Challenging Behaviour & Dry Cleaning Fluid

Two short stories before I get to the main thrust of this post.

There was a fabulous old Victoria Wood sketch which was presented as a mock documentary of one of those old 1960s kitchen sink dramas. The action took place in a dry cleaning shop and the central character was probably a precursor for the character Wood played in Dinner Ladies. The big scene in the documentary sees the main character throw a bottle against the wall and she says – “I am sick to death of the smell of dry cleaning fluid”. The bottle smashes and she storms out of the shop. The next scene is of the actors sitting in a rehearsal room, discussing the character’s motivation for her speech:

“I think when she says she’s sick of the smell of dry cleaning fluid, she’s really saying she’s had enough of living in a back to back in Cleethorpes with a good for nothing husband”.
“I think she’s really saying that she cannot take any more of oppressive Conservative politics”.

The tag line of course is, Wood says – “Just a suggestion…… perhaps, she’s just saying that she’s had enough of the smell of dry cleaning fluid”.

This afternoon I saw a client at work that I’ve been seeing for just over a year. About a month ago, his 18 month wait for NHS counselling ended and he decided to take up their offer of 6 sessions and see what happened. Yesterday he had his second session with them. Obviously, I’m not going to break his confidentiality but this is a man who is doing some fascinating research of his family history. It is an honour to be in the same room as this man as he comes alive when he talks about his latest discoveries. At the second session of CBT, he’d been talking about what he gets out of this research and the therapist suddenly said to him – “You’re very keen to talk about that. I’d like to talk about the things you’re not talking about”. And that was the end of his NHS CBT experience. He said “Fuck you” and left.

I’ve been having lots of Twitter conversations about challenging behaviour. I loathe that title. There’s a whole industry built up around it now, so there must be a vested interest in labelling our guys “challenging behaviour”. I’m in the camp that firmly believes that when Steven’s behaviour becomes difficult, it is about anxiety, fear, pain or anger. It is definitely a communication. And I also believe that if the person is displaying “challenging behaviour”, the problem is with you – you must be doing something wrong. The person is not being understood and communicating in a desperate way to be understood. The longer the behaviour continues, the more of a cock up you’re making in understanding him.

I know this goes against the grain for most behaviourists. I’ve written before that when Steven was in the positive behaviour unit, he had a signature tune to greet the manager on his arrival – Queen’s “I Want To Break Free”. He frequently said to anyone prepared to listen – “I want to go home” or “I want to live in the Uxbridge house” or “I want to go and see Dad”. Reading through the unit’s records whist preparing for court, it was amazing seeing what lengths they went to, to interpret these statements – every time sailing straight past the most obvious message – I WANT TO GO HOME. It was dismissed as an example of echolalia. It was read as Steven not wanting to conform to the house rules. There were a couple of times where it was recorded: “we have to bear in mind, that Steven often says the complete opposite of what he is meaning”!!!! That seems pretty desperate to me – on their part. But then, the industry has to be fed, it needs lab rats. It needs self justification.

Imagine you are the autistic man like Steven. You have spent ages trying to form the sentence to communicate how you’re feeling about something. You are in an anxious state and are looking for reassurance. Eventually, you blurt out the best way you can but are immediately dismissed by the person you have chosen to trust with your anxiety.

You might lash out. And out comes the ABC charts, the SMART recording forms. And the agenda for the next team meeting is set. And someone goes off to write their case study for module two of their positive behaviour course.

29 thoughts on “Challenging Behaviour & Dry Cleaning Fluid”

  1. Hi Mark – you’re right when you say that some care workers actually create distressed behaviour. Takes me back to when my son had staff who didn’t understand him and everything was awful. Strange how “person centred care” seemed not to apply to Steven then?!

  2. Jolly hockey sticks and all that,Positive behavior theorists are even worse at denying a person’s rights to feel and express emotions anger, disgust, fear, these are just a few which they like to suppress from an early age this has the effect of making a vulnerable person compliant and a easy target for abuse.We are talking about human beings after all, A disability should not define who a person is..Part of the personalisation journey should be the right to communicate emotions in whatever way they can and that may include the odd middle finger now again and yes the odd thump or outburst [Horror],How would you say you don’t like someone if you could not speak or if you had pain or fear? Communication should not be forced into a box of ‘acceptable and positive behaviors

    1. I agree. People with learning disabilities are not like ‘us’, they do not think like ‘us’, nor do they have feelings like ‘us’. Do they?

      When my son who has Down’s was in his mid twenties a male member of staff routinely bullied the most vulnerable members in my son’s day centre. The member of staff was the same age as my son. When my son told this member of staff to stop being a bully he was in turn shouted at and bullied by him. So my son (untypically) told him to F off.

      Situation: Two men in their twenties having a disagreement, where one tells the other to F off, surely a routine occurrence? But in this instance the bully and two other members of staff had my son in an office on his own where he was disciplined and bullied again, this time by all three; for swearing at a man of his own age………..and.for having the temerity to behave like ‘us’.. .

  3. I see your point-but, the problem is when I understand why my son is acting as he is-or at least I can have a good guess-yet understanding takes me no further forward. I can’t always remove the trigger. If X is being demanded-and I can’t get it, can’t afford it, it belongs to a stranger-I can’t provide it. And sometimes providing it at insane lengths maybe isn’t teaching my son anything about tolerating frustration.And he live with siblings who, although they cope with an extraordinary amount, have some rights.I might understand he wants to break his sister’s computer because she is doing her homework and not playing with him-but I still have to stop him, somehow.

    There’s the problem in a nutshell-what limits are possible, are reasonable.What might be able to be learned. Everybody’s different. He punched me because he wanted to swim and the pool’s unexpectedly closed.OK, I understand that. OK, I will try my utmost to come up with another swim, fast, or distracting treat. Meanwhile, can he learn not to hit me?

    Incidentally, as an ex CBT therapist, if I could only see somebody for 6 sessions, and they were well into the second and talking about their hobby rather than the problem for which they’d been referred, it would be time be directive, or risk not being left with any sort of chance to address the problem.
    I agree the therapist might have been more tactful.But the man presumably wanted CBT for something other than his hobby and he wasn’t talking about it, and there were just 4 sessions left. He may well say “fuck you”. but he’d possibly complain if he’d had the 6 sessions for which he’d waited so long and hardly any time was spent on whatever his problem was.

    1. As I said in the original post. I am not going into the man’s details. The issue that led to him first approaching his GP had long since been resolved when the CBT eventually materialised. My hackles are slightly raised by you using the word “hobby”. It is the one thing that provides meaning to his life and surely the main function of a therapist is to help their client find their life.

      1. Sorry Mark, I didn’t mean to raise your hackles. ,I used ‘hobby’ because rightly you can’t give the bloke’s autobiograpy to show how it is for him.
        Of course if its been a long wait the original problem may well have resolved, and the man should be writing a very stiff letter to whoever commissioned the service pointing out that very few problems stay unchanged for 18 months. The CBT therapist is there to provide CBT that’s why they were hired. Its a very prescriptive approach with techniques to be learned etc as you know, and the therapist was probably trying to find-clumsily perhaps-, any problem which could be worked on in the sessions so at least the man had some experience of CBT and could see if its the approach for him. 2 sessions into a 6 session maximum you would be trying to focus.Perhaps the therapist could have said just that-are there any other problems you’d like to work on using this approach in the time we have?
        Finding ones life is a whole different goal from a whole different approach.Incidentally, its a very vague one.
        I think we are left with the problem when we understand why our disabled children are doing something-but we still have to look at the behavior and work out what on earth to do. The solution of giving them what they wan isn’t always possible and then you go into the whole complicated area of what is possible for this person. etc etc. What has always upset me is that my son’s distress is not noted. True, he is, say, hurting someone and I take that very seriously , but ts seldom noted that he is distraught too.

    2. Speaking as one who is as messed up by life as the rest, and as a (very) mediocre psychology graduate of many many years ago………can any one achieve lasting anything, far less useful cognitive change, in six sessions? Methinks not?

      1. 6 sessions is very mean . All you could do is investigate the problem, explain how CBT would be used to help with it, cover the main techniques, and set them up with whatever resources will help them keep going.. You wouldn’t get the chance to monitor or to adjust or anything. If that’s the therapists have been limited they also need to feedback to the GP-and manager how the approach has been affected by the rigid set hours, every single time it happens and encourage their clients to do likewise.. The GP’s commissioned this and it was probably the cheapest bid, but they might not have thought to stipulate a maximum waiting time or to give the therapists some flexibility in number of sessions they can offer. .Used to be they all had a counsellor based at their surgeries……

      2. When I run an anxiety loop my daughter says, ‘you are running a loop mum, think about something nice’. Should I be paying her?.

  4. It’s so right when you say that challenging behaviour is about anxiety. My son was having trouble settling at school and his teacher took it as a personal attack when I said that it was us adults that hadn’t got it right and that was making his behavior worse. The establishment closes ranks and shuts doors in our faces when we disagree with them. I wouldn’t have minded so much, but she is the SEN Coordinator – it shows what a fabulous understanding of SEN children she has (not!).

    1. same happened to me I requested reasonable adjustments be made to my sons timetable to accommodate his disability he has acquired brain injury and is partially deaf so processing information is hard work he used to come home in complete information overload and take it out on me!! Everyone at school misjudged the behaviour as “naughty” for them it was not a net outcome of their system and working practices……and how dare i even suggest that!! My experience was one whereby matters were personalised by an intransigent head teacher who made a bad situation worse which escalated to bizarre levels but i stuck to my guns much to his disdain. The culture in mainstream does not understand how someone is challenged by their disabilities singularly and cumulatively and how that impacts on them which is individual in all cases.In my experience mainstream rather insist that behaviour they don’t understand is learnt and can be modified it can’t until you remove the trigger I experience time and time again a blame culture in place by the uniniated in that particular disaiblity. Professionals gang up and listen to one another and not to those who know the nature and characteristics of the person as a parent you are viewed as unreasonable from the onset,.I moved him to a college that listened halved his timetable so he could attend part time and in the mornings when he is on full fettle and i now have a different young man chilled relaxed not under pressure and behaviour changed as his disability was less challenged I hate the words challenging behaviour it only is that if you don’t understand its source and that means in education group sizes being considered and one to one teaching being considered, rest periods and part time education being a reality. He rests in the afternoon which enables him to do things in the evening i pay an art therpist to come in and the work is superb and exhibited i now have a young man who feels valued and not DIFFERENT as he felt even in a special needs school

  5. Mark, this post left me wanting to laugh and cry at the same time. It’s all so familiar, and so frustrating that these sorts of things are still happening so regularly across the country.

    In the 90s I worked for an organisation that provided support to people who were moving from long-stay institutions back into the community. The place I was working in came to be referred to as ‘the challenging behaviour house’. The social workers in the institution had decided that it would be a good idea if people who were labelled as having ‘challenging behaviour’ all went to live together in one happy household. Great idea…people do love to have things in common with people in their immediate circles, after all.

    It didn’t take us too long to realise that the ‘challenging behaviour’ we were seeing was very much about our inability to understand what people were trying to communicate to us. We also realised that one person’s ‘challenging behaviour’ is someone else’s ‘off day’ or ‘bad mood’. Why do we end up feeling we need a whole different vocabulary to describe the lives of people who we support?

    After a while, the organisation I worked in had myself and a colleague running training courses with other staff teams. We called it ‘the Behaviour Challenge’ – we were working with staff teams and challenging them to think about their own behaviour. Staff teams seem adept at developing unspoken ‘rules’, in terms of how team members behave towards the people they support. It can seem comical when you start applying those ‘rules’ to the team itself. But it’s desperately sad when you begin to see how many people’s lives are being ruined or limited, because of the unthinking actions of the people who are meant to be supporting them. I’m just gobsmacked that the light doesn’t appear to have dawned on any more than a few individuals within the cumbersome support services that we have.

    Why is it so hard to grasp?

    1. …… is hard to grasp because too many professionally trained people (not all, for there are some wonderful exceptions and they usually leave) develop a certainty; a belief that they ‘know’, almost by osmosis or even a kind of indoctrination from the first day of their training/education into their profession. The wide to the sky person they may have been the day before is misted away. The loyalty to the profession is all. Much too often for our son’s and daughters good, if a social worker tried to involve a physio in their way of thinking, or occupational therapist a nurse,(heaven forfend a parent carer or person with disability) etc etc ..wait for it….,.’who do they think they are’.
      I am having a grumpy day.

  6. Hi Mark, excellent blog, completely agree with you. I once visited a local authority Day Service where a man was standing in the reception area, rocking & repeating ‘I want to go home’. After a 2 hour meeting I was about to leave, and noticed he was still there, doing & saying exactly the same thing.

    I went back to the office and asked the manager about him, and was told ‘Oh, it’s ok, he always does that’. Unbelievable. No-one was listening.

    I raised it with the Senior Management and he was reassessed and ended up with his own support workers to take him out on a daily basis to places and activities he was actually interested in.

    Sometimes there’s a happy ending. Here’s hoping more people really start to listen.
    Keep up the great blog Mark, it’s helping so many people.
    Rose Harwood x

    1. I once witnessed a harrowing scene when on my way to a meeting with my daughter’s social worker. A large young man with Downs was in tears at a busy bus stop, saying “I want my mum. Can you help me find my mum?” The hapless people in the queue were trying to comfort and help. When I told the social worker, she laughed and said “Oh, he does that all the time.”

      I tend to accept the label of “challenging behaviour” – because, well, it does challenge, doesn’t it? How to figure out what is really the trigger, how best to soothe, to understand the degree of frustration, defuse, reassure. But I am terrified of what could happen with those who are not too interested in causes.

    2. Rose .I also had a very similar experience at a farm type day service A group was busy starting to clear out a stable on the outside was a man rocking on the spot and playing with his hands looking to the ground but watching the activities out of the corner of his eye staff said ‘he alway does that and never joins in’ There was a clear opinion because this was usual behavior it was accepted and I should too.I did try to carry on but leaving this guy to himself was really bugging me so I went out and asked him for his help Yes I lied and said my back was hurting and could he help me I did not wait for a reply I just placed the spade in his hand and he walked next to me into the stable and started to clear up with everyone else of course I thanked him sincerely for his help.The point I am trying to make is seeing the behavior and not the communication is to pronounce a damning adverse judgment upon someone .The arrogance fed by assumptions and judgments is rife .

  7. I’m trying again, don’t think my other comments worked.

    Love this. And isn’t against the grain for all behaviourists. Positive behaviour support is about supporting positive behaviours, not how to react to so called challenging ones. But unfortunately the pseudo experts out to create this industry don’t understand it fully. It is about providing high quality care that improves quality of life, and unfortunately challenging behaviour services create challenging behaviour keeping themselves in demand

  8. On this occasion, I have to agree with Sally, above.

    I’m a psychiatrist and the role of cognitive behavioural therapy is to address a particular problem – often in a very circumscribed way. Whilst a bit of “getting to know you” builds rapport this phase ought to be through by the end of session one if there’s only six sessions of therapy. It has to end sometime and things have to move on, unless the aim is to explore the client’s enthusiasm for genealogy, and it’s hard to see how that could be an aim for cognitive behavioural therapy.

    1. I love your blog.

      Everytime you write about Steven I draw parallels with my own son.

      My son has not been diagnosed with autism. He was brain damaged at birth (clumsy forceps. Another story) He has cerebral palsy (he can walk unsteadily and has learning disabilities) Aged 41 and at home with his mum and dad 24/7 since 2010. His day centre closed down in 2006 and although the new outsourced service for a while was hitting the right spot with him, eventually the new staff which took over from the old staff started to display how little training they had because they (one carer in particular) started to ridicule him and suggest that to work there he needed a one to one. Strangely their website boasted of how their ethos was to make everyone more independent. The reality was actually achieving the opposite for my son. My son began to hate going because of this subtle bullying. He was anxious at home and very very unhappy. He left. Other schemes were offered but all used untrained staff. My son actually enjoyed the more informal regime of his day centre. He needed someone to talk and interact with but everybody back in those days were on a learning curve and they did not respond to his needs. Too late now he does not trust anybody from social services to get it right for him. Too many let downs, too many false promises. He has lost faith in them.

      Life can seem a bit bleak at times but the thought of him being looked after by someone with no experience of what his needs are is the stuff of nightmares. So like you we soldier on. However we do not have your iron strength and your wonderful elequence with words. You hit the nail on the head everytime. In fact when you tell of Steven not liking change, or making decisions and how you need to tell him very close to any changes because you will know he will dwell on it and become anxious. That could be my son too. In fact as we grow older, my husband and I, we feel the same way about decisions and changes and choices. Could it be that we all a little bit autistic too?

  9. When my children were small and we were going on holiday, we would spend ages finding the kindest most careful and responsible person to look after the guinea pig and rabbit.

    I have just met the carer allocated by an agency to a vulnerable person very close to me. My small children would not have given her the job of cleaning out the cage, far less of ensuring the safety of their pets, in a million years.

    Yet she is employed to care for and protect vulnerable people.

    This is a generic scandal that all we parents and family carers are screaming out, silently apparently?

  10. OK – I have the solution! Round up all the ‘professionals’ who cause the problems and ship them off to the CBTs who don’t want to talk about clients’ hobbies. That would leave everybody else in peace to behave as they feel they need on an equal basis – without the triggers created by the ones who’ve gone – utopia!

  11. Once again Mark you hit the nail on the head. People, all of us, need to listen without prejudice. Without preconceived ideas of the norm, get away from the easy tick box answers.
    Me? I am a humble barman who listens to the frustrations of almost everyone who walks into my little pub and the biggest complaint I hear is that we are not listened to, any of us, by anyone. Kafkaesque does not begin to describe life for Steven, for you, or indeed for most of us.
    For an autistic man it must be doubly confusing.
    Man you do a great job in communicating with me and so many others.
    Thankyou for your time

  12. NHS outcomes are pants, Totally unaccommodating to disability in any way. Could expand, but you all know what I mean.

    Our rule of thumb was that any behaviour that would get you arrested as an adult is totally unacceptable and punished (go home was the punishment) no matter how inconvenient that was. The tantrums were lengthy, possibly days long, but it established where the line was and thinking of the long term consequences strengthened my resolve. Glad I did it, and the long term result was that I gained my son’s total trust.

    Care workers are not trusted unless they follow the same ‘rules’. Some very experienced workers never gain his trust. They take it personally which he finds even more enraging. It’s interesting to see what they project onto the behaviour.

    “He’s doing it to get your [mum’s] attention”
    “That’s interesting” I say, “I thought it was because he doesn’t like you”

    BTW Sally, would never, ever reward a thump with distraction or a treat.

    1. Your managment sounds great.It is often hard to know how to react to behavior because there is so much contradictory advice (accomodate to it/set and enforce a limit/he will learn/he can’t learn. use distraction/use a social story)
      The most hopeless advice for us was that suited to mainstream kids because it made a whole lot of assumptions about the purpose of the behavior and the child’s ability to understand XYZ. Sadly, before you get a diagnosis, that’s what you’re fobbed off with and it makes you feel awful that it fails.
      Its just dawned on me-again-that this is about resources. If you are trying to enforce a limit, you need help especially if you have other kids.If I drag my son off the bus what do I do with the toddler-who needs the dentist? I have nobody who can sit the child and I am not registered with the DCT-no diagnosis yet. And if my other child’s teeth fall out I’m a bad mother for not attending to her. (“You need to give them all equal attention.”)I have so often experienced and seen others go through trying to carry out advice on behavior by services who have no understanding at all about how their lives are and give no thought to what sort of help they’ll need when the behavior escalates for any reason.Even going to get help often needs resources-just to get to the interview.
      Start of all this we ended up in the CMHT. Over the phone I explained that I could not find a single mainstream sitter who was prepared to care for my son (things were very bad then) and I was not then with the DCT so had no access to their help.I’d have to bring him. No not possible.
      The worker said “we really can’t get involved in those sort of problems.” I didn’t go. This was written up as me refusing assistance.
      One kind word, one effort to help me do the interview somehow…

      1. Sounds awful Sally. I remember many doors being shut in our faces. Deep down inside I am still very bitter about that. It also made me more determined (sod ’em all) as I realised that the only person who was going to give us any quality of life was me.

        My three other children certainly didn’t get equal attention – visits to the dentist were very few and far between. And we memorably packed up and came home often (half an hour into Legoland once). So the others joined cubs and scouts and went camping and laser tagging and all those things and came home to a house where all was calm because their big brother had had a lovely time camping out on the trampoline in the garden.

        Don’t think any behaviour therapist would have told us to do it that way, they would probably have seen it as ‘giving in’ to him. Talking with other parents who had all failed in dental duties or some other ‘essential’ was what really helped us work it out. Benign neglect has actually been very good for them.

        Helps to be articulate when talking it through with professionals though. Thankful to have that skill.

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