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.

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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


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 by the National Autistic Society, titled ‘What teachers need to know about Autism’, is 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.

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.

Thursday, 7 September 2017

Back to school for children with PDA

It is the beginning of September again and parents all over the country are preparing for the start of the new school year.  For some parents though, this is a time of increased stress, or even weary resignation, that once again they will have to face the daily battle of encouraging their child into school.  For others, getting their child into school is a distant memory.  These are the parents who have either made the difficult decision to home school their son or daughter, or have children who have voted with their feet and become ‘school refusers’.

Some of these families will have a diagnosis of Autism or PDA for their child, and others will not. The issue of a PDA ‘diagnosis’, or even a description of PDA as a distinct behavioural profile, remains contentious.  Parents over the summer have reported that their local CAMHS team, or Local Authority, have ‘not accepted’ the PDA description given to their child because ‘it does not exist’ or ‘it is not in the manuals’.  Autism was not included in the DSM until version 3 which was published in the 1980’s!  That certainly did not mean that prior to 1980 Autism did not exist.

Unfortunately though, this rigid sticking to ‘what is in the manual’ is potentially very detrimental to children and their families.  What may have been stated as a difficulty in formally diagnosing a condition which has yet to be full researched, by a perfectly well meaning CAMHS clinician, is often interpreted, Chinese whisper style, as ‘PDA does not exist’.  When this then feeds through to school teachers and SENCO’s it can lead to tense situations between school and parents. This can leave many families facing a struggle to ensure that their child is appropriately supported in the classroom. 

But what about those children and young people with PDA who are home educated, or simply refuse to go to school?  Clearly some thrive and do very well away from the social pressures, and sensory overload, of school.  Others do less well.  I have become aware of an increasing number of young people, who are effectively ‘un-schooled’ to the point that they spend all day, every day, in their bedrooms, playing computer games or watching YouTube.  Some become so socially anxious that they rarely go out of the family home.  This can, and does, continue well into young adulthood.  There are a growing number of support groups for parents of young adults with PDA and, sadly, this is a situation they are all too familiar with.

So what is the future for these young people? Many parents are desperate and burned out, unable to work or access any kind of social life.

Maybe the first step is for early recognition of the potential difficulties that children and young people with PDA face.  Early recognition by both mental health teams and school staff. It is not good enough to simply dismiss parents and send them away on a parenting course, or label them as ‘anxious’ or ‘fussy’ parents.  This is not going to help the child, or go any way towards supporting them through school.  As stated, home schooling does suit some children very well, and for some is the best option.  For others, though, particularly those with very rigid thinking and high levels of social anxiety, it may not be helpful at all.  

Many children with PDA do want friends.  They want to socialise and deserve the opportunity to learn, not just academic skills, but also the social skills that they will need in adult life in order to function in the world.

PDA does exist.  The research evidence is growing and a much clearer picture is beginning to emerge about what PDA looks like, how it presents in both girls and boys, what kind of features distinguish PDA from other difficulties.  I can wholeheartedly reassure any clinician or teacher reading this article that PDA occurs all over the country (and probably all over the world) in many different types of families.  These families have NOT had the opportunity to talk to each other and come up with the same story to convince a clinical team. Neither have their children, who present in a remarkably similar way.

So maybe the best reception any parent going back into school after the summer holidays could have is for staff to say ‘I believe you, we will do what we can to help support your child’. Whether or not their child’s particular profile of difficulties currently appears in a manual is irrelevant.

For those interested in the research mentioned above, watch this space for future updates.  

Thursday, 11 May 2017

Autism, anxiety and the impact upon parents

This article is about Autism and anxiety.  Research suggests that up to 85% of individuals with Autism will suffer from anxiety. A child with Autism is twice as likely as a neurotypical (non-autistic) child to experience anxiety.   A significant number will suffer from extreme anxiety – to the point that it affects not just their life but their family’s too.  Some children are too anxious to attend school or social events.  I am not talking here about reluctance to go to school, or a mild feeling of anxiety about a new challenge or situation, I am talking about complete meltdown and panic attacks at the thought of whatever is asked of them.  In our clinic we have even seen children who are so anxious that even the mention of school sends their anxiety levels off the scale.  This type of anxiety is debilitating.  We always say to people, visualise the worst situation you can possibly imagine being in; one where you feel under threat or completely overwhelmed.  Luckily, for most of us this only happens from time to time.  For children (and some adults) with Autism this can happen every day of their lives.  It is no wonder, therefore, that some will do anything (including hitting out or trashing the house) in order to escape from this feeling.

However, in this article I want to talk specifically about the impact of this anxiety upon parents who are often struggling to deal with the fallout.  On a daily basis, we see, and receive emails and telephone calls from parents who are quite literally broken.  Loving and caring parents who are experiencing what amounts to domestic abuse every day of their lives, parents who report symptoms of trauma (flashbacks, panic attacks and intrusive thoughts).  Very often these are mothers who have had to give up everything – career, friends, dreams of their own, in order to provide care and support (and quite often schooling) for their children.  There is no easily accessible support for these parents.  In desperation they visit their GP (sometimes repeatedly) and ask for a referral to anyone, anywhere, who might be able to help.

Instead of support though, they find that they are criticised and talked about in the classroom and by other mothers in the playground and, sadly, even some professionals.  ‘I don’t know what the problem is, he/she is fine at school’, ‘if he/she was my child, he/she wouldn’t behave like that’.  Then follows the speculation and discussion about what these poor parents must be doing (or not doing) to manage their child.  ‘He/she just needs boundaries’, ‘Try rewarding good behaviour and ignoring the bad behaviour’.  But just how are parents supposed to manage a meltdown which goes on for hours?  ‘Leave him to cry, he will soon get over it’.  What if he or she doesn’t just ‘get over it’ and what if crying becomes a full-blown panic attack where the child threatens to stab him or herself with a knife, or ties a ligature round his or her neck, or where the only way to escape from this ball of fury is to lock yourself (and your other children in the bathroom) while your child launches him or herself at the door armed with a knife?

It is no wonder that these parents arrive at our clinic quite literally shaking.  They are constantly on the alert at home, waiting for the next explosion.  Many describe it as ‘walking on a knife edge’ or ‘walking on eggshells’.  They try and put on a brave face, tell us how much they love their child and how they want to make sure he or she has the best possible future, but they are often exhausted, burned out and, not unsurprisingly, depressed.   Most are untreated and unsupported and simply left to get on with it as best they can.

It is important to note that these are not isolated incidents or confined to one particular group of parents.  We have seen parents from as far afield as the Middle East, all parts of Europe and the United States of America and what is so compelling is that their stories are unbelievably similar.  These are not parents who have read something on the internet, or seen a programme on the television.  They are reporting EXACTLY the same behaviour and reactions in their children.

In addition, they are stumbling about in the dark in terms of what to do for the best.  If your child is anxious and wants to spend every waking hour on the x-box or has a complete meltdown every morning about going to school, what should you do?  Accept that a child on the Autistic spectrum needs time to unwind and effectively re-charge their social battery, so you let them play for hours in a darkened room, alone apart from online ‘friends’? Accept that for some children, formal schooling is not working, so you home school?  What will happen to that child when they become a teenager or an adult?  Will they ever come out of their bedroom and engage in a ‘normal’ life?  What does ‘reducing demands’ mean?

To some extent, everyone, including the professionals, is working in the dark.  In years gone by, although there were undoubtedly people who would have been diagnosed with both Autism and PDA, there were no x-boxes or smartphones; children were not placed in a competitive, results-driven school environment and there was no TV or social media. There is also little research about what happens to adults on the spectrum, particularly those with PDA.  

Many of the parents of children we see at our clinic often say they recognise features observed in their children in themselves.  Some report that life got easier once they were in charge of their own destiny and not subject to endless demands from others.  Others simply said that they grew out of the extreme behaviour and found ways to manage their anxiety.  Others have not been so lucky and may be the absent parents, and those who have experienced some form of breakdown.  What is very clear is that teachers, mental health professionals and those involved in policy making, cannot simply continue to ignore this problem.  Parents cannot just be left with no support for themselves or their children.  Without appropriate diagnosis and intervention strategies, the problems experienced by these families can only get worse.  There is no point in trying to sweep this problem under the carpet, continue to blame parents or question their stories when they do seek help.  There are some children who simply cannot respond to a ‘Supernanny’ approach to discipline and child-rearing, and they, and their parents, need support and understanding now. 

For details of our services surrounding anxiety please head to our website at