Just feeling very alone right now

Hi @Phoenix_Rising @Sahara @Appleblossom

Yes ... "call anytime" is a phrase that is held by what are referred to as social cues, or social convention .... it means you are being offered to call at any time between the hours that are socially accepted as reasonable. These are generally pointed out progressively to children as they grow into young adults, by close family and friends, or school teachers, or social workers .... but for a variety of reasons, these cues can be missed, or overlooked in the teaching.

Having Aspergers means that your sensitivity to picking up the social cues is low, but your therapist can help teach them to you as a set of social "rules" that can be followed that way. It means that the people who said "call anytime" weren't actually lying to you, it was just an incomplete offer because they were assuming that you were aware of the social conventions that complete the sentence as ...

"Call anytime within the socially acceptable hours of - between 9am and 8pm Mon - Fri, and 11am and 8pm on weekends".

This is why community understanding of the wide variety of spectrum "disorders" is important .... so rather than being considered disordered, those more highly aware of social cues can pick up the fact that you require the more complete explanation. It goes both ways, and the onus shouldn't be placed on you all the time ....

People with Aspergers tend to follow certain career paths because they have strengths in those directions. Their (your) very literal outlook helps to perceive things that can get a bit fuzzy for other people who allow too much information through to be able to clearly define the black and white answers to problems.

My sister may well have Asperger's syndrome, and perhaps my husband and other family members do too, bearing in mind that it is a spectrum.

Hi @Appleblossom @Faith-and-Hope, @Sahara

@Appleblossom I love that we have some of the things you described, in common My current psychologist is fine with me sitting on the floor - I spend the entire session on the floor. When I said in my opening post that I "dropped to the floor", it was actually that I was already sitting on the floor cross-legged and I dropped into a more curled up position under my psychologist's desk. I super love that she is fine with me being on the floor. The rule is that I can sit as close to her chair as I want to, so long as I don't touch her...which is really hard because my natural inclination is to put my head against someone's leg when I'm super distressed. But this is an ok compromise, plus she's fine with me telling her when I have the intense urge to nuzzle against her, which in itself helps to settle the urge. The whole physical touch thing is a big issue for me as I totally understand that most psychologists have boundaries around this but at the same time I do find physical touch soothing when I'm super distressed and I don't have anyone in my life to provide that. Things like patting my animals, cuddling my soft toy etc help, but those things don't totally meet the need for safe human touch.

Thanks for identifying that there's a difference between literal and metaphorical family. I really do find that conversation of "you can make a family from friends" infuriating because what I hear people say is so totally contradictory to my experience.

I am both enjoying this conversation and finding it hard. My heartbreak is that I wasn't diagnosed aspie until I was 36 years old - after I figured it out myself and went and paid for a formal assessment in order to be told what I already knew. I was diagnosed with BPD twenty years ago and basically every thought, feeling, and behaviour that I expressed since then was seen through the lens of BPD...and you probably know the stigma around THAT diagnosis!!!!! A few years ago I had a major workplace incident (police and ambulance called, workcover investigation type major!!!!) and I knew that the BPD diagnosis simply couldn't explain what happened that day. Thus began a journey of about two years, gradually putting together the pieces of the puzzle such that by the time I walked into the place for the formal assessment, I had about eleven pages of dot point notes on why I thought I has asperger's. As someone pointed out, the psychologist would have taken one look at the layout of my notes and ticked the "yes" box in her brain before even starting the assessment

I find it heartbreaking that I had spent 17 years in the mental health system, had more than 40 psychiatric admissions, and yet no one had noticed the tiny little detail of AUTISM!!!! I have since discovered that there is a big issue with autism spectrum disorder (ASD) not being picked up in girls and women because it presents differently compared to in males. Interestingly, I have learnt that a lot of women who end up getting an ASD diagnosis have previously been diagnosed with a swag of MI - BPD being one of the most common ones. I believe a dual diagnosis (BPD & ASD) best describes my own muddle, but it seems there are a lot of aspie women who get misdiagnosed with a MI.

Given I wasn't diagnosed, I didn't get any of the social skills training such as what @Faith-and-Hope describes. Thus I know very few of those weird social rules I was working with my uni counsellor when I got the diagnosis and she started me on that learning process. I know my new psychologist "gets" the issue and I know she will be able to help me in this area. However, the reality is that I have a giant mess and at a rate of 50 minutes a week, it is going to take a very VERY long time to sort through it. So it isn't that I don't feel I can learn...it is just heartbreaking that I'm starting at age 39 when I'm already in such a pickle re. employment, social isolation etc. I can see that if I had been diagnosed earlier, I would be in a MUCH better space.

I hate how everything was always squashed into the BPD box. I spent so many years telling people "I don't understand" with respect to various things and being told "yes you do, you are very intelligent, you are just pretending to not understand." Getting the ASD diagnosis has been really helpful in helping me to communicate to people that when I ask fifty thousand questions of you, I am not trying to be difficult, argumentative, etc. I'm just trying to figure out what the heck you are saying!!!! I know I seem to annoy people and they become defensive when I try to unpack what they are saying. They seem to think I am trying to pick an argument but I'm really not - I'm trying to understand them. It is sooooooooooo frustrating...but less so since I got the diagnosis and thus have a sense of why we can't communicate well. Most of the time when I am talking with anyone, it really does feel like we are not communicating in the same language...as the "call any time" thing indicates.

@Faith-and-Hope I really liked the way you made the point that the onus shouldn't be totally on the aspie to make the communication thing work. I have been told at times that I need to compromise in order to fit in in the neurotypical (NT) world. The thing is, I DO compromise - A LOT...but NTs don't see how much I'm compromising because what they see is "normal" and they don't realise that I am giving up part of my way of being in order to present that "normalness." So...they only see the bits that aren't "normal" and then criticise me for being too rigid etc. Grrrrrrrrrrrrrr.

My other heartbreak around not getting an early diagnosis is the employment situation. You are so right @Faith-and-Hope that aspies are very well suited for particular careers. I have two university degrees but I am basically unemployable. All through my uni studies I was asking people what I would DO with the degrees and I was constantly told not to worry about the future. Whenever I was locked up in the psych ward, as soon as they knew I was studying, the nurses etc would say something like "oh well once you get your degree you'll be right." I think that attitude stems from the stigma around BPD. It was like they were saying that I just needed a bit of direction or something and everything would be ok. Well nope, I graduated from my second degree a year ago and nothing is ok!!!! Right now the most realistic option is self-employment and that is something I am working towards amidst my muddle.

Wow, that got really long didn't it! Thanks so much for your replies. I feel much better for having talked that all out .

Oh, I feel for you. I understand. I'm alone, too. I also have no family - they won't speak to me, let alone give the support that they "should" give. I had a "friend" down the road - she's a counsellor by profession. We've had conversations about her work and she's spoken about how much she cares for her clients and gives them her personal number to contact her out of hours. But one day I happened to let down the "I'm doing fine" mask and told her how suicidal I was feeling. She told me not to be "such a sad sack", and has several times fobbed off my expressions of hurt or depression or anxiety or flashbacks from my violent ex with "oh, you think you've had it bad, this is what my ex did" kind of thing, like we're in a competition and she's winning. Really helpful......

I've also had Lifeline hang up on me and put me on hold for 15 minutes before I gave up. I've also had the unhelpful suicide callback people tell me "go see a psych, sorry, we're busy and have to go now". I've seen every counsellor/therapist/psychologist in my area, all of whom have pretended to listen or care for about 3 sessions, after which they don't bother answering my calls to make another appointment. I can't even pay someone to pretend to care!

So I really get the "needing support and being ignored" thing, and I really feel for you. It really sucks that there's nobody to turn to. All I can say is from what I've seen of this forum (and admittedly I'm brand sparkling new here), all these people are lovely and willing to "hear" everybody and offer support. Hopefully, we've both found the place where we can be heard and supported and it'll help us not feel so helpless and hopeless.

I hope it gets better for you. 🙂

@FreakyFrankie Thank you for your reply. It is kind-of nice to hear that someone else has had lifeline hang up on them. It makes me feel SO bad when they do because the message everywhere is "call lifeline". Every time they hang up on me it massively reinforces my sense of being invisible and worthless and that there is no help available and that the whole "reach out and ask for help" thing is rubbish.

@Phoenix_Rising

Its great your psychologist is relaxed and accepting of your ways of "relating and being" "in space".I found it helpful to use a cushion and still often place it on my lap .. as a soft protective & comforting measure. ie Protect from other .. or sooth the feelings that arise within.

I do hope you are able to manage your responses so you dont need to fall into the banging (HB cos it triggers me a bit to think about it) again. I have been free of it for 15 years, which is a great relief. It exacerbated my neck issues from previous overwork. Now I allow myself ample movement and rest and rocking and many cushions in my bed. It has been important to do that for recovery despite a psychologist pre-maturely telling me never to stay in bed.

@Faith-and-Hope I started the HB behaviour at about 29, in the midst of substantial chaos and life&death issues. After I had studied substantially in psychoanalysis and psychodrama and had therapy. It emerged gradually and its most frequent was maybe 3 times per year .. and I was mortified about it and found I could only "articulate the behaviour" many years later .. ie say what it was that happened. Through assistance with PHYSICAL therapists eg Physio & Osteo & Chiro .. I was given credibility..... they could see the twists and strains in my body ...and treatment (adjustments and stretch & exercise advice). I am only just realising now that I didnt articulate it to MH workers til about 7 years after it stopped, maybe because I had been strung along by them .. I dont really know .. there were TOO many pressing demands on me ...or maybe I only had weekly therpay sessions for about 9 months .. its all we could afford .. or justify in the household budget. i probably had significant strength of character at the time it started .. for it not to be due to pettiness of any kind .. it was due at first in trying to convince my mother to get help around the incest and suicidal behaviour of my sibs .. so in order to prevent their deaths... but nothing would get through to my mother.

The way you depict it with your sister, it feels demeaning to me, but I'll try not to take it personally.. I doubt HB is a behaviour entered into lightly .. I dont remember seeing it in the orphanages .. I am trying to help you .. in telling you about the concept of EGOSYNTONIC .. which I have mentioned on this site before ... perhaps there was a sense of alliance with your mother that.. at a deep level of her being .. your sister felt was extremely invalidating .. of her experience . ??? maybe I am wrong .. but I feel it has to be said.

Its interesting to hear your and the other comments about "call anytime" line. Maybe I put it into the insincere box due to being hurt. I will rethink that. I also noticed how limited my time slots for acceptable calling was ... my understanding has been couched in my listening to other people complaining, rather than in me ever getting proper communication about it or seeing appropriate behaviour modelled.

@Phoenix_Rising

I wasnt diagnosed as ASD but the psych who diagnosed my son thought it was likely. There are some elements of BPD and ASD that are at odds with each other. ASD are seen to have too much investment in special "interests" and BPD not enough follow thorugh .. or .. something like that .. choose a self-concept that worke best for you.

It is horrible that you were hospitalised and treated poorly for BPD for so long. I can understand your wariness of pdocs. I know a lady irl who paid for her ASD diagnosis. For me she was a breath of fresh air in my old conservative choir. Admitting her issues, analysing and unpacking them and trying to do the right thing by others. She also found & connected with other Aspergers people to develop some sense of community... keep the thought going that you will find people to relate with .. but maybe it will take special people .. or even more interesting people ..

The church choir where I met her was an enviroment where .. there was excessive conformity without genuineness ... and I got slugged by the ..."as you well know" and the "my way or the highway" lines amongst other PROBLEMATIC attitudes.

I now believe the NTs can learn a thing or two from Aspies .. and all the other people with various MH diagnoses. I actualy dont believe in

"normal". It is often used in a way to justify particular behaviour for the speakers needs .. I am Aspie enuff to prefer graphs and stats .. not sure where your strengths are @Phoenix_Rising but .. wondering if you can see my weird sense of humour ....??

@Appleblossom I'm sure you are well-meaning, but I found your comment about BPD and ASD being at odds and that I should "choose a self-concept that works best for you" intensely distressing. The thing you don't know about me is that after SH-ing this morning, I have spent the entire day in bed riding a giant wave of SI. I have been in crisis for more than 48 hours and I've been just about managing that...and now I'm not managing it. I am so not managing it, that I don't even have the headspace or the ability to articulate to you why your comment was so incredibly unhelpful. Right now, this forum is the only support I have and I suddenly don't feel safe here. I am not angry at you but after just keeping myself alive all day I need some help right now so I'm going to sit right here, focus on my breathing and trust that this really is the safe place that I believe it is @Former-Member

Hi @Phoenix_Rising,

I'm sorry to hear that you're struggling right now. Will send you an email very soon. Please check your inbox.

CherryBomb

Hi @Appleblossom

(I hope you don't mind me posting this here @Phoenix_Rising .... I will remove it if you feel it is not compatible with the nature of your thread)

I am sorry if the way I described my sister's HB behaviour came across as demeaning to you .... that wasn't my intention .... more that we accept she expresses extreme frustration that way in the moment because she has no other way to articulate it effectively enough to find release from her pent-up emotions and reactions in the moment.

My sister has a head injury which came about through illness - she suffered a series of convulsions across oaths as an infant .... I remember some of them ... Another occurred in her mid teens when she was extremely emotionally upset one day. We thought we would lose her as a toddler .... I remember a rush to hospital when mum realised she had become unresponsive when we were driving somewhere in the car, and my. Brother and I were left in the car for some time outside the hospital (acceptable in those days) because it was an emergency and the full focus was on lil' sis. From the onset of the convulsions, she gradually began missing her developmental milestones.

She still becomes tantrumous when her expectations are not followed. Hitting one hand against the palm of the other and gritting her teeth, then yelling to have her expectations adhered to, is another pattern .... and sometimes what she is asking for, or rather, demanding, is reasonable .... and it is important not to discredit her expectation or need, just because she is having difficulty communicating nicely or with respect - something that led one doctor to tell my mum she simply had a spoilt child when she approached him for help.

As a family we endeavoured to use behaviour modification techniques to try to lead her into an understanding that her requests and opinions had credibility for what they were, and didn't need to be forcibly demanded, but to no avail often. It would just make her more frustrated and upset. If it were just controlling her own needs and environment, that would be one thing, but she had become emitionally enmeshed with my mother, and followed her around all day, critical, fault-finding and trying to redirect my mother in almost everything she did and said .... she was argumentative if she was awake.

My mother's physical health had been jeopardised by illness and injury in her own infancy and childhood, and the pressure of trying to live with my sister's behaviour was impacting her own health seriously. Interestingly, my sister went to boarding school, as did the rest of us, and she made her way .... mostly I think everyone stayed out of her way, considering her too difficult to engage because they didn't want to get caught up in her melt-down to being crossed, but that was also an effective defence against being bullied .... nobody wanted to take her on and be immediately exposed for their own behaviour - which says something about the cowardness involved in bullying .... The black and white systems of boarding school suited her well though. It was the predictability and repetitiveness of it.

As soon as she was deemed old enough and strong enough in independent living skills, mum and dad put her into independent living in her own unit, and this has served her well. She has life skills, can retreat to her own space or engage with others as she pleases, and she is a well-known hard working volunteer at the local church in the town where she and my father live. He is on a property out of town. She is within walking distance of everything she needs and manages, with occasional supplementation from him, on a disability pension, giving back into the community through church programs for isolated and homeless people, op shop, child care.

When she comes to stay with us, within hours she is prickling to try to control the workings of our home and family dynamics, and begins fault-finding with my kids .... not respecting the fact that they are adults now. She keeps company with D2, whom she can direct quite easily .... the nature of D2's disability means that she prefers black and white systems and routines, and is affable about being micro-managed. I just gently insist that my sister rephrase her directions at times if she is being too rough, and calmly challenge her outright if she is over-riding everyone's personal boundaries .... at which point she storms off and gives herself some time out.

I love my sister, but she has viewed me as an adversary from a young age, probably owing to how close I was with our mother, even though I only had 12 years of living at home, and she had much longer. She limits what she will accept from me in any form - personal interaction, phone calls, gifts, financial contribution, and I respect this because it creates a sense of equality in the relationship. I haven't seen the HB behaviour for many years now, but the hand-banging and tantrumous reactions are not ever far away. We all have different ways of expressing ourselves, and we have all just accepted that these are some of hers.

SO VERY SORRY @Phoenix_Rising Keep posting ..

I have received a lot from being on the site and maybe should withdraw more.

Thanks for not being angry as it was wellmeaning.

Not sure what else to do .. am laying low a bit on the site anyway.

Thanks for putting it in perspective @Faith-and-Hope Our relationships to th SH topic are ALL unique.

Sitting with you @Phoenix_Rising .... 😔