At the end of this 18-month period, I've now completed the two most important jobs of my life. I've cared for my mother during her final months, and I've written a book about that experience - and about the the experience of growing up with (then undiagnosed) autism.
With mum's passing, there's no one left. My brother - my closest-living blood relative - might as well be a stranger I've never met. I've honoured mum's memory in words... and there's not much else I can do.
I live alone, with my cat. I work with autistic people.
Apart from that, I go through the motions of a life. I pay the bills, I eat, I sleep, I get up in the morning and go to work, I come home, I watch a movie, I go to bed... I start again.
I'll be 60 next year. Life has largely passed me by. I don't really have anything left to do. I don't want to travel any more. I don't have anything I'm burning to learn. I don't have anything left. If it wasn't for Daisy, my cat, I'd probably take myself out of the picture permanently. It would be so easy. And such a release.
But she's here. And she needs me. So I must be here, too.
Until I'm no longer needed.
I count my remaining days with hers.
It’s funny, I’ve just been writing about friendships. I started to cry, not because of my realisation, but for the lost years, all those years where I was pretending to be a friend, pretending to be normal, not even having a clue what normal was.
My realisation tonight, was that I don’t like having friends. In fact I hate it. I have friends on here and friends at my autistism group and I have friends at my trace your family history group. But that’s how I like my friends. In their place. I don’t get that whole nt friendship set up. I don’t like it, I never have and I never will. And the truth is, I never wanted ‘friends’ in the first place. That’s not to say I don’t like being around people. I do, sometimes. But only when it’s for a good reason to me.
When I first started to cry. I thought it was because I had suddenly realised that it looks like I’m going to be spending the rest of my life, with just me, my dog and cat. But then I realised I wasn’t crying about that. I was simply crying for the lost years.
If they are the ‘lost’ years, that means I’m no longer lost. And it’s true. I’m not. This realisation is one of the best things to happen to me. I can now do away with all the ‘friends’ and concentrate on my real friends. You guys on here and my other friends that I mentioned.
Tom, you’ve experienced three great losses, in a short amount of time. They are huge. They really are. As well as realising you’re autistic, these are monumental losses. We are not always aware of what we’re feeling or why, and that’s no surprise, after a lifetime of thinking we were wrong. But we weren’t wrong and there’s nothing wrong with us, or the way we like to live our lives.
You're ok Tom, this is grief and you deserve this time to process all these losses. I promise you, you give yourself some time, some tender loving compassionate care, and when you’re ready, you’ll start to come through this. And we’re all here to hold your hand, put our arms around you and tell you, it’s ok, everything’s ok, it really is.
This is grief my friend. And quite rightly so. But you’re not alone. I promise you that. There is more than just Daisy who needs you. I count you amongst my most cherished friends. Not the nt type of friendships, that wear themselves out and do what they do, this is real friendship. I feel your pain Tom. I still miss being a child. A little girl. Maybe before I went to school. Change is so hard for us guys. But more so because we’re trying to squeeze ourselves into somebody else’s idea of how to be.
Please be kind to yourself, gentle, compassionate and loving. Is there anything I can do to help? Anything at all? Give yourself comfort. You don’t have to do anything you don’t want to do and do whatever you need to do to process, grieve and gather your strength back up, in your own time, and step into the new world. Our world. No more pretending. No more fitting in. We’re going to be loud and proud, or maybe, quite and proud, but either way, we’re going to live our lives our way, whatever way that is. I’m glad you’ve got Daisy. I can’t wait to get my little puppy and kitten. My two new buddies. Hang in there Tom. Give yourself permission to grieve. Are you speaking to anybody about this?
My realisation tonight, was that I don’t like having friends. In fact I hate it.
Thanks for those words, BlueRay. And yes... I identify with this. For years now, I've found friendships to be vaguely embarrassing. I think that in part it was to do with such low self-esteem that I couldn't understand why someone would want to be friends with me, anyway. But there have been people, over the years, who've clearly wanted to be friends with me: who've invited me out for drinks, or to their place for a meal. And I've never, ever - not once - felt comfortable with it. In fact, in each case I've let the friendship slide: peter out by not maintaining it. In some ways, I envy people like my brother: loads of friends and an active social life. But then I think 'No... I simply wouldn't like a life like that.'
In some ways, I stick by that final part of my original post. I think if anything happened to Daisy now, I simply wouldn't know what to do - and I don't think I'd want to go on. I once said to a therapist, who asked me what I would do once my mother was no longer around, that I would probably just give everything up and go off to a war zone or a refugee camp somewhere. And if anything happened to me in the process - if I was to be killed in a bomb attack or something - then so be it. I have no one in my life to be responsible for. I have no friends. It would be just me. So I'd put my life to some use somewhere, helping the desperate. And I really wouldn't worry what happened to me.
Yes... I stick by that.
Oh Tom, you have got friends and bloody good ones. When we’re grieving, we don’t see straight. We see through our grief and of course, we can see nothing good through those eyes. And that’s ok. We deserve to grieve. God knows we’ve got a lot to grieve about. Rightly or wrongly, good or bad or whatever, we all know deep down, that had we been diagnosed when we were younger and given the proper support, our lives would have been different. And we have to allow ourselves to grieve that loss. As well as all the other losses. But we didn’t lack self esteem. We just thought we did, because we couldn’t do what others could. We couldn’t do that whole friendship thing and that’s bound to cause a lot of confusion and self hate in us. But the truth is, we don’t want those kinds of friendships and we don’t have to ha e them but we’ve got each other. We’re all friends on here and some day we’ll meet up. We’re free now to stop comparing ourselves with nt’s. There’s nothing ‘wrong’ with them, but if we compare ourselves against them, we will come out losing, but only 100% of the time. But we can enjoy friendships with each other. That’s not being exclusive or anything but if an nt had the choice between living amongst nt’s or nd’s, they’d choose nt’s because that’s what they are. And we’re who we are. When I’m with my autistic friends at the support group. I feel completely normal. To the point that I sometimes think I’m making all this autism stuff up. But of course I feel normal, because I’m finally around other people like me. I need your friendship. I don’t need you to do anything other than to continue to be yourself. You have to give yourself time to grieve. Get some support with that. I think what the anti depressants are doing for me are dumbing down my emotions to a level I can cope with them and therefore process them. My dad is currently undergoing treatment for cancer and I’m terrified of him dying. We don’t do well with change, and change accompanied by loss is more than we can bare sometimes. The tablets are helping me bare my loss and process my grief. I don’t know how long it will take and it doesn’t matter. When you surrender to it it doesn’t matter how long it takes, because you know that when you allow it to process, it moves on through you. And the sun will shine again. Right now you need some support. The support I get from the well being officer is also helping. She was suggesting all these things for me to do. All great ideas. I could see they would help. But the truth is, I’m tired. My body is processing a whole load of stuff and I’m allowing it to happen. Be kind to yourself. This really will pass. But it’s deserves respect. You’ve lost so much. Spend some time with your mum. Hold her tight and let her hold you. Because you know, I can’t always hold my son, but I hold him in my heart and I know that that is more than a physical hug. I might not be able to express my love in the nt way, but I do love. Greatly. I’ve got something for you to do, when you’re ready, when I’m ready and I’ll be better than anything you’ve done before and you’ll love it. I keep alluding to this, and not really saying anything, but that’s because I too need some time to just rest, look after myself and allow all of what’s been and gone to also leave me. Completely. We’re new people now. We’re who we were born to be and we’re gatjering in numbers. You just need to take some time and when you’re ready, we’ll be getting that book published as well. That’s not a loss. Just a temporary set back. Maybe you just need to digest what’s in it. Have some time with your Mum. Allow yourself to grieve but get some help. It helps keep one foot in the here and now. And of course, we’re all here for you.
p.s. we don’t have to have nt friends anymore but it doesn’t mean we can’t have friends, just ones that understand us, including our pets.
Yes, this is all true. It's funny, but when I'm at work, I look forward to the service users arriving in the mornings because I can then get straight into their world - because it's where I belong, anyway. They're all severely autistic. The mildest one is a young lad in his early 20s with the mind of a child. We have a lot of fun larking around, because it brings out the child in me. We sing wacky songs. He loves 'Hit Me With Your Rhythm Stick' by Ian Dury, and we sing it together. There's another very capable lad who spends all day on his own at his computer. He speaks - but only to say 'yes' to staff. He has conversations with himself, though, and it's clear he's highly intelligent. None of our service users is friendly with any of the others. In fact, none of them have any friends at all. I fit right in! The other staff will often get into groups and discuss the sort of stuff they like to discuss - last night's TV, the latest boxed set, holidays, shopping trips, cars, football... and, of course, gossip. I just stay on the periphery of it all.
Someone commented yesterday about one of the service users, saying he has no friends at all. I chimed in by saying 'Neither do I.' People still find it hard to believe, because I'm 'friendly' - and I'm 'not as bad as our clients with my autism.'
It shows how, even with trained professionals, it'll never be understood by them properly. It's a whole different mindset. Literally.
Totally. My psychiatrist (or autism nurse I think he is) is very good at diagnosing autism and he always helps me in some way every time I go to see him but I know he doesn’t know what it’s really like, and how could he. In the same way we don’t know what it’s like to be them.
You sound like a valuable asset to your clients. It has always puzzled me why care workers get paid so little and are valued so little in terms of how most of the population generally view the profession yet it’s such a skilled and valuable job. I couldn’t do it and I greatly admire people who do. There’s a real difference between somebody who really understands the clients and those that have simply learned the job. I’m not saying one is better than the other but certainly in social work it was an asset because I could make more accurate assessments as the clients were more open with me.
That tea room chat kills me you do well to keep on the periphery and keep friendly with them all and remain sane! How are you feeling today anyway?
The responsibility of the job is enormous. We literally have someone's life in our hands each day. One mistake with food, or medication - one moment of an eye turned the other way - and who knows what might happen? And yet I earned £1 an hour more when I worked as a shelf-stacker in a supermarket (though, having said that, it was a horrible job - a real slave-camp... I have nothing but respect for those people). We don't make profits, do we... so we don't contribute to GDP! I have worked for private care firms, though - and they're much worse. You're cutting corners with food for vulnerable people - just so the shareholders can get their dividend! I'll only work with charitable trusts now.
I'm feeling more and more like an alien every day! Some of the conversations I hear at work - the preoccupations! Growing up, it's no wonder I was confused and bewildered, and felt odd - like I simply wasn't keeping up. Fashion, sport, games, gadgets, music. I knew people who spent almost every penny they earned on music, and were always listening to it, whereas I just occasionally bought a record and listened once in a while. I like music. But not all the time. Fashion? I just don't get it. Same with hairstyles. I guess it's all connected with mating and attraction, which are things I've never understood properly. I always used to think that stuff like sport, music and TV were things people got bound up in so they'd have common ground with others. Also, at work, I pick up all the time on comments that people make which are just off the cuff - but they always feel like they're directed at me. Someone had a go at the Labour Party the other day (a guy in his 30s who was brought up with the post-Thatcher sense of entitlement) and was directing it at me, for some reason. I suppose my views make me what most people would term a 'socialist', but I've never been a joiner of any group or party - a) because I don't like to neatly categorise myself, because I think we're all more complex than that; b) because it all seems so polarising; and c) because within such groups, the differences of opinion only demonstrate (to me, any way) the pointlessness of it all. Just after uni, when I became vegetarian and got involved with hunt sabbing, I joined an animal rights group. I didn't stay long because of the infighting (vegetarianism v veganism, progressive welfarism v liberation). Sometimes, meetings would descend into chaos, with arguments and people walking out - and I was naively thinking we were all supposed to be singing from the same hymn sheet! So, at work, I pick up on things like 'Better to be working than sponging off the State' and 'left wing snowflakes' and 'dirty scag-heads', etc. The kind of unthinking generalisations that drive me to despair. I can't be bothered to engage with it. I'm more interested in nuance and back-story. Anyone who claims benefits because they think it's an easy life is welcome to it. My experiences of it haven't been like that. Addiction? People don't do it because they're simply feckless and irresponsible. Sure - they have choices. But some choices are much harder to make for some people. Addiction, as you know, is a horrible illness. I wouldn't wish it on anyone.
Your job sounds great. I wouldn't want to join the kettle crew either, I always avoid that.
Why do posts keep disappearing??? Comments I have made have disappeared, where do they go??
Welcome to the club.
Several of us have been complaining about this for months.
If you enter the thread from oldest or newest post. You see different posts.
You also see different posts if you press next or previous.
It's what happens when a thread gets too long.
The 'machine' is autistic with dementia. And maybe a bit schizophrenic.
I’m in the right place then, I identify with the machine
I’ve seen some of you talking about disappearing posts but up until now, I hadn’t had any. I’m going to play with the oldest/newest buttons to see if I can see any of my posts.
I just got turned down for PIP, by the way. Total lies!!!
You’re right. I just clicked the newest button and my post was there, totally out of sinc to where it was originally posted but it’s there. Weird. A bit like me :-)
Sorry about your PIP. Here we are all in a similar boat and try to help each other.
Thanks Robert. I’ve got a guy coming from the disability rights group to help me complete a mandatory consideration letter. Then my next mission is to get into the support group. Then I can start sorting out my life and my wonderful new business plans. Oh, and get my new little buddy, my little miniature poodle. He or she will hopefully help keep me in one place until at least I have a regular and growing income and then we can move into my van. Happy days. What’s happening with all your appointments and stuff?
I looked into a PIP, but didn't seem to meet any of the criteria. I was basically told 'No chance. You've worked most of your life, you manage independently, etc.' Even pointing out my struggles, and my long periods of sickness following breakdowns, didn't swing anything.