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Emotional Processing

December 3, 2013

Two stories from yesterday about the trickiness in processing your emotions.

Yesterday afternoon, Steven had an hour long meltdown. It was the longest and most intense one he’s had in ages. There was no aggressive behaviour but lots of tears, screaming and endless repetitive talking. “Don’t want Christmas presents. Do want Christmas presents”. “Don’t want to go swimming tomorrow. Want to go swimming tomorrow”. It’s exhausting. And there’s no answer to it – you have to withstand the meltdown, in the knowledge that it will pass eventually. Likewise, Steven is learning to withstand a meltdown and handle the pain of going through it.

Needless to say, it triggers history – “Oh no – is this the start of the December anxiety that will last all the way through to mid January?” In amongst the repetitive talking, Steven will bring up the Unit, and his anxiety about going back there – so it is obviously with him as well. But I’ve also learned not to try and guess what is the cause of the emotional distress because in his own way, Steven will normally let me know. Probably not on the same day, certainly not whilst he’s in the midst of the meltdown. But at some point in the future, the reason for the distress will come out.

Amazingly, yesterday, the reason did come out. Eventually, Steven calmed and settled to watching Deal or No Deal. Knackered, I went into the kitchen to start cooking his tea. Suddenly, as calm as you like, Steven came into the kitchen and announced: “Steven Neary was crying because Ishmael has gone to a new work”. (Ishmael is the long term support worker who left last weekend). And with that, he went back to join Noel Edmonds. It was all so straight forward and matter of fact. And incredible and sad at the same time. Incredible on several counts: Firstly that an autistic man can make such a strong emotional connection with a friend that he’s going to feel real upset when that friend is no longer around. That knocks several theories about how an autistic person doesn’t feel human connections out of the window. It is also incredible that an hour after the meltdown, Steven was able to articulate exactly what had been overwhelming him. It’s a shame that he couldn’t do it straightaway but then who can – I’d be out of a job if we could do instant emotional processing. It does also illustrate, how powerful and overwhelming an emotional reaction can be to someone with autism. I get sick of hearing about how social stories, ABC charts, SMART behaviour logs will sort all this out – they don’t and they won’t. And it is boring listening to behaviourists speculate on the reasons for the meltdown when they randomly pick up on one of the things said in the heat of the meltdown. The one thing that Steven didn’t mention during the intense hour was the departed support worker. Nobody would have made that connection except Steven himself and thank goodness, he has the emotional literacy to spot that. The sadness is that the fundamental will never really change – when faced with an emotion that he finds overwhelming, Steven is more than likely to go into a meltdown. That is part and parcel of the autistic condition and to suggest, as some professionals often have, that he could do it differently, denies his fundamental experience and makes the matter worse. So, lets be realistic – we batten down the hatches, hold his hand, speak reassuringly, keep him safe and trust that the cause of the distress will come out and can be worked through (out of meltdown).

On to me. I went out for my respite night last night and felt exhausted. I was going to write this blog whilst out but couldn’t string a sentence together. I knew this would happen. The last fourteen months and the uncertainty about where we would be living has to have a price. I’m pretty emotionally resilient and not afraid to face up to what’s going on inside my head but 14 months is a long time to live with such an unbearable daily pressure. There were so many twists and turns (that still continue but I’ll leave the story of how the council have debited my account for Steven’s council tax without any authority, for another day!) that my tank has been drained quite low. Now that we’re settled in the new house, the suppressed stuff is bound to surface. I am going to think about me a bit more though. Yesterday morning I went out to buy the last of the Christmas presents. I came home with four big bags and a feeling of sadness. And as I started to wrap them, I realised that I hadn’t got anything for me. There’s no point in expecting someone else to get a present from Steven to me – if I want one, I’ll have to get it myself. So, tomorrow, I’m going to treat myself.

In a way, we’re quite similar and that, albeit for different reasons, we both don’t express our emotional reaction immediately. With good reason.

On a lighter note, in the midst of the meltdown, the postman arrived with a package – it was Steven’s print of Whistler’s Mother. And on 25th December, it will take pride of place on his new living room wall.

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From → Social Care

12 Comments
  1. Emily permalink

    A huge hug over cyber space to you. You are doing a fabulous job not just with Steven but by educating others through your journey. I applaud and thank you so much x

  2. Jayne knight permalink

    I think this is just so honest and open. I’m helping two families going through hell at the moment. I’m going to share this because they will know that their battle and yes it is that sadly as usual, is so worthwhile.

  3. Wish could come and help! Make sure it’s a big present as you deserve it and I have no doubt Steven would want you to be spoilt.

  4. Alice Moore permalink

    We can all be overwhelmed by our emotions at times but for the autistic person it is much worse. I`m glad Steven was able to articulate the reason for his meltdown. I`m sure you have been a great help to him in this regard.

  5. The repetitive talking is so familiar to me – it’s so difficult to deal with. I didn’t realise other people had to deal with it. My daughter used to do it but she died recently of breast cancer and even though the repetitive talking used to get me down I long to hear it now…..

    • Pauline Thomas permalink

      My son’s meltdowns used to occur whenever his sessions in the day centre were cancelled. He did not complain at the time to any staff, he waited until he got home. He would get off the bus, refuse to talk, refuse his dinner and then explode. Eventually he would explain that he sat all day doing nothing. My husbands and my response was always to talk to him slowly and explain sometimes that happens. (I do not think I could have coped on my own like you) It was only when this was happening every week that I decided to confront the manager of the day centre and ask why. Staff was apparently being taken away from the centre to prop up the new ‘out in the community’ contracts. Then it was my turn to explode. I told her in no uncertain terms that if I was going to be on the receiving end of my son’s frustrations, then she was going to be on the receiving end of mine. Everytime they cancelled I would phone them. Sometimes I would talk to second in command who was a man who had children of his own. ‘How would you react if your children were being let down like this at school’ I asked. ‘Would you just let it go’. I was told I was unreasonable. Actually I thought the people who were being paid to support our loved ones, did not believe that they had any feelings. My son was being treated as if none of his life mattered. They could do anything, change anything and he could do nothing to stop them. His only response was to explode. He did not have the language or the intellect to challenge them.

      We have over the last ten years had occasional input from our mental health team. The psychologists he has seen have always been kind but powerless to change the culture in the local authority’s social service department, and that is the problem. The people making the policies and the yesmen who carry out their orders need to be educated in common decency. They need to realise that our loved ones are human beings who like them feel pain, feel rejection and need to be afforded the same respect that everybody else expects from our society. They need to be given back the services which kept them sane. If they do not change the way they treat people with LD then we will have more and more people needlessly needing mental health services. I have figures (a FOI) that proves that mental health problems in the LD community have increased in my borough since the changes. I have written to the Dept of Health, who said that these figures could mean anything but are unwilling to look. I have written to my MP. His silence was deafening. I have asked Mencap to help by looking at other boroughs. Nothing and yet they are currently wringing their hands at the plight of our loved ones care (or should I say lack of it) My husband has brought up the facts at carers meetings to council officers. Everybody looks the other way. If the changes to our loved ones lives are causing them to have a mental breakdown and nobody in charge will do anything then it is abuse. No other word will do.

  6. Sally permalink

    Mark, you so are so right. I too have box files of ABC charts and social stories, have sat through any number of meetings and could paper the house in behavioral advice sheets. And believe me, I want help with my son’s behavior.I have pleaded for those awful interviews. I have dragged him across town for appointments.
    I don’t enjoy his repetitve questions, the slow build up I can’t often deflect, the meltdowns the aftermath- and have pleaded for help. I have thought therapists were inhuman in the way they calmly sat through my accounts of what we were living with.
    The fact remains that, like you I often have no idea at all why my son has melted down-even if he gives a reason at the time, or I think I can spot one, it may not be why he tipped over. He might not know. He often just cites the first thing that comes to mind, probably to shut up the questioners.
    I have sat in meetings embarrassed and defensive being questioned by clinicians again and again about triggers. Of late I have been far more ready so say I have no idea at all, and then have to either sit there until I do come up with reasons (its like torture) or see them seize on one and chase it-with me knowing that this is just the goal they came up with. It probably isn’t the reason. Solving it isn’t going to be the magic key.
    The problem is that, if the interventions and recordings of ABCs don’t sort out the problem you as the parent are seen as at fault, You feel trapped in the endless recording and analysing. the minute you stop-be it after 1 week or a year-you are seen as the problem. You have sabotaged the process. there is never an idea that if the intervention isn’t showing results by so and so time we should go back to the drawing board. Its totally open ended.
    Perhaps its is just time and patience.
    Please get yourself a lovely present

    • Sally – I try and not engage with the professional’s analysis of “the problem” anymore. I can’t bear to sit in any more excrutiating meetings where ABC charts are poured over. At one meeting at the unit, staff brought up how Steven had said he doesn’t like one of the staff because she has “very smelly farts”. They couldn’t accept this and we endured hours of speculating on what his “real problem” with her was. A meltdown is what it is. And its part of the autistic condition. I don’t believe it can be “cured” but with the right, loving input, the person may get to a place where at some point they can articulate what emotional upset triggered the meltdown. If we can get off stupid endless theorising about “real reasons” we’d be doing our kids a massive favour

      • Sally permalink

        Yes, you are so right!
        The unspoken but present endpoint of a lot of the theories and treatments is cure. that is, if you just do your ABC’s social stories etc etc right the autistic behavior will go away. Still there? lets keep going. You’ve given up? Your fault then, no matter when you did.
        And I believe most of us could do with help when dealing with difficult behavior-some reassurance and basic pointers, some reminders that mainstream interventions are not going to do the trick so stop felling awful about your “failure” to control. However, you’re right. This is autism. This is how somebody with autism will deal with some feelings.

        I wonder if the behavioral treatments with cure as the assumed endpoint fit into the vogue of discrete interventions-so time limited contacts with our LD sons/daughters. Its a huge shrug off of responsibility. I will give your son an intensive block of treatment. At the end he will be cured , or if not, its your fault.We will run the so and so program. Then you’re on your own.
        They are taking a group of people who will need care for their entire lives and using a model of cure and throughput (have to keep those case loads down) on them.
        Thank you for writing about how painful you find the meetings to analyse behavior. Me too, and I’m guessing many many others.

  7. Weary Mother permalink

    Pauline

    No less sad is the disappearance in our son/daughter, of any expectation that they are a real person. As I wrote in an earlier comment, where in the past our LA services were not perfect (often far from it) our son’s and daughters had some kind of continuity in their relationships; relations that were often carried on from school through into the day centre. This community may have been a community of the ignored and disrespected; separated out on the edge of the ‘real’ world, but it was a strong and validating community none the less. We parents talked out our common concerns in these ‘good’ old days, now gone. For now we parents are now separated out into the ones lucky enough to have won this years assessment lottery and those who have lost out and are exhausted and alone. We are now divided into those parents who fear their former peers who keep on challenging these injustices; the awkward squad who could further antagonise the LA and rock their own very leaky boat. Some of us chosen to go to the left and some to the right??. (now where did I hear that?)

    We are now a splintered community of the frustrated, angry and terrified set against each other. A fractured community. No wonder our son’s and daughters are also fearful and isolated and express this in the only mean that they have left. We may have teased our social workers in the bad old days about their 2 CV’s, their ban the bomb stickers, and of always being late and in a rush and gasping for a coffee, but we felt that in the main they knew us and cared about us. Now we have care managers that we fear; people who (there are capable and compassionate exceptions) treat us as though we disabled our child and we are now approaching them for a loan, and they not smile. Terrifying meetings that control us and our lives, and frighten our son/daughters’. We are allocated a new identity at each assessment. Friends have gone, day staff are new and part time and do not know us at all, they just make us (parents and son’s and daughters) up. But if you ask my silent son how he is, he will tell you he is just ‘fine’.

  8. I can’t do or say anything constructive, but as I read all your posts, Mark, and all the comments and support from your cyber friends, I am touched beyond words by all of you. How you keep going under such stress, brought about by an uncaring system that is supposed to help….. You are all the salt of the earth. Huge hugs to you all xxxxx

    • Pauline Thomas permalink

      Weary Mother. I identify with your blog. Where has all the closeness gone between parents? We were once united in our aspirations for better care and we vehemently fought together for our loved ones right to keep our good day services. Unfortunately we did not have the backing from the powerful charities and the council were adept at dividing and ruling us. One by one we faded away, too old, too tired and spent. Too scared to speak out in case we lost the care we so relied upon to keep ourselves sane. The actual thought of being scared to speak up is an indictment to how much power council officials have over their citizens. Democracy? No!. The odd parent now and then wins with the help of the Omsbudman, but the LA’s have a slush fund to cover these far and between losses and most of them are never reported in the media. However, Mark has not only won his case, and quite rightly too, but has embarassed his LA. Now that is what most LA’s dread. They are not bothered that their social services are failing the vulnerable, but only get anxious if everyone knows that they are uncaring. That is why they have such wonderful legal teams, who are all well qualified to defend the indefensible.

      Everyone blames austerity for the cutbacks and I am sure it has ascerbated the situation but the plans to commission out all the day services and close all the centres were in the pipeline preceding the White Paper ‘Valuing People’. Councils were keen to rid themselves of any responsibility and the emerging third sector companies were waiting for their chance to grab some of the funding. Unfortunately the rhetoric for this wonderful world where people with LD would be part of the community did not quite come true. Some got rolls royce services but many people were set up to fail and their lives have become fractured. I have not even begun to imagine how these changes have affected the lives of the parents, and carers who now shoulder most of their loved ones care. Society has gone backwards when it comes to properly looking after people with LD.

      Sally. My son too is fed up to the teeth of being analysed and questioned. He wants no more of it. He has been much more calmer now that they have backed off. We still have to see the psychatrist who monitors his epilepsy drugs but even then sometimes he refuses to go to see him especially if he knows he will be questioned on his behaviour. So it was with much delight that the last time we saw him, my son started the interview with ‘we are here to talk about my epilepsy pills’. At last he is speaking up for himself. I do not know about anyone else but I would hate it if everytime a saw a therapist or doctor I had to list all my misdemeanours of the last eight weeks.

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