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A Challenging Challenge

May 16, 2014

In writing the daily blog for the #107days campaign, I’ve been rereading all the social care records from 2010. By far and away, the word that crops up most in the thousands of pieces of paperwork is “risk”. But following very closely behind is the phrase “challenging behaviour”. Oh, how I loathe that phrase. It’s a con. It’s a cop out. It encapsulates the worst of the lies of modern life. And how it fucks over the person (usually autistic) that is diagnosed as having the challenging behaviour.

Whenever the topic is discussed, you’ll always have someone earnestly say: “I don’t like the expression ‘challenging behaviour’. I prefer ‘behaviours that challenge'”. Which of course, sails straight pass the point.

I cannot begin to guesstimate the number of people involved in the challenging behaviour industry. For starters, there’s the behaviourists who can fit anything into their tried and tested model. They will focus on “antecedents” but miss the obvious antecedent that the person’s absolute truth has just been ignored, misunderstood, misinterpreted or dismissed. The industry is too deeply unsettled by a person expressing their absolute truth, so instead turns it into a need for positive behaviour support. Your negative actions (your truth) can only be dealt with by my positive support (my lie).

Then along comes the pharmaceutical industry who are old hands at coming up with conditions that suppress or deny human truths and conditions that only their products can help with. Normal life experiences, normal developmental crises, let along peoples’ truths are pathologised and a drug is prescribed to treat the condition that they have invented. In expressing their reality, the person is left with an endorsed drug habit that may possibly kill them. Either way, their truth has been silenced.

And then the whole social care industry pitches in with its behaviour management plans, risk assessments, deprivation of liberty safeguards – the list goes on and on. And all because the person expressed the 2014 equivalent of “the king’s got no clothes on”.

Millions and billions of pounds. Sustained that someone has behaviours that challenge.

Here’s the story that I often quote from Steven’s person centred plan planning meeting:

“So, what would you like to do Steven?”

“Want to go and see Toy Story 3 at the cinema”.

For a split second, he feels hope, excitement. He starts to form a plan.

“No. You can’t do that. The risk is too high”.

Steven throws a cup of apple juice that he is drinking across the table.

A multi disciplinary meeting of positive behaviour aupport analysts, psychologists, social workers, speech therapists, occupational therapists is set up to look at ways of recording and responding to this challenging behaviour.

So, here’s my five contributions to the debate on a more apt term to describe the behaviour that folk find so challenging:

1. My absolute truth, behaviour.

2. You’ve got it all wrong mate, behaviour.

3. Why are you so threatened by my view of the world, behaviour.

4. You’re living a great fat lie, behaviour.

5. This is not about me – this is about you, behaviour.

We used to have asylums. Now we have drugs and positive behaviour support to control us. It doesn’t feel like we’ve come an awful long way.

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From → Social Care

12 Comments
  1. Sally permalink

    Well, I think part of the problem is that ‘challenging behavior’ as a term is being used to cover just about everything difficult the person does. Its meaningless. You are no further forward in knowing what actually is being done that’s a problem.

    As ever, at first it was a good attempt to describe behavior neutrally , now its something else.

    But what IS the behavior causing all the lowered tones? If its violent, say so! Violent in a way which could hurt others ,hurt themselves, in a way which could get them into terrible trouble? Something that really has to be dealt with or someone will be (more) hurt? Then, say so!

    If a person has very limited or no language you sometimes just can’t figure out what set them off and you do try and try to look at what was happening just before to come up with ideas. Is it what I said/did? A loud noise outside? Toothache? Boredom? A nasty memory?

    There’s also the problem of when you know pretty well what has set the person off but you really can’t do anything about it.Insight doesn;’t always create change. I know my son hit me because it was raining when he wanted to go out Even if I say that’s his reality, others don’t and won’t feel the same way!
    Other times what is actually being called challenging behavior is small potatoes-refusals, rudenesses,the odd drink thrown-difficult but nobody is hurt.The term doesn’t differentiate.

    My problem with the clinics is not what they call themselves, but my sinking sense of despair about interventions helping. I don’t see all medication as bad, all attempts to modify behavior as sinister.Used correctly, they can work well.But some behaviors you can’t do a lot about. If they don’t hurt anybody, no problem. If they do, problem. In either case we need help.

    • Pauline Thomas permalink

      Actually the reason they like to pin the ‘challenging behaviour ‘ tag on our loved ones is to cover their arses. The system for looking after their wellbeing with care in the community is broken. They cannot admit this. This is the big lie. Questioning this lie results in them turning their inadequaties onto the person most likely not be able to speak up for themselves

      My son at this moment is suffering so much through the iatregenic side effects of badly prescribed epilectic medication. To get his psychiatrist to admit he has made a mistake is like drawing teeth. He is now at this late stage getting a second opinion. The letter sent to the neurologist is full of mistruths and exaggerations.

      Example. My husband and I have always maintained since the drug lamotrigine was introduced to his drug regime it made my son more irritable and non cooperative at home . They dispute this and use the example of my son’s stay in hospital as a reminder that he was angry and challenging to me when he was a patient there. My son at the age of 17 was lying flat on his back with a wooden pole between his legs to keep them apart after his hip operation. He could not move or talk to anyone else but me and his father because he was in a room on his own. He was in hospital for nearly three months like that and only moved to a big ward after he had his first seizure because now they had to keep him under observation. I vow anyone in his position would get angry and depressed and show some challenging behaviour. But, hey, my son’s learning disability trumps any normal emotional reaction to this ordeal. Its the de-humanization of his and every other person with LD that is so terrible wrong.

  2. So true….

  3. Hello Mark and others. I have visited this site in the past and have heard it mentioned in relation to personalisation and DOLS as a place where people can share that “the emperor has no clothes”

    I agree that “challenging behaviour” needs to be spelt out for what it consists of and for whom it is a problem. Is it “small potatoes” and the problem maybe putting it in context and letting it go when you know that this is not a time to engage in behaviour modification. Who is in need of a conflict here? Who is being challenged and reacting? From what I read, positive behaviour support places all the emphasis on the quality of the support and trying to understand and prevent triggers which start off “meltdowns”. It could be as Sally says noises, smells, objects or a memory. There is no judgement attached. It should just be part and parcel of good support. To do this has considerable implications in that people have got to get the right packages from social services to have “a good life” which greatly helps. Another piece of jargon “active support” has been mentioned here and there in connection with reduced “challenging behaviours”

    But sometimes or often there is no knowing what triggers “episodes”. What about emotional triggers? And if episodes result in serious self harm or violence to others, what do you do?

    Pain, anger, distress are just part of life and can’t be avoided. Feelings and emotions are how we feel we are alive. They are not pathological reactions and chemical coshing is not a solution and can be a form of abuse, preventing people from experiencing their own feelings and growing. “Episodes”, “challenging behaviour” have meaning. Being able to understand your emotions, and so many of us don’t, and sharing doesn’t always help as Sally says. Letting off steam, engaging in something equally intense might interrupt the flow and the torrent of grief or anger, taking your mind off and providing some relief. But then doing all these things as you go along, accumulating good memories and experiences,

    Good mental health cannot be to be happy and compliant. People may need to enter a time of profound ill at ease with themselves and the world before they heal. They may go through “episodes” and slip into another dimension where the intensity is expressed in visions, hallucinations, and very frightening experiences. This may or not include violent actions and self harm.

    If it does then surely TEMPORARY interruption with drugs might be useful? Along with expressions of love, proper support, therapeutic music, massage, and many other things. Which drugs are used and for how long they are taken is another matter. Who controls and reviews the situation? What say do families and true advocates have? “Management” is taken away into the hands of professionals who do not have the depth of knowledge about the person that is required. Drug effects and side effects vary from person to person – who will observe and report when the person at the centre is unable to? What is a treatment supposed to achieve? and when will it stop? what if the goal will never be achieved – will the person be permanently coshed?

    The idea of entering the pharmaceutical realm is scary because decisions will be totally in the hands of professionals who are not in a position to follow up the effects and so many who don’t care. Professionals are taught to believe chemical coshing is a legitimate thing to do to another human being. Chemical coshing can totally destroy a person to the core and leave their families devastated. There is no return.

  4. Edna permalink

    Unfortunately, when carers ‘challenge the system’ with raised voices, (when they might have good reason for their anger at a system which fails the person they care and themselves too), they are too labelled: aggressive, angry, difficult and even challenging. No they are not normal.

    The social worker, judges, ‘experts’ others in pay of an expensive state system all remain calm and measured as the pull you and your family apart- they are reasonable – we are not. They merely make mistakes as experts, but always know what is in ‘best interests’, We however, are the cause of harm, failure to care adequately or help develop potential of the cared for.

    HELL WHAT AN IMPOSSIBLE HOLE WE HAVE BEEN DUG BY THE SYSTEM.

  5. Weary Mother permalink

    I am always reminded when challenging behaviour is discussed, of the dedicated and loving mother of a middle aged son who had Downe’s and who also suffered from Autism. In very recent years, driven way beyond human tolerance, she killed her son.

    He had very challenging needs, and had been excluded (If I understand correctly) from day care. I also understand from some reports, that his mother had had minimal respite for a very long time. However the circumstances/context, it was a tragedy of supreme dimensions. This mother, described by her community, her vicar and all who knew her as very patient, loving and caring, was taken through the courts and found guilty of murder.

    I read a report at the time where a senior officer of the LA said that help had been offered and refused. I have not seen a record of the nature of the support offered, but the investigations of the time described challenges of supreme proportions, on her alone, over a very long time. But whatever, by this ‘defensive’ LA statement – she was found guilty twice?

    This second time she was found guilty – of killing her son through choice/ negligence?

    • Edna permalink

      When SS fail to provide an adequate / relevant / acceptable service provision it is not negligent. If an informal severely overworked carer does the same it is abuse / negligent. The Kangeroo courts of SS / LA have control.

      But We must all work to change this, the current system is unsustainable and the state system unrealstic and unwilling to find fault with itself. Demonising informal carers is an increasing issue.

    • Edna permalink

      When SS fail to provide an adequate / relevant / acceptable service provision it is not negligent. If an informal severely over stressed carer does the same it is abuse / negligent. The Kangeroo courts of SS / LA have control over definitions.

      We must all work to change this, the current system is unsustainable and the state system unreailstic and unwilling to find fault with itself. Demonising informal carers is an increasing issue which needs to be severely dealt with..

  6. A concerned behaviour analyst permalink

    Hi Mark,

    I’m sorry to hear that this is your experience of positive behaviour support. If your experience of PBS has been “recording and responding” and “behaviour management plans” then this sounds more like behaviour management than positive behaviour support.

    One of the most fundamental characteristics of positive behaviour support is it’s focus on the person’s “absolute truth” on several levels:

    1. in terms of the listening to the function or what the person is communicating with their behaviour;

    2. in helping the person to express their “absolute truth” by giving them the skills to do so and

    3. in terms of positive behaviour support’s focus on changing the environment to match the person’s preferences, support needs and sensitivities i.e. the person’s expression of their absolute truth in the form of their dream life.

    Anything other than this is not PBS so if you feel these things are not being done, you are not receiving positive behaviour support. It’s good that you are challenging people’s perceptions of “behaviours that challenge” but I worry that your opinions may cause people to throw the baby out with the bathwater.

    Yours sincerely,

    A concerned behaviour analyst

    • Possibly. But in 2010, my experience was that the bathwater was pretty dirty and scummy. The Unit was the council’s vanity project. And the absolute truth throughout the whole year was that Steven shouldn’t have even been there. No therapeutic intervention can work when its based on such a fundamental flaw

  7. Sally permalink

    Well, I think there are very few parents who utterly dismiss behavioral strategies, whatever the buzz words. We just don’t like the hype and claims.
    The thing about anticipating/discouraging/reinforcing/understanding behavior in people who are learning disabled and in our child’s case have autism, is that the usual pathways are different. They have enormous trouble generalising-so that doing X and things going well with some sort of reward, may not mean that X is done again, or applied in different settings.
    In the same way things going badly if you do so and so,probably won’t be too well remembered. The motivators of social rewards are usually pretty affected, impulses are overwhelming, language and understanding are affected-sometimes absent. So give up? No! We try and try, not least because we want things to be better for our children and those who are around them. WE are preoccupied with noticing how things are and trying to work out how to help.We want the behaviors to change when they are causing terrible problems.When they are hard to live with.
    However, the unspoken assumption behind many approaches is that all behavioral problems can be sorted if you just do XYZ..and so if you are still having trouble/being hit, well, then you haven’t done things correctly.
    Weary Mother, the woman who killed her son-I have no idea of all the facts but the little I have read suggested that she was under appalling stress as her son’s behavior was terribly exhausting and distressing to live with. A Local Authority person popped up after the death to express deep regret while covering his arse-Mrs X has been offered (silly woman, didn’t take it up) lots and lots of “support”. Anybody believe that?

    • Pauline Thomas permalink

      Sally no I don’t believe that! My son hated the alternatives to his day centre because the outsourced companies used untrained staff. He became depressed and angry (just with me) and refused to go in the end. We had many sessions with the LD disability teams pyschologists, who were lovely, kind and sympathetic. After the course of therapy the pyschologists liased with the LA’s social workers who promised his choices wouid be met, etc. Alas they never were and again he was let down, ignored and thoroughly disappointed and upset. These scenarios happened at least three times in two years until my son had enough. He lost trust in what these kind ladies were telling him. Thet were lying to him. It never did get any better. His day centre was gone and ‘out in the community’ meant a lot of hanging around waiting, and waiting and waiting.

      He became suspicious of anyone who represented the council. We could’nt ‘bundle him out’ into the council transport as was suggested by other mums who were doing just that to their loved ones. The reality is the council would say if I complained that they are offering my son services albeit crap ones, but they are still on offer.

      He has been at home with my husband and I for 4 years now. No respite except for a week in Lourdes with a great bunch of people, although he is too ill to go this year and no we have not had a miracle yet! Although when they wheeled him into the holy water, he came out with a new set of wheels. Yeah I know the old ones are the best. Actually his shoe fitter told us that joke!.

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