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?
BlueRay said: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.
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.
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.
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.
Yesterday I went to a jobs fair ( a health and social care fair) at the job centre. It was not like the last and a bit unusual. Spoke to several people.
There people from Mind, Mencap, educational services, autistic services, care homes etc. I recognised one person from a place I attend. And I'm involved with three of the places that were attending. There's very little point in going to a stand when I'm familiar with what they do and I'm already getting help from them.
Today's ESS assessment has been postponed. Someone from the city council is ill. I'm disappointed . I was looking forward to visiting the Mind local headquarters again.