falsely attributed my own difficulties to having had a very isolated upbringing with little-no chance of developing decent social skills.  So my sons started going to play group from very early on and I forced myself to keep taking them to whatever there was, just to help to "socialise" them and ensure they had friends.  I thought I was making a better job of things than my own parents did. 

    Unfortunately what I was actually unwittingly doing was trying to train them to be neurotypical and adding to their trauma.  And although they seemed to willingly go along with it (possibly because they thought they had to) and even to enjoy it most of the time, underneath all of that something very different was happening.  Our younger son explained much later on that his friends weren't really friends and that, "I always felt different inside" and our older son said he just felt out of his depth and going to these things just emphasised to him how different he was.  To my credit, I did let them stay off school for occasional days when they seemed to need them, including avoiding "reward days" when they insisted that the best reward would be not to go, but overall I now see that I was just basing all my parenting on a very surface understanding of our family and when I thought I was helping I was actually damaging them.   

    It's really only very recently that we've been doing things differently but this all comes in the wake of major breakdowns and distress and we're not sure whether the damage can be repaired.  Our youngest age of diagnosis is 26, our younger son is done with services and won't now have an assessment at all, and I myself was only diagnosed a couple of months before my 56th birthday.      

    So yes, all the signs can be there but without the knowledge needed to interpret these.  And now I really need communities like this to help me to make up for lost time.  Plus, as you'll have probably noticed in other threads, I've now added medical cannabis into my lifelong efforts to manage anxiety.  

  • Thanks Jenny - I will check these things out :) 

    I too have come to the conclusion that autistic people are very good at understanding and supporting autistic people - I suppose it’s obvious now I think about it! Although in terms of parenting I feel it’s helped me understand and empathise with my children (both autistic - one with a diagnosis and one on the waiting list) - but looking back I realise their were some failings in my parenting due to me being autistic. I was uncomfortable with social situations so my children attended less social situations - even though I did try my best to make myself take them to parties etc. However they hated other kids parties - so they didn’t even want to go! Eventually I thought “why are we forcing ourselves to go to these things when NONE of us actually want to go!”. So we stopped going. 
    For a few years I didn’t even know we were autistic - my youngest son wasn’t diagnosed until he was 10. He developed Selective Mutism when he started school at 4 and a half and the school etc just focussed on that - only later when it clicked with me that he was autistic was that addressed. This is a boy who had (I then realised) a STACK of signs of autism! He was seen by Ed Psychs etc - nothing done or mentioned! Quite extraordinary. 
    Sorry - have gone on a tangent there! 

    Thank you for all your help today - and all the interesting references and links - it’s been so helpful! 
    My anxiety has been dreadful - and engaging with the very interesting conversations on this community forum is the only thing that’s brought my mind to focus on something. 
    People on here seem to speak the same language as me - if that makes sense? 



    best wishes and thanks x 

  • Yes, I've long believed that the "unhelpful help" out there can really set us back and make us feel much worse.  More than that, I think it can compound the damage we've already accumulated over the years as we get edged by various pressures and prejudices into feeling different (in a bad way), marginalised and excluded - and this can be interpreted as another failure.  After all, they've given us all this "help" so we should have been able to use it and get better!

    Then, when I was watching one of the Ausome Training videos, I heard Evaleen Whelton also refer to "unhelpful help" and thought, yes, this is a very common experience.  I'm not alone.  We're clobbered by society and then take another few rounds from services.  "Seek help" we're told.  And we do so.  Again and again.  :(     

    So these days I tend to come here and also to listen to autistic-led training and resources because these leave me feeling bolstered, not eroded and unheard.     

    I wonder whether Hans Christian Anderson was autistic.  I can see shades of the Ugly Duckling, the Princess and the Pea and the little boy in The Emperor's New Clothes in many of us.  We're different (in ways that often turn out to be good), we're sensitive (so irritating peas won't pass unnoticed and we can alert others to dangers) and we're perceptive more generally (we don't just go along with the general mindset when it's wrong, wrong, wrong!). 

    The Nagoski sisters can sometimes be a little sciency and chirpy for me, but they definitely have a place in my thinking. They actually wrote a book on burnout before they realised that they're autistic, but there's a whole cluster of videos from after that realisation.  I wish they'd bring out a second edition of their book in the light of that.

     www.youtube.com/watch