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Missed or delayed Autism and PDA diagnoses

by Dr Judy Eaton30/03/2017 Blog4 comments

This article is equally applicable to both boys and girls. In the course of many years of clinical experience I have learned that boys can be just as good as girls at ‘masking’ their difficulties (particularly those who have the Pathological Demand Avoidance profile).

Way back in the early 2000’s I remember when the National Autism Plan for Children (NAPC) guidelines were developed to assist clinicians in the assessment and diagnosis of children with Autism. These guidelines were followed some years later by the NICE (National Institute of Care and Clinical Excellence) guidelines.

The guidelines recommend that any assessment should start within three months’ of a referral being made. However, this is usually not the case. In 2015 the National Autistic Society carried out a survey of parents who had been through the diagnostic process in the UK. This survey found that the majority of parents were aware that their child had a difficulty from a very early age. The average wait time between parents first noticing a problem and getting a final diagnosis, was reported to be around three and a half years!

The NICE guidelines also recommend that every child who receives a diagnosis should be given a personalised plan, an allocated key worker and ‘the opportunity to take part in age-appropriate psychosocial interventions’.

This clearly is not the case for the majority of young people. Parents often report that they have tried to access support for their children from their local Child and Adolescent Mental Health Services (CAMHS) without success. Some state that they have been told that their child is not presenting with ‘serious’ enough difficulties and that teams only have capacity to see children with very significant mental health issues. The trouble is, that without any post-diagnostic support, children and young people can go on to develop more serious problems.

… what a lot of people fail to understand is that there is no ‘quick fix’.

Also, what a lot of people fail to understand is that there is no ‘quick fix’.  Children with Autism and PDA are not going to be ‘fixed’ by a few sessions of support around managing anxiety, or anger. They are likely to need specialist input from clinicians who really ‘get’ Autism and have the expertise to modify standard CBT (Cognitive Behavioural Therapy) and other approaches. Also, when working with children with Autism, it often takes a significant amount of time to build a therapeutic relationship.

In addition, with Autism and PDA, the issues that families and young people do have, tend to wax and wane. There may be periods where everything is going well, followed by a ‘crash’ when problems become more significant and troubling. This is often at times of transition, when school work or friendship issues become more complex.

Having worked for many years in NHS CAMHS teams, I do fully appreciate and am sympathetic towards the difficulties they face. I know how stretched they are and I am fully aware of the number of children (with and without Autism) who have very serious mental health difficulties. It is a constant challenge to juggle available resources and time.  Prioritising who to see is a nightmare.

How can this be done fairly? What may not appear to be a ‘serious’ mental health condition or a ‘serious’ level of challenging behaviour can change in a moment, and can quickly become a crisis, leaving parents and young people, struggling to cope.

Also, another argument for the benefit of providing intervention and support before crisis point is reached, is the huge cost (both financial and emotional) of managing a young person in inpatient services. There is a national shortage of adolescent beds throughout the country and young people often have to be accommodated in units many miles from home. By this point, things may have got so bad for them that they are self-harming, presenting with extremely challenging behaviour or are even suicidal.

Once in hospital, there is also no guarantee that they will be lucky enough to be treated by staff who understand Autism or who have the expertise to provide the modified intervention approaches needed by young people on the Autistic Spectrum. On top of this, once discharged from hospital, it can be very difficult to arrange follow-up support.

So when professionals (as cited in the article by Tracy Elliot entitled ‘Why timely diagnosis of autism is important’ – cerebra.org.uk ) state that reducing waiting times for Autism diagnosis may not be a ‘priority’ for the NHS, this seems to be extremely short sighted. Surely ensuring that children and young people are assessed and diagnosed in a timely manner would ultimately save the NHS huge amounts of money? In addition, it would also save young people and their families from enormous emotional upset and confusion. The sooner that families know what they are dealing with, the more likely they are to use the right strategies and the young people themselves will know that they are not ‘odd’ or ‘weird’.

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Finally, I cover missed Autism and PDA diagnoses in my book titled “A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support” below:

a guide to mental health issues in girls and young women on the autism spectrum book cover

A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support

by Dr Judy Eaton

This book addresses the specific mental health needs of girls and young women with autism spectrum disorder (ASD). Looking at the ways autism presents differently in girls than in boys, and the mental health conditions that occur most frequently in girls with ASD, this is the essential guide for clinicians and educators on tailoring interventions and support to meet girls’ needs.

Describing the current assessment process for autism diagnosis, the book explains why girls are under- or mis-diagnosed, leading to later mental health issues. It outlines the types of intervention that are particularly helpful for working with girls to reduce anxiety, improve social interaction skills, and manage self-harm. The book also covers how to manage eating disorders and feeding difficulties, focusing on working with girls with sensory processing difficulties. There is advice on how to deal with the emotional impact on parents, carers and families, and the challenges they face when negotiating appropriate psychological and educational support.

Learn More
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Supporting the child with PDA in the classroom – Part Two

by Dr Judy Eaton31/01/2017 Blog2 comments
The second part of this article is aimed at both parents of children on the Autistic Spectrum, and those working with them in a school environment, and examines the impact of the various stresses of the school day for these young people, but also for those who have the job of supporting them, particularly teachers and teaching assistants.
First from the point of view of the young people.  We immediately come straight back to anxiety.  It is important to note that the level of anxiety for some of these children goes way beyond the everyday anxiety we all experience from time to time.  Imagine the worst you have ever felt – that important job interview, waiting for exam results or medical test results or that meeting with the boss which is not going to go well.  This is what these children can feel like EVERY SINGLE DAY.  Think how you felt in that situation, the thumping heart rate, the sick feeling in the stomach and, more importantly, that desire to run away somewhere safe and get away from the situation.  Imagine feeling like that every time you think about going to school.  On top of that, imagine that every day you know, at some level, that it is socially unacceptable to show this level of anxiety so you hold it all in – all day, every day.  Sometimes you may not manage this and you will end up ‘losing it’ over something apparently trivial (haven’t we all done this at some point?) but also imagine that you are not good at noticing when you are getting to that point, so your explosion of anger and frustration takes you (and everyone else) by surprise.  At this point, someone helpfully tries to get you out of the room so that you and the other children are safe.  Many children on the Autistic spectrum will have quite significant sensory processing issues, so being held or forcibly moved to another room will be almost unbearable.
Add social difficulties, rigid thinking and possible learning challenges into the mix and it is hardly surprising that so many children on the Autistic Spectrum struggle at school.
However, it is not only the young people who find this difficult.  Many teachers report feeling helpless and not being sure what to do for the best when a young person is clearly distressed, but at the same time causing havoc in the classroom.  Even those who do not visibly show their distress can inadvertently cause disruption, fidgeting, skin picking, interrupting, getting in and out of their chair, refusing to do certain pieces of work etc.
The answer is often to allocate a specific teaching assistant to support a particular child.  This can be a very difficult job and it is easy to feel disheartened.  With many children, particularly those with PDA, you can feel that, at last, you have made a breakthrough – the child you are working with appears to settle and be doing better, then suddenly, it all goes horribly wrong and you are back to square one.  In your darker moments, you may even feel that the child is deliberately sabotaging your efforts.  It does not help if you have been physically punched or kicked or been screamed or spat at by a highly distressed child.  It is hard not to take this personally.

‘Projection’ is a psychological term used to describe how a child can ‘project’ all their anger, fear and frustration onto you …

One issue which is often overlooked is that of burnout.  Health professionals have regular supervision (a space in which to discuss with a colleague or manager how a certain situation, child or family has made you feel).  ‘Projection’ is a psychological term used to describe how a child can ‘project’ all their anger, fear and frustration onto you and make you feel useless and bad at your job.
Without that space to be able to discuss how a situation has made you feel, it is not long before people start to doubt themselves and feel burned out.  Also, working with a child with Autism (and even more so with PDA) can be physically and mentally draining.  You will pick up on their anxiety levels (even if the signs are not obvious) and may feel like you are ‘walking on eggshells’ trying to avoid at all costs, saying or suggesting something which will lead to an outburst.  Regular breaks and, if possible, rotating the time spent with one child with someone else can ease this feeling somewhat.
Of course, all of the above not only applies to teachers and teaching assistants, but also to those parents who are home educating their children.  Most find that when their child is away from the situation they found so stressful, they tend to settle somewhat.  This does not mean that the stress for parents or the potential for burnout is any less.  Many parents still report the feeling of ‘walking on eggshells’.  There is no easy solution to this.  Within a school setting, it may be possible to rotate working with a particular child and take a break.  For many parents this is not an option.
I suggest the overall message of this article is the need to appreciate the effort involved in supporting a young person with high anxiety levels.  It is not just a case of providing clear boundaries, or adopting a consistent approach which is the advice given to many parents (and teachers) struggling to manage challenging behaviour.  What is needed is a sympathetic and joined up approach which aims to understand the underlying challenges for these children.
If you missed part one of this article, click here to read more.
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Supporting the child with PDA in the classroom – Part One

by Dr Judy Eaton15/01/2017 Blog1 comment
The previous two articles have touched upon the challenges faced by parents when their children ‘mask’ or hide their difficulties in the classroom.  In the course of assessments and therapy with families, many parents have reported feeling blamed and judged when it appears that whatever they seem to try with their children does not work, whereas at school they perhaps behave like the model child.
For many children on the Autistic Spectrum, though, this is far from the case. For some parents that feeling of dread when they receive the phone call from school or the teacher comes to find them at the school gate to talk about their child’s behaviour, is all too frequent.  It impacts upon their self-esteem, their confidence as parents and ultimately on their ability to hold down a job – how many employers are able to be sympathetic and that flexible?
A high number of children on the Autistic Spectrum, particularly those with PDA, will be temporarily (and sometimes permanently) excluded from school. To be fair, if the child is so distressed that they are putting themselves, or others, in danger as a result of their behaviour, this is probably the only option schools have.
However, all behaviour is a form of communication. Children on the Spectrum who are throwing furniture around or hitting their teachers and peers are not ‘naughty’, they are distressed.  They often do not have the words to express how they are feeling, or the social imagination to predict the consequences of what they are doing.

Everyday demands are often unbearable and they can quickly escalate into full ‘meltdown’.

School staff often feel at a loss to know what to do for the best.  Children with Autism struggle with change and will often find a change of routine, or teacher, unbearably anxiety-provoking, but often with the support of visual timetables and clear structure, many can cope.  Those who appear to experience the greatest difficulty are the children with PDA.  Everyday demands are often unbearable and they can quickly escalate into full ‘meltdown’. This can include screaming, punching, kicking and biting or running out of the class.  Some children might need to be restrained for their own safety which is distressing for both the child and the staff, who even if they have received appropriate training, often feel uncomfortable.
The following strategies may help some of these children to succeed at school. They are taken partly from the National Autism Standards, ‘The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance: Guidelines for Good Practice’, produced by Phil Christie, who was formerly the Director of Children’s Services at the Elizabeth Newson Centre in Nottinghamshire, and partly from advice and guidance from the staff at the Robert Ogden School, a National Autistic Society School in Doncaster who have experienced good outcomes with children with PDA.
Children with a demand avoidant profile tend to under-perform in terms of their potential, due to their anxiety and need for control.  Key issues for any school will be how best to create an environment where they feel comfortable, can be kept on task, and disrupt the other children as little as possible.  This can be tricky as the type of environment and management they need will not be a typical classroom environment for many.  By making changes, it may feel that these children are ‘getting their own way’ and being given privileges the other children are not.  Simply, trying to make them comply is unlikely to work – schools have to work to find a balance and this is often a challenge.  Help for Psychology run courses for both parents and teachers and we are well aware of how hard it can be to accommodate the needs of a very distressed and anxious child. (Full details of our training courses are on our website.)
The guidance states that teachers need to be ‘flexible and adaptable’.  Children with PDA find direct instructions and demands difficult.  Again this can be a challenge if you are a teacher, working within the confines of the National Curriculum with 30 other children in the class.  However, they often can cope if they are provided with options – ‘would you like to do X first or Y?’  The expectation is, of course, that they need to do something but at least giving them a choice can reduce the demand somewhat.

…when suddenly – boom, everything explodes and you are back to square one.

Also, unlike children with more classic forms of Autism, providing lovely visual timetables and schedules are unlikely to be effective for children with PDA. Quite often the anxiety provoked by worrying about what is going to happen leads the child to sabotage the activity rather than deal with those uncomfortable feelings.  This can be very difficult for both parents and teachers to understand, particularly if the activity is something you know they would enjoy, but talk to any adult with PDA and they will confirm that the stress of expectations (both their own and those of other people) can be simply unbearable.  Rewards and positive reinforcement for appropriate behaviour can often provoke the same reaction because if you do well once, the expectation (and therefore the demand) to do the same next time is also a challenge.
Finally for part one of this topic, both parents staff working with children with PDA need to be aware that what works one day may not work the next. Everyone may be congratulating themselves and feeling that they have turned a corner when suddenly – boom, everything explodes and you are back to square one.  Everything depends upon the level of anxiety at any given time.  The less the anxiety, the more co-operative the behaviour, the higher the anxiety, the more likely you are to see challenging behaviour.
Part two of this article will look at ways in which school staff can help to build emotional resilience in children on the Autistic Spectrum, what to look out for in terms of mental health issues, and how to avoid burnout when working one to one with a child with PDA.
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It’s not only girls who can mask

by Dr Judy Eaton30/11/2016 Blog8 comments
Following on from the previous article regarding masking in children on the Autistic spectrum, this article is going to look at boys who mask.  These boys seem to fall into two distinct categories. The first group is those who understand the rules at school and appear to manage the structure of school very well, but who are often struggling socially and academically, and who keep ‘below the radar’ whilst at school.
When teachers and other staff at school report that they are doing well socially and have lots of friends, sometimes they will need to look more closely at the quality of these friendships – is the young person on the periphery of the social group in the playground, looking for an opportunity to join in?  Do they go on ‘play-dates’ and more importantly, are they invited back for a second or third visit?  This can cause stress and anxiety because he will have no idea why this happens or what to do to fix it.
These young people also often have what psychologists refer to as a ‘spiky profile’ in terms of their IQ.  They may be exceptionally good verbally but have much poorer non-verbal skills. This may lead to them being poor at mathematics and/or poor at organising themselves. They may also have difficulties with auditory memory.  Basically, information goes in one ear and out the other without being fully processed, so the young person will not be able to follow an instruction given verbally.  This will more than likely mean that homework instructions will be forgotten.  If you then combine that with poor processing speed (another very common problem for young people with Autism) and the poor child will not even be able to copy information off the board or complete work in time.  It is hardly surprising that this apparently well behaved child becomes angry and stressed in the safety of his own home.  It is important that teaching staff (and parents) recognise that for some children on the spectrum it is not a case of ‘won’t do’ but ‘can’t do’.

This can lead to social and behavioural difficulties and social vulnerability.

The second group of boys who tend to mask their difficulties are those higher functioning boys who appear superficially sociable, but who often end up becoming the class clown or mixing with the wrong type of peers in order to fit in.  Going back a number of years now a well-known Psychiatrist, Digby Tantam, in his book Autism Spectrum Disorders through the lifespan, talked about an ‘Atypical Asperger’s’ profile.  These were young people, usually boys, where the key impairment is in the area of non-verbal interpretation. This leads to a lack of ability to empathise with the perspective of another person, and an inability to see the potential consequences and impact upon others of certain actions.  This can lead to social and behavioural difficulties and social vulnerability.  Atypical Asperger’s syndrome (as described by Digby Tantam) often co-exists with attention deficit hyperactivity disorder (ADHD), or attention deficit disorder (ADD). These boys will often fail at school, with many being excluded or becoming effectively marginalised from the education system by the age of fourteen.

They will often mimic the other boys

Although they often manage to form a number of superficial friendships, they will struggle to maintain these, and often suffer from low self-esteem and poor identity.  This tends to encourage them to either become the class joker (in an attempt to ‘fit in’), or behave in an increasingly outrageous or anti-social manner.  At this point, they often become more aggressive – towards people and objects – and frequently they refuse to obey rules of any kind. This can lead to them mixing with other ‘troublemakers’. However, there continues to be a naivety about this group with them frequently getting caught or scapegoated.
Quite often, when the police or other authority figures are called, these boys are the ones left standing there, looking around when all the others have run off.  They will often mimic the other boys (in terms of clothes, accent or expressions that appear to be ‘cool’). However, they very often get this wrong and, to their peers, they can appear odd or an easy target.
The overriding feature of these boys is likely to be, once again, anxiety.  Although obsessive special interests tend to be less common in this sub-group (often due to co-morbid ADHD), cognitive rigidity is still present and can manifest itself in the inability to see anyone else’s point of view or admit that they may be wrong.  In addition, very literal thinking, and a lack of ability to understand and process ambiguous language and metaphors, leads to frequent misunderstanding and this is often coupled with an inability to ‘move on’ from what they see as ‘injustice’.
I hope this week’s blog has shown that it is not just girls who mask and sometimes Autism in boys can be just as difficult to spot.
In the next article I will be discussing the strategies that schools can use to help manage and support the child with PDA in the school environment – Supporting the child with PDA in the classroom – Part One
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Children who ‘mask’ or ‘camouflage’ their Autism

by Dr Judy Eaton09/11/2016 Blog24 comments
Those who haven’t experienced the frustration of being misunderstood as the parent of a child with Autism can find it hard to believe that the perfectly behaved little girl (and it is usually little girls) who keeps her head down at school and tries really hard to comply and ‘fit in’ with the other children can suddenly change when she comes out of school.  Many parents report that they have barely got out of the school gates before the ‘meltdowns’ start.  Sometimes there is no apparent reason, at other times she may be able to verbalise that the teacher has been mean or that someone has refused to play with her.  For others it may be the realisation that very soon it will be homework time again and once again, they are not sure what they are supposed to do or how to go about it.

I walk into the room and feel like people are looking at me.

Girls in particular can be very good at ‘masking’ their worries and anxieties.  They will smile, laugh and joke with the other children, appear to be getting on with their school work and have lots of friends.  However, the strain of trying to keep this up all day can be huge.  Grown women who are Autistic have explained to me what it feels like.  ‘I walk into the room and feel like people are looking at me’.  ‘I have no idea what to say to people or what they expect from me’. ‘Everyone else seems to know what to do’.  These are adult women, who have had years to learn how to cope and appear ‘normal’ (whatever normal is!).  Imagine how much harder it must be for an eight, nine or ten year old.  Girls’ friendships become much more complex at this age.  What is said is not always what is meant, girls talk behind each other’s backs and make nasty and sarcastic remarks.  For a girl on the Autistic spectrum, this is unbelievably difficult to negotiate.
So many parents report not being believed or being accused of poor parenting when in fact they are trying their best for their children.  It can be difficult to even get an assessment.  Many diagnostic teams are hugely over-stretched and may be forced to rely heavily on reports from schools when reaching a decision to assess a child.  So what happens if the child masks and behaves perfectly at school?  How can parents persuade professionals that there is a genuine difficulty?  Some resort to videoing or recording their children on Smartphones.  I can see why this might be tempting and why parents might feel the need in some way to ‘prove’ that their child has difficulties.  However, imagine how it would feel to be this child?  She is already trying her best to fit in and probably already knows in her heart of hearts that she is ‘different’ to the other children.  Also whilst a parent is busy recording a ‘meltdown’, they are not emotionally or physically able to help their child.

The majority are good, caring, exhausted parents who are trying their best …

What is actually needed is a far better understanding by teachers and health professionals about how Autism presents in girls and the issues of ‘masking’.  If this was more widespread and professionals were able to move away from the male (or more typical) presentation, parents would not feel this need to prove themselves.  On so many occasions it is suggested that rather than the child having difficulties, the problems lie with the parents or the term ‘attachment disorder’ is put into the mix.  Some of the parents I have worked with have even been accused of fabricating their child’s problems.  In all the years I have been working with children on the Spectrum, I can honestly say I have not come in contact with any parent who has deliberately ‘made up’ behavioural symptoms.  The majority are good, caring, exhausted parents who are trying their best to come up with strategies to help their children.  That is not to say that there are not sometimes other explanations for a child’s difficulties.  Family life is hard, things happen within families, people are stressed, modern-day parenting is not easy.  Going right back to the original work which was carried out by Mary Ainsworth looking at attachment, it was noted that only 70% of children have what is referred to as a ‘secure attachment’.  This means that 30% do not.  However, 30% of the population do not have the anxiety and behavioural challenges reported by parents of children on the Spectrum.
Both education and health professionals may need to look again at the research into girls with autism and listen to their stories.  They may need to look beyond a superficial sociability and (apparently) good friendships.  There is certainly a need to look again at how and whether ‘gold standard’ assessment tools such as the ADOS (Autism Diagnostic Observation Schedule) work with girls (and boys) who have learned to ‘mask’ their difficulties.  The ADOS was never intended to be a one-off definitive assessment – it should be used in conjunction with other evidence gathered from a variety of sources.  The long term risks of not helping these children and young people are significant and real – many will go on to have relationship difficulties, problems holding down a job and significant mental health problems in adulthood.  PDA and less obvious forms of Autism are not a new phenomenon – we just need to get better at identifying them early.
a guide to mental health issues in girls and young women on the autism spectrum book cover

A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum: Diagnosis, Intervention and Family Support

by Dr Judy Eaton

This book addresses the specific mental health needs of girls and young women with autism spectrum disorder (ASD). Looking at the ways autism presents differently in girls than in boys, and the mental health conditions that occur most frequently in girls with ASD, this is the essential guide for clinicians and educators on tailoring interventions and support to meet girls’ needs.

Describing the current assessment process for autism diagnosis, the book explains why girls are under- or mis-diagnosed, leading to later mental health issues. It outlines the types of intervention that are particularly helpful for working with girls to reduce anxiety, improve social interaction skills, and manage self-harm. The book also covers how to manage eating disorders and feeding difficulties, focusing on working with girls with sensory processing difficulties. There is advice on how to deal with the emotional impact on parents, carers and families, and the challenges they face when negotiating appropriate psychological and educational support.

Learn More
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