What is Autism, Asperger syndrome & PDA?
A Deeper understanding of Autism, Asperger Syndrome & Pathological Demand Avoidance...
'No two snowflakes are identical,' (Marasu Emoto)
...just like, 'no two people are identical.' Everyone feels different feelings about the same things; hears things differently; understands things differently; thinks different thoughts; has different intentions, likes & dislikes different tastes, perfumes & odours...
This is what makes us ALL special!
and for the educators & clinicians in the world there are different descriptions of people depending on how they behave, move, communicate, interact & respond to the world. This is how autism is described...
Autism is considered to be a lifelong neurological developmental disability that affects how a person makes sense of and relates to the world around them and to other people.
Autistic people are described as having rigid and restricted interests and behaviours; impaired social communication and interaction and sensory challenges which can either be hyper (low) or hypo (high) and a fluctuation between these two from one minute to the next and/or all at once at varying intensities; receiving feedback from all their senses: Auditory (hearing), Kinaesthetic (feeling), Olfactory (smell) and Gustatory (taste).
They are also thought to have impaired 'theory of mind' (TOM) (being unable to 'read' another's thoughts, intentions or actions); have a lack of imagination and empathy.
This description is an objective one, originally described by Keo Kanner and Hans Apserger based on their observations of autistic children's behaviours in the 1930s and it is how autism and Asperger syndrome is diagnosed - on observed behaviours, with the addition of an experienced clinician's clinical expertise.
You can read more on the signs and symptoms of autism and how it is diagnosed here
and
you can click here to hear my radio interview explaining autism and its first signs & symptoms; my experiences as a carer & how this has enriched our family life.
How I prefer to explain autism
What does this mean for therapies and interventions used with autistic people?
So how does this help our understanding of autistic people?
Is Autism a 'Disorder, Condition or an alternative Neuro-development?'
The difference between Autism & Asperger Syndrome
What is Pathological Demand Avoidance (PDA)?
Enable and Empower yourself and your child to be as Independent as possible
Take control over your destiny and create the life you aspire towards and desire
I prefer to explain autism as a word to describe a set of communicating behaviours which are expressing a person’s sensory experience of their world. We all experience our reality of the world through all our senses and our brain filters, deletes and generalizes this sensory information; then we have thoughts about this information and create meanings for it. If we have not developed the ability to understand and use language, we may not have 'word' thoughts about this sensory information and therefore, are simply absorbing and experiencing our world as we all did from the beginning - in the womb and at birth through sensing, receiving the energies, feelings, sounds, smells, tastes, visual sensory information though our body.
This innate sensing is within all of us and is what enables us to 'bond' with others as a baby, have a 'sense' something is different or not quite right. As some of us develop verbal language and more of a connection with our physical environment, our thinking and meanings develop and connect with social etiquette and the expectations of others, we appear to become less connected to our 'sensing,' unless we are 'lucky enough' to be born into a family who nurture and develop this important innate experience of existence. Developing our innate sensing can be done through learning to mediate, pray or any other discipline which encourages exploring and discovering our 'inner spiritual environment' and 'inner self,' our character and identity. This creating a firm 'sense of self and other' yet still a oneness as a 'being,' a spiritual being having an independent physical human experience.
I have experienced that children and adults developing with an 'autistic brain' are still very much 'in-tune' with this innate sensing due to still being at this neuro-developmental stage and level of existence and communicating. This can explain how this is often one way an autistic person communicates - due to their premature development of understanding and using a verbal, written or typed language. This correlates with the many interventions and therapies focussing on the under-development of autistic children 's language, social communication and interaction skills and why the challenges autistic children and adults face with processing sensory information,' has only just recently been accepted as a part of autism and is now included in the new American diagnostic criteria, DSM 5.
What does this mean for therapies and interventions used with autistic people?
Unfortunately, 'sensing' and the body's energies and work in developing these for therapy and intervention is still considered very 'alternative,' 'controversial' and is under valued by most scientific researchers and institutions when described as it is here. I believe this is because of its mysticism and the challenges for 'evidence based scientific proof' and behaviour and psychological interventions are the current 'acceptable' level for scientific and academic autism research. However, if more research was less autistic itself and looked at the bigger picture, it would certainly find more 'scientific evidence' in the disciplines of Quantum Physics, Biology, Chemistry and Neuroscience of the Brain, Gut and Heart as well as the energy frequencies and vibrations in the Chakras, human body fields and in the intentions and beliefs of the human mind.
Interventions such as 'Intensive Interaction,' and techniques such as 'mirroring' and 'getting down to the child's level' to 'get into their world' as in the Sonrise; Hanen; Floor Time, Sensory Integration Therapy and others, for early intervention, are bordering on connecting with the child/adult at a sensing level and in my opinion and experience with my daughter and my clients, we need to go take the next step down to the deeper 'energy' level and work with a child's/adult's subjective experience to make the difference that will make the difference. Third Generation NLP and many other 'Energy' interventions and therapies offer tools which can enable us to access this level of understanding and communicating with the body and four minds (the Head, Heart, Gut & Field minds).
Sadly, very few medical practitioners can accept and practice these types of interventions, therapies and medicines but they are emerging and starting to work with alternative, complimentary practitioners and quantum physics and fMRI are the scientific tools which are already and will increase to provide the 'evidence based proof,' the autism research field and other research fields for other conditions and diseases, mental health, physical health, emotional and spiritual health want. They just need to take that leap of faith as parents do when the answers are not coming from their 'trusted' mainstream practitioners!.
So how does this help our understanding of autistic people?
During 'typical' development, children understand verbal language before they can speak it. Children with autism who later develop speech also understand prior to developing speech. Later they develop the ability to understand words and interpret 'pure' literal meaning and/or understand that some sounds are associated with objects and people (names or labels); and they may move on to develop an understanding of some associations between objects and people interacting at a literal level e.g. pen + paper creates marks on paper when one touches the other or two people making noises at each other creates a connection between them and an 'atmosphere' (which they also sense and even if they cannot understand the language, they can sense what is building up in the 'atmosphere' or energies between these people and around them); and they maybe able to follow clear precise instructions when they hear some but struggle to understand what non-autistic people consider to be 'purposeful meaning and understanding' of the world around them, 'theory of mind' and 'socially acceptable behaviour.' This is mainly because they are sensing raw feedback and have raw experiences without interpreting and are experiencing the world purely as it is - at that moment in time.
'Give me one moment in time when I'm more than I thought I could be...' (Whitney Housten).
I believe, through my experience with my daughter, clients and research that the 'challenges' (according to society) autistic people experience in understanding 'socially acceptable' behaviour and in interacting and communicating with others, is because they continue to be very well connected with their innate sensing abilities and are able to sense their world, people and objects much more effectively than most neurotypical people. This means autistic people sense the incongruence in non-autistic people when they are 'acting and communicating tactfully (and not honestly) in a socially acceptable manner' and this can confuse an autistic person because they do not understand why anyone would 'feel' one way and communicate and 'act' another?
interestingly, Temple Grandin in her book on Unwritten rules of social relationships sections her book into three ' Acts' and an 'Intermission' like in a Play at a Theatre instead of in 'chapters' as most often written - So you could ask the following question...
'Who is living in the 'real' world and who is living in an Act on the stage of the world otherwise known as 'Social Communication, Interaction & Behaviour'?'
After initially concluding all this a while ago, whilst working on one of my workshop's activities, I decided to write to Donna Williams to ask her thoughts about this 'model for understanding autism.' We have been in contact for many years now, since she first started to talk about her subjective experiences of living with autism back in the 1990s. To my surprise (and delight), her reply was that I should read her book, 'Autism and Sensing: The Lost Instinct.' Coincidently, I had ordered this book and another one of her's (Anxiety Exposure) before I had thought of emailing her!
These books describe Donna's subjective experiences of living with an
'autistic brain' and confirm my thoughts which had been created through working with the model of
NLP. I discovered there are also others who also 'buy in' to this 'theory' or
'model' of human development, understanding and way of socially interacting and communicating;
some are connected with living or working with autistic children and adults and some are not (Eden,
2008; Grandin,
2005; Williams,
1998).
Is Autism a 'Disorder, Condition or an alternative Neuro-development?'
Lorna Wing described the varying severities of autism behaviours as being on a spectrum and introduced the label 'Autistic Spectrum Disorder' which means that while all people with an autism diagnosis share certain difficulties and behaviours, their condition will affect them in different ways and to different levels of severity. This is no different to how we are all different in our own unique ways anyway ... it is a spectrum of development...
There are many preferences and opinions on the 'political correctness' of whether autism is a disorder, condition and/or a disability and whether it should be 'treated' or 'fixed' and I believe this depends on your relationship with autism or the person with autism or the autistic person.
I have recently decided that based on my enlightened understandings and experiences, I am going to use the acronym 'ASD' to stand for Autistic Spectrum 'Development,' in preference to the words 'disorder' or 'condition,' and because the brain is capable of developing new pathways until the day we die and most importantly, can be 'nurtured' and 'trained' to develop new pathways, whether your brain is considered to be 'autistic' or not!
There are also varying opinions on how useful a diagnosis or label is for a child or adult and this really depends on how able they are and how autism affects them personally because some services and laws are not accessible to you without a diagnosis and others are.
Also, some people prefer to be called autistic as they feel it is who they are and others prefer to be called a person with autism. I believe all of this is a personal choice for the person, if they are able to communicate this and the parent carers whilst the child or adult is unable to make that decision. However you wish to refer to your relationship with autism, this should be respected, whether you call yourself autistic, a person with autism or describe yourself in any other way, it is what is important to you. If you are sensitive about this issue, it can be very useful to make your choice known to others so they will not unintentionally offend you.
What's different between autistic behaviours and those we observe in many non-autistic people 'acting out' or having a 'melt down?'
I wonder how many of us would communicate our desires and needs in an 'appropriate and socially acceptable' way if we had all these challenges and difficulties with understanding and communicating with this 'socially ruled' world? In Fact... how do we behave now when our 'typically developing' brain is experiencing 'overload' - tired, irritable, head full of thoughts, problems and pressures from our social world and...
...we know what we need and can choose to do to alleviate and calm ourselves from the confusion and pain...but don't always do... and we can verbally communicate this but don't?
How often have you behaved in an 'unacceptably appropriate way because you couldn't express yourself in words?...
but what if you didn't have this ability and options at all?...
...Imagine how it would feel, if you didn't know how to help yourself and everyone around you didn't understand your needs or desires and so couldn't help you and they either shouted at you or looked at you awkwardly whilst walking away or reacting to you?
Can you imagine how life is for someone experiencing the world with all these specific challenges: with the volume, brightness, smell, taste and touch turned up on full volume and beyond ...
'Coloured Candy Floss Sensory Overload'
...or turned down so low that very little sensory information is being processed and you wonder whether you even exist?...and moving your hands and body in rapid repetitive ways enables you to feel your presence in space and time; whilst those around you are either adding more auditory, visual, kinesthetic, gustatory and olfactory stimulating information which overloads your mind for processing any of it; or someone is trying to stop you moving, flapping, stimming for whatever reasons, which halts the stimulus these behaviours are creating for you feel that you do exist?...
So, maybe you can ask yourself this?...
How would I communicate my needs (let alone my desires!) if I had no universal way or understanding of how to communicate a part from through my behaviour? How would I experience my world then? How would I make sense of what I can see? How would I make sense of what I hear but cannot process or understand any or all of the words that vibrate in my ears before more are bombarding in to add to this chaos? How would I communicate when I am in pain? How would I communicate the taste of something repulses me? How would I communicate I feel nausea when I smell something that is overwhelmingly repulsive or intense to my senses?
How would I communicate that all these mixed up together are affecting me at once right now?!
When you want to explore and discover more about autism and how you can learn to understand, communicate and make the changes you need to make to make a difference to your loved one with these autism challenges or you are experiencing life this way personally yourself (whether you have a diagnosis or not!) and you want to learn how to be the best you can be and recognise you do have aspirations and you do want to achieve in your life... your first step forward is to,
A BBC3 Video:
"What's your special ability?" And other Things Not to Say to an Autistic Person
The difference between Autism & Asperger Syndrome
Some children and adults will have a diagnosis considered to be a more severe form of autism such as Kanners or classic autism whilst others may have a diagnosis of a generally considered more milder form such as Asperger Syndrome (AS) or High Functioning Autism (HFA).
The difference between AS and HFA depends on whether the child had delayed speech before the age of three according to the assessment criteria in the diagnostic manuals and on the measurement of their IQ (Intelligence Quotient).
These descriptions and labels are only there to help identify children and adults with these challenges for research purposes and for them to have access to State Benefits, Local Authority Education, Health and Social Care provision and any other *voluntary, independent and private help, advise, support, coaching, mentoring and services they need to achieve becoming the best they can be; lead fulfilling lives and become as independent as possible and...
...now there is legislation in place to ensure this can happen!
*not all services and organisation require you to have a diagnosis for you to access their help and support.
Asperger syndrome is considered to be a form of autism. People with Asperger syndrome are often of average or above average intelligence. They have fewer problems with speech but may still have difficulties with understanding and processing language, sensory stimuli, social communication and interaction and therefore, forming relationships.
Asperger syndrome is diagnosed after the age of three because diagnostic criteria requires there to have been no language development delay and is diagnosed often when the child or adult is older because their difficulties in forming and keeping relationships may not be recognised earlier and until they become challenging for the person and start affecting their quality of social learning, communicating, interacting and everyday life. People with Asperger syndrome have repetitive restricted interests, challenges with socially communicating and interacting and sensory processing difficulties.
Asperger syndrome has been removed from one of the diagnostic manuals (DSM-5: see below) and will be described and diagnosed by diagnostic clinicians as an 'Autism Spectrum Disorder' (ASD) in future. Asperger syndrome per se, is no longer considered a 'disorder.'
(Pathological Demand Avoidance)
Pathological Demand Avoidance (PDA) was originally noticed to be a subtype of the autism spectrum by Professor Elizabeth Newson in the 1980s. She was working at a Child Development Research Unit at Nottingham University when she and her colleagues felt increasingly dissatisfied with using the diagnostic description of 'atypical autism' which was being used at that time as a diagnosis for some children whose behaviours didn't quite 'fit' into the 'typical' diagnostic descriptions for Autism or Asperger syndrome. In the USA, they were using the description of PDD-NOS (Pervasive Development Disorder - Not Otherwise Specified, instead of 'atypical autism.'
Professor Newspon, felt that telling a parent that their child's behaviour was not 'typcal' of a specific condition or one that was'not specified,' was not helpful for the parents or those professionals working with them. Additionally, she started to notice that these children all had something in common with each other, they all displayed,
'an obsessional avoidance of the ordinary demands of every day life.' (Christie et. al., 2012)
Through a series of research and publications, using groups of up to 150 children, Professor Newson and her team, refined the definition of PDA and she went on to propose that PDA should be recognised as a separate specific diagnosis to give a more specific identity to this group of children; especially considering all the children previously diagnosed with atypical autism or PDD - NOS.
Sadly, this has yet to happen and PDA is still awaiting its own identity under the umbrella of 'Pervasive Development Disorders' in the main diagnostic criterias. Currently the National Autistic Society recognise PDA as a 'behaviour profile' within the autism spectrum (Christy, Duncan, Fidler & Healy, 2012; NAS, 2017).
Back in the 1990s, I visited London to attend a lecture by Professor Newson, to learn more about it and to see how it might fit my daughter as a diagnosis. I still have the notes away in my archives. However, PDA has recently come to my attention again whilst working with parents and adult clients of whom, I felt their behaviours were not really conducive with their diagnosis of ASD or Asperger syndrome. When I thought about the lecture I attended, I ordered the above book and on reading more about PDA, the penny dropped! This was why my client's diagnosis did not make sense!
The defining diagnostic criteria for PDA by Professor Newson in 2003, is as follows:
1. Passive early history in the first year
2. Continues to resist and avoid ordinary demands of life...strategies of avoidance are essentially socially manipulative.
3. Surface sociability, but apparent lack of sense of social identity, pride or shame.
4. Lability of mood, impulsive, led by need to control.
5. Comfortable in role play and pretending
6. Language delay, seems the result of passivity: good degree of catch up.
7. Obsessive behaviour.
8. Neurological involvement.
'A key feature of PDA is that the child has suffient social understanding and empathy, to be socially manipulative in their endeavours and will often adapt strategies to the person making the demand.'
'Parent's often will remark, 'If only they would put half the effort into doing what it was I wanted as they do to getting out of it!''
(Christie, et.al., 2012)
1. Passive early histroy in the first year: Newson found that many parents described their child as passive or placid in their first year of their life. Nearly half of the children were said not to reach for toys or to drop them when they were offered. As the child developed and more became expected of them, they would become more resistant. However, this cannot be considered an essential characteristic for this specific subtype of children because some are resistant from the start.
2. Continues to resist and avoid ordinary demands of life...strategies of avoidance are essentially socially manipulative: The behaviours of these children are best understood as an anxiety-driven need to be in control and avoid other people's demands and expectations and this is very challenging for parents and those working with them. Often the child can be 'behaving well' at school and not be causing any disruption or challenging behaviour but once home, their efforts needed of doing that will explode into continual vocalisations and conversational roundabouts in order to avoid any form of 'demand,' suggestion or request however worded; manipulating situations, their parents, siblings and their environment in order to feel in control.
Even carefully considered and indirect suggestions are often a trigger for an explosive, sometimes aggressive and violent episode of behaviour which can last until and beyond bedtime and through the night.
Everything has to be their idea.
3. Surface sociability, but apparent lack of sense of social identity, pride or shame: These children appear to have a good understanding and use of social interactions, niceties, empathy and charm, These characteristics as well as good eye contact and body language, are the features shared by the children in this subgroup that Professor Newson first observed as being different to typical ASD. This degree of empathy was on an intellectual level and not at emotional one. In other words,' learn't behaviour,' as a logical 'cause and effect' response. Emotional intellegence and regulation is an area of development in which these children show a need for additional support.
Children with PDA fail to understand the social boundaries between children and adults, expecting to be spoken to and treated as an adult. They will understand rules and preach them to other children and adults but not recognise that these rules also apply to them! Acting as an adult, a policeman, teacher, or any other authorative person to be 'in charge.'
These children also have problems accepting any social obligations and taking responsibility for their actions, always explaining how something is someone else's or something else's faught.
This challenges children in creating friendships and successful relationships. These children often want friends and don't understand how their behaviours cause a barrier to making them. They can often be found with younger children who will more likely accept them as the one 'in charge,' the 'Queen bee' or the 'Alpha male' in the group.
4. Lability of mood, impulsive, led by need to control: Children with PDA can switch very suddenly from one mood to the next, just like Jekyll and Hyde. The moods can switch so fast that the child can be perceived as acting. This is the disregulation of the child's emotions and is one of the characteristics Professor Newson found distinguished 68% of the children with PDA from the groups with ASD or Apserger syndrome. This rapid and often unexpected change in moods, along with the child's overall inconsistency of behaviour is what makes children with PDA very exhausting and wearing to be with.
5. Comfortable in role play and pretending: This criteria is very untypical of children with autism but for children with PDA, it is one of their main characteristics, often acting like an alternative character for very long periods of times. They do not use echolalia, this is 'real' acting! The rest of the family have to conform and go along with this enactment if they want to have any chance of communicating or interacting with them at all. In Professor Newson's studies, 68% of the children who engaged in role play, were reported to be confused with the difference between reality and pretence at times. These 'actresses' and 'actors' will even incorporate role play into their strategies for avoiding demands and enabling them to feel in control. Some children develop very strong fascinations within their pretend play and a few can be followed through in an obssessive persistence for which they find it difficult to break out of by themselves.
6. Language delay, seems the result of passivity: good degree of catch up: Children with PDA can often present with language delay but this can depend on their intellectual ability. Profesor Newson found that initial speech delay can also be part of their early passivity but by the age of six, 90% of the children she studied had caught up with their peer appropriate speech and language development.
These children also show more fluent use of eye contact (except when avoiding demands) and conversational timing than one would see in a child more typically diagnosed on the autism spectrum.
Additionally, since the Newson Centre has been open, it has come to light that whilst children with PDA develop very fluent expressive language, it is the case that some do not have such a good understanding of spoken language but this is not because they they do not have the grammatical knowledge, it is because they have difficulty with their auditory processing. This means that they do not hear all the words that are spoken because, their processing of the the sounds from the ear to the brain is slower and by the time they have processed the first few words, the others have been spoken and are 'lost.' This can cause misunderstanding of spoken conversation and increase anxiety further,
7. Obsessive behaviour: whilst this characteristic along with 'special interests' is also a characteristic of autism and Apserger syndrome, The obsessions, fixations and special interests are more likely to be social ones and will be around specific adults or children. Often this means that they will only do something if the child or person they are obsessed with does it and will want to copy everything that person/child does and have the same things as them.
8. Neurological involvement: Prof. Newson found some neurological connections to PDA behaviours in her studies but stated how this was under researched and needs more investigation and this is still the case according to Christie et. al, 2012. The studies that were completed and showed some neurological connections, reported that crawling was late or absent in more than half of the children and milestones such as the age of sitting were delayed in a significant minority. Clumsiness and physical awkwardness were quite common as was 'flitting' attention when demands were being made.
This explains really clearly why interventions used for children with ASD, such as behaviour charts and reward systems do not work with a child with PDA unless, they are able to feel it's their idea and they are in ccntrol of the intervention or therapy. However, other interventions and therapies that use a more indirect approach are more likely to be successful and teaching these to parents as I am through my services, could be the best way forward.
Enable and Empower yourself and your child to be as Independent as possible...
Some people on the autism spectrum are able to live completely independent lives and others who may also have accompanying learning difficulties and/or other medical conditions and disabilities may need a lifetime of specialist support.
However, I know there are many ways to enable and empower children and adults with autism and their families at any stage of their development and life time and how this can and does create more choices and opportunities for them to transform the child/adult and their whole family into becoming the best they can be and live happy, fulfilling lives. I have experienced working with adults who have never verbally communicated or written about their life to another person and believed their life is 'boring' but when asked, 'according to whom?' and 'compared to who else's?' have realised and been discovered as being a very talented and able person... One such person is my client who's testimonial you can read here...
When you book any session with me, you will have my full attention, I will be using all my education, mentoring and advocating skills to inform and mentor you and then with your permission and where appropriate, follow through using my NLP Life Coaching skills to enable and empower you to explore and discover what your well-considered and achievable life outcomes are, prioritize them and discover how you can achieve them!
How cool does this sound to you? I am looking forward to hearing all about your aspirations and working with you to develop the skills you need and create the lifestyle you desire...
Diagnostic Criteria
There are two diagnostic manuals used to help professionals diagnose a condition on the Autistic Spectrum; the ICD-10 (World Health Organisation) and the DSM-IV-TR (Diagnostic Statistical Manual) (American Psychiatric Association). As mentioned above he DSM has recently been reviewed and updated and Asperger syndrome now comes under the diagnosic description of Autism Spectrum Disorder (ASD).
The group of conditions diagnosed on the autistic spectrum are known as Pervasive Development Disorders (PDD) and their names vary between the two diagnostic manuals and include:
Childhood, Classic or Kanner's Autism
Atypical Autism (atypical in age of onset, symptomatology or BOTH)
Retts Syndrome
Other Childhood Disintegrative Disorder
Overactive Disorder associated with Mental Retardation and Stereotyped Movements
Asperger Syndrome
Pervasive Development Disorder - Not Otherwise Specified (PDD-NOS) or (unspecified)
From the wide variety of descriptions in this list (some having a specific genetic cause) it can be seen and better understood why some children and adults may have a better chance to achieve different potential development and independent living to others and amplifies the need for an individualised person-centred, holistic, naturalistic approach to enable everyone to reach their personal best, achieve their full potential and live the happiest life possible available to and within them and research is now showing how amazing the brain is in its ability to regenerate new neural pathways when consistent physical and mental exercises are performed and how this can enable the body to develop and retain new skills and heal itself! Click here to read what can help improve long term outcomes for the child/adults and the whole family...
If you would like to learn more about you can take control over your destiny and create the life you aspire and desire, please look at my services:
PERSONAL COACHING; MENTORING; ADVOCACY; PUBLIC
SPEAKING; LECTURES & WORKSHOPS
