A blog that explores the concept of PDA as well as offering an insight into life with a child with PDA

Posts tagged ‘Autism spectrum’

The Evidence that PDA is Real, Knowledge is Power!

This information was originally collated by myself and Tom Crellin in order to assist a parent who was trying to seek validation with the professionals assessing her child that Pathological Demand Avoidance was a very real and valid diagnosis.  I have replicated this as a blog post in the hope that it can help other parents in their journey.

In the 1980’s Professor Elizabeth Newson coined the phrase PDA to describe a group of children who all displayed a unique cluster of symptoms.  During this period Professor Newson led the ‘Child Development Research Unit’ at Nottingham University.  The cases that were referred to her were often complex and had an unusual developmental profile.  The cases would often remind the referring clinician of a child with Autism or Asperger’s Syndrome but they didn’t quite fit this diagnostic profile in that they would often present with an atypical profile.  (‘Understanding PDA in Children’ P Christie, R Fidler, M Duncan & Z Healy 2011)

These children had better imaginative play and better social and communication skills (at a surface level) than you would typically expect to see in children with a typical presentation of ASC.  Indeed they had enough social insight and sociability to be able to manipulate others in their avoidance of demands and in order to remain in control of their immediate environment.  They also all shared what was to become the defining feature of PDA ‘an obsessive need to avoid the demands of others’ (E Newson, K Le Maréchal and C David 2003).

In 2003 the first peer reviewed paper on PDA was published and in this paper Newson proposed that PDA be recognised as a separate sub group within the family of ‘Pervasive Developmental Disorders’ (E Newson, K Le Maréchal and C David 2003).  Pervasive Development Disorder (PDD) was the recognised category used at that time by the current classification diagnostic manuals DSMVI and ICD10.  (‘Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty – Foreword and Introduction, Christie 2014).

Since the publication of Newson’s paper terminology has changed and the word Autism Spectrum Disorder/Condition has become synonymous with the term PDD.  The National Autism Plan for Children, also published in 2003, talked about the term ASD /ASC ‘broadly coinciding with the term Pervasive Developmental Disorder’.  The more recently published NICE Guidelines on Autism Spectrum Disorders (2011) described the two terms as being ‘synonymous’.  The importance of this is that PDA is best understood as being part of the autism spectrum, or one of the autism spectrum conditions (‘Pathological Demand Avoidance Syndrome – My Daughter is Not Naughty – Foreword and Introduction, Christie 2014).

Although PDA is not currently specifically described in either of the current diagnostic manuals this does not mean that a clinician cannot diagnose this condition based on their own clinical judgment and expertise.  Indeed many NHS trusts have no specific policy with regard to the diagnosis of PDA and in-fact advocate that their clinicians are free to diagnose PDA based on their own clinical judgment.  This information has being gleaned by Tom Crellin following his request for information regarding the diagnosis of PDA from many NHS trusts via the freedom of information act.  https://www.whatdotheyknow.com/search/Tom%20Crellin/all

Increasingly more and more NHS local authorities are diagnosing PDA and this has become very much a postcode lottery.  Therefore a clinician saying that PDA is not accepted by the NHS as a real and accepted diagnosis is inaccurate because many of them now do diagnose PDA.  It is often down to the individual clinician andl is not down to an NHS directive.

Dr Judith Gould speaking at the PDA conference in November 2011 emphasised that “Diagnostically the PDA sub-group is recognisable and has implications for management and support” and went on to state at the PDA Conference in Cardiff 2014 that the absence of PDA from a diagnostic manual should not be a sufficient reason for clinicians to not diagnose PDA.

The importance of PDA being highlighted and diagnosed is to better understand the child, what drives the behaviour and to signpost others to the correct and most successful handling strategies for PDA which are often different than those traditionally used for individuals with ASC.  Therefore if a child has the profile as described in the diagnostic criteria for PDA then a diagnosis of ASD whose profile most closely fits that of PDA would be imperative for the long term management and understanding of that individual. This point is emphasised and discussed by Christie (2007) in ‘The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome, Guidelines for Good Practice; Good Autism Practice Journal’.
http://www.pdasociety.org.uk/files/download/b7d5fcf5408a063

The following research helped to establish the differences and the similarities between children who fitted a typical profile of an autism spectrum condition (ASC), children who fitted a typical profile of conduct problems e.g. Oppositional Defiant Disorder (ODD) and those who fitted the Pathological Demand Avoidance (PDA) profile. Although behaviour overlaps were found between the PDA group and the ASC and CP group there were also distinct differences found.
http://m.aut.sagepub.com/content/early/2014/04/29/1362361313481861.full.pdf
O’Nions E, Viding E, Greven CU, Ronald A & Happé F (2013) Pathological Demand Avoidance (PDA): exploring the behavioural profile; Autism: The International Journal of Research and Practice.

ASDvPDA1

The similarities and differences between a typical ASC profile and the profile of a child with PDA

ODDvPDA1

The similarities and differences between a child with Conduct Disorder i.e. Oppositional Defiant Disorder (ODD) and those with a PDA profile.

The ‘Extreme Demand Avoidance Questionnaire (EDAQ)’ which resulted from research conducted by O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F http://www.ncbi.nlm.nih.gov/pubmed/24117718,  is a screening tool to highlight the possibility of a child having PDA http://www.pdasociety.org.uk/resources/extreme-demand-avoidance-questionnaire

The Disco diagnostic tool, devised by Gould and Wing, has PDA specific questions included to indicate if a child may have ASD sub group PDA rather than a typical presentation of ASC.
At the Lorna Wing Centre, the Diagnostic Interview for Social and Communication Disorders (DISCO) is used as part of the diagnostic process.
The DISCO has over 500 questions relating to development and untypical behaviours.
Seventeen questions relate to the behaviour described by Professor Newson and her team.
DISCO
• Unusually quiet and passive in infancy
• Clumsy in gross movements
• Communicates through doll, puppet, toy animal etc
• Lacks awareness of age group, social hierarchy etc
• Rapid inexplicable changes from loving to aggression
• Uses peers as ‘mechanical aids’, bossy and domineering
• Repetitive role play – lives the part, not usual pretence
• Hands seem limp and weak for unwelcome tasks
• Repetitive questioning
• Obsessed with a person, real or fiction
• Blames others for own misdeeds
• Harasses another person – may like or dislike them
• Lack of cooperation, strongly resists
• Difficulties with others, tease, bully, refuse to take turns, makes trouble
• Socially manipulative behaviour to avoid demands
• Socially shocking behaviour with deliberate intent
• Lies, cheats, steals, fantasises, causing distress to others

(Judith Gould PDA Conference London 2011)

Leading professionals in the field of Autism appear to be in agreement that the PDA subgroup is definable and that this has implications for the successful management of the child.  Unfortunately many clinicians who are not at the cutting edge of new research and developments are often unaware of recent advances and changes in terminology.  I hope that this post may give you knowledge in order to successfully fight for your child and for him or her to receive the correct diagnosis and management because this is key to the long term prognosis for these children.

For more information about PDA please visit http://www.pdaresource.com/ and the http://www.pdasociety.org.uk/

If you require a friendly and non judgmental parent support group then please apply to join https://www.facebook.com/groups/pdaglobal/

A New Year and A Fresh Start

The previous 12 months have been a roller coaster of events and emotions which have been detailed here, in my blog, from April of 2013.  In the last 12 months we have come a huge way on our journey of discovery which only really started when we abandoned formal education.  In brief here is a very short timeline of events for any of my new followers.

The Past Twelve Months

  • September 2012 we were fighting for a residential placement at a specialist school because I just could not go on any longer.  Battered, bruised and broken I really just couldn’t go on any longer with the prospect of looking after my daughter.  I was snappy, short-tempered and disengaged from her as she was with me.  Together we were spiraling out of control on a path of destruction, she needed more than I could offer and I needed to restore depleted emotional and physical energy levels.
  • We were granted funding for the residential placement but it never really got off the ground.  Moll attended as a day placement only but following the honeymoon period she began school refusing again.
  • The honeymoon period had, to some extent recharged my batteries and so now I had a choice.  I could force her to stay as a residential pupil or remove her from school and give it one more crack at home.
  • I chose the latter and I have never looked back.  Simply removing the external pressure of school attendance, for ever, really lowered her anxiety levels.
  • We attempted home education, which failed, she withdrew completely from me and all of her family.
  • I then adopted a philosophy of ‘autonomous learning’ which is basically child led and not instigated by the parent.  Eventually the guard that had come up to stop any structured learning gradually came down.
  • Relationships were repaired and rebuilt.
  • She began opening up to me, sharing heartbreaking details about how she felt and viewed herself.  We worked together to build and restore her own confidence, sense of well-being and acceptance of her differences.
  • Social exposure had left her anxieties so high that she had become unable to leave the house.
  • We worked on this very slowly and at her own pace.  She is now able to go out if and when she wants to.
  • She now attends a weekly dance class and even performed in a show prior to christmas, enjoys the cinema, makes the occasional trip to the shops and we are hoping to further build on this.
  • Her sleep issues are a cycle that we just run with.  Weeks may be spent with her sleeping for the majority of the day and awake all night.  Without pressure and under her own control she will reverse this situation and return to normal sleeping patters, we then capitalize on the times when she is alert and awake in the day.
  • She is happy, bouncy and fun, this is singularly the most important change for us.
  • Meltdowns are Nil.
  • Impulsive outbursts still occur but are verbal in nature rather than violent.  Apologies are usually forthcoming afterwards, often with an explanation. “I’m sorry I snapped but I’m really stressed today.”
  • Formal Education is the least of my worries and is bottom on my list of priorities.  An individual can learn, at any time in life, about history, geography, mathematics and so on.
  • The most important education for Mollie is that of self acceptance, awareness, learning how to cope with socializing on a small level and feeling loved.

There is a saying that parents of children with PDA often refer to as ‘pick your battles’ however I have recently amended this philosophy in my household to “pick your objectives but don’t turn them into battles”.

Our objectives last year were the following

  1. Reduce Meltdowns achieved
  2. Reduce Verbal Outbursts achieved
  3. Improve my relationship with my daughter achieved
  4. Improve her interaction within the family achieved
  5. Improve her self-esteem achieved
  6. Reduce anxiety levels so that she was reachable achieved

It is my belief that we achieved the above by removing the anxiety and stress associated with school in conjunction with her deciding not to play outside with other children.  The only boundaries that we have in our home are for Mollie to not hurt others or hurt herself and to not cause irreparable destruction to property E.G. windows being smashed and so on.  With anxiety reduced right down we could then work on the areas that we had prioritized as important.  However this was done very carefully, discreetly and respectfully.  If I thought that Mollie was spending too much time on her computer, which she was, rather than choosing this as a battle and imposing screen time boundaries we tried a softer approach to ultimately achieve our aim.  I would try to tempt her off the computer by sitting close to her engaging in activities that I knew she may be likely to want to join in.  Gradually and overtime she began to choose to leave the computer screen in order to take part in other activities.  Objective achieved with no meltdown, no loss of control for Mollie and no battle for power which could have destroyed our newly built bridges.

This is how we now approach everything in our home.  With full control over her own life, rather than running wild, she has actually become extremely manageable by setting her own boundaries.  I still have a child with very complex needs and behaviour but, by approaching things in a completely alternative manner, I no longer consider myself to have a child with challenging behaviour. This is by no means easy and takes a lot of patience and self-discipline, as a parent, to NOT just let your child get on with their own thing so that you can have an easy life.  Even achieving the most basic of objectives like teeth brushing, hair brushing, interacting with the family, bathing (weekly objective), attending her weekly dance class, trying to keep her sleep cycle in some sort of sync and going to the cinema requires dedication, gentle persistence, careful persuasion and huge amounts of time.  It is never a done job it is always work in progress because without the attentiveness of my husband and I she would quickly slip back.   The progress that we have made with Mollie needs consistent and continual intervention.

What I Hope To Achieve In The Next Twelve Months

In the next twelve months we hope to build on and improve the progress that we have steadily made.  I am hoping that the use of medication will help us to achieve even more because I do feel that we have possibly achieved as much as we can by psychological intervention alone.  Mollie is now taking, without any side effects so far, fluoxetine.  We are hoping that by taking the edge of her still high anxiety levels when she is out that this may help to assist her to engage in more activities outside of the home.  She has scored highly on the ‘Connor’s Questionnaire’ for ADHD and so this is currently being explored as a possible co-morbid condition.  Indeed one of the biggest issues we have in trying to get Mollie learn anything, even through play, is keeping her focused and concentrated.  She wants to play ‘Monopoly’ and ‘Children’s Trivial Pursuit’ both of which would be educational, but she simply cannot hold her attention long enough to play it for more than a few minutes.

This years objectives

  1. To continue to build and gently assist Mollie to engage in more activities outside of the home.  We are hoping that Fluoxetine and possibly medication for ADHD (although this is still under discussion) may assist her in these areas.  Her impulsive reactions to things are one of the reasons that she finds going out so difficult because she has no control over her own behaviour.  Needing full control in order to feel safe while simultaneously having no control over her own reactions must be a terrible paradox for Mollie.  As Julie Daunt said to me “ADHD and PDA are cruel companions” Julia is an adult who is diagnosed with both conditions and so she speaks from first hand experience.
  2. To continue with the current level of support that we offer her in order to maintain the progress that was made last year.
  3. To improve on the current level of interaction that she has with the family which may be helped by improving her ability to focus and concentrate.
  4. To work with Mollie on the areas of socializing that cause her the most stress and anxiety.  Hopefully we can develop strategies for her and teach her the areas of socializing that confuse her.  This is easier said than done because her demand avoidance makes any sort of teaching or explaining very difficult indeed.  It is a question of carefully choosing your moments for such interaction i.e. when she is at her most relaxed and happy to divulge her innermost difficulties and fears.  Opportunities for this are few and far between and so you really do have to grasp them as and when you can.
  5. Mollie already learns a lot simply by being allowed to follow her own areas of interest.  Her reading and writing has improved immensely by playing on computer games as has her general knowledge.  This is an area that generally tends to take care of itself but it doesn’t hurt to give it a helping hand by ensuring that I stay on top of things and make sure that she has loads of appropriate material at her disposal.
  6. To help Mollie join a local acting group which she has shown interest in.
  7. Ultimately for her to have at least one friend her own age.  This will be the hardest thing for us to achieve but I am hoping that the acting class may offer us a little pool of potential friends.  I don’t want Mollie to experience failure within this area again and so this will only be undertaken when we feel that she can is emotionally ready to successfully achieve this.

I also have some personal PDA objectives for this year too.

When you are fighting tooth and nail for your child and being met with one professional after another who refuses to take you seriously, refuses to believe in PDA, offers you no support relevant to your child and ultimately close their doors on you it is very easy to become bitter, resentful and completely lacking in any respect for these individuals.  Not all professionals are the same but I am sad to report that other than the brave pioneers and innovative thinkers within their own profession that most of them are, as many parents on support groups describe, ‘complete muppets’.  So if you are a Psychologist, Pediatrician, Psychiatrist, Teacher, Social Worker or in any other profession whose opinion may be needed with regard to a child please don’t be a ‘Muppet’ isn’t it more rewarding to be a ‘Pioneer’ within your field.  If you haven’t heard about PDA or don’t know what it is then read and learn.  There is no shame in not knowing but there is in not been willing to learn about an emerging condition within your field of expertise.

What was that you said, you think that your child has PDA, what the hell is PDA?
 photo balconymuppets_zpsb69fc8d0.jpg

  • Now that I am through the worst and feeling far calmer and able advocate for PDA in a far less emotional manner I am hopeful that I may begin to be able to make some headway with my own local authority. I would ultimately like to try to offer enough evidence to encourage my local authority to accept and diagnose PDA.  For me this would be like winning Gold at the Olympics.  To know that the others who may follow in Mollie’s footsteps, in Stoke On Trent at least, would in the future be given the correct understanding and support would make everything worth while.  Hopefully other parents will be striving to do the same in their own local authorities and knowing the tenacity of the PDA army I am sure that they will.
  • I am in the process of writing a book that describes our journey with PDA, my understanding of my daughter, strategies that we have successful and so on.  My objective is to have it finished and accepted my a publisher by the end of this year.
  • To continue blogging and sharing my experiences online in the hope that I can reach other parents and the odd professional here and there. There are more and more parents blogging which is fantastic.  In nine months this blog has generated over 30,000 views world-wide and so blogging is a great way of spreading awareness.

Very Important Please Read

On the support groups that I am a member of there are hundreds upon hundreds of parents who find themselves in dire circumstances.  Ignored by professionals they are receiving no support while trying to deal with possibly the most complex individuals on the spectrum. Families are at crisis point, children are being sectioned, in desperation the police are being called out to deal with child on parent violence.  One young man has been sectioned and is being held in a totally inappropriate placement.  He has a diagnosis of PDA which is being arrogantly ignored by the professionals that are caring for him.  His mother has no rights and is being forced to watch as this team completely and utterly continue to use the wrong strategies which only intensify his difficulties.

If you would like to help this young man and his family please click on the link and take action by emailing his local MP demanding for action and support.  This needs to be done in the next few days prior to his next review meeting.  Copy the link and share on facebook and Twitter, this young man must be removed from this ‘Victorian’ establishment before the damage becomes irreversible.

http://www.sillitoe-uk.net/James_Murphy.html

For more information about PDA please visit http://www.thepdaresource.com/

The Joys Of Christmas

It has been ages since I last blogged for a combination of various reasons.  The main reason however is that I am frantically trying to write a book while simultaneously balancing family life, the Christmas build up and a very, very hyperactive, short-tempered and in constant need of one on one attention ten-year old daughter.  This is the first window of opportunity that I have had to put my fingers to the key board in the knowledge that I may have more than ten minutes free time.  Ignore that last remark my son has just arrived in the room in need of his jeans ironing.  I thought it was too good to be true I’ll be back in ten.

Medication Update

  • The good news is that following on from my last post is that Mollie’s bloods are now within the normal range for cholesterol and glucose which has been a huge relief.  I have a doctor’s appointment for early Jan to discuss the borderline heart prolong situation and so the issues that had thrown me sideways on my last post are hopefully all now being resolved.
  • Mollie has been referred back to local services for the prescription and monitoring of fluoxetine.  Following much of a do with basically no local psychiatrists wanting to take us on they eventually forced, oops I mean found someone who was willing to grab hold of the baton.
  • As this is Stoke On Trent my PDA official diagnosis from the ENC is apparently null and void and only of any use if the person reading it actually believes in PDA which is frustrating to say the least.
  • Hopefully, in time and by treading carefully I do hope to make some headway with my local authority and their current stance on PDA.

Christmas

For many people Christmas is a magical time of great joy, excitement, festive cheer and good will to all men.  However for many families living with PDA it is often a time of increased stress, anxiety, challenging behaviour and the requirement of extra reserves of patience.  I dread Christmas and I breathe a huge sigh of relief each year when it is finally over.  Hopefully this may change in the future and Mollie may reach a stage of being able to handle the excitement and the pressures of Christmas without transferring her difficulties onto us to soak up in our already saturated emotional sponges.

So why do our children find Christmas so difficult to handle, here are a few ideas and theories that have helped me to understand although the understanding doesn’t always help me to cope.

  • Our children already have huge difficulty in waiting for anything let alone a whole year for a sack load of presents.  As the day looms closer the ability to wait can become unbearable and the need to fill the gaping holes of boredom can transpire into very hyperactive behaviour needing full one on one constant attention.
  • They may become increasingly worried about what the presents are, what if they don’t like them, what if they present that they have dreamed of doesn’t show up.
  • They are surrounded by the presence of Christmas everywhere they look and many TV shows and films depict the perfect Christmas which they desperately want to copy in every detail in order to fulfill  their perceived expectation of the perfect day.
  • The big day only arrives once a year leaving little room for error and only a very small opportunity for everything to go exactly as planned.  The expectation for everything to go exactly as planned must be met and this can cause huge anxiety and the need to control the whole day.
  • If a family Christmas is the norm, as it is in our house, then there are even more people who can inadvertently upset the apple cart and ruin the plans.  This can further intensify the anxiety and the need to control even more people may make the child appear even more manic.
  • Christmas Day is the ultimate change in routine without knowing how it will pan out.

We often here the term ‘Bridezilla’ used to describe the anxious, stressed out bride to be.  Her wedding day is supposed to be the best day of her life when everything must go perfectly.  The organisation and effort that goes into the big day is massive and nothing or no one must be allowed to ruin it.  As the big day looms she may become even more anxious and stressed.  Will the flowers arrive, will the bridesmaid dress still fit Chloe now that she has put a few pounds on, will my parents behave with the in-laws, will the best man be trollied by the time he makes his speech and so on and so on.  The bride may become more anxious, stressed out and snappy because everything must go to plan on the day.  Is this how our children possibly envisage Christmas but also with the additional stress of having to wait for their presents which is almost like a drug addict waiting for a fix.

Mollie’s behaviour changes drastically several weeks prior to Christmas and slowly builds in intensity until the big day.  Following the big day we usually have the low which is also accompanied by challenging behaviour until, eventually, her normal routine begins to establish itself again.   She is snappy, bored, needs lots of attention, very controlling, even more avoidant and we can have a return of the physical release of tension.  When she was younger it was far worse and meltdowns on Christmas day were not uncommon.  It is still so very difficult but with skillful handling and careful management we endeavour to try to manage the day without a meltdown.

A Few Tips That May Make Christmas A Little Bit Easier

  • For the Christmas build up the best plan of action is to grit your teeth and get through it as best as you can.  Trying to fill the days up with activities and lots of attention can help but this isn’t always possible at such a busy time of the year.
  • We do the same thing every Christmas Eve which has made this day a little less traumatic.  We go to the local panto, have an evening meal and then come home and watch a film.  This may not be suitable for all children but it works for us.  If a panto is too overstimulating then simply having some sort of Christmas Eve routine that is devised by your child, in order to help them feel in control, may help to stem the anxiety.
  • This year we also plan to introduce a Christmas Eve present as well in the hope that the relief of an early gift may stem some of the anxiety associated with waiting for it all in one go.
  • Mollie makes her own Christmas list and she knows exactly what I can or can’t get her from the list.  She doesn’t like surprises and she needs to know what she is actually having.  An odd surprise, in addition to her must have list, is fine of course but the surprise of a present that she didn’t want at the loss of one that she was expecting to receive would be a disaster.
  • Mollie has a lot of input over Christmas day and the itinerary of the day is negotiated.
  • Adult members of the family work to a rota of one on one time with Mollie.  It doesn’t always work but we have found that if at least one person is always available to do what ever she wants at any given time that it does reduce the need to control the whole group.
  • If she is occupied and focused on her new gifts with an adult then it does appear to reduce the manic episodes of over excitement and promote calmness.
  • The routine of the family all sitting down to watch the Christmas Doctor Who special also helps to bring some order and familiarity to the day.  Again this is a routine that was introduced and is still instigated by Mollie as is the Christmas Eve routine.
  • Mollie is, now she is growing older, actively involved in food preparation and party organizing which again helps to reduce anxiety and helps her to maintain a sense of control.

I apologise in advance for the shortness and potential inaccuracy of this post.  I have written it at a very speedy pace in a rare moment of free time from Mollie.

I would just like to wish all of the lovely people who follow this blog or who are randomly reading this post a Very Merry Christmas and a Happy New Year and I desperately wish that all of us can experience a very peaceful and uneventful Christmas that passes us by calmly and without any major blow ups or meltdowns.  

Christmas Day is a very tough day for the PDA army but at least, thanks to the internet and support groups, we are all in it together and we can share our successes, disasters and more importantly know that we are not alone.

http://www.thepdaresource.com/

Aspienwomen: Adult Women with Asperger Syndrome. Moving towards a female profile of Asperger Syndrome

janesherwin:

A really comprehensive profile of female Aspergers by Tania Marshall. Although my daughter is diagnosed with Asperger’s and later was diagnosed with PDA I am discovering that reading about both profiles and characteristics are proving to be very beneficial in helping me to further understand Mollie.

Tania’s book, detailing the traits and characteristics of young girls and teens on the spectrum, is now available for pre order.

http://www.aspiengirl.com/buy_the_book

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Originally posted on Tania Marshall:

shutterstock_94805260book series2

Aspienwomen : Adult Women with Asperger Syndrome. Moving towards a female profile of Asperger Syndrome (Updated May 10, 2014)

The following list is an official detailed working screener document consisting of the unique characteristics and traits of adult women with Asperger Syndrome, or Aspienwomen. It is not a research-based formal assessment tool. This list comes from the many female women I have worked with over the years. I have assessed, observed, diagnosed and worked with hundreds of girls and women of all ages. This document is based on my clinical anecdotal evidence and research by other well-known professionals. I will be modifying and/or updating this list from time to time. This list was written from my reflections, observations and experience, and is written in no particular order. No-one person needs to have every trait, and it is rare that a person would identify with every trait. ***Please be mindful that…

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The Female Profile and PDA, could this be the missing link?

Many professionals, in health, education and social services seem to be stuck in a time warp when it comes to the subject of ‘Autism Spectrum Disorder’.  Because autism was originally thought to be a condition that mainly affected boys with a ratio of approximately 4 boys : 1 girl, the overall profile of High Functioning Autism / Asperger’s has become very gender biased towards boys only.

Increasing research and awareness, by experts within this field, are now claiming that a more accurate figure may well be a ratio of approximately 2 boys : 1 girl.  Current research is suggesting that many girls are slipping through the net because they present differently to boys and so they are simply not being detected until they are teenagers or adults.

The current female profile for High Functioning Autism / Aspergers is very similar to that of PDA in that females tend to have much better imaginative skills, empathy and the ability to role play what they consider to be ‘normal’ thus often flying under the radar in many social situations.  They do however still have the same or similar impairments but their different abilities to males on the spectrum means that these impairments manifest in different ways thus providing females on the spectrum with their own unique profile.

While PDA is similar to the female profile it appears to be a far more extreme version of it and the gender ratio for PDA is 50:50.  The most notable difference between the female profile and the PDA profile is the extreme demand avoidance and control required by individuals with PDA in all aspects of their daily living and their extreme and impulsive reactions when they feel that this control is slipping.

However I do think that acceptance and awareness of the female profile and therefore the scope that impairments in social interaction and communication can manifest in more than one profile may be a useful stepping stone for PDA awareness.   Especially given the fact that PDA appears to be one step along the continuum from what is currently being termed as the female profile.

Please click on the link below to read an article by Dr Judith Gould explaining about females on the spectrum in a little bit more detail.

http://www.theguardian.com/lifeandstyle/2009/apr/12/autism-aspergers-girls

Please click on the link below for the in depth list of female traits by Tania Marshall

http://taniaannmarshall.wordpress.com/2013/03/26/moving-towards-a-female-profile-the-unique-characteristics-abilities-and-talents-of-asperwomen-adult-women-with-asperger-syndrome/

Please click here to download the slides from the PDA conference where Dr Judith Gould discusses the female presentation and PDA.

PDA-Conference-Plenary-session-Jacqui-Smith-and-Judy-Gould

With the above in mind i.e. that females do have the same impairments as males but present differently thus giving them their own unique profile I thought that I would adopt a similar approach and use the DSM 5 criteria to illustrate the unique profile of children with PDA.

This profile has been compiled by using my experience of having a 10-year-old daughter with PDA, general information shared by various parents in support groups, the diagnostic criteria for PDA by The Elizabeth Newson Centre and extensive reading on the subject of Asperger’s, the female Asperger Profile and PDA.  I must stress that I do not have any formal qualifications in this area and that quantifying the PDA profile within the criteria of the DSM 5 is purely based on my own personal experiences, interpretations and opinions only.  I am also aware that as my experience is mainly based around a female with PDA that the following description may be more biased towards females with PDA.

The new criteria under the DSM-5 are as follows:

Autism Spectrum Disorder

Currently, or by history, must meet criteria A, B, C, and D:

A.   All individuals must have or have had persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:

1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction.

  • Children with PDA can appear to misunderstand tone of voice and the intention of the speaker often feeling that they are being told off, shouted at, purposefully embarrassed or ordered / bossed about.
  • Do not appear to understand the natural social pecking order and do not see themselves as a child or understand their natural place in society or how to behave in relation to those around them.
  • Children with PDA can be very over familiar with those around them e.g. quickly sitting on a person’s knee or wanting a cuddle from someone who they have only just met or with a person where this would be seen as inappropriate like a teacher.  This can make a younger child seem very confident but it is in-fact a lack of awareness of appropriate interaction skills.
  • Children with PDA need to dominate both their own conversation and the conversations of others with the use of many strategies. Constantly interrupting the flow of conversations, not allowing anyone else to speak, bombarding others with repetitive questions, refusing to respond to questions that are asked of them or responding by switching the conversation to a different topic.  It can often appear that conversation is simply a tool that is used to either avoid the demands of others or to dominate and control the actions of others.
  • Increasing awareness of their difficulties and the anxiety that socializing causes can result in many children with PDA failing to initiate any social interaction as they grow older.
  • Children with PDA appear to have better empathy than other children on the spectrum but this can appear to be on an intellectual level rather than an emotional one.  They can use their empathy skills to manipulate, control and avoid situations but often appear to have little understanding of the effect that their actions may have on others.  They can appear to have no understanding of the frustration that being controlled may have on another child and they may show little or no remorse if a violent outburst has upset or injured another person.  This may be due to an impairment in empathy or it could be that the need to control in order to reduce anxiety over rides any empathy.  In the right environment and with increasing awareness and years this aspect of PDA may improve.
  • Children with PDA may have difficulty in seeing things from another persons’ perspective which can lead to problems in resolving conflict.
  • Children with PDA can often speak in quite complex sentences and the context of the language can seem bizarre for a child of that age.  Language may often be copied or imitated from adults, other children or from the media but may not necessarily be understood by the child.
  • Children with PDA may often tell lies, tales of fantasy and make up stories either about themselves or others but appear confused and or upset if these stories are either not believed or are not received well by others when they realise that they stories are untrue.
  • Children with PDA can love playing practical jokes but don’t appear to naturally understand the boundaries of when a joke is going to far or if the recipient of the joke will find it funny or not.  If the recipient is upset by the joke the child with PDA may still find it funny.
  • Children with PDA don’t appear to fully understand or be able to empathize with how their words may hurt someone i.e. they may openly tell someone if they think that the person is fat or ugly or inappropriately laugh at something that others would not find funny.
  • A child with PDA may take delight in embarrassing somebody else.
  • Although a child with PDA will take delight in telling tall stories she may become very frustrated, angry and pedantic if she feels that another child or person is not literally speaking the truth.

2.Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures

  • Body language and facial expression can often appear to be over the top, acted, mimicked or melodramatic, possibly due to the huge capacity for many children with PDA to role play and mimic what they see those around them doing especially on TV.
  • Children with PDA can appear to have better eye contact than other children on the spectrum but is this due to their coping / acting skills.
  • Children with PDA may invade and not understand the concept of an individuals personal space.  Wanting to be constantly sitting on someones lap, standing too close, being in someone face and so on.
  • Children with PDA may snatch items from people, physically push them into the position that they wish the other person to be in, move them around and organize other people like chess pieces in a chess game.
  • Children with PDA may become very physically aggressive in order to have their needs met and can quickly lash out at others.
  • A child with PDA may perceive an adult to be a piece of play equipment, using them to climb on, bounce on or ride on to an extreme level ignoring any protests from the adult.

3.Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people

  • Children with PDA can appear to be very social and can role play appropriate behaviors but the ability to sustain this role play can vary from child to child.
  • Children with PDA often want to have friends and will seek out interacting with other children.
  • Once the novelty of a new friend or situation wears off and the child becomes more comfortable and is less able to maintain the role play the obvious difficulties that children with PDA experience with peers become more obvious.
  • Children with PDA need to control and direct the play and the interactions with peers.
  • They may become obsessed with a particular child either from a love or hate perspective.
  • They may try to isolate a particular child from the rest of the class / group in order to try to maintain that friendship by reducing the possibility of other children from taking her/him away from her.
  • Children with PDA appear to cope much better in  a one on one social situation and struggle to an even higher degree in group situations.  This may further explain the need for the child to have one close friend who she can interact with on a one on one level.
  • When the child with PDA does not feel in control she may often lash out both verbally and physically at the other child.
  • Play can be imaginative but the child with PDA will often appear to be the script writer and the director and the other child is simply there to obey the demands of the child with PDA rather than to actively contribute.
  • Children with PDA can have great difficulty in adjusting their behavior to different social contexts e.g. waiting quietly at the doctors, behaving appropriately in shops, adjusting their behavior for adults, following demands at school and so on.
  • However children with PDA do have a good ability to role play the ‘typical child’ but the ability to maintain this front of normality varies from child to child.  Some children can fly under the radar at school but then blow up all of that pent-up anxiety / frustration at parents.
  • Other children can maintain this front for short spells only e.g. when visiting a family member, starting a new friendship or for the first few weeks / months in a new class or school.  However once the ‘Honeymoon’ period is over the child struggles to maintain the facade and the true difficulties soon emerge.
  • Ultimately children with PDA, due to their need to be in control, can find it increasingly difficult to maintain a healthy relationship with peers and following repeated failures and low self-esteem they may become very reclusive.
  • Other children may actively avoid the child with PDA, frightened or confused by the controlling and unpredictable behavior.
  • The child with PDA may become the object of ridicule and bullying by other children who confuse her difficulties with those of simply being a bossy, naughty child.  They may learn which buttons to push in order to prompt an outburst from the child.
  • Children with PDA may become so needy for a friend that they themselves may be at risk of being manipulated by other children who recognize this weakness and utilize it for their own purposes.

B.  All individuals must have or have had restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:

1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases)

  • Children with PDA may mimic and role play the speech and actions of others which could be described as social echolalia.
  • They may make up their own little language or pronounce certain words in their own unique way e.g. defore instead of before or smarsh mellows instead of marsh mellows.
  • They may develop either small or large complex motor tics e.g. repetitive sniffing, grunting, squeaking, twirling, facial twitching and so on.

2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).

  • Children with PDA may become greatly distressed if their belongings are moved or tidied away.  Things may need to be left in the position that they left them.
  • Many children with PDA do have a very limited repertoire for food, many insisting on eating the same things again and again.
  • Many children with PDA do have a tendency for repetitive questioning especially when they are trying to control a situation.
  • The need to control and avoid demands could be seen as a repetitive routine and they do impose this repetitive behavior on others.
  • Children with PDA do not like routine that is imposed on them by others but do develop a need to adhere to their own routine and will impose this routine on others.  Using novelty can sometimes be successful in helping them to engage in an activity that may not be part of their usual routine.
  • Children with PDA may develop a routine with people, where only certain people can perform certain tasks e.g. Mum wakes child up and does morning routine, dad does bedtime routine, mum plays arts and crafts, dad plays computer games, outreach worker plays Barbie and so on and no one can ever switch roles.

3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

  • As with the female profile children with PDA do have obsessions and special interests however these tend to be different from what you would typically see with males on the spectrum.  With children with PDA it may often not be the topic of the obsession that appears unusual but rather the intensity that the interest evokes.
  • Obsessions can be social in nature with either another child, person, TV Personality or show.
  • They may repeatedly watch the same film or series time after time and/or need to watch a whole series back to back all the way through.
  • May become obsessed with a particular toy or style of play e.g Barbie and that may become the only game that she plays.
  • Children with PDA often seem to become fixated with a particular soft toy who may then take on a whole persona of its own.
  • They may become obsessed with particular computer or Xbox games needing to play them for hours on end.
  • A child with PDA may repetitively colour in picture after picture of their latest focus of interest.
  • The child may become heavily involved in role play and the lines of imagination and reality can sometimes become blurred.
  • Some children with PDA may become obsessed with purchasing items and a desired item can become all-consuming and the need to have it does not dissipate until the item has been purchased.
  • Some children with PDA may have some slightly more unusual interests like tying things up with intricate knots, cutting up yogurt pots, making glass after glass of colored water etc, etc.
  • They may love to collect things and become obsessed with obtaining everything and anything to do with their latest obsession e.g. the full infantry of Moshi Monster merchandise, everything to do with Barbie, Power Rangers .  Sometimes this love of collecting may extend to more unusual items e.g. marbles, rocks and various trinkets.

4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).

  • Children with PDA may be over or under sensitive in some if not all senses.  The different senses consist of hearing, smell, taste, vision, touch, vestibular and proprioception.
  • Difficulties with any of these senses can manifest in various behaviours.
  • Certain noises can be too loud or the child may become distressed if everything is at the same volume and they can’t differentiate between background noise and primary noise.
  • Certain smells may be overpowering and nauseous.
  • Tastes and textures in the mouth may cause the child to be a very picky eater.
  • Clothes and shoes may irritate which may cause the child to be most comfortable when wearing nothing at all or nightware.  They may be resistant to clothing and find labels in clothes a real irritant.
  • Spinning and jumping on a trampoline may be the child’s reaction to an impairment in the vestibular function in the inner ear affecting balance.
  • Bumping into things and knocking things over may be due to proprioception processing difficulty which regulates the brain’s ability to know where your body is in relation to space.
  • Fluorescent lights, problems with reading and writing, becoming over stimulated with visual stimuli may all be signs of a visual processing difficulty.

http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html

http://addandsomuchmore.com/2013/11/10/sound-sensitivity-and-sensory-integration/

C.  Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

  • The most noticeable trait in early childhood is the level of demand avoidance, control and challenging / explosive behaviour.  These early traits are so overpowering and all-encompassing that they can totally mask the autism that drives them.  This can lead to the incorrect diagnosis of naughty child, inefficient parenting, Oppositional Defiant Disorder and Attachment Disorder to name but a few.  Autism can be completely overlooked because it is often only when the child is calm and receiving the strategies and management for PDA that many of the traits of autism that lie beneath the PDA Behaviour Profile become visible.  When they do become more visible the manner in which they present may not be typical of the current understanding of autism / asperger’s but may instead be more consistent with the emerging Female Profile.  Or even better, if we can get PDA recognized, the traits will be consistent with what clinicians may come to learn as the PDA profile.

D.  Symptoms together limit and impair everyday functioning.

  • When the symptoms are put together they do fit the criteria for Autism and they do impair everyday functioning however for the correct strategies, understanding and management the correct diagnosis of ASD with a PDA profile is required to enable the individual to have the best support for the future.

Please view this brilliant leaflet compiled by a fellow PDA parent.

http://www.newsonline.ltd.uk/pages/pda_files/PDA_Information_leaflet.pdf

In Conclusion

Perhaps the reason why children with PDA are so complex and extreme is due to the fact that they seem to be affected to such a large degree by so many of the features and criteria for autism.  Perhaps they process these difficulties to such an acute level that the response from them is one of needing complete control to make the anxiety and confusion, been felt at a heightened level, to STOP !!!

Many children with autism cope by bringing order to their lives by arranging possessions in a certain order and by having a need for repetitive routines and structure.  Does the child with PDA find that the only way that they can cope and bring certainty and routine into their lives is to completely arrange and control their whole environment and the people in it.  Without the control the ability to understand, reason and to intuitively know what to do socially when you are so desperate to be a social butterfly is just too confusing, scary and sends off the stress beacons.

Is it any wonder that many children with PDA become so reclusive and find it impossible to leave the comfort of home.  Past experiences, a growing understanding of their differences, an awareness that for now they are powerless to control their behaviours and the recognition that trying to obtain complete control of their surroundings is no longer enough and can’t protect them from the curved ball that may get thrown their way.

Mollie put it very eloquently last night when she said ” I have a phobia of people” and “I don’t really know who I am, what I like or who I am supposed to be”.

How can anybody say that these children do not have autism!!! it is time to come out of the time warp and for clinicians to research and accept that autism has more than one face.  It really isn’t rocket science is it? Read the information, the profile, meet the child, understand the child’s behaviours, then put the pieces together.  This child has a form of autism whose profile is best described as fitting that of PDA !!!

Autism is at the heart of PDA and the diagnostic profile of PDA is how these impairments then manifest into the behaviours of individuals with PDA.  It is important to understand that these behaviours are the result of how these individuals cope and respond to the challenges that their form of autism presents them with.

The diagnostic criteria for PDA can be viewed by clicking on the link below.

http://www.pdacontact.org.uk/frames/index.html

Does Your Child Fit The PDA Profile?

This post has been primarily written to help parents to decide if they think that their child may fit the profile for PDA by sharing with you the screening questionnaire devised for research purposes completed with my daughters profile.  Hopefully this may also be of help to those professionals who do have an active interest in PDA and who are prepared to think out of the box rather than to follow the rest of the professional sheep until they are spoon fed permission to actually take PDA as a serious condition.

As we all painfully know PDA is only recognized as a definable sub group within the Autism Spectrum in random pockets across the UK.  The majority of professionals don’t appear to have ever heard of it let alone studied the subject with an open mind.  This is something that I find rather incredulous to say the least, surely it is within the personal interest of any clinician, educational psychologist, pediatrician, social services or any other front line agency to keep abreast of any new developments within their field.

Even if your area doesn’t allow you to officially diagnose it, at least be aware of it from the point of view of the profile, what to look for and what the recommended handling strategies are.  You never know when a child with PDA accompanied by a fraught parent may land in your consulting room.  You may not have believed in PDA before, but by God, you will once you have spent any time with one.  I stress the words ‘spend time with’ because of the wonderful chameleon qualities that a child with PDA can exhibit which can successfully fool one and all that the parents must have Munchausen by proxy.  The child can, to the untrained observer or to someone entrenched in traditional ASD symptoms, appear to have no signs of ASD whatsoever.

dinky

Image has been created by the author of ‘Dinky and Me https://www.facebook.com/dinkyandme?fref=ts

Parents are basically left to self-diagnose their child and to single-handedly try to research their child’s condition, implement strategies, advocate for their child and fly by the seat of their pants with a child, that I have heard, described as the most complex in the spectrum. At the same time a parent is often simultaneously going into battle after battle with teachers, schools, social services, health professionals and anyone else who wants to stick their ore in stating its all in the Parent’s heads.   How any of us survive this constant onslaught both from our child at home and then from family, friends and professionals who all think that they could so easily deal with the child and quickly sort him or her out is, quiet frankly, a bloody miracle.

In short Parent’s are left isolated, alone and written of as ‘Nutters’ by many professionals while they are desperately trying to fight, survive and to simply be listened to and most importantly to have their child’s needs met.

The damage that is incurred to the child due to the lack of acknowledgment of the underlying condition and the unsuccessful implementation of even more damaging behaviour strategies, repeatedly enforced upon the child by clueless professionals can take years to undo.

The DISCO (Diagnostic Interview for Social and Communication Disorders) diagnostic tool devised by Lorna Wing and Judith Gould has specific questions designed to highlight whether a child may have PDA rather than low or high functioning autism.  I am amazed that a condition that is accepted by the National Autistic Society and is diagnosed and encompassed in the DISCO by the Lorna Wing Institute is still ignored by so many areas and is mainly completely ignored by CAMHS. Surely each individual area has a duty to ensure that they are keeping upto date with current conditions, profiles and strategies in order to offer the patients that visit them the very best in knowledge, understanding and care.

If you are a parent that suspects that your child may have PDA or if you are a professional that has taken an interest in PDA then please click on the following link.  Mollie is officially diagnosed with PDA by Phil Christie at the ‘Elizabeth Newson Centre’ and a couple of years ago I took part in a research project conducted by Liz O’nions supervised by Professor Francesca Happe.  Part of this research was for me to fill in two questionnaires relating to Mollie’s behaviour and profile. One of the questionnaires was primarily using the questions that were originally devised for the DISCO.  Mollie was chosen as one of the children that most accurately fitted the original profile described by Professor Elizabeth Newson and was therefore subsequently used for the research data.  So, if you would like a fairly accurate description of the types of behaviours that are indicative of PDA then please click on the links below which I have already completed detailing Mollie’s behaviours at that time.

PDA interview mailed version

Study screening questionnaire-mail out

For more information regarding these questionnaires and their purpose please click on the following link.

https://sites.google.com/site/lizonions/faq

On the surface these questionnaire’s may make grim reading and can easily be interpreted as just an extremely naughty child, desperate for attention and her own way at any cost.  This is where it is so important to see the reasons behind the behaviour so that a successful outcome can be achieved both for the child and for the family.

The behaviours are simply the symptoms of what is going on at the core.  At the core of a child with PDA is a child with autism, confused, frightened and in a permanent state of high anxiety and alert.  Stuck in the middle of a confusing world where the nature of social interaction and communication that comes so naturally to you or I is just so desperately misunderstood by them. Desperately trying to navigate the social highway they are often also in a state of constant sensory overload and working so very hard to try to fit in but just not understanding where it all goes wrong.

my child isn't rude

I have written this post and shared these questionnaires with you in the hope that they may be of help to any parents out there who are considering PDA as a possibility for their child’s behaviour.   PDA isn’t just about refusing demands or controlling people but it is also about all of the other aspects as well.  The fantasy & role play, the social manipulation used to avoid and to control, the obsessive nature often shown around people and so on.  Hopefully these questionnaires will help to give and all round picture of PDA that may assist you when you are wondering if this could be your child or if you are trying to persuade a professional as to why you think your child could have PDA.

I am also trying to highlight the absolute need for professionals, especially the front line professionals, to start to take a serious look at the profile of PDA so that they can educate themselves on this most fascinating condition.  Surely just wanting to know your area of expertise inside out should make you want to explore and delve into the concept that PDA is a definable sub group within the Autism Spectrum. These children and their families need your help and support because without it the Mountain really can become to steep to climb.

Thank you for reading this post and please feel free to share it or to share the questionnaires in a quest to get PDA heard, accepted and recognized.

The Trials and Tribulations of Engaging Learning In An Owl With PDA

Before I start discussing things in general just a bit of information about Mollie’s ongoing atypical sleep pattern.

Mollie’s sleep continues to become more and more difficult to regulate.  I have read some excellent articles regarding a sleep disorder named “Delayed Sleep Phase Syndrome, Non-24 hour sleep/wake”.

I have linked below the brilliant articles that another blogger has posted on her blog. The first one is about her story with this sleep disorder which is then followed by a three-part series going into more detail.  The basic gist is that many individuals with a neurological disorder like Autism or ADD among others, can be more susceptible to the ‘blue light’ that is produced by the sun and also produced by TV Screens, Ipads, computer screens and so on. The exposure to ‘blue light’ can for these individuals have a deeply disruptive affect on their 24 hour sleep cycle.

The following articles are well worth a read if some one that you know is affected by a sleep disorder.  Just having the knowledge and understanding that these articles have given me has really helped me to empathize with why Mollie is now so topsy turvy with her sleep patterns.

http://addandsomuchmore.com/2012/10/09/jetlagged-for-life/

http://addandsomuchmore.com/2013/05/05/sleep-basics-affecting-sleep-timing/

http://addandsomuchmore.com/2013/05/11/sleep-timing-disorders-and-light/

http://addandsomuchmore.com/2013/05/13/sleep-timing-disorders-more-photobiology/

Below is a link to the official webpage for this sleep disorder.

http://circadiansleepdisorders.org/

Home Educating An Owl with PDA 

I am still waiting for official approval before I can officially say that I am Home Educating and so for the purpose of being PC I am currently trying to teach my daughter things at home during the current phase of school refusal.

The result of this back to front sleeping pattern is playing havoc with any attempts to do anything in the day with Mollie which is a feat in itself even when her sleep rhythms are more normal.  Needless to say home educating has become somewhat of an art form when you look at the odds that are stacked against me.

  • Mollie is demand avoidance to a pathological level and refuses to engage in any direct learning.
  • Even instructions for games have to be read by me first and then reworded in a more relaxed and less direct manner.
  • She will pointblank refuse to engage in anything that has been someone else’s suggestion and the thought that she will taught something is just like a red warning siren going off telling her to avoid, avoid and at all costs avoid.
  • If you push the demand to learn her desire to avoid will only strengthen and increase.
  • If you use consequences or rewards in order to promote some kind of engagement you simply increase the anxiety thus making it even harder for the child to engage.
  • You need to tread very carefully and avoid the urge to push the demand or Pow, Boom, Crash, Wallop and Explode with lightening speed the meltdown will catch you unaware and cause mass destruction.
  • No learning is done, anxiety has increased, radar for the next demand is intensified and you have probably just completely undone the progress that has taken months to make.

So the question is, how do you teach anything to a nocturnal child with PDA, well this will of course vary depending on the individual but in Mollie’s case the answer is simple.  You just can’t teach Mollie anything, you can gently advise, suggest, incorporate learning into day-to-day activities and learn through play.   To teach is a strong word which conjures up many images of instruction, do as you’re told, authority, following directives & demands and so on.  Therefore, I think that for a child with PDA a better terminology to use would be to say how do I engage interest with I child with PDA.  Now that one I may be able to answer although the current sleep issue is not helping matters at all at the moment.

Assessing The Situation

  • We are going with the flow with the sleep, Mollie has presently being awake for 28 hours solid.  At 10.00 am this morning she had been awake from 5.00 pm the previous day.  Do you think that today would be a good day to expect the brain to learn and absorb, good I’m glad you agree neither did I.
  • The golden rule for engaging a child with PDA is to carefully pick and choose your moments, chronic sleep deprivation isn’t a good recipe for either engagement of passive behaviour for any individual.
  • Now then if she happens to have fallen asleep on any given morning at 5.00am and rises at 2.00pm then this provides a window of opportunity to engage the child.  The hours of sleep are, of course odd, however the child will be rested.
  • Sleep is not the only factor at play here, even a rested child with PDA may, on that particular day, have a very low tolerance for demands.  It really is a case of weighing up all of the options and indicators that the child is giving and developing an instinctive and intuitive knowledge of when is and is not the right time.  When you can push for a positive result and when you need to pull back in order to avoid a set back.
  • This is where Mollie being at home has such huge advantages for her education.  I know when to push, when to pull back, when complete abstinence is required or when I can tentatively creep ahead with my fingers crossed.
  • The relaxation and demand free environment of home is where Mollie is at her most relaxed and therefore more able to be able to engage and tolerate small amounts of learning in very small bite size chunks.
  • Home is not dependent on either attendance or concentration between the hours of 9.00am – 3.00pm, at home we can show much greater flexibility which, for a child with a sleep disorder, is a must.

Engaging the child with PDA

      • Think of fun and inventive ways of learning that basically just don’t seem like learning but are very much based around what the child enjoys doing naturally.
      • Accept that engagement on one day, where lots of your targets may be successfully completed will more than likely be met with an equal if not more amount of days when nothing appears to have been achieved.
      • I always give Mollie choices and I may say ” do you fancy doing an experiment, making flags or watching a you tube video on how earthquakes happen” she may say ” I’m watching this I’ll do it later or I want to make a house for Barbie instead”
      • Go with what the child wants and say fine, just let me know if you fancy doing anything when your film is finished or oh that’s a fab idea let’s make a house for Barbie.
      • You can slip in lots of education while making a house for Barbie i.e. what will the town be like,  where shall we place the house in the town next to the pub or next to the park, shall we have solar panels and be eco-friendly, will the house be in the countryside and so on.  It could be turned into a geography lesson.
      • If she wants to watch her film I simply start doing some work on my own, sometimes curiosity may get the better of her and she will ask to join in or other times I will speak out loud as I discuss different animal groups in the hope that one ear is listening to me.  I may sit tapping my head with my pen and saying out loud “MMmm so what animal group does a lizard belong to them and mutter under my breath a few different options, sometimes she will smugly give me the right answer and the reason why.”
      • A walk with the dog can develop into a nature trails of trying to spot one of each animal group and take photo’s if the child is keen on photography.
      • A boring drive in the car can be utilized as a learning opportunity and turned into a quiz about one of the topics that you have been looking at.  Using a jelly mold to make our fab ‘ leo the lion’ sparked a discussion on mammals.

 photo 1d82b090-ff8d-43c7-b0c1-0123480f3d46_zpsc0616e6a.jpg

    • Cooking / baking is great fun and can be a fab way to use literacy, weighing and measuring skills not to mention life skills.
    • A bath can be a fun way to demonstrate how water displacement can result in waves and therefore in the ocean a tsunami.  We have recently encouraged a bath by making it much more fun with ‘Jelli Baff’ which turns the water into goo.  A fab way to entice Mollie into the bath, we used coasters to represent tectonic plates causing mountains, volcanos and tsunamis. The goo was a great representation of Magma and Mollie loves the sensory feeling of bathing in goo.

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    • We have made our own colouring books on topics because Mollie loves to colour in and this may help for little bits of information to be retained.  There is also a fabulous array of educational colouring books available on the internet.

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  • We have used plaster of paris to make our own fossils which was loads of fun and so now Mollie fully understands why and how the Earth’s crust is such a wonderful timeline of life in previous eras.

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  • We have used an inflatable globe to work out night and day and how the earth rotates around the Sun on an axis which creates different seasons.  We also play catch shouting out different countries and check on the globe where people that we know are on holiday.

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  • We have painted a very rough map of  the world and we have recently added to the image that you are about to see by adding flags of the world on the left hand side. When Mollie painted over certain countries in the blue ocean, because she knew I wouldn’t want her to, I laughed about the fact that I had not heard on the news that Italy and Greece disappeared under the ocean and inquired if there had been any recent Tsunami’s reported.  This seemed to tickle her and make the activity more fun.

This is just a very quick overview of the amount that has been learned, created and enjoyed during but a few short months.  The key is looking at every day and everything that we mundanely do on a day-to-day basis as an opportunity to engage the child in a very non direct and play based manner.  The amount of learning that can be achieved knows no bounds, Mollie and I have achieved so much even though she spends most of the day asleep because I do seek to use every opportunity as a window to create and learn something new.  I withdraw at the speed of light if the flashing red beacon goes off on the top of her head but I also seek to make the most of every opportunity that I have when the flashing red beacon is off duty.

I am a novice when it comes to home educating but I do feel that we are making positive progress and if nothing else I am really enjoying all of the re-learning that I am doing which funnily enough I detested at school.

As they say it’s not what you do but the way that you do it that will ultimately lead to success and a pleasant learning environment for all.

I must express that these are purely my own observations of Mollie and that my decision to request to Home Educate is not always the best option because all children with PDA are individuals.  Some children with PDA may cope perfectly well in school with the correct support package. My decision to request the LA to home educate was based on three attempts to school her within the system that still failed despite the wonderful support that the LA gave her.  At one stage she had a statement of 50 hours plus but it still led to school refusal.  For Mollie her social anxiety prevents the possibility of learning within school to be an option for us but this decision has been bore out following years of trying where, I feel, we have now exhausted all other options.

She has never been happier and due to being at home the sleep issue, while not desirable, is not a source of stress.

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