Hi, I’m new here.
I am a 32-year-old male and it’s recently come to light that I have Asperger’s. Whilst the discovery has helped explain my whole life and why I am like I am, I’m struggling to cope with normal life. The main reason for this is the drastic change in my lifestyle over the last 2 years. I’ll try to give a brief background without going into too much detail:
I had clear autistic traits from a young age from my peculiar playtime rituals to my OCD hand washing (I sucked my thumb and I needed it to be clean!). When I started primary school, I refused to talk. Something I now know is called selective mutism which I still suffer from today albeit in much different circumstances. I wouldn’t even answer my name for the register. The school phoned my mother and asked what was wrong with me.. After they got fed up with me their solution came in the form of a new boy joining school – it was known he could be a bit of a trouble maker. So, they sat him next me in every class to ‘bring me out of my shell’. It worked: my personality flipped on its head and my behaviour deteriorated rapidly.
I don’t specifically remember too much after that. I eventually developed a way to socialise and communicate with people by replicating their traits and language, I still do this today. I was very popular at high school and got on with every type of character, I felt fine. The only time this mechanism fails is when I come across somebody who is exactly like me, its horribly awkward. But I used to put that down to them, not me. I realise I’m dragging on so fast forward:
For 10 years I worked in the same company (from home) and was married to someone who worked shifts. This meant I was getting a lot of alone time without realising just how important it was to me. This allowed me to fit in perfectly with everyday life, I could adapt and cope. We have a child together but the marriage eventually broke down. This was the first big change. I then changed jobs – I managed a team of 10 and commuted to an office everyday, it was incredibly demanding. It was not to last though as the company went into liquidation and I was made redundant on the spot. I now how a different job but still have to commute to an office. During this time I have a new partner and we have 3 kids between us and we’ve moved house twice.
I’m forced to be social everyday and my senses are very often overwhelmed and I get very little alone time to recharge. I’m very bad at going and getting my alone time though – I don’t want to abandon my family; I feel awful doing that. I have days where I’m ridiculously high and I have more energy than the kids but I also have days where I’m so low I don’t want to be around anyone or anything in the world. The worst part is I can’t communicate how I truly feel because I lack the ability to. This is when words become physically stuck in my head again (my selective mutism, I can’t talk about my inner most emotions) – this causes conflict because I appear to be functioning very normally until I breakdown and need my space. The cycles of my ups and downs are becoming shorter and shorter and are causing arguments and problems. We both have read a lot about Asperger’s but we seem powerless to cope with the issues it causes…
If you’re still reading, I thank you! I think what I’m asking is does anybody have any coping mechanisms or suggestions I could try? (Or maybe just some supportive words) I’ve read a lot but not actually addressed the community – what are your experiences on coping with family life?
Thanks for your time, it took a lot to write this. I've spent the previous 5/6 hours lying in bed in the dark after a particularly bad episode..
Hi, welcome. Well, I think autistic families are a very natural thing. Like mine. I cope very well with family life because my family life is roughly exactly what I can cope with. I designed it with my husband to be our family life, as we like it. Things can be a bit quirky and chaotic at times and we choose what we control and what we don't care about. Accept choices. You can't keep up with the Joneses at being extroverted NT socialites..
I was diagnosed late in life and as you say it explained a lot. But regardless of the dx you have to develop your survival and emergency procedures. Like knowing where to slow down or even stop. Where you need to stabilise and calm things down to avoid further rocking the boat and ending up in cold water. Your knowledge of the dx should inform your procedures. You need to have reflexes to stop the meltdowns. To freeze the melt and to reset the system so you are at your full capacity and available to make good decisions. In the meltdown you are unable to make optimal decisions, so don't try to.
For us family is the place to come to to recharge, have a safe space where people have your back, it is not the second front, to drop the mask and all pretences and just be and appreciated for who you are, a place for being yourself to others.
Regardless of dx you are you with your needs and preferences. If you can't stand being social 24/7, it's not your thing, your partner should be aware of that and be fine with that, it is basic compatibility and appreciating each other for who you really are.
Both you and your partner know about the dx, right? What conclusions do you draw from it?
Why are you forced to be social everyday? who decided that? Whom does it help?
Having a time to recharge is not abandoning your family, it is a little dramatic and absurd way of framing it, does your partner makes you feel this way?
Having a time to recharge is an essential scheduled maintenance time to make yourself available to your family and to maximise the utility of being together.
Hi Tinyexplorer, thanks for the reply. I should have mentioned, I do not have a formal diagnosis - I am in the early stages now. My mother, who works with adults with learning difficulties has helped diagnosed me (shes always known and better placed than most to understand mental illness/difficulties). I used the various online resources and sat with my mother and partner to take a variety of tests. Both are hugely supportive. I've read a lot of people are happy to self-diagnose but for me I feel I need to pursue a diagnosis now, just to confirm what I already know. And I hate to bash on the NHS but my experience so far has been awful.. It took a lot of courage to go and I got turned away with depression the first time and prescribed antidepressants (which I didn't take). The doctor even talked over me when I was explaining how I felt. The second time I took a list and specifically asked for a referral which I got! I'm waiting for an appointment to come through now.
For me though I generally feel I can cope with a lot, it's an accumulation of things that build up (sounds, socialising, expressing emotions, anything unexpected etc) - often without me realising until its too late. One of the big things I suffer with is a complete lack of empathy. I understand what to do in certain situations and come across as loving and caring but I cannot fully grasp how another person is feeling. This is good in certain circumstances such as when one of the children fall over, I'm not overwhelmed by emotion so I don't smother them - I get straight to the issue and help with any cuts etc. That may sound awful to some people but it quickly sorts out the times when they are just shocked and when they are actually in pain. In other circumstances though it's very hindering, I cannot have a heart to heart with my partner because of the way talking about my emotions feels. She needs to talk a lot because of who she is and I cannot ignore that - we need to adapt to each other's worlds. This is where we clash sometimes.
When I say 'forced to be social' I mean that's how I feel the world is. I go to work and have to socialise with everybody there. I have my own office to the side and can easily shut myself off from the rest of the staff but I stress over doing this so much because of what they will think I leave my door open. I often get stuck in there! Sometimes I need to collect printing or simply go to the toilet but I can't because of my social anxieties. I get frustrated with myself on a daily basis and sometimes just force myself to go out which is usually a daft thing to do because I find myself unprepared for a conversation somebody may start with me! It all sounds very silly writing it down, but it's what i go through every day. It's a small office and everybody makes tea and coffee for everybody else and they joke about how little I do it - they don't understand how many processes I need to go through in my head to gather the courage to do a round! (These are all lovely people by the way and once I get into conversation with them I very quickly feel at ease). When it comes to my job and meetings however, I find it easy to talk - because I feel in control of the topic. It takes as much effort to make a cup of tea as it does to write a report - its all very exhausting!
With getting time to myself and feeling like I'm abandoning my family it did initially come from how my partner viewed it. She thought I didn't want to be around her and was very hurt by what I was doing. She's so supportive and now fully understands why I need this time and encourages me to do so. The problem is I'm pretty sure that deep down she's still feeling the same so I take my alone time and I start wondering if she is OK. A lot of the time I worry about her so much I either don't take it or cut my time short. But what you have said is very helpful (thank you!) I like your term 'essential scheduled maintenance' by the way! Do you actually have a schedule? I like that idea
NHS are always going in stages, they need to show that they tried something else before trying the more sophisticated thing...
Cloud7 said:For me though I generally feel I can cope with a lot, it's an accumulation of things that build up (sounds, socialising, expressing emotions, anything unexpected etc) - often without me realising until its too late.
I think this is the experience of most high functioning people. I think we can and do cope with a lot. The limiting stereotype is just a stereotype. I think the insight, the knowledge of the dx should give the pointer to when to slow down and recharge in order to continue coping. Because otherwise a lot of autistic people have also experience of meltdowns, where everything suddenly breaks down and life starts falling apart. I personally can cope with a lot as long as I keep my balance, if I am really in overdrive and off kiel, I start making mistakes and might create more problems that I solve. So staying in the 'functional' zone where you can cope is essential.
I don't have a schedule, for me it is just a manner of speaking, the way to conceptualise that it is essential and unavoidable for actually improving good time together. Without this down time you go off kiel and can't cope very well, can't actually give what they need.
This is what I'm struggling with, I have no idea at the moment how to judge how much is too much.. If I go past my limit I either breakdown or need to shut off from the world or combination of both: a breakdown followed by a shutdown or vice versa if my alone time is interrupted. I'm then left in a low mood for potentially days where I struggle to feel any excitement in anything I do. Work at these times in incredibly exhausting..
This is all still relatively new and I don't know how to properly cope with it. I'm working at defining my abilities and limits but I seem determined to carry on doing everything the same because at the time I feel I can cope. I don't feel capable of having proper discussions at a low point when my current mood would truly reflect my limitations. And of course, I have to contend with my inability to properly open up and talk - my default is to agree and please. This comes across as odd to the outside world because I generally appear to be quite selfish! So when I need to alone it feels completely unreasonable.
I'm only just getting across how difficult it is to fit in with the normal world on a day to day basis. The majority of the time my explanations are met with confusion and misinterpretation. I often feel alone surrounded by people who don't understand me, followed by guilt as to why they should all adapt to me. My adaptions to everybody else are completely invisible and go unnoticed because I'm fitting in, it's only ever my unreasonable behaviour that's noticed, when I'm totally overwhelmed by the world.
Cloud7 said:The majority of the time my explanations are met with confusion and misinterpretation. I often feel alone surrounded by people who don't understand me, followed by guilt as to why they should all adapt to me. My adaptions to everybody else are completely invisible and go unnoticed because I'm fitting in, it's only ever my unreasonable behaviour that's noticed, when I'm totally overwhelmed by the world.
This is autistic life in a nutshell, but family should not be like that, by definition, family is where we don't feel like this, where we feel at home and free and loved for who we are.
I think you might start exploring the double empathy problem, how it affects the interactions and the dynamic.
I don't feel I don't have empathy, but my empathy isn't always aligned with other people...
I am not sure NT people are actually able to 'feel' other people. It is part of the autistic stereotype and mythology. NT people are projecting how they expect people to feel based on their own experience. Because autistic experience is so different, those projections misfire. This is called the double empathy problem.
Why would your partner feel you don't want to be around her if she knew how you feel, which is allegedly the meaning of empathy is?
These are a few recent studies of double empathy that provide some insight into the NT/AS interactions, that could help to connect.
Brett Heasman (LSE) discusses his recent study published in the journal Autism: https://www.youtube.com/watch?v=TSMF_3f0Q0c&feature=youtu.be
"Perspective-taking is two-sided: misunderstandings between people with Asperger's syndrome and their family members". Stereotypes about autism get in the way of mutual understanding https://journals.sagepub.com/doi/full/10.1177/1362361317708287
Focus on autistic problems like theory of mind distracts from seeking two sided understanding https://semioticspectrumite.wordpress.com/2018/01/26/the-belief-in-theory-of-mind-is-a-disability/
Thank you for the links, much appreciated.
My partner is very opposite: she needs to be surrounded by those she loves to recharge her batteries. She needs to talk about problems and vent (without accepting a solution to said problems!). So although she accepts that I need time to myself, she is left in a situation where her needs are not being met.. She understands why I need to be alone though now. But this is my dilemma.
Tinyexplorer said:The majority of the time my explanations are met with confusion and misinterpretation. I often feel alone surrounded by people who don't understand me, followed by guilt as to why they should all adapt to me. My adaptions to everybody else are completely invisible and go unnoticed because I'm fitting in, it's only ever my unreasonable behaviour that's noticed, when I'm totally overwhelmed by the world.
I remember saying to my wife 10 or more years ago "Everyone thinks I'm selfish and never compromise because when I say what *I* want it's *already* a compromise. I've already written off what I'd like to do as never-gonna-happen and my voiced 'idea' is a moderated & compromised version that I think I might get away with." So I can really relate to your adaptions being invisible and people only noticing when you snap.
I get the guilt too.
Thankfully, having had this nearly kill me, I'm resolved to saying what I *truly* want and realising that it's "typical" demands that are unfair, not me.