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How do you get neurotypicals PAST the disabilities to give you a shot at joining in?

ulrichburke2

Dear Everyone.

I'm an odd case.  I've got Cerebral Palsy, Hydrocephalus, Asperger's and Dyspraxia and together they make me LOOK a lot more disabled than I feel I AM - I feel I've got a foot in both worlds, neurotypical and neurodiverse.  The upshot BEING, each side seems to think I belong to the other and I'm an interloper in theirs.  

I'm 59 now.  In my life, I got moved on from London because I was beaten up, robbed and had all my flats robbed empty in London.  Didn't do well at Comprehensive School because my disabilities make of me an ugly person, so many people have delighted in telling me, and I was always the target in the playground for everybody no matter who they were.  Went to specialist disability colleges after school, the other disabled people there ostracised me because of my ugliness - they were all having lovely evenings out, friendships, being with people, I never managed to achieve any of it.  Never got to go out with any of the groups, got my stuff smashed up and got so scared of going into meals I wouldn't do it unless the one-person table was empty.  Went to the Recreation Rooms after class for awhile but there were a bunch of BEEG Autistic guys there who just sat and took the mickey because they could see I didn't know how to handle it.  I remember getting all my quals - which surprised everyone! - and going to the Passing Out Night in the College bar.  There was a chair at one of the tables so I gathered up my courage, went over. "Is that chair free?" "It is."  So I sat down and the big guy opposite me leaned over.  "You got the chair.  F Off with it!" And the others burst out laughing.   

Thing IS - nothing's changed. I'm 59 now.  I've never had friends, never been part of groups.  Tried joining a group for autistic adults and lasted 3 meetings.  At the end of the third, the neurotypical lady running it took me to one side.  "I'm sorry, I don't want you infesting my group any more...."  and I got the bum's rush.  No idea what I did wrong.  This was in Brighton, where I live now.  In Hastings, I ended up banned from everywhere.  Why? Because if I was there, the others took the mickey out of me or worse.  Usually worse.  And it was easier banning me than banning them.  I became the Town Monster there for 20 years and got all my teeth kicked out, head kicked in, boiling water chucked over me giving me permanent ulcers, all my flats burgled empty.  In the end the cops had enough of me and moved me to Brighton - where nothing changes! Got the others in my flats constantly trying to get me evicted because "Why should we have to live with that creep? Look at him!" Got beaten up and mugged again a month back, few weeks before that was walking past an open-doored bar and got "You not ringing bells tonight, mate?" "Nah, Frankenstein's spare body parts, innit!" "Yer Mom into [edited by mod] gorillas?" "Bet yer Dad left home when you was born, didn't he?" Thing IS - that's EXACTLY the same comments I got when I was in the playground.  I always thought when I became an adult, if I worked hard and did the best I could for others I'd get to join in, but it simply never happened.  I did fine with prospective employers - until they actually got to LOOK at me, then the jobs never happened.  Always tried to help others but couldn't tell when I was being set up and got into trouble with the cops quite a bit by being suckered by people I THOUGHT I was helping.  Could never tell when people were being fake-friends - several times I had people round, in various Hastings flats, that I thought were friends and they'd take me down the pub so their friend could break into my flat and rob me empty.  Of course there were times the other ways around when people asked me out, I THOUGHT I was being set up and turned them down - but I wasn't.  How do you tell? 

So I'm 59 now.  I'm STILL trying to get to join in, still being treated by others exactly like they always have treated me - there's no childhood or adulthood, just peoplehood, once they've decided how they'll treat you, that's it, game over.  Never really had a job, despite having 16 good qualifications and having tried for many, many different ones.  Never had friends, nor relationships, nor been part of social groups and again - I've tried.  I think the main problem there is I'm between both worlds.  Neurodiverse think I'm a Quisling from Neurotypicaland and visa-versa.  And I don't KNOW how to be with either, that's the main prob.  Dunno if anyone's read 'The Jungle Book' or seen Mowgli movies but Mowgli had Raksha to teach him how to be with the wolves even though he didn't look like one.  I need a Raksha to teach me how to be with EITHER lot - Neurotypical OR Neurodiverse! Examples - I'm banned from the Pier because my face scares the customers, banned from a massive bar because the regulars complained about having to look at me, ditto with many similar places (In Brighton, ended up being banned from the whole of Hastings, still am!  Nowadays I'm banned just because I've always been banned.) Got shown a new disability group recently - but haven't got the courage to go there.  I don't know how to DO it.  Last group I tried, I volunteered to help out in the kitchens, nope, knives, I might run around stabbing people. In the office - am good at computers - the lady took one look, grabbed all the paperwork, ran in and slammed the door! In the shop, nope, other customers wouldn't like looking at me.  New wildlife centre opened, went along and volunteered, got asked if I had 2 references, one from a previous employer.  I don't have, why not try me out? Sorry, can't do that, you must have two references.....  Same with every voluntary shop in Brighton, tried 'em all - when was the last time you saw a disabled person in a charity shop? Right - me neither! 

So I just look out from my window at life going past me and hate still being here.  Hate watching people talking to friends on mobile phones, being with groups, going to be with groups, being Part of Things - and I've never managed to get to do any of it - but I still want to.  I just don't know HOW to get to do it.  The others at the new disability group seemed welcoming enough - but they've all had experiences at joining in so they know HOW to do it - I'm lost.  I don't know what to do, what to say, when to say it, how to do conversation - I don't think I've HAD a conversation with anyone in as long as I can remember.  Imagine you're in France, in a group of French locals all chattering happily - and the only French you know is the bits you remembered from schooldays.  I don't know if it's something like that which got me banned from the Autism group or the group I joined and then tried volunteering for - but there is one thing I WOULD like a bit of advice on.  

If you were me, how would you get to DO any of the above? I mean I wake up, spend every day watching everyone else doing things I'd LOVE to be part of if only I knew how to GET to be part of it all, go to bed.  I've had so many bad experiences in shops - example, in a charity shop and a guy told the staff I was 'looking at his kids'.  I wasn't, got kicked out anyway - I only ever go to the supermarket late at night because I'm not amongst crowds of people BEING with eachother then and I don't feel so ashamed of being me, really. Of course I miss never having dated/had friends to be with but as with everything else, I've always tried, the ugliness has always gotten in the way. "Oi! Monster Munch! What you doing around here?" "Come to look at our girls have you, creep?" 

How do you get people, from either side, PAST the disabilities to give you a shot at joining in - and, if that happens, how do you learn HOW to do the joining-in thing - think example-with-French-speakers, above - so you're not kicked out for getting it wrong?  Or think you're being set up when you're not, or not being set up when you are, so you either get mugged or lose out on an opportunity? The above's a synopsis - had loads more happen in Brighton and Hastings but never anything GOOD happen.  It's always been people from either side jeering at the one thing I can't change - my ugliness.  Hate being here, these days, I mean what's the point? Had the others in my flats telling me they're going to get me out on the streets, because why should they have to share their flats with a creep like me.  Would really love a few lessons in how to do conversation/how to socialise so I can give the new disability group a go, right now I'm just too terrified to try.  ('Just Go Along And Be Yourself....' won't work.  Trust me on this!)

Yours hopefully,

Chris.

    • Just had a thought, rather than look at charity shops which seem to me to be run like businesses. Have a look at an animal rescue centre. Try a small local one. When I went I wasn’t asked for any references. They were eager to take my offer for free help. There is something special about helping animals, fir me at least, first they aren’t human with all the complexities that comes with it but they recognise someone who is caring for them can give back lots of love. It’s very rewarding. There was some medication giving which I was helped with understanding. But they said it wasn’t an issue if I left that to others. So I mainly cleaned out cages, fed and gave water, talked to the animals and stroked them a lot. I think other people that work at  animal shelters are generally some of the nicest people out there.

  • Hi Chris. Although I have had similar experiences I think my life at 58 has been significantly different because I happened to come across as many “good” people as “bad” ones. Unfortunately that’s a reality for everyone be they neurotypical or not. 

    I left secondary school with the impression I was ugly, unlovable and would ultimately fail in life. I’m gay and came out in my 20s in 1980s. I think you can imagine what it was like in the 70s and 80s for me. My family weren’t that supportive but at least the hostilities ended. I have been rejected by groups of friends only to find out my brother continued to see them and 30 years later says they are coming to his wedding and he’d understand if I didn’t want to go. I’ve had open homophobia from those I worked with.

    At age 30 I was in a near fatal road accident that I only just survived. I am physically disabled now tho. I’ve been rejected by people for that too.

    I only received my diagnosis of ASD, ADHD and CPTSD this year. But I am in a reasonable good place now. I have friends, I’m married. All the things I never imagined I’d had. I think it all came down to who I chose to be with. Friends are tough things though. I’ve had people I thought were good and I put in a lot of effort only for them to not be around. I think you can tell quite quickly you might be each others cup of tea quite quickly. Even if you don’t necessary get all the rules. I think the best friends are actually the ones you both find easy to be around each other.

    I don’t have anything immediately to suggest to try. But I think you can find friends and you can find fulfilment in a job, charity work or hobby. I’ve been told not to do CBT unless it was with a therapist knowledgeable in ASD and adapts the therapy.

    Be strong.

  • I believe you, I'm a bit the same myself, only I have the opposite problem in that I don't want to join any groups, I don't do groups and people seems to insist that I should, so I stop engaging altogther.

  • in reply to ulrichburke2
    ulrichburke2 said:
    Anyone got any clues HOW you tell when you're royally blowing it and how to rectify the situation if you realise when you are?

    You have taken the step of realising that the common factor is you and you want to find a way to do something about it - this is a big step forward.

    If it was me in your shoes I would try to remember as many of the incidents as possible and start writing down the interactions that led up to it - where you first noticed the change when they began to be hostile. I would expect the triggers to be a few interactions prior to this so would focus on looking at common threads.

    This part is difficult as you are reliving the traumas and are trying to identify where you have done something which is really hard to do sometimes.

    For instance I have found the following behaviours are triggering for others in the past:

    1 - repeatedly talking about my special interests and not asking about their interests or taking time to actually listen to their replies.

    2 - talking over them because I wanted to get my point across.

    3 - bringing the conversation back to the things I want to talk about rather than letting others have a more organic conversation.

    4 - talking loudly and often in a monotone voice. It was only when I recorded this and played it back that I realised how annoying I could sound.

    5 - Dismissing other peoples point of view as I believed mine to be the "correct" one.

    This only covers the conversational side of things - there are other elements of body language that can come into this too such as staring, stimming (flapping hands, tapping fingers / feet etc).

    One other thing to consider is that personal hygeine is important in social settings too. If you have body odour and/or bad breath or don't wash your clothes regularly then these can make it very uncomfortable for others to be around you and they may resort to aggression to try to get rif of you.

    These are a few of the more common issues around autism and group dynamics that I think could be worth considering.

    If you can narrow the list down then you have something to work with IF you decide you want to.

    These are just a few of my thoughts anyway - do with them what you will.

  • Good morning from America, Chris.

    I feel like  said it perfectly and gave excellent advice, so I’m a little afraid of offering any advice as she’s already nailed it. You do say though:

    ulrichburke2 said:
    I'm happy to try any suggestions anyone makes, and I promise NO HARD FEELINGS if the ideas don't work

    So I guess I’ve got one idea. I don’t know if you already do this, but conversations often hinge upon one participant being an active listener. That means not just listening to others ramble on, but also engaging with what they are talking about. If they are talking about their dog, ask them questions about their dog. If they’re complaining about their neighbor, support them with phrases like “I can see that really bothers you,” to let them know that you are not just sitting there letting them talk to a wall.

    I get it though, it sounds like you’re struggling with people judging you even before you have a chance to listen. But if you do give the group a chance you might find someone that is willing to look past that to have someone that is willing to actively listen to their stories and problems.

    I hope that might help.

  • in reply to Suzanne Mod

    Dear All, 

    Thankyou for your lovely answers! 

    Suzanne Mod, I'm not struggling in that way.  It's not 'I'm-so-depressed-I-wanna-DOO-something....' it's literally learning the mechanics of HOW to do it.  Prob. a silly analogy, but pretend you were watching a group of people tapdancing and wanted to join in with them.  You'd have to learn the mechanics of HOW to tap-dance before you could go and join in, otherwise when they discovered you couldn't tap dance they wouldn't teach you how to, they'd just leave you on the sidelines.  Me, I just feel like a cat in a dog sanctuary! I don't know how to 'do dog', so it's obvious I'm a cat and we all know dogs love cats in their groups.  Not! 

    Cinnabar-Wing, hadn't said this in the original post - my bad - but I tried joining an Asperger's group in Brighton, few years back.  Lasted 3 meetings.  On the 4th, the neurotypical lady running it took me to one side, told me she didn't want me 'infesting' her group and gave me the bum's rush.  I SHOULD have stood my ground and asked what she meant, but I didn't have the courage to.  Felt a bit humiliated and just left.  The thing about this new group, also run by a neurotypical lady, is that in my life I've had about as much luck with other disabled people as I've had with able-bodied. Remember I've been to 2 disability-only colleges - Queen Elizabeth's and Portland Training College - and had zero luck getting on with the other disabled people there and never understood what I was doing wrong. Tried my best, ended up being too scared to go into meals unless the one-person table was spare. What I'll remember forever is the lovely guy from the kitchen staff who saw what was happening and gave me his ticket to a Jean-Michel Jarre concert. Went and saw him on a little artificial island on the Thames! Easily the best night of my life, that.  

    It's just, Cinnabar-Wing, I've blown it somehow with one Asperger's group.  Going back years, I blew it with the groups in the Colleges.  There was more to it than just my face, I know that, but I don't know WHAT more there was to it.  I don't know what I was doing wrong, they wouldn't tell me.  I just remember Robin, ex officio course group leader, coming up to me and going "Look.  We don't like you.  You don't like us..." which was NOT true! "...Don't spoil the rest of our course by talking to us." And after that, that was it.  I flat wasn't there to them any more. How do I know that in the mysterious way I blew it with them, I won't blow it with this new lot? And how do I work out HOW I blew it with Robin and the Collegiates so I don't blow it with this lot? I flat haven't got a clue WHAT I was doing wrong, just knew I was doing SOMETHING wrong.  I might well be still doing it wrong and it might well be the reason I'm still having problems with people - as I've zero idea what it IS - I could guess a ton of times and every guess would be wrong.  Or one might be right.  But WHICH one!?! And how do I TELL which one? You're in a group of dogs and one suddenly growls and lunges at you.  How do you work out WHY it did that and none of the other dogs did? Wouldn't you just not go in the group of dogs again, incase it repeated the lunge but this time with teeth in?

    It's not I'm scared to go into the new group - I just don't want to blow it again with a group without knowing WHY! Got a lifetime history of blowing it with groups, sometimes because of the face if the group's neurotypical, sometimes for This Mysterious Other Reason I can Only Guess At! That's all it is, just don't want to blow it with this lot too especially if they've gotten feedback from the other Asperger's group I got kicked out of. This lot is for all disabilities, not just Asperger's, but even so.  

    Anyone got any clues HOW you tell when you're royally blowing it and how to rectify the situation if you realise when you are? Wish I could give you more clues but I don't have any, just know it happens every time after a while.  OK I'm 59 but I'd like to get it right with a group ONCE in my life!!

    Thanks, all, for reading my post and being so nice.  Sorry I'm asking more of your tolerance but I don't have anyone else to ask.  I'm happy to try any suggestions anyone makes, and I promise NO HARD FEELINGS if the ideas don't work, it'll just narrow down the possibilities until the jackpot is hit, I suppose! Last bit.  

    I'm with an online counsellor and I'm FAIRLY sure she's spotted SOMETHING - but even though the word 'counsellor' MEANS 'advisor', she says she isn't allowed to give direct advice.  Which is annoying cos I need my nose rubbed in things, it's the only way I see them! I can tell she's busting a gut to lead me to SOME conclusion that will give me what she's not telling me directly - but I'm not seeing it.  She knows it's not intentional on my part, I can't make her break her training and TELL me stuff and she's sorta run out of ideas as to how to lead me any more.  So there's obviously SOMETHING! But how do you tell WHAT?

    All - or any! - ideas will be tried, NO HARD FEELINGS if they don't work. Promise!

    Yours respectfully,

    Chris.

  • Hey Chris, 

    I'm so sorry you've had such a hard time, it truly reads like a Shakespearian tragedy, and it must feel things are still stuck in that era from the way people treat a disabled person. 

    No one should have to go through so much, society is not as forward as we think. I think the biggest cruelty is being labelled some sort of problem just from how you look, when it's the ones that smile and act charming who can be in the news for heinous crimes. 

    The world is so full of nasty people who seem to enjoy crushing others, especially easy targets. The person I'm really disgusted at is the one from the 'support group', if they can say such horrible things, that shouldn't be near vulnerable people. 

    I would be so guarded if I were you after what you've experienced, so can fully understand your well founded fear of trying. But I do really wish you could get the connection you crave too. Perhaps, you could write to the new group first, and explain your situation. If you're Asperger's, you are fully ND, and have a place, but you could say you've have bad experiences before. If they are willing, you could ask if there is a way of easing you in first. (Like coming at the start or end for as bit so it's not the whole thing?) And if you need conversation pointers, try start a post here about ideas of what to say, or if you should say certain things (if you think you say problematic things, you could ask for advice/see if it is? This way you could build up some scripts of okay things to talk about (even do a search on the forum as I think there have been threads on here before and they can be handy to see what people recommend/give their experiences).

    I would also be tempted to get a sunflower lanyard -it's a bit of an irony to wear hidden disability thing when you said people can tell, but you might find it's socially looked down on to be so outwardly bullying towards you if you wear it? It's just an idea, but it might possibly help? People feel they can exclude you for physical appearance, but if you signal your mental one too (Asperger's/Autism being recognised as such and a protected trait), they might not be able get shop staff to remove you for no reason as easily. 

    I hope you can find the strength to reach out to that group and see at least. Perhaps also ask your GP about social prescribing/ counselling to help find other outlets too?  You shouldn't have to struggle with it all on your own. 

    Best wishes to you. 

  • It's a real struggle sometimes, getting people to see the person instead of the disability. But I find that once they actually get to know you better or see what you're really capable of, they become more willing to see the person

  • Hi Ulrichburke2,


    I'm so sorry to hear that you have been treated this way.

    The National Autistic Society does not currently operate a crisis or emergency service. If you’re finding it hard to cope or have thoughts of harming yourself, please seek help. If you feel you [or anyone else] is at risk of immediate harm, dial 999 or contact one of the mental health crisis lines listed on our Urgent Help Page: https://www.autism.org.uk/what-we-do/help-and-support/urgent-help.  

    If it’s not an emergency but you’re still struggling, speaking to a health professional can help. If your GP is closed, you can call 111 for NHS support. In England, Wales and Scotland, you can now choose option 2 to speak directly with mental health professionals: https://www.nhs.uk/nhs-services/urgent-and-emergency-care-services/when-to-use-111/.  

    Other free, confidential support includes: 

    • Samaritans – Call 116 123, 24 hours a day 
    • SANEline – 0300 304 7000 (4.30-10.30pm daily)  
    • Shout – Text 85258, 24 hours a day 
    • Mind Infoline – 0300 123 3393 (Mon–Fri, 9am-6pm)  

    Take care

    Suzanne Mod