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..
hello and welcome!
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.
Hello and welcome Today I also get to know that my sister's son is suffering from autism my heart broke down after hearing this bad news.
Is he suffering from exclusion, bullying and poor sen provisions?
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
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.
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