Anyone who has worked with people with Learning Disabilities, Autism, Dementia, Mental Health or children (with or without disabilities) will have come across some behaviour that challenges. Many professionals are now phasing out the term Challenging Behaviour to be replaced by Complex Behaviour, which certainly applies for learning disabilities and Autism. Complex Needs is used in some areas to specifically describe mental health needs, some people use it to describe a person whose support needs are multiple and varied and may include behaviour along with physical support, communication impairments and any other needs that may be difficult or “complex” for staff.
Challenging Behaviour really does refer to staff (and/or parents and carers) because it is about how we manage and cope with a behaviour rather than how that person copes, or why they use it. Which is why complex is a much better term, one person’s behaviour will challenge different people in different ways, physically aggressive behaviour does not affect me the same way it affects others. I just seem to be able to cope with that particular type of stress better than others, it’s often about your fight, flight or fright response and whether that naturally works well, or whether you can control it in the right way.
For example, my natural response may be fight (generally it is) But what that means is I will face the problem, I won’t freeze and not know what to do (fright) and I won’t immediately escape (flight) However, faced with someone being physically aggressive I cannot stop adrenaline from flowing, but I am able to call upon my library of strategies to potentially respond and deescalate.
If a person’s natural response is flight, then this can have a negative impact. If someone is presenting a complex behaviour, they are communicating, to run away from that will either make the person feel as though they are more ignored, or validate the behaviour for them as being effective, in which case they may repeat it.
The terminology involved with social care is always a contentious issue, I could go on about jargon and what it means, how it’s not very “person centred” to use jargon, but it changes so rapidly that most people in social care can barely keep up with whatever the relevant politically correct terms are. In the context of behaviour, we’re going to need some terms, otherwise I can’t articulate certain aspects.
For my thinking and how I try to educate others this is how I differentiate.
Challenging means: Staff are struggling to cope
Complex means: The individual is struggling to cope.
The standard definition of challenging behaviour is Eric Emerson’s which most people working in social care will be familiar with.
“culturally abnormal behaviour(s) of such intensity, frequency or duration that the physical safety of the person or others is placed in serious jeopardy, or behaviour which is likely to seriously limit or deny access to the use of ordinary community facilities”. 
For the most part, challenging has negative connotations, it will be for most people physical aggression, or verbal abuse. Complex encompasses many more things particularly in relation to the last part of Emerson’s definition. For example, a person who withdraws from staff contact, they stay in their room all day and don’t want others around them, even their favourite staff member gets rejected.
There will be a cause for this, it is a challenge for staff, they need to think of ways to engage with the person to hopefully figure out what it is that may be causing them to withdraw. Sometimes in this kind of scenario, I’ve heard staff say something like:
“It’s their choice not to socialise, it’s their choice to tell staff to leave them alone”
Fundamentally this is true, however, this is a person with a learning disability, is it an informed choice? Are they fully able to comprehend or communicate their feelings, and what it means?
Often, people say “no” to anything new, people don’t generally like changes and people with Autism and disabilities very rarely like change, familiarity makes coping and problem solving much easier, and the world a less imposing and frightening place.
Their choice or not, staff need to try more, never give up on the first go, it may just be a matter of going slow, consider the environmental factors, health issues. Maybe the person has lost a favoured item, maybe they have a headache and all they need is a pain killer, maybe staff are wearing too much perfume… this is the challenge for staff, to consider every possibility. Of course, staff should know the person well enough to identify likes and dislikes that may impact on their behaviour, or at least have access to historical information to figure it out. Sometimes this is the case that it’s all new, and everything is yet to be discovered.
Complex describes these kinds of situations much better than challenging, it is challenging in the real sense of a puzzle being challenging to solve, but at least it takes away the implied aggression of the term challenging behaviour.
Physical aggression is a very common response for a person who is frustrated and not being heard, almost always they will have tried other methods before they decided to hit staff or pull hair, or bang their head on the wall. Most of the time (and I speak from personal experience) the person is being aggressive because others have not understood them, the rest of the time they have not understood others.
When interviewing people, I always ask them to tell me their understanding of the term challenging or complex behaviour and it’s amazing how few people can describe it, or give an example of some real behavioural problems, many think of it as someone having a tantrum, but a small child having a tantrum and a person self-harming are two very different things, mainly because a tantrum is very rarely complex.
Child wants ice cream- parents say no- child cries.
The child will cry either because genuinely upset, or as children learn very early on, crying gets sympathy, and often what they want. The cause and effect is simple.
An adult with a learning disability may have also learned these same strategies to get what they want, but why violence? Why smearing faeces? If either of these is the typical response for a person it is likely they use it because at some point in their life they exhausted the other possibilities, and learned that smearing faeces will get a response, anytime, anywhere.
But how should we respond to this? There are some people, usually with Autism but certainly with some level of sensory impairment where smearing is meeting a sensory need, but generally it’s because it is extreme and will make people respond. But what do people usually do? They would more than likely start by cleaning up, help the person to bathe and change clothes, this may be the desired outcome, maybe they wanted physical contact, maybe some TLC? Maybe just to know that staff are aware and responsive (many times I have seen situations with people who smear where new staff get it more, this may be down to staff having not learned the right response, but often the person is testing the new staff to see what they can cope with.
“If you can deal with this, you can stay”
For some people, the extreme behaviour may be signalling something else, a seizure, pain, an annoying noise, staff chatter, they’re too cold, need a drink… anything, so maybe at times, the clean-up needs to happen secondarily, not that anyone wants to leave faeces on the floor or walls, or a person but not responding to the root cause won’t ever eliminate the behaviour.
Regardless of the behaviour, being pre-emptive is paramount.
There was young man I worked with who has Autism and severe epilepsy. I went to see him 3 times a week to go out and do a variety of things, often I would arrive at his house and he would have had a seizure the night before and was too exhausted to go out. After a few months working with him I developed what can only be described as a sixth sense… I knew before I arrived, if he was going to go out, I also knew before I arrived whether or not he was going to be hyperactive, or in a calm mood.
This goes against all my beliefs of having logical and realistic explanations of behaviour, what was it that made me know this? Maybe the atmosphere? Maybe I’d developed a subconscious understanding of the cycles of his seizures, I still don’t know. I’m sure with comprehensive research I could figure it out.
One behaviour he had was the desire to touch people’s hair, we’d be sitting on a bus and for some reason he would touch the back of a person’s head, eventually I got that sense again and I knew when he was going to do it, which people he would target, but they were all different, one day an older woman with short hair, the next a teenaged male…no apparent pattern, but I started to know, so I would watch his hands and if they started to move I would tell him no… It worked.
Now I can’t put that into his guidelines:
“Develop extra-sensory perception for his habits”
But I kind of had, the same has happened with other people, nowadays I can very quickly identify and articulate triggers, I’ve lost count how many times I’ve gone to meet someone who is “challenging” and they don’t present any behaviour, staff say
“Normally he would leave when a new person comes in”
“I don’t know why, he didn’t lash out, he must like you”
“Must be in a good mood today”
That person may be in a good mood, they may like me, but not for some unknown reason, but because as soon as I walked into the room I was ready to rapidly risk assess, I know that a person may not like someone standing over them, or that you should greet straight away or wait to greet, or that you should be quiet, make eye contact or not, how to use my face to respond and so on…
I do this automatically, but am acutely aware of it. If someone is sitting calmly and enjoying some loud music, I won’t walk in and turn it down, if someone is huddled in a corner and not responding, I may dim the lights, or open the curtains…
What is needed cannot be generalised, but this ability to rapidly assess is something I can do, often its simple things that make a difference, how do I judge each situation? I use instinct and my vast well of experience in these situations. It’s not something everyone can do, but it’s a skill that support staff will benefit from and should work on. Really, it’s just about thinking about possibilities, what could be the problem, a slight breeze, an ambulance going past outside, your deodorant, hunger… Many things you can eliminate quickly, they just had lunch so it’s unlikely hunger, it’s summer so they are unlikely too cold, these things go without saying and you won’t need to consciously go through them (a person could always have extreme sensory differences, which can complicate things) Mostly it’s common sense, think about what could annoy you! It’ll likely be much the same stuff that annoys them. I don’t always get it right, plenty of people have made it clear they don’t want me around them, but respecting that or persisting is also a valuable skill.
Responding to behaviour for someone you know well, should become intuitive, if you’ve been supporting someone for 6 months and they still smear every day, or the behaviour has increased either, you’re doing something wrong, you haven’t built a relationship, the cause of the behaviour has worsened, or you may be being reactive rather than proactive. This may not be your fault, you might need specialist help, or advice, or just a new set of eyes to see the situation that is nothing to be ashamed of.
Many times I have seen staff walk into a home and change something, open curtains, change the music, turn the TV on or off. Sometimes these are things that need to happen, sometimes the staff know that the person prefers things a certain way, but sometimes they are imposing their idea of how it should be, their values and that may not suit the person.
How would you feel if I walked into your house and changed the TV and made myself a coffee? People’s wishes should be respected in their own homes, and when staff take over, it’s not surprising that behaviours arise. All this comes down to a basic level of empathy, something all support staff should have, put yourself in their shoes!
In community settings and day services this becomes more difficult.
How do you manage the environment of the community? You don’t… be pre-emptive, communicate with the person what they may have to cope with (if they dislike noise, buy them some headphones, and wear some yourself, remember you can’t be embarrassed.) But stick to familiar places, make sure the person knows where you are going, what the outcome is, what they will get out of it.
In a day centre it is even more difficult, but surely in a purpose designed building you can make it work? It’s never going to work for everyone, guaranteed, whatever you do, someone will have a problem with it.
A man I worked with had been excluded from his day centre, part of the referral to me was to re-introduce him to the day centre, so I did some research.
Apparently he had his own special chair he sat on, his own special cup, activities were built around his needs, and he had essentially taken over a service which 50 other people accessed every day. This was in response to his autism partially but mostly in response to his behaviour, not entirely wrong, they had understanding of his need for familiarity and routine, but that still didn’t stop him aggressing physically toward others, or throwing objects in the kitchen, including knives.
I told social services that it wasn’t going to work, yet they insisted that we try,
“We’re setting him up to fail”
“We need to try, it’s expensive for him to be supported at home all the time”
I wasn’t going to win that debate, but actual events will solve it, and maybe I was wrong, maybe he will like it now… maybe. So I submitted, and we arranged a visit.
I went with him and his key worker to the day centre, as soon as we walked in he was greeted by 15 people shouting and milling around in the foyer about to go out, he panicked and sat down and refused to move for 20 minutes… not a good start.
After the group left and things were quiet, we went upstairs and made a cup of tea to go and sit in his favourite chair, but an activity was starting, so we were prompted to join it, we went into the art room, he sat on the floor again, then other users started to come in and make noise, and do unpredictable things so, he defecated on the floor.
“Right, I think that’s pretty clear, let’s go home”
His message was strong.
“I don’t like it here”
If he could speak and express his feelings, he would have told us and we would’ve respected that, but he couldn’t.
Was it worth trying to find a way for him to access the service, to overcome the very obvious sensory difficulties he was experiencing? I didn’t think so, he was better off doing one to one activities with staff in his local community, and even down the road at the shops it was more predictable and controllable than a day service.
What was wrong with it, simply is it’s just not for everyone, nothing is. And they were “parting the red sea” for him. But that was never going to be enough, it was a reactive response that appeared proactive. Someone with needs like that is always going to find it difficult to fit in to a service like that, and we should be supporting people to have normal experiences, how many 40 year old people go to a day centre every day? It’s an outmoded aspect of the social model of disability care, in that we falsify a normal day.
People go to the same place for work every day, let’s set up a building where disabled people can go every day, then we give them a pattern of activities that are pretending to be constructive.
Many people don’t go to the same place every day for work, I don’t, and I’d get stir crazy if I had to, but that’s just my nature, my preference.
The activities are usually staff chosen and directed, although there is a need for this at times, generally it’s not user chosen and therefore not meaningful.
Every one eats lunch together, I’ve never worked anywhere in which all staff eat together at the same time, that’s an institutionalised way of thinking, it’s like school. I hated school, and what many people with disabilities tell us is that school was a negative experience for them because of bullying, not memories we want them to relive on a daily basis.
Obviously for many people with autism and disabilities, this sameness can be important, can give them the scaffolding they need to function.
But another man I worked with (at the same day centre) was coming in everyday, soaking his clothes in the toilet then walking around naked, this was causing great demands on staffing, as he wasn’t someone who really needed to one to one support and was offending other users with his nakedness.
He would do this several times a day, and would just up and leave an activity to go and do it.
Again I did some research, I started by asking what responses they had tried.
“Have you tried different communication methods?”
“Have you tried incentives?”
“Have you thought it’s sensory?”
“Does he do it all the time?”
“No, he only does it in the building, he won’t do it when we go swimming, or out for a walk”
“Has he always done it?”
“No, he used to throw glasses of water over people”
“How did you stop that?”
“We restricted his access to drinks, only at break times”
“Don’t you think that’s a bit excessive?”
“But it didn’t, he just replaced it with something worse”
So I spent a few days observing him, on the first day the answer became apparent.
It was as described, but what I noticed was most of the time he wanted to be alone, he would interact and join with other people when he felt like it. He would happily draw, or use a computer without any need for staff interaction or support.
I observed him in an art class, where they were making a Papier Mache solar system, he barely engaged at all, and only with a great deal of staff prompting, then up he went, to the toilet…came out naked.
It was clear to me that he didn’t like being in the building, he didn’t like the structure imposed on him, he didn’t like the activities imposed on him. The Papier Mache solar system meant nothing to him, was of no interest, so why should he engage?
To test this I took him out one day to another building, a day centre too, but one where he was free to have the service personalised. I didn’t support him at all, I did the opposite. I left him to it, showed him where art supplies were, where the toilets were and where he could make a cup of tea. He did all of these things without help, and without presenting any behaviour.
We continued with the same approach every week, he did the same things (5 paintings every day, this was non-negotiable) went to the toilet when he chose and got a drink when he chose to. The support was in fact to not support him, to not interrupt his freedom of choice by scheduling breaks. He created his own routine, and it worked for him. But being part of a service shared with many others was not what he wanted or needed.
Many people with disabilities and autism have had messages drilled into them about how to behave.
“You must shower and shave every day”
“Sure, I suppose, I don’t shave everyday”
These again are standards and rules imposed by others, if I was made to shave every day I would likely be challenging too. I want some freedom, some choice… informed choice.
“If you don’t shave, some people might think you’re scruffy”
“I don’t care what people think”
Mental health has played a significant role in my work, particularly in the UK. Specialising in behaviour management means that not only do I need a wealth of understanding about disabilities and behaviour, I need to understand mental health conditions, because sometimes I may have to hold my hands up and say.
“This one’s beyond me, lets speak to psychiatry”
That didn’t happen often, and I am of the firm belief that medication should always be a last possible response, I accept a short term regime of medication to help someone get to a baseline that we can work with is important at times, but generally I would rather try everything else first.
Often though, some people fall between their disability being the main issue they face and their mental health, I can think a vast amount of people I have met and worked with where they have a mental health condition, but it has less impact than their disability. Some though, you know that the struggle is different.
Specialising in behaviour invariably leads into contact with clinical teams, and since much of the focus of my work has been helping people to live in their own homes in the community, and lead as functional as possible lives, this also invariably leads to spending time in psychiatric services, and requiring a depth of understanding about the processes that these kinds of services use.
As I have no clinical education, it could have easily been intimidating working in such environments, but my approach was always to focus on the functional realistic approaches. So went in with a strong and confident attitude, particularly bearing in mind that many consultant psychiatrists do indeed have something of a god complex, and will easily impose their way of doing things on others.
I’m not saying they are always wrong but sometimes, they are.
One case in particular stands out:
I was asked to go and work with a young woman who was currently on a local psychiatric ward which had several beds allocated for people with disabilities. This young woman had been in Ghana with her extended family, she was sent there in the first place by her mother because she couldn’t manage her behaviour, the family eventually had the same problem and sent her back, and she was immediately sedated and put into hospital. The staff on the ward were also having difficulty managing her, despite their specialised training a 19 year old woman with autism seemed to stump them.
She was frequently physically aggressive, scratching faces, poking eyes, throwing objects, she frequently took her clothes off and flushed them in the toilet along with other items, took food off others and had a seemingly endless appetite.
All the nursing staff on the ward bore the scars of her attacks, and many were going off sick, agency staff were refusing to work there while she was…
How could a young woman cause so much difficulty?
I and the local LD team’s behavioural specialist went in to help, the idea is we’d manage the behaviour then help her move back out, not something new to me.
I went and met her, she was petite, highly sedated and under close observation by a couple of hefty male nurses, I said hello, she said hello back in a mousy little voice, then I left. We asked the ward to put in place some communication materials, and to impose some structure in her day, offer some predictability, but they didn’t and the behaviour continued, the fear she had instilled had prevented the team from being constructive with her.
Shortly thereafter I attended a multi-disciplinary meeting around her future support, I explained to the resident consultant that we couldn’t just put staff in, that we needed time to set up a structured program, find the right home and specially train the staff to manage her. On top of the above mentioned behaviour she also had a tendency to spit at people in public, often children and make sexually suggestive comments to people. So the risk for staff was high. The consultant disagreed, she said:
“This young woman is ill, we need to set up support, what’s the problem?”
“I won’t put staff in a dangerous situation without being prepared, some staff will refuse to support her with this history”
“But this young woman is ill”
“I know, they will understand, but staff can’t be expected to accept violence towards them, we won’t have anyone to support her”
This continued in this vein, until we started shouting at each other, the rest of room sat in stunned silence, no one told Antonia off! But it was important that I make that point, I never said no, I just said let’s do it right.
Eventually, I was proven right, the young lady was sent into an emergency PICU unit with serious forensic cases, there was no way we could transition her into her own flat from there.
She then got sent to another ward which was in a well-known north London hospital. I was initially hopeful that we could really get underway here, the ward had a better reputation (it had a reputation, that’s something) but upon arrival, staff were very suspicious of me, despite explaining my intentions and having arranged the visit over the phone. Inside the ward was very much like any other hospital environment, and it was full of people who were clearly heavily sedated and dribbling on themselves in front of the television, screams came from another corner.
“Should I be aware of anything?”
Great, doesn’t feel like a very nurturing and caring environment.
Here we began our work. I visited her with one of our best support workers, the ward staff were using various aversive methods to manage her, they all kept their distance and always had something between them and her, we just sat next to her chatted, eventually it worked out for her and she moved into a residential service that could meet her needs, but we took the time we needed and it succeeded, it was team work and patience.
The process had to be slow, or at least at the right pace for her. It involved staff supporting her to go step by step into more significant experiences to get used to being in the community, to remove the institutionalised behaviour that quickly set’s in when people are on a hospital ward and to teach her some ways to adapt to social experiences.
I was working on setting up a new service that ultimately fell through but it was an interesting and rewarding learning experience for me.
The plan was to assess a number of people who were in inappropriate placements, hospitals and clinical services where they shouldn’t be, and to bring them back to their local area and close to family to live lives in their communities, just like back when long stay hospitals closed.
Through this process of assessment, I encountered a few services which surprised me in different ways but it was one place in particular that left the greatest impression on me, this stands out in the age of post-winterbourne care.
This young man Alex, was in a hospital placement near the town of Bedford, I spent a day going out there to assess him in light of whether he was ready for a supported living environment. I arrived at the privately owned hospital, in a quite idyllic rural location. Externally it was like a small village of large houses, I entered the office area and met the receptionist, she was very friendly as I explained my visit and apologised for being late, and it had been much harder to get to than expected.
In the well-designed foyer they displayed drawings by Stephen Wiltshire, a famous and sought after Autistic artist. The hospital was a specialist clinical service for people with autism, which I thought would be something quite amazing, to have that kind of focus within a service. And judging by the art and the exterior it was very well resourced.
The receptionist called the necessary person, head nurse of the ward he was on. I ended up waiting some time and was offered a drink and felt quite comfortable.
After nearly 20 minutes the receptionist pointed out someone coming across the parking lot, I looked out to see a woman very slowly walking toward the office, so slowly in fact I thought maybe she was a patient… she came in, the receptionist asked if she was here for me, a blank stare followed… No, as it turned out she was from another ward, I thought to myself.
“I hope she’s not indicative of the staff here”
The receptionist, very apologetic makes another call…someone is on their way. I can accept the wait, it’s a psychiatric service, and sometimes things happen that staff cannot leave, fair enough.
Eventually another very slow woman comes and collects me.
“Are you here to assess Alex?”
“Yes, kind of, mostly just here to meet him and find out a bit more, put a face to the name.”
“Not an assessment?”
“Not a clinical one, you’ve done that here I assume?”
“I don’t know”
We enter the building Alex’s ward is in, the exterior was a lie… inside it was just another hospital ward, and not particularly autism specific either, I suppose you could call it “low arousal” but that’s just because there was nothing there.
I get directed to the nursing station, it’s a very small office with at least 6 people in there. Eventually I enter, and after around 10 minutes on the ward and at least an hour on site, I’m yet to set eyes on any patients.
Another woman greets me, she is the Nurse Matron, with a somewhat hostile look on her face.
“You are here for Alex”
“To do an assessment”
“In a way, I just want to get to know him, nothing too formal”
“OK, but to move him out?”
“Possibly, couldn’t say until I get to know him”
She was clearly suspicious of me, and I suppose I could’ve given her more details, but I was there to take someone out because they weren’t meeting his needs, I wasn’t there to agitate at that time, as much as I may have wanted to.
We walk to Alex’s room, what I know is he absconds, he has PICA (eats anything he deems edible…anything!) is non-verbal and doesn’t engage much, can be aggressive but only to get to food.
We enter his room, it’s around 3pm at this point and he is in bed, curtains closed, he has a staff member observing.
The Nurse Matron goes into a diatribe about Alex and wakes him up, quite aggressively pulling his duvet off him, and prompting him to get up.
“No, no… Don’t interrupt him on my account”
Too late, I’m already conflicted. He has Autism and complex learning disabilities, maybe there’s a good reason he’s in bed, maybe it’s needed, but what I do know is that her method of arousing him was definitely not in line with good autism practice.
He gets up and goes in and out of his bathroom, he is quiet, very thin and tall.
They go on to tell me about him grabbing food off people, picking up faeces, which is why he needs 3 staff to go out in the community.
“Three? For him?”
“Yes, it’s good if he leaves here though, you can get him the staff levels he needs.”
“Sorry, three isn’t enough?”
“No, we can’t give him three at all times, only when out”
Not sure if she was aware, but there’s no local authority in the UK that will fund more than 3 to 1 staffing, and why she thought we could give more was a mystery…
“We use a harness when we take him out”
On a 19 year old fully grown man…
“We won’t use a harness, definitely not in London, that wouldn’t go down to well”
I’m becoming baffled, is this a specialist service or not?
I leave and return to London, with an hour on the train to ponder what I’ve seen. There’s no doubt that this young man was complex, communication needed a great deal of work, and he would need a well trained staff team, but it was clear that the hospital had done little to nothing to prepare him to move out. Often the clinical environments, don’t take reality into account, this learning has been reiterated for me many times. Often they will do brilliant work to manage or control behaviour, but usually do little that is person centred or community oriented. I can’t speak for all such places, but can say this confidently for the wards I have visited, some have been outstanding, but for the most part quite poor.
Who am I to question the work of highly trained clinicians? I’m someone who has experienced first-hand what it’s like to support people is why.
One man I worked with for a number of years and experienced a great deal of anxiety about leaving his house. We had tried many different approaches, many psychologists, behaviourists, psychiatrists and so forth had attempted to make changes to no avail, we tried some things twice, three times always with the same outcome.
After all these years we came to the conclusion that the fundamental problem was he needed to move out of home, no one was willing to say this to the family (I eventually did after a crisis) But at one point a new trainee psychologist joined the local learning disability service on placement, I had seen a fair few of these come and go.
But a fresh set of eyes is always helpful, I often take on the role of being the outsider looking in. She came in and met him, assessed him through whatever means she used, I assume a functional behaviour assessment, something that had been done several times.
She then came back to me to discuss her findings and some ideas for strategies.
“Brilliant, any new ideas will be welcome”
“I’ve designed a chart for him”
“With a reward system”
“We’ve done that a few times”
“He gets a star every time he makes a small achievement”
“A star sticker, on the chart, gold for meeting the goal, yellow…”
“No offense intended, but we’ve tried every incentive under the sun, he has a very limited range of interests, 90% of which he can do at home, and honestly, I don’t think he’ll give a fuck about some stars on paper”
Clearly I did mean offence, it was silly idea which we had tried in many forms.
“Can we try it for 6 weeks, then review?”
“No, it won’t work”
“Just six weeks”
“Just to put this in context, he’s 32 years old, very smart, he can do crosswords I find difficult, he can use computers quite confidently. He is motivated by food, games and playing pool, and talking to women”
“We’ve tried incentives, we’ve tried stickers…they are meaningless to him, but just to make a point, we’ll use your idea and in six weeks, you’ll hopefully start listening to what I say”
When you’ve worked with someone for years, you can be closed off to so called “specialists” coming in and telling you what to do, what you’ve missed, done wrong and so on, on a few occasions they have come in and offered really helpful useful advice and strategies, other times not. In another situation, with another person I would have thought my own attitude to be narrow minded, and I have been on the other end of people thinking I’m being the know it all who is telling them they’ve been doing everything wrong.
But in this case, I knew she was wrong. It never feels good to say “I told you so” in these situations, but I have so many times.
We tried her sticker book, I never told other support staff what I thought of it, just said it was a new initiative and we’d give it a go. Other staff who knew him well clearly held my opinion too, but unlike me weren’t willing to say so.
We tried, it failed.
It was meaningless to him, as I explained. I took no pleasure in sending the aspiring psychologist away with her tail between her legs, and discussing with her supervisor the utterly ridiculous approach she offered, but it needed to be done, we’re always told, don’t underestimate the knowledge of carers and family, well, clinicians shouldn’t underestimate the knowledge of frontline support staff. She was inexperienced, and she also made the mistake of not trying to engage the support staff, she visited him without staff being there, without our input into things, and wasted time coming up with an idea we all knew was going to be fruitless. The clinicians that have been the most successful have engaged with support staff and created a team approach.
Despite my criticism of clinical experiences I have also had some excellent experiences in such settings and with a few people that I hold in high regard and have happily accepted their advice.
In particular I have full respect for Speech and Language Therapists, I think there’s a particular kind of person that becomes an SaLT, someone open, warm, naturally communicative, someone who is just approachable. I haven’t met one I didn’t like as a person, I met one who was living on a planet that was unreachable by most people, but her work was good.
Particularly influential in much of my work, and my own belief that communication is the key to positive support has been several SaLT’s. I think partly because unlike some clinically trained people, SaLT’s do frontline work, direct, hands on with people. That’s how you get understanding, that’s how you learn about a person. That’s why I’ll always give SaLT’s time, and regard their opinions.
I have full respect for nurses, it is a really tough job at times, but I wasn’t really aware for some time quite what nurses had to do.
I did a piece of work reviewing a forensic ward for men with disabilities, all were offenders in some way, arson, rape and murder for most. Many were disabled and had been taken advantage of by others, lead down the wrong paths due to being vulnerable, some had no real comprehension of the crimes they had committed, others did and were working hard to move on with their lives.
The ward itself was very positive and seemed to work effectively and certainly had done excellent work with some of the patients.
However, the big divide within the ward itself was between nursing staff, there were specialist mental health nurses and specialist learning disability nurses working side by side. In theory this should mean all bases are covered and a person can get the right care and support within such a setting, but it didn’t really work that way.
For one, what I learned was that the role of the nurses on this ward was significantly around admin, the amount of recording and documentation they did far outweighed any time spent with the patients, and the mental health staff and learning disability staff constantly butted heads over what was causing people to do certain things.
Only one of the patients on the ward made me feel uncomfortable, he posed no threat to me and my colleague at the time, but I felt he was on edge at all times and could potentially change at any moment, even though the crime he was committed for was less severe than many of the others.
This particular person was a point of contention amongst the nursing staff, most felt he needed to go to a more secure environment and he spent most of his time in isolation.
One problem was that the mental health staff said
“We can’t help him, his personality disorder needs more intensive attention”
LD nurses said.
“It’s challenging behaviour, we just need to know what’s causing it, but not here”
They all agreed he should go, but for differing reasons.
Secondarily to the administration was they were essentially security guards for much of the time, dealing with patients fighting each other, or attacking them.
They had little opportunity to actually offer any direct care.
Once in a while a person comes along that pushes all boundaries and expectations, someone who’s behaviour is verging on impossible to comprehend, and even the best of us get stuck thinking.
“What the hell am I going to do with this?”
Dale was soon to turn 19, we had been asked to support him in adult services to provide a day service and after hour’s respite. On paper Dale sounded like a monster, I knew from experience that what is written about people tends to be the extremes, and the generally positive experiences get overlooked in light of the complex issues.
That wasn’t the case with Dale.
I conducted his initial assessment, he was attending a school in London’s Borough of Southwark, this was an autism specialist school but Dale wasn’t in the main campus, he was based in their annex. When I say annex, it was a completely separate building on a completely separate site about 15 minutes’ drive from the school itself. This building wasn’t even a school environment so much but a mini secure unit, if I didn’t know better I would have said it was a forensic service. All locked doors, clear surfaces, 4 metre high fences around it.
I went in and there were no students at the time, I got shown around the place and told about the highly challenging nature of the 4 students who used it, including Dale and his brother Kyle.
The “annex” even had a padded room for safety, this set the alarm bells off…
“This is the soft play room”
“Soft play? Looks like a padded room to me”
“Yeah, it’s where we put the guys to deescalate”
“So it’s a de-escalation cell?”
Staff proudly displayed their scars from where Dale had bitten them, they all had chunks of flesh removed, and most of them came to work with leather jackets on in preparation.
Of course I asked what kind of clinical input was conducted
“He’s had it all, nothing has helped”
I got shown photos of Dale pouring flour, or putting pizza in the oven, busy work but I suppose he was engaging, that was promising.
Then they arrived, Kyle and Dale came in different vehicles, Dale was around 5 foot 6 and slight, but muscular.
“Don’t underestimate him, he’s very strong” one staff said.
I wasn’t going to.
All the male staff at the school presented more like security guards rather than teaching staff.
Dale was handsome, with a charming smile, but for the broken teeth through which he frequently made whistling sounds, which apparently meant he was content.
Kyle on the other hand, much shorter and built like a tank. One of his fingers was as thick as two of mine, at least. He stormed around, and constantly gave staff full handed pinches. They were toys for him, and he knew he could do what he liked physically.
Kyle was a year younger than Dale, so he was going to come to us after his brother.
The fences around the building were designed for Dale, he was a serial absconder and an adept climber, the staff said even with the height of them he would escape and who knows what he would do when he was out.
So he absconds, he bites people. That’s enough in itself but let’s not stop there, Dale had a tendency to drink anything that was red, so cleaning products had to be kept well hidden, erroneously they still had a bottle of red detergent in the school, sitting on a window sill!
Dale was also ticklish and liked some rough play with staff, a bit of wrestling around, this however also turned violent frequently and Dale would grab a hold of someone he was directing his anger at and attempt to bite them for up to half an hour at a time.
“That’s an incredibly long time for an incident of behaviour”
Both Dale and Kyle have Autism, both non-verbal, both incredibly strong, neither with any understanding of the pain they could inflict on others.
Neither had seemed to experience any real education, and had basically been dumped in the annex to protect everyone else at the school along with the other young men at the annex.
I put my distaste for the secure unit approach to education aside and just thought at least if he leaves some progress can be made, or so I thought.
The next step was to meet mum, and to go out with Dale. I went along on a weekend, to go out with him. I met his staff at his house and they explained how often he wouldn’t emerge from the house for an hour or more. Mum would usually come out and tell staff to wait, she would never let any staff into the home.
She came out and I attempted to speak to her, she was nice and interested in what I was saying, but also very closed off, non-committal. She bore the scars of her son’s behaviour, she was understandably wary.
Dale came out eventually, he appeared to be happy, and I was still yet to see any behaviour that I considered challenging. At the school he had looked at me and swiftly brushed past, obviously exploring who I was but little more than that.
He was strapped into his seat in the mini-bus, he wore a full body harness. I asked if this was necessary.
“You don’t want him to kick off in the bus, can’t defend yourself”
The bus also had a plastic guard behind the driver’s seat, I would soon find out what that was for. I sat at the back of the bus, Dale two seats in front of me and both of his support staff at the front. We discussed things as we drove, on our way to a distant and uninhabited park somewhere in the wilds of south London.
They said he liked the park, and had a tendency to urinate anywhere so he could do so at this park without children seeing it. The police had been involved with Dale on numerous occasions.
As we were driving along Dale was given a packet of crisps to eat to keep him occupied on the journey, he would slightly break up the crisps in his mouth, most of it would then drop out onto the floor of the bus, like many autistic people he had a very limited diet and it appeared that texture was important, the crispiness was what he was enjoying rather than the need to eat.
Then, I discovered what the plastic guard was for, he projectile spat a mouthful of crisps at the driver, the guard didn’t fully cover the front of the bus, so a great deal of it still got on him. He causally put up his hood and carried on. Dale continued to do this throughout the drive.
We finally arrive at the park, the staff un-strap Dale and he gets out of the bus, it has now clouded over and starting to drip on us. Dale got straight back into the bus,
“He doesn’t like the rain, we better go”
Nearly an hour of driving, and that was it. I had been in many situations working with people with autism who would arrive somewhere and turn back around as soon as they get there but the staff made no attempt to convince him otherwise.
We’re back in the bus and driving out of the park, Dale starts to make a high pitched but quiet moaning sound, the sound increases and he starts to rock, this increases and increases, his vocalisations have become louder, almost shouting, it sounds like he’s in pain. He starts to bang his head against the window, the rocking becomes harder, his muscles tensed, the seat he is on begins to lift of the floor of the minibus, and the staff keep driving.
“Nothing we can do, just need to let him go through it.”
The bolts holding his seat down are coming out of the floor of the bus… then it stops. He turns to me, stares me straight in the eyes, anger is the only description for the look on his face, rage even. He spits directly in my face, a huge glob of mucus.
Not sure what to do I just sit and wait. He is calm again, he now has his ball which he takes everywhere. He can bounce it in unusual rhythmic patterns, he could also spin it on his fingers for minutes at a time without touching it with his other hand, then bounce and straight back to spinning. Later on the drive he seems to become upset again, hard to tell why. The staff suggest it may be his bowel, again like many people with autism he has very sensitive bowels and these can cause him a great deal of pain.
We are now heading home, I get them to drop me off at a nearby tube station to head back to north London where I lived. All the way I’m thinking about his behaviour, and still not sure what to make of it.
His spitting will put many people off, thinking back to my time with Jim where he was just dribbling, and that upset people, he never intentionally directed it at anyone.
But the physical aggression would be tough, he was so strong and fast and when he aggressed it was truly unrestrained, there was nothing in place to respond, and this I would need to think about.
On top of all this, but a minor thing in the greater scheme of it all, but what would eventually become pivotal in the whole experience was his “private time” which was basically him masturbating, he would lie on a mat on the floor face down and play with himself. It was agreed that when this happens staff just leave him to it, fine by me.
I completed one final observation before the service we were going to provide started, I went out another day with two of his staff, all the weekend staff were employed by his mother using direct payments, several of them also worked at the school, which was questionable to me as I saw little there that I felt was good practice.
On this day the two staff were form the school, and the plan was to go swimming. One of Dale’s favourite activities as he had an obsession with water and would happily spend hours in the shower each day, the shower would also prove to be a good anxiety reducing activity later on.
We drove to the swimming pool without any issues, we get off the bus and are walking toward the entrance of the pools and Dale vomits on the ground, he seems unfazed and carries on. This is something related to his bowel/stomach sensitivity, he gets bad reflux, particularly from fizzy drinks which are avoided.
We go into the pool, one I’ve never been in. It’s during the day so nearly empty, it has a water slide into it and two open shower cubicles for people to rinse off before or after getting in the pool. Dale makes a beeline for the shower, the staff member stands by him and holds a bottle of shower gel, he squeezes some into Dale’s hand and Dale washes himself, this continues in this pattern for some time, Dale refuses to stop until the very large bottle of gel is emptied.
Once it has, the staff coax him into the pool, they play around for a while, splashing each other for a while, I watched interestedly as a few other people, mostly elderly were in the pool and some came very close to Dale, he seemed to not notice them, or not care. This all finished without any issues, swimming would definitely be part of his normal week, but we’d buy him smaller bottles of shower gel.
The service begins, he has 3 to 1 staffing, 2 staff minimum at all times. This is pretty much unheard of outside of clinical settings.
Some staff don’t last long, others seem OK with the aggression, and we even have a couple of good female workers. They see the charming side of Dale, they see past the behaviour. He is fascinating.
I set up an entire floor of a building for him, it has a kitchen, shower room, 2 rooms for general purposes and one room which I set up as a personalised sensory space for him. He seems to enjoy the sensory objects at different times, but mostly he sits with his ball.
The rooms are on the first floor of a building, so there is a 10 metre drop from the windows, we need to secure these because it turns out he also likes to break glass, usually with his head.
“We should allow the windows to open though, for fresh air”
“He likes to throw things out windows, anything at all, even if he likes it”
A number of weeks later I hear about an incident of Dale climbing out onto the roof, which drops down onto the footpath of a very busy road.
“OK, let’s lock the windows, he goes out a lot anyway”
We have issues with some staff, some are scared and some just let him be, no attempt at progress. But he is busy every day, he goes out, he’s going swimming. There’s incidents of physical aggression, serious ones, but no one gets really hurt.
The problem that is occurring is that Dale’s mother is not happy, with anything. The manager of the service who was a person I respected greatly with over 20 years’ experience in disability care, was at her wits end, calls every day complaining about something, she was frequently abusive to staff picking up Dale, she would make staff wait for hours without word, then change plans without warning.
Even when we made some good progress and tried to tell her about it she didn’t care, this was outweighed by whatever problem she had at the time.
I was also to learn that both Dale and Kyle were at one point taken away from her by social services due to some kind of safeguarding alert when they were young, they had been returned to her but she was in a never ending court battle with the local council and learning disability team, I suspect it is still going on today.
By that last sentence, it is obvious that I no longer work with Dale. We had finally gotten his service to a point where things were working, there was incidents, but the only major one was a staff member witnessed hitting Dale, he was dismissed and police involved, but both myself and his manager thought he was a good worker, I learned to never let my guard down about staff after that.
Dale’s day service that we provided ended at 3:30 each day, then his staff employed by his mother took over, they would remain in our building to provide his respite funded hours. These were usually some of the previously mentioned school staff.
One day in the afternoon around 4:30 I get a call from the centre manager,
“Ahhh, we have a problem…with Dale”
I instantly think someone is hurt.
“He’s gone missing”
“We’ve followed the procedure, it was with his respite staff, police informed”
“Nothing I can do from here, keep me up to date, make sure the police know what he’s capable of”
I wait with phone in hand, wondering what could have happened, he’d absconded many times in the past but I hadn’t heard of anything serious happening. Later in the evening I get another call, Dale was found by the British Transport Police sitting on the edge of the platform at the train station across the road. He had been reported by transport staff, he went with police without any problem…
The next day I go to investigate the incident. I speak to staff along with one of my directors, we’re deadly serious, and he could’ve died. All our staff reflect the same story.
Respite workers came in, as they arrived and our staff finished up at 3:45, 15 minutes after their finishing time. Dale was having his “private time” so staff just stayed at the periphery of the room which he was in, in case he decided to leave.
Our workers were finishing up their notes for the day and as they were leaving at 4pm, went to say goodbye to Dale, he wasn’t there…
They asked the respite workers, they didn’t know where he was, then he was missing…
Dale’s mother didn’t accept that it was the fault of the staff she had employed, and blamed us squarely, so she withdrew his service.
Not having the stress of dealing with his mother was good for the manager, and for staff. But we had made substantial movement to getting things working, progress was made and considering Dale’s behaviour, I thought we’d done pretty well. This was one of the first pieces of work I’d done as a consultant and not directly supporting people, it was a great learning experience for me, but disappointing all the same. Although I can take credit for designing a service and giving advice that worked, the staff we had mostly did an excellent job managing him.
Some months later I was contacted by the director of another support provider, he told me he was setting up a new service for Dale and wanted some advice. I gladly met with him and explained our experiences, he left with all the information I could give him and I didn’t hear anything again.
Some years later I met another person from an autism specialist school, they had been providing Dale and Kyle with a service, which had failed, they had withdrawn, and since we were involved he had numerous providers come and go, some couldn’t manage him, but mostly it was due to his mother.
What should I take away from this, and what can others learn from my experience? Frankly, not much… we worked hard, we did our best with little resources, we put up with the expectations of an incredibly demanding parent, we managed some of the most aggressive behaviour I have ever seen and we had all the work swiftly taken away. All the same things happened to provider after provider until eventually, Dale and Kyle will end up in a hospital placement, or a secure unit of some sort I assume. The learning is unfortunate, but all I can find from the whole experience is that sometimes support work is futile, that may be harsh, we did make progress and have success with Dale, but it was all wiped away by his mother’s decision. It is her prerogative as his carer to make that call, but at some point someone needs to intervene.
We must always try to improve and progress, but accept that sometimes it won’t work, and in this case, because of something we could not control.
I’ve made an emphasis on some extreme situations, but as I said at the start of this chapter, behaviour isn’t always about physical aggression and smearing. Often it’s much more discrete than that. Managing behaviour is sometimes just supporting someone in a bad mood on a bad day, we all have those. But that support is just as important as managing the most difficult situations. The positive impact you can have on a person’s life by simply cheering them up, or being a shoulder to cry on or just being patient for them matters too.
Don’t ever underestimate what a behaviour might be saying, don’t ever take it for granted, and don’t be afraid to ask for help, it can be very stressful.
 Eric Emerson 1995. Challenging Behaviour: Analysis and Intervention in People with Severe Learning Disabilities. Cambridge: Cambridge University Press. p. 3.
 A meeting, usually at regular intervals of all the key professionals involved in a person’s care package
 Psychiatric Intensive Care Unit, usually reserved for serious forensic cases
 Many countries had these, during the late 1980’s these places started to shut down to moving away from the Medical model of care to the social model of community based care and support.
 Supported Living refers to a person living in their own home, with their own tenancy with some level of support.
 Autism Specific Environments refer to places designed to be appropriate for people with Autism taking into account sensory needs.
 Person Centred Approach is a methodology to support people to meet their wants and needs
 A Positive Behavioural Support method of recording and understanding when, where, how often a person may present a behaviour and to hopefully find out why.