Published on 12, July, 2020
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..
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.
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.
Kitsune said:Reducing pressure as much as possible is also a really high priority. If you are feeling overwhelmed and overloaded then look at what is essential and what isn’t essential, where can reductions in workload be made, can things be done in a slightly different way which will make them easier to manage?
Yes, this,absolutely. Choose to drop non essentials and do things in a way that enables you to function. Unapologetically.
Thank you and exactly! I couldn’t agree more with everything you said. I absolutely do not function well when other people start putting pressure on me or when I am in a high pressure situation. I usually just want to escape from that situation ASAP and hide! As for toxic people, I blocked my own Mother out of my life 10 years ago because well, she was just emotionally abusive and extremely controlling and would you know I came off of antidepressants the next year and I haven’t had an episode of depression since then! I’ve managed to end up married to a man who in terms of personality is pretty much the doppelgänger of my Mother, a massive control freak (I’m sure Freud would have a field day with that!) it’s not a situation that I can escape from for reasons that are too long and complicated to go into here but I have learned (and have had to for the sake of my own mental well being) to emotionally detach myself from him and to apply my own filter to everything he says and avoid him as much as possible. I had to distance myself from my mother-in-law too as I realised that she wasn’t quite as good a friend as I had thought she was. Luckily she’s socially savvy enough to know that I’m very hard headed and seems to realise that she needs to play ball. Definitely cutting toxic people out of your life is essential, especially for someone with ASD, you shouldn’t have to put up with people in your life that are having a negative impact on your health. Reducing pressure as much as possible is also a really high priority. If you are feeling overwhelmed and overloaded then look at what is essential and what isn’t essential, where can reductions in workload be made, can things be done in a slightly different way which will make them easier to manage?
I think you might start exploring the double empathy problem, how it affects the interactions and the dynamic.
https://network.autism.org.uk/knowledge/insight-opinion/double-empathy-problem
https://aeon.co/essays/the-autistic-view-of-the-world-is-not-the-neurotypical-cliche
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/
blank_smile 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 relate to that too.
I don't think this goes off topic at all. To the contrary. I came to believe that for an autistic person, when pressure is too high, one of the standard procedures should be eliminating, blocking off toxic people. People that one trusted, but that proved to be abusive, people that undermine us, destroy our confidence, don't acknowledge out value and contributions, demand us to engage on their terms, focus on them, while never actually meeting our needs the way we feel is helpful to us. People that don't value us for who we are and prevent us from functioning.
This:
Kitsune said:I basically just had to shut off from certain people that were being really unhelpful and concentrate on getting my eldest better and looking after a newborn baby. I realised during that time that certain people that I had previously thought that I could trust, perhaps weren’t so trustworthy and it was also when I grew up a bit, prior to them I’d been a bit too reliant on other people’s opinions, I was quite bad at making decisions for myself. But I realised that other people’s opinions are exactly that, just their opinion, not fact and I started using my own judgment and learned to keep my own counsel
Hello and welcome! I’ve had two periods in my life where I’ve had a lot of change and a lot of stress in a short space of time and both times it has affected me really badly. The first was when I was 14/15 and in the space of a year my dad (who I lived with) met a new woman and got married; we moved house; we moved to a different town; I moved schools; my dad died; my step mum kicked me out and I had to go and live with my mum who I hated. I felt fine, because I usually do but I clearly wasn’t fine because I went completely off of the rails until I was 20. The second time was 2013-2014, we moved house; I had our middle daughter soon after; my stepson got kicked out (the 3rd of 5 times to date) and came to stay with us briefly and my eldest daughter had anorexia really badly, oh and my husband started acting like a complete idiot so that didn’t help either. That all had a really bad effect too. I don’t quite know how to explain it because every time I try to explain it to someone the explanation that I give doesn’t quite describe it accurately. I basically just had to shut off from certain people that were being really unhelpful and concentrate on getting my eldest better and looking after a newborn baby. I realised during that time that certain people that I had previously thought that I could trust, perhaps weren’t so trustworthy and it was also when I grew up a bit, prior to them I’d been a bit too reliant on other people’s opinions, I was quite bad at making decisions for myself. But I realised that other people’s opinions are exactly that, just their opinion, not fact and I started using my own judgment and learned to keep my own counsel about the majority of things. I’m sorry I have completely gone off on a tangent talking about myself but in doing so I was trying to show that I understand the effect that a lot of change in a short space of time can have on an Autistic brain. You can’t change what’s already happened but my advice for the future would be, if at all possible, try to avoid having to many changes in quick succession. Just have one change at a time if you can and give yourself a chance to fully adjust to that change before you change something else. I do understand however that life is life and sometimes lots of changes will happen all at once and they cannot be avoided. In this case I would advise having as much ‘down time’ as possible, because this is when we process information and change and anything else that needs processing and also try to concentrate on doing what you ‘have’ to do and don’t try to do extra things on top of that. I hope that this is a halfway useful answer?
That was the point I was trying to make earlier, don't think I put it across very well
NAS62304 said:suffering from autism my heart broke down after hearing this bad news.
Language is important. The words above are considered ableist language in relation to autism.
People don't suffer from autism, they suffer from lack of acceptance, lack of suitable support, from prejudices, discrimination, bullying, absence of sen provisions and reasonable adjustments. I think when a person is diagnosed, reading about a social model of disability is a good start. People are disabled by barriers in society, not by their impairment or difference.
https://www.scope.org.uk/about-us/social-model-of-disability
This is about equality and autonomy of people with disability. Being disabled is not the end of things, it just means you function differently and may have to achieve your goals differently. And it is about disabled person's goals, not their family's. Disabled people have autonomy, mind of their own. Yes, it is probably harder, because of societal structural barriers and lack of acceptance.
In relation to autism, this is an old debate, started by Jim Sinclair in his speech 'Don't mourn for us'.
https://www.autreat.com/dont_mourn.html
He said that parents wishing their child didn't have autism means they wish they didn't have this child but another one without a disability instead. Hardly a supportive message from the family.
I am autistic and perhaps I like black and white thinking in this regards. Saying that a child is a tragedy to parents because he is autistic is ableism.
This is why this language is better avoided.
Yes - it's a big assumption - but people always think the worst initially (worst case scenario) and then need to gather evidence of the reality.
But isn't it an assumption that dreams are gone? Why are they gone? To every stereotypical limiting story about autism there are inspirational stories that prove them wrong. Non verbal people leading independent lives, people with intellectual disabilities achieving university degrees, not to mention paralympics. Huge number of autistic people live independently, have families, have friends as a recent study shown, about 40% married with children.. We struggle, but surely we don't abandon our own dreams. Many people at certain age, NT or otherwise might look back and review their outlook. It is not sole preserve of autistic people. How can we abandon dreams on behalf of our children? Those dreams are theirs to dream and achieve.
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.
My niece has autism and she is one of the most beautiful human beings I know. At first it was quite a sad time but after a while you realise they now have a framework of support and they are who they are! Shes wonderfully bold and brilliantly quirky. For example, this weekend we took all our kids to a workshop to make puppets. Half way through the kids were all given a piece of cake. My niece took a tiny nibble of the cake and it offended her senses that much she instantly declared she hated the taste and began removing the 'taste' (because at this point there was no cake in her mouth) from her tongue to her plate with her hands. She then flapped her hands, put the plate down and went and sat at the back of the room with her arms folded - she physically removed herself from the situation. I chuckled at her and asked her how good the cake was, quietly proud that she felt comfortable expressing herself exactly how she wanted to
Never bought into that mindset myself but I know it is a pressure for most people.
As I said in my previous post trying to get the support required for a child can be heart breaking, in fact it is a constant battle that was my point. It is not the autism that is heartbreaking it is the battle for support
I think every parent wants their children to be happy - but society creates a pressure for people wanting a better life for their kids. The 'keeping up with the Joneses' mindset is very powerful.
Children with extra needs may be perfectly happy but may needs lots of support in their daily life - and where will that come from if you are not able to provide it?
Hi plastic, I do understand what you mean about the dreams for your children thought process,
I guess I just look at things a bit different I always dream my kids will be happy and and achieve what they want and if they need support for that then that's what I'm here for, I have never really had the perfect picture of life in place, which is probably a failing on my part
I understand exactly what he means - as a parent, you have dreams for your children - you imagine them being wealthy and successful with their own happy family. When you have a child with any difficulties, those dreams go out the window and you have to lower your estimates and it becomes a job of trying to maximise the hand they've been dealt.
This is incredibly stressful and all the extra work has no guarantee of success. There is also a period of coming to terms with the loss of the dreams. It's a period of mourning for what might have been.
It's the same as a lot of people when they get their autism diagnosis - the realisation that they may not achieve their dreams or career aspirations because their brain will probably let them down in crucial situations. It's a lot to come to terms with.
What exactly do you mean "suffering from autism"? Why did your heart break down after hearing this "bad" news?
If your nephew is autistic, and is having problems with school providing the correct provisions, or is struggling to communicate his needs effectively then yes this would be a struggle. And I could see it being heart breaking. I struggle when my daughter doesn't get the support she needs to be herself.
However your post comes across as you are heart broken that he has this autism and I would just like to say if that is the case it is a very negative way of looking at it (if I'm wrong accept my apologies)
He will need love support and acceptance this is the key for him
Is he suffering from exclusion, bullying and poor sen provisions?