Thursday, 19 September 2019

If at first you don’t succeed . . .

The latest article within this series hasn't been written by Dr Judy Eaton, but instead by Kaylee Weaver, one of our very experienced Higher Assistant Psychologist. Here, Kaylee shares her experience of the challenges we as a team face week in week out when assessing children with Extreme (also known as Pathological) Demand Avoidance.


Me and My Experiences with PDA/EDA Assessments


by Kaylee Weaver, Higher Assistant Psychologist, Help for Psychology

INTRODUCTION

Presenting demands to children with PDA/EDA is one of the biggest challenges I have had to face as an Assistant Psychologist. From attempting to engage these children in activities they enjoy, to attempting to administer psychometric assessments, I have never been given a free pass. Trying to maintain a child’s mental health, avoid a meltdown, and build a positive rapport, while simultaneously trying to encourage such children to ‘comply’ with necessary demands or complete required assessments often feels like an impossible balancing act.

As an Assistant Psychologist at Help for Psychology, I have received guidance from highly experienced clinicians in this area and have now worked with many individuals who present with extreme demand avoidance. In this time, I have developed a greater understanding of how to manage and work with anxiety driven, extreme demand avoidant children. Therefore, I would like to take the opportunity to share my experiences in the hope that it may provide some insight into this profile of Autism and may provide a few ideas around how to overcome some of the barriers professionals, teachers, and parents alike may face when engaging with children with this profile.

THE AVOIDANCE EXISTS – I’VE SEEN IT!

A natural reaction to demands for some children is avoidance.

Over the past 18 months of observing children with PDA/EDA I have witnessed many avoidant behaviours. The power of some children’s avoidance tactics never ceases to surprise me, and all sense of pride or dignity are frequently lost as a child’s level of avoidance has resulted in me, yet again, administering assessments in tents, or under tables, or delivering assessments to toys or teddies, or children pretending to be superheroes or animals as they try to avoid any of my direct demands. I am always in awe at the ideas these children are able to come up with in order to avoid tasks; that mystery option number three that you never quite managed to think of yourself in enough time to strategically deliver a demand - and they have outsmarted you yet again!

The most obvious avoidance tactic, other than realising you are upside down hanging off a chair trying to administer a cognitive assessment, and asking a child if they know how trousers and shirts are similar, is the use of elaborate excuses: ‘I’m afraid that’s not how the world works’, ‘I can’t possibly; I’m Mr Platypus and platypus’ don’t talk’, ‘my nose is running so I can’t do it’, ‘I’m a bit tired now, maybe we should stop’, ‘this is boring’, ‘they aren’t allowed in here so I can’t until they leave’. Whilst such excuses can at times feel comical, it is important to remember they are being delivered by a child whose overwhelming anxiety is driving their need to be avoidant. Other avoidance tactics I have noticed include asking me repetitive questions to delay completing a task, or offering me lots of information relating to prescribed interests or previous experiences to an intense degree in an attempt to distract me or delay my delivery of tasks or activities.

These children have also on numerous occasions employed physical avoidance tactics such as presenting with a significant amount of impulsive behaviours, or physically removing themselves or assessment materials from the room in order to avoid me personally, or me using any potential equipment to complete an assessment. Some have attempted to direct my attention elsewhere, by pointing to objects or showing me items in an attempt to distract me, delay my delivery of a demand, or delay the completion of a task. At times, albeit, thankfully, less commonly, children have threatened me with physical violence, or responded with hostility and aggression, or threatened to inflict physical pain upon themselves in order to communicate that they have reached their peak of anxiety. This is usually their final avoidance strategy, having exhausted all of their avoidance resources, at which point the ‘mask’ usually falls and the extreme control is clear for all to see.

I’M THE ADULT, YOU’RE THE CHILD, RIGHT?

Control. Controlling me, controlling others, controlling their surroundings, controlling demands. Control is the best option available to a PDA/EDA child who is trying to manage their anxiety when faced with demands. For example, I have, on several occasions, relinquished my need to be an authoritative professional as an eight-year-old has informed me ‘you can stop talking now’ or ‘I will tell you the answer and you can tap the iPad yourself’, with a particular favourite of mine being ‘how about I deliver the assessment to you instead?!’

I have developed an endless list of strategic ways in which children with PDA/EDA have exerted their control over me personally (at times without me even realising that I have surrendered control). A couple of examples include; controlling the way in which I am allowed to deliver demands (with the door open, facing away from them, putting on a French accent, using a superhero figurine), or instructing me to complete certain activities/tasks of their choosing (such as writing cards to their family members, or drawing pictures for their peers) before they will contemplate following a demand or even ‘allowing’ me to deliver a demand.

Alternatively, I have observed such children trying to control others; where people could sit, when people could talk, what people could say. I have also witnessed PDA/EDA children attempting to control demands themselves such as; when the demand could be delivered, what demands they were happy for me to deliver, in what order the demands could be delivered, what activities had to be completed before, in-between, or following the delivery of a demand.

Attempting to work around a demand avoidant child’s avoidance tactics is hard enough without realising that you are now being controlled and are having to actively accept that a child is attempting to control you, the adult. By reflecting on situations where PDA/EDA children have presented with a high level of control or avoidance, I have employed a variety of strategies that have proved useful when attempting to engage with them.

IF AT FIRST YOU DON’T SUCCEED, TRY AND TRY AND TRY AND TRY AGAIN

Remember the days when traditional behavioural strategies such as rewards, negative consequences or punishments in general were a popular tactic employed to address ‘misbehaviour’? In my experience, these methods are likely to significantly hinder the probability of a child with PDA/EDA demonstrating ‘model’ behaviour or following my demands – in fact, this approach has typically left children feeling angrier and more resentful, and myself feeling ultimately embarrassed and frustrated. 

Broadly there are a series of strategies I employ in order to be able to successfully deliver a demand or an assessment:
  • Framing demands as a challenge. I have often framed a demand as a really challenging game with different levels that the child can progress through (it is important that they have the ability to achieve all the levels in this ‘challenge’) or as a challenging game played against myself or others where the child can compare their achievements (it is important that the child always ‘wins’).
  • Framing demands as a race. I have often pitched demands as a race against someone else, again with the opportunity for the child to demonstrate their ability to achieve and win. This strategy is always amusing to employ as it is quick paced and before the child has even realised, they have complied with a demand and completed a necessary task.
  • Using inadvertent discovery. I have found that placing objects or materials near to the child is useful in seeing whether such objects can independently spark a child’s interest. I have noticed that if interest is sparked naturally, the child openly allows me to deliver the demand as it no longer feels like a demand but a way for the child to perhaps develop a skill or increase their knowledge.
  • My overwhelming feeling when interacting with children with PDA/EDA is incompetence. However, using this feeling of incompetence and purposefully acting incompetent with extreme exaggeration and dramatization has proved useful when working with these children. I have found that this approach allows the child to feel victorious in comparison to myself, generates humour, encourages engagement, and subsequently results in compliance.
  • ‘Pretending’ to direct demands to others in this room, objects/toys, or indeed myself, has also proved successful. On many occasions I have found myself saying ‘well maybe Spiderman knows the answer to this question?’ or ‘I think it’s Teddy’s turn to do this job’ or ‘I’ve got so many jobs to do, my manager is not going to be particularly impressed with me if I don’t finish them’. By moving the focus of the demand onto someone else it alleviates some of the pressure on the child to comply, and also allows the child’s confidence to remain intact if indeed they aren’t sure of how to complete the task.
  • One of the most important techniques I have employed when working with children with PDA/EDA is simply spending time with them. Engaging in conversations regarding their preoccupations or special interests, engaging in activities they enjoy, and taking time to build a rapport. This communicates to the child that I am willing to enter their world and am genuinely interested in their experiences. I have found this approach useful in developing engagement and trust following which children have been more open to following my demands. This approach also delays the delivery of any demands and helps the child to feel as if they themselves have successfully avoided demands and sufficiently delayed their delivery, after which they feel as if they have regained some control.  As such they may subsequently actively choose to comply with any further demands with a sense of accomplishment at having delayed them for as long as possible.
  • It is also helpful, where possible, to  relinquish some control to the child and allow the child to choose what demands will be followed, in what order, with who present etc.  This has proved extremely valuable in avoiding meltdowns and promoting compliance.  



A FINAL COMMENT

Remember you are only human and working with children with PDA/EDA is HARD. Strong emotions are often triggered and I have found self-reflection to be a valuable tool to employ when attempting to manage my own emotional responses to PDA/EDA children’s behavioural presentations. For instance, when a demand avoidant child is displaying avoidance tactics or controlling behaviour I try to think of similar situations I have experienced personally – when I have felt extremely anxious and have been presented with a situation which I believe might threaten my safety, or when I have been resistant or defiant  because I have been asked to do something that frightens me.  By recalling how I felt during these times, I have been better able to empathise with how these children might be feeling when they are faced with any demands and are employing strategies to avoid or control. I have found that feelings of frustration and anger easily arise and cloud my ability to empathise with these children who are clearly in distress and I have had to actively encourage myself to try and understand each child’s unique emotional experiences during these situations. By recognising my own emotional responses, I have been able to successfully maintain my own mental well-being and have therefore been able to employ a more empathetic, positive, flexible, informal approach when working. This has allowed me to, on several occasions, maintain a child’s mental health, avoid a meltdown, and build a positive rapport, while simultaneously managing to complete required assessments.

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If you would like further information on our PDA/EDA assessments, either visit our website - Help for Psychology - or email us at office@help4psychology.co.uk 


Wednesday, 21 August 2019

Transitioning to secondary school from primary school for Autistic children


Many children (especially girls) do not receive a formal diagnosis of Autism until they move to secondary (or High school) around the age of twelve.  This often follows few (or fewer) difficulties at primary (or Elementary) school.

The reasons for this are outlined in this article and may help explain why some children require additional support to make this important transition.

When a child is at primary school they generally tend to be taught by one or two teachers each year who are responsible for delivering the whole curriculum.  Teaching usually takes place in one classroom (with occasional lessons in the school hall or IT suite).  Books are kept in a desk or locker close to the classroom.

The move to secondary school usually involves the child going to a far bigger school, sometimes across multiple sites.  Whereas in primary school, the teacher teaches the whole class for the day and generally gets to know the individual children quite well, in secondary school, teachers teach a subject.  As a consequence, they may not get to know the individual children as well as the primary school class teacher.  In addition, the child often has to make their way from one classroom to the next at the end of each lesson, often having to make sure they have the homework from the previous lesson written down and their books ready for their next class before they leave.

This can be a particular challenge for the child with Autism.  Many, (probably most), will have significant challenges with their executive function.  Executive function is the ability to plan, sequence and organise.  Difficulties in this area will often result in lost books or kit for sports activities.  It may also mean that the child struggles to find their way quickly and efficiently to the next classroom.

Many children with Autism also have difficulties with their working memory and processing speed.
This means that when the teacher informs them of their homework or what they need to bring for the next lesson, they probably won’t remember what was said.  Add to this the challenges many have with processing speed and handwriting and it is very likely that the child will not have time to accurately write down what is needed in time before they have to leave the classroom for their next lesson.

The curriculum also changes when the child moves to secondary school.  Most typically developing children will have a huge development in their reasoning ability at around twelve.  Piaget referred to this as the ‘formal operational stage’.  This is the time when the child becomes able to think in abstract terms and to move beyond the ‘here and now’.  In children with Autism, this ability can be slower to develop.  This often means that the child suddenly begins to struggle with school work (even if this has not been an issue in the past).  Questions like ‘How would it have felt to be a World War One soldier?’ are often challenging and cause frustration.  Suddenly questions in coursework and examinations rely upon the ability to make inferences and deduce information from various sources.  This can be incredibly challenging for the Autistic child who remains at the stage of ‘concrete’ thought.  Mathematics questions are often not straightforward and ‘hidden’ in text which, again, makes interpretation of exactly what is required more difficult.

There is also the issue of friendships.  In the primary school years, playdates are often facilitated by parents. Parents often take the children to and from school.  By the time they reach secondary school, there is often an expectation that they will travel to school on their own or with peers.   Children decide for themselves who they wish to be friends with (and who they do not wish to be friends with) and can be very cruel to anyone who does not ‘fit in’.  Both girls and boys with Autism can struggle to read between the lines and cope with young people they thought were friends talking behind their backs.  Girls in particular find the whole ‘Mean Girls’ culture very difficult to handle.  In today’s social media-driven world, it is impossible to escape from the pressures of this type of interaction, even at home.

All of the above can lead to the child beginning to experience higher levels of anxiety and even begin to school refuse.  Of course, once this pattern starts, the child will quickly get further behind in their school work and may lose contact with their peers.

Many of these problems could be easily supported.  Giving young people their homework on a sheet of paper, giving clear and unambiguous explanations for what is required, helping them to organise their school bags and find their way around school (some schools use colour coding for different books and parts of the school), all help to reduce the underlying anxiety.

Having a place the young person can go to at lunch time if they are overwhelmed by the sensory environment, or simply struggling with friendship issues can make all the difference to their ability to manage the day.

A final note, and one that has been mentioned in previous articles, is the issue of ‘masking’.  Just because a school teacher or SENDCO does not recognise either the Autism or the anxiety in a child, does not mean ‘there is nothing wrong with them’.  Some children are incredibly good at covering up both their difficulties and their anxiety until they get home in the evening.  If a parent reports that they are experiencing difficulties at home – even if the child has not had difficulties in the past – it is still worth considering making the small changes outlined above, they might just make all the difference between a child coping with the transition to secondary school or not.


Footnote:

Launched on 21st August 2019, this new book addresses the gender gap in the understanding of autism, and explores the educational needs of girls on the autism spectrum from early years to secondary school, in both mainstream and special settings. For further details, visit Amazon by following this link - https://amzn.to/2KDJR1X





Wednesday, 31 July 2019

Our current thinking on PDA


As many people may be aware, there has been a great deal of interest in, and controversy around, PDA.  What it is, what it should be called, and whether it actually exists.

As it is now over thirty years since the original concept of PDA was introduced by Elizabeth Newson and her colleagues, and how the thinking around Autism has moved on significantly during this time, it is very appropriate that this is discussed.

The first point of discussion is often around the name – many people find the term ‘Pathological’ difficult to accept.  They state that it puts the ‘blame’ for the demand avoidance firmly upon the child, and misses the reasons why a child might avoid certain situations or requests.  No one would dispute that avoiding demands is a human trait – we all do it to some extent.  Sometimes there is a completely rational reason why a child might resist doing something.  School and school work are often a trigger, and many children are actually traumatised by the school environment, and the fact that they find aspects of the work difficult.  They may have sensory issues that lead to them becoming overwhelmed in certain situations.  All perfectly reasonable reasons to avoid activities.

Some people prefer to use the term ‘Extreme’ to describe demand avoidance, but again this is not without its challenges.  What exactly qualifies as ‘Extreme’?

In addition, there are a growing number of people who actively identify with the label of PDA, and refer to themselves as PDAers. Using such an identity gives them a feeling of belonging to a group of people who understand their challenges, and who is to say that this is wrong? 

However, there are significant difficulties with this in terms of pinning down what exactly PDA is.  A major critique of PDA is that there are still no clear, unambiguous features of PDA that everyone agrees on.  Support for, and acceptance of, PDA across the United Kingdom, and indeed across the world, is variable.  Some areas have taken a stand and stated that it ‘does not exist’, or that they do not recognise it as a diagnosis, or even as a descriptive label. This has led to a huge rise in the number of parents and individuals who feel they recognise features of PDA in themselves, seeking support via social media sites.  This is undoubtedly a lifeline for many who are desperate for support.  Sadly though, ‘evidence’ gathered from these sites does not tend to be accepted by those carrying out academic research, or those who decide upon policies.

Another major point of discussion centres around whether PDA is exclusive to Autism.  This is a really interesting question.  As a team we have been fortunate to be asked to assess children (over 350 in a two year period) with a variety of difficulties and backgrounds.  Very often, on paper, the referral information looks very suggestive of what has now become known as the ‘PDA profile’.  However, when we meet some of these children, and spend time (often several hours) interacting with them, it becomes clear that their demand avoidance can be ‘better explained’ by something else (sometimes a ‘rational demand avoidance’ or attachment difficulties/developmental trauma). 

As a team we have spent many many hours discussing this and trying to pin down exactly what feels different.  We have carried out research on the data gathered from these 350 children, and have written this up for publication in academic journals. But these things take time.  We have taken on board the critique which has been forcefully expressed by those who do not feel that PDA is a ‘thing’ and have questioned our own judgement time and time again.  But (and this to us is a very important but), sometimes a child comes into our clinic and we all look at each other and say ‘There it is, that’s what PDA is’, because these children are SO similar.

Our team has spent many hours with children with a variety of different difficulties, and there is just something about the children with the PDA profile that makes us believe that it is an identifiable ‘thing’.  It will take time and more research to establish how this ‘thing’ can be better understood by a wider audience. All of these children meet criteria for Autism first, and the PDA is explored alongside this.  It may be a co-morbidity with Autism, it may be a trauma response, but ignoring it or arguing about what to call it or whether it is a ‘profile’ or a ‘syndrome’ is not helpful for the parents and children in the middle of these discussions.

It is not pleasant discussing the impact that the types of behaviour we have seen has upon parents, teachers, siblings and often the young person themselves, but it is a fact.  Many people do not like the idea of labels, or of sub-categories for Autism.  We, however, tend to use the analogy of apples – apples are apples, but there is no doubt that a Gala apple or a Pink Lady apple is better as an eating apple, whereas a Bramley apple is better cooked in a pie.  All are apples, but using a descriptive label helps people to know something about their individual characteristics.

Some critics argue that there is no need for a label such as PDA, and that the strategies suggested for working with children with PDA are just good autism strategies.  This is true up to a point – using a flexible child-centred approach is beneficial for all children.  The opposite does not apply though.  Trying to use routine-based, Autism strategies, or strategies that work for children with attachment difficulties, such as reward charts and contingency based systems, simply do not work for children with the PDA profile.  Ask any teacher.  With this type of approach, it is hardly surprising that the PDA society survey found that 70% of children with this profile were home educated, or out of school.

The take home message from this post is to appeal to those people who are so against the idea of a PDA profile – please give those of us on the front line time.  Time to pull together our evidence, time to read and learn from others in the field. These things take time to develop.  The process of publication of academic research is slow.  There is no doubt that after 30 plus years it is time for a fresh look at PDA; but simply arguing that it does not exist is not helpful.  Also please listen to the few professionals out there who have experience of being at the ‘coal face’ – those of us who have actually sat on the floor with a child, tried to negotiate with them, attempted to play with them, and listened to their broken parents.  Also, please listen to the children who ask for help and who say they don’t want to be difficult or challenging.  Please think about the potential trauma for the child who is being continually misunderstood and mismanaged.  Please think about the parents who are accused of fabricating or causing their child’s difficulties due to poor parenting and remember, until the 1980’s Autism itself was not in the diagnostic manuals like the DSM.  This did not mean that some people were not autistic before 1980.

For further details about our service please visit our website - www.help4psychology.co.uk 

Thursday, 21 March 2019

Living in a ‘five minute bubble’ – the impact of poor executive functioning.


Human babies are amongst the least developed, in terms of their ability to manage independently, of all mammals.  They are born with only the primitive parts of their brain fully functioning, with the majority of brain development taking place throughout childhood (hence the soft spot or fontanelle at the top of a baby’s head which allows its brain to grow significantly during the first year of life).  The parts of the brain known as the ‘frontal lobes’ are the final part of the brain to fully develop.  This does not happen in typically developing children until late adolescence, although the process starts at around 12 years of age.  The frontal lobes are responsible for ‘executive function’.  Executive function has a number of component parts and all of these functions tend to be impaired in children with Autism and ADHD.  It was thought that this ability tended to improve in individuals with Autism and ADHD some time between the age of 18 and 25.  However, this appears to have been an over-estimation and some people can continue to experience difficulties throughout their life.   The different aspects of executive function are outlined below:

Inhibit – This is the ability to resist impulses or not act upon them, or to stop certain behaviour at an appropriate time.

Self-monitoring – this is the awareness of the impact of an individual’s actions and behaviour upon others and the ability to observe and evaluate their own behaviour.

Shift – this describes the ability to move freely from one situation to another, including the ability to make transitions, tolerate change, problem solve flexibly, switch or alternate attention between tasks, and change focus from one topic to another.

Emotional control – this is the ability to modulate or regulate emotional response to events.

Initiate – this is the ability to begin a task or activity, and independently generate ideas on possible problem-solving strategies.

Working Memory – is the ability to hold information in mind for the purpose of completing a task, generating goals or plans and working out the next steps necessary to achieve them.

Plan/Organise – this is the ability to plan and organise task demands, anticipate likely outcomes, and set goals.

Task Monitor – this relates to how well an individual can reliably check their own work for accuracy and ensure a task is complete.

Organisation of materials – this is the individual’s ability to organise their desk, workspace, home environment, school bag etc., to know what materials are needed for lessons or homework and to keep track of their belongings.

If a person has difficulties in all of these areas, it is not hard to appreciate why they experience so many challenges in day-to-day life.

The secondary school environment (and certainly the average workplace) works on the basis that most people acquire these abilities at some level.  Of course, there are many people who may not have Autism or ADHD who can also identify some of these features in themselves at times.  Alcohol in particular is not helpful for good executive function!  How many people have failed to adequately resist impulses, self-monitor or make good choices when they have had a drink?  However, imagine how challenging this must be to experience this level of difficulty all the time?  For many children (and adults) living with Autism and ADHD the impairment they have in their executive function means that they live their whole life in a five minute bubble – unable to make good choices, unable to see the consequences (for themselves and others) for the decisions they make; unable to learn from past mistakes and apply lessons learned to a new (and novel) problem.

This can (and does) lead to children in school being labelled as ‘lazy’, ‘disruptive’ or ‘badly organised’.  It can lead to adults losing jobs, failing to achieve academic potential, getting into debt or even ending up in the criminal justice system as a result of poor choices and failing to appreciate consequences. 

This remains a hidden and poorly understood disability for many people with Autism and ADHD.  It is not always apparent upon first meeting someone.  There are some extremely intelligent and gifted individuals who have very poor executive function which impacts upon their ability to manage daily living tasks and live independently.  The current benefit system (which include Disability Living Allowance for children and Personal Independence Payments for adults) does not fully understand the huge impact that poor executive function can have on an individual and also how variable this can be – stress and anxiety (which are also common in individuals with Autism and ADHD) can negatively impact upon executive function.

It is vital that awareness of this is raised amongst professionals and parents.  If a child (or adult) has this difficulty there are things that can be done to support them and improve their abilities in this area.  This can include classroom and workplace support and modifications and, in some cases, medication prescribed by an appropriately qualified medical professional.

The main thing though is to remember that ‘five minute bubble’, and to realise that this is not a choice.

Wednesday, 14 November 2018

THE IMPORTANCE OF CORRECT EARLY INTERVENTION FOR CHILDREN WITH AUTISM


Like most people I have been following the recent news stories about young people with autism and the PDA profile carefully.  The first case to be highlighted was that of Bethany, a seventeen year old girl with autism and the PDA profile.  From what I can gather, Bethany’s family had tried (unsuccessfully) for years to access the most appropriate support for her.  By reaching out and acknowledging that they (and she) were struggling, the eventual outcome was that she was sectioned under the Mental Health Act, and has been detained in a number of hospitals ever since.  In her current placement, she has spent an inordinate amount of time in a seclusion room, medicated and isolated from her peers, deprived of fresh air and her dignity (her observation levels do not even allow her bathroom privacy).  Bethany’s case is sadly not the only one which I have personally come across in the course of my clinical work.  There are many young people in similar circumstances across the country.

This raises the question of how do things ever get to the point of a young person needing to be detained in hospital, frequently with no real plan in place to move them back into the community.
The Victoria Derbyshire programme on BBC2 featured a number of young people who were all displaying behaviour that is both upsetting for them and their families, and could potentially lead to them suffering the same fate as Bethany. All of the families interviewed pointed to the lack of diagnostic assessments in the first place, and a complete absence of support for families and young people in need.

As someone who has had experience of working in both NHS diagnostic teams, and as a clinical psychologist in Tier 4 inpatient services, my aim with this article is to provide a (hopefully) balanced view of what the issues actually are within both of these environments.

The NHS team I originally worked in was set up late 2002, and commissioned to see between 40 and 60 young people per year.  By the time I left in 2011, this number had increased to 360 referrals per year.  The resources available (and consequently the size of the team of clinicians) had not increased by this amount, so we were always faced with a growing waiting list for assessment and the inability to offer anything more than assessment and diagnosis.  Currently, waiting lists for assessments can be as long as five years in some areas.  It is not easy to find appropriately trained and qualified clinicians, and diagnosing a child can be a long and time-consuming task if it is done properly – psychologists in particular are trained to ‘formulate’ a hypothesis, or reason, for a particular behaviour or presentation.  This means that the clinician needs time to assimilate information from various sources, and to look at both risk and protective factors in that child’s environment.  It is not good practice to rely on one or two assessment questionnaires, nor a brief meeting with a child and their family.  The risk here is that either something will be missed, and the child will not receive an appropriate diagnosis, or that young people may be incorrectly given a diagnostic label which then shapes the way people manage them in the future.

Unfortunately though, without an assessment or diagnosis, families are often left in the wilderness with no support.  This can then lead to a crisis situation developing and parents reaching out to professionals who have no real understanding of the complexity of the issues facing many families. Admitting a child to inpatient services should be a last resort – a short term measure designed to keep them safe and to assess the young person.  It was never designed as a long-term solution.

Given the nature of a support worker’s job, it can be hard for organisations to recruit and retain committed and appropriately experienced staff.  This can, and often does, lead to an over-use of agency staff.  Agency staff do not tend to know the patients as well as the regular care staff, and may not always have time to read care and support plans.  Obviously for patients (both with and without Autism/Learning Difficulties) this can be unsettling, and often leads to more ‘incidents’ which may have been avoided had regular staff been on duty.

For some reason, it is also hard to recruit permanent Child and Adolescent Psychiatrists in some areas.  This means that roles are often filled by locum Psychiatrists, who may be adult, not child and adolescent trained.  Adult psychiatrists do not have specific training in autism.  It also means that there are frequent changes in lead clinician, which can lead to disjointed care, and frequent changes in medication.

An ATU is not always the most appropriate environment for young people.  Hospitals are unfamiliar and often too bright and too noisy.  There is little privacy.  Low secure units, where the perimeter is surrounded by a high fence can also be terrifying for the young person and make them feel as if they are in prison.  In addition, they are often hundreds of miles away from their parents and friends.  This makes visiting difficult, and also makes it almost impossible to carry out family work.

My own personal opinion is that young people with autism and learning difficulties (including those with complex profiles like PDA) do not need a psychiatry-led medical service.  There is a place for medication and support for mental health issues, but the majority of young people are better served by a multi-disciplinary approach – incorporating psychology, speech and language therapy, and occupational therapy.  All behaviour is a form of communication.  Therefore, a formulation approach, where possible causes for behaviour are examined and put into context, seems far more sensible.

Many young people, by the time they arrive in an ATU, will have had many years of trying to cope in an environment that they find difficult.  Parents are often burned out and crying out for help.  Early support is not always available, and many parents find themselves unfairly blamed for their child’s behaviour.  Young people may go on to present with features of PTSD and even catatonia (where they simply switch off).  Managing this distress by giving someone anti-psychotic medication merely damps down some of the anxiety and anger, it does not deal with the underlying cause or help them to recover from it.

There is often nowhere, and no team, for the young person to move on to when they are discharged from hospital as Local Authorities do not have either the resources or funding to make sure this happens.  This leads to young people being kept in hospital for far longer than they actually need to be.

This helps no-one.  These environments are not, and cannot be, truly therapeutic.  I challenge anyone not to become stressed and start displaying ‘inappropriate behaviour’ if they are locked up 24 hrs per day, with no peace and quiet, and little or no privacy. 

What is needed is far better support for parents and young people BEFORE situations reach crisis point.  This means much better understanding of the ways in which autism presents, a timely assessment and diagnostic process and a better understanding of PTSD and trauma. Finally, there needs to be a stop to instant ‘parent blaming’ and a move towards a formulation-driven collaborative approach.  It would also be helpful if the views of the autistic community were sought – maybe professionals need to engage in more talking with, rather than ‘doing to’, autistic individuals.

Friday, 31 August 2018

More things that teachers need to know about Autism


An article published on 30th August 2018 by the National Autistic Society, titled ‘What teachers need to know about Autism’, was a very timely reminder that 70% of children who are on the Autism Spectrum will be attending mainstream schools. Hopefully those with, what I would call, more obvious features of Autism, will be going into (or back to) school with a support plan, or at least an awareness of their strengths and challenges.

However, what I would like to highlight in this article is that a large number of children will be going into, or back to school, without a diagnosis, or any recognition of their difficulties. Many parents will be sitting at home now dreading the next few weeks. They will have watched their children becoming increasingly anxious as the summer holidays come to an end. They may have seen an increase in tearful behaviour, repetitive questioning, or even angry outbursts and ‘meltdowns’ over the smallest thing.

The trouble is, those children are often the ones who school teachers think are ‘fine’ because they do not appear to be struggling in class. So I would like to outline some of the signs that a child with undiagnosed Autism might display which can often be mistaken for something else.

I urge teachers, teaching assistants, SENDCo’ and lunch-time staff to please look out for the following – as they may indicate a child in distress.  Not every child reacts in the same way. Think of the fight, flight or freeze response we all have to perceived threat.

  1. Notice the child who repetitively arrives late to class, often distressed, maybe in the ‘wrong’ shoes or with their hair unbrushed. This is not always ‘bad’ or neglectful parenting, but a sign of anxiety about the day ahead which makes it impossible for them to get dressed and ready for school in a timely manner.
  2. Watch out for the child who appears ‘too good’ and/or ‘too quiet’.
  3. Be aware of the child who sits quietly in the lunch hall, picking at his or her dinner, or crying because the chips are ‘wrong’, or the child who refuses to go into the lunch hall and will go all day without eating.
  4. Watch out for the child who has toileting accidents, or who appears reluctant to use the school toilets.
  5. Notice the child who becomes upset because they cannot always be first in line back into class, or the child who cries because it is not their turn to sort out the pencil drawer.
  6. Be aware of the child in the playground who appears to have friends, but when you look closely, they are just following the others around, or the child who is too bossy and tries to control every game, or the child who simply comes to sit with the teacher on playground duty.
  7. Do not get cross with the child who continuously fidgets on his or her seat, or cannot stay in their seat.
  8. Do not get cross with the child whose name you need to call ten times before they respond.
  9. Give the child who (although they seem bright and capable) always struggles to complete their work, a little more time.
  10. Be patient with the child who suddenly rips up a piece of work because they do not feel it is ‘right’ or ‘perfect’.
  11. And finally, please do not automatically label the mother or father who comes into class to talk to you because their child is struggling at home as ‘neurotic’ or ‘over anxious’.  Please do not assume that just because you do not experience the challenges they do that it all must be ‘parenting’.


Autism presents in many different ways. Just because a child appears calm and settled, makes good eye contact and appears to have friends, does not mean that they are fine. Eye contact, gesture and appropriate behaviour can all be learned and copied by a bright child, but this often comes at a cost.

I am not saying these things lightly or because I think that every child who may have Autism necessarily needs to be treated completely differently all of the time. It must be a challenge for any teacher trying to manage a busy class of thirty plus children. However, I have read the worrying statistics about mental health issues and the number of young people who regularly self-harm in adolescence and even earlier. I have also witnessed first-hand those young people on the Autism Spectrum who have experienced severe and sometimes life-threatening mental health difficulties. Often when you look back at early school reports, all that is noted is that the young person was ‘an anxious and fragile child’.

So my message to new and returning teachers at the beginning of this school year is to please metaphorically rip up and throw away your perception of what Autism is and is not. Very few if any children with Autism present like Rain Man, or Sheldon from the 'Big Bang Theory'. Many can (and do) make eye contact, and appear (at least superficially) sociable.  Please print out the points above, pin them on the staff room wall, and lastly, please listen to parents who come to you with concerns.

UPDATE: Launched on 21st August 2019, this new book addresses the gender gap in the understanding of autism, and explores the educational needs of girls on the autism spectrum from early years to secondary school, in both mainstream and special settings. For further details, visit Amazon by following this link - https://amzn.to/2KDJR1X




Friday, 2 March 2018

Watch this space ...


In the course of my clinical work, I meet with many parents who are seeking an explanation for their child’s difficulties.  I am also privileged to have been allowed to join a number of closed Facebook groups where parents share their experiences of bringing up children with Autism and PDA. Without exception, these parents have been strong, resilient and determined to achieve the best possible outcomes for their children.  Many have had their parenting repeatedly questioned and report feeling ‘lonely, isolated and full of self-doubt’.

I wanted to write this particular article to try and clarify once and for all why many clinicians may consider the possibility of a child’s difficulties being due to an attachment disorder rather than Autism or PDA. 

Brain development in babies starts in week four of gestation.  The earliest part of the brain to develop is the brain-stem.  This part of the brain deals with hunger, thirst and respiration.  Next to develop is the mid-brain, which controls sensory processing, pain modulation and motor functions.

A little later what is known as the diencephalon (including the thalamus and hypothalamus) starts to develop.  This part of the brain manages the ‘fight, flight or freeze’ response to threat or perceived threat.  It also serves to process and relay sensory information.

The brain connections present at birth are fragile and still immature, and are highly dependent upon environmental factors.  It is now known that any physical or psychological difficulties which occur pre- or shortly after birth can impact upon how the brain wires up.  Repeatedly being exposed to stressful situations leads to increased activation of the sympathetic nervous system (the fight, flight or freeze response).
 
Chronic stress (and note the use of the word ‘chronic’) can lead to structural changes in the higher regions of the brain associated with emotion control, problem solving, and learning. 
An overactive ‘fight, flight or freeze’ response can also leave the child fearful and hypervigilant.

Children exposed to early ‘trauma’ often have digestive issues, sleep issues, sensory motor issues, hyperactivity, and are impulsive and irritable.  They frequently display difficulties with emotional regulation and experience cognitive difficulties, such as in problem solving, planning and sequencing. They will also display cognitive rigidity and difficulties with play. They are also likely to experience ‘sensory over-responsivity’ and will react badly to touch, light and loud noises. They may also have problems with proprioception – knowing where their body is in space.

It is easy to see how this kind of difficulty – known as developmental trauma – and Autism and PDA can easily be confused.

However, a great deal of research and work has been carried out in an attempt to put together diagnostic criteria for, what is now being referred to as, Developmental Trauma Disorder, and it is vital to get the message out to clinicians who are assessing children that the proposed criteria are VERY clear. There must be evidence of exposure to ‘multiple or prolonged adverse events over a period of at least one year’.   This means repeated and severe domestic violence; significant disruption of caregiving, repeated changes of caregiver, or exposure to severe and persistent emotional abuse.

Some children do, sadly, experience this level of trauma – I have seen it many times in my own clinical work.  Children who have had an unfortunate start in life do display behaviour that looks very much like Autism, and more particularly PDA.  But, it IS different.

Many people, particularly clinicians and social workers, will have come across the Coventry Grid. The Coventry Grid was initially put together by a group of clinicians in Coventry CAMHS in the early 2000’s and subsequently discussed with the West Midlands Regional ASD Working Party (which I was a part of) before being written up by a Clinical Psychologist called Heather Moran and published in Good Autism Practice in 2010. It was revised in 2015, following Heather’s involvement with a group of Speech Therapists working in the youth justice system.  It provided a good framework for distinguishing the types of behaviour seen in both Autism and attachment disorders.

A former colleague of mine, Dr Richard Soppitt, a Consultant Psychiatrist, and his colleagues, have recently published a questionnaire (also in Good Autism Practice) in 2017 which aims to take this work further.

As much of our clinical work focuses upon the PDA profile, we are currently working on a further version of this which will include PDA.  We hope that this will help clinicians to unpick the differences more easily.

In the meantime, though, I would urge any parent who finds themselves in the situation of having to defend their parenting, or is faced with the suggestion that their child has an ‘Attachment Disorder’, to quote the extracts above from the proposed criteria for Developmental Trauma (because this is basically what is believed to lead to an attachment disorder), and ask for the evidence of ‘prolonged and severe’ difficulties. I am not a neurobiologist but given that an over active stress (fight, flight or freeze) response can develop following trauma, is it not entirely possible that some children with Autism, and more specifically PDA, may be born with a heightened stress response, without the trauma? The resulting sensory and behavioural difficulties may at first glance appear very similar until the Autism is explored further.  

Of course, I am not saying that some children, with or without Autism and PDA, don’t have attachment DIFFICULTIES. This, for me, is different from an attachment DISORDER or developmental trauma.  Life happens.  Some parents struggle to manage their children for a variety of reasons; poverty, deprivation, poor role models of their own, depression and substance abuse being just a few.  In these cases, there is no doubt that parenting courses and support to parent more effectively can be very helpful, and more importantly, often brings about a change in both the child’s behaviour and the relationship between the parents and the child. However, this for me highlights the need for clinicians who are working with families to adopt a more ‘systemic’ approach.  By this I mean they take account of the whole family situation when arriving at the most appropriate treatment or assessment for a child who is experiencing difficulties.  They need to listen to the parents.  If the child’s behaviour is so challenging and so disruptive to the family, other children in the family are well behaved and well-adjusted and, most importantly, there is NO evidence of trauma, then sending them on a parenting course, or telling them they do not ‘understand their child’s needs’, is not very helpful.

UPDATE

September 2019. The first of a number of papers and journal articles has now been published, and this can be accessed from our website Help4Psychology where we will be adding further published papers and journal articles, as they become available. The first article is an update of the aforementioned Coventry Grid, which now provides a good framework for distinguishing between the types of behaviour seen in Autism, attachment disorders, and Autism with the PDA profile.