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

Why Pathological Demand Avoidance Syndrome (PDA) is not the same as, or another way of, describing Oppositional Defiant Disorder (ODD)

PDA was proposed by Professor Elizabeth Newson to be seen as a definitive and separate sub group within the category of ‘Pervasive Developmental Disorders (PDD)’ (Newson et al 2003). Elizabeth Newson et al (2003) Pathological Demand Avoidance Syndrome: a necessary distinction within the pervasive developmental disorders; Archives of Diseases in Childhood. Since the publication of this paper terminology has changed and the term PDD has become synonymous with the term ASD.  The importance of this is that PDA is now best understood as being one of or part of the Autism Spectrum Conditions (P Christie 2015).

PDA is not currently thought of, by the experts in this field, to be another name for ODD or to be another name to give to an individual with ASC and co morbid ODD.  It may be that some individuals do indeed present with ASC and co morbid ODD however this may not always be the case.  A child with PDA will have a unique profile that may not be accurately described or indeed helped by the mix and match of these two labels. 

“It is inevitably the case that when conditions are defined by what are essentially lists of behavioural features there will be interconnections and overlaps. Aspects of both of these conditions can present in a similar way to those features that make up the profile of PDA.  There is also the possibility of the co-existence or ‘co-morbidity’ of different conditions and where this is the case the presentation is especially complex.

ODD, Oppositional Defiant Disorder, itself often exists alongside ADHD, and is characterised by persistent ‘negative, hostile and defiant behaviour’ towards authority.  There are obvious similarities here with the demand avoidant behaviour of children with PDA.  PDA, though, is made up of more than this, the avoidance and need to control is rooted in anxiety and alongside genuine difficulties in social understanding, which is why it is seen as part of the autism spectrum.  This isn’t the case with descriptions of ODD.  A small project, supervised by Elizabeth Newson, compared a group of children with ODD and those with a diagnosis of PDA and found that the children with PDA used a much wider range of avoidance strategies, including a degree of social manipulation. The children described as having ODD tended to refuse and be oppositional but not use the range of other strategies.  Many children with ODD and their families are said to be helped by positive parenting courses, which is less often the case with children with PDA.”  (P Christie 2015 ‘My Daughter is Not Naughty’ p.g 310 – 311)

Recent research has concluded that there are indeed behavioural overlaps between individuals with PDA, typical ASD and ODD but that the PDA group had unique features that were not shared by either of the other two groups and that the PDA group were also atypical of the behavioural profile typically seen in individuals with ASD or conduct problems.

The findings of this research have being summarised in the following information cards and the source for that information is referenced in the cards.

ODDvPDA1

The similarities and differences exhibited between children with PDA and children with ODD.

PDF Version please click here ODDvPDA1

The similarities and differences exhibited between children with a typical presentation of ASC and those with PDA

The similarities and differences exhibited between children with a typical presentation of ASC and those with PDA

PDF version please click here ASDvPDA1

Further discussion From the Published Research that was the Source for my Information Cards

While these findings could indicate that the PDA group has an ASD with co-morbid conduct problems, plus additional extreme emotional symptoms, this does not fully accommodate the main difficulties in PDA as outlined in the ‘Introduction’ (of that research paper). Specifically, poor social cognition associated with autism appears inconsistent with instrumental use of social manipulation. Impoverished imagination in autism is inconsistent with role play and excessive fantasy engagement in PDA (e.g. taking on the role of a teacher when interacting with peers and telling tall tales). While children with conduct problems may resist complying in order to pursue their own interests – for example, to avoid a task they dislike – obsessive avoidance of even simple requests, regardless of the personal consequences, goes beyond this. PDA may represent a subset of those who tick boxes for ASD, conduct problems and emotional symptoms, with these additional very characteristic problematic features. However, current educational or therapeutic provision for ASD children with conduct problems does not seem to suit those described as having PDA. The term may well reflect disturbances in more circumscribed socio-cognitive pathways associated with social reciprocity or processing of incoming social cues. These hypotheses must be explored using cognitive-level paradigms. Elucidating the neurocognitive basis of this profile, and possible interventions, remain key issues for future research. 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.

As a result of recent research there has also been the development of the Extreme Demand Avoidance Questionnaire EDA.  O’Nions, E., Christie, P., Gould, J., Viding, E. & Happé, F. (2013)  Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q): Preliminary observations on a trait measure for Pathological Demand Avoidance; Journal of Child Psychology and Psychiatry. 

The EDA-Q was found to successfully differentiate children reported by parents to have been identified as having PDA from comparison groups reported to have other diagnoses or behavioural difficulties. It provides a potentially useful means to quantify PDA traits, to assist in identification and research into this behavioural profile.

Key points

• Pathological Demand Avoidance (PDA) is a relatively new term that is increasingly being used as a clinical description in the United Kingdom. Children with PDA display an obsessive need to avoid everyday demands, and try to dominate interactions with others, often using socially shocking behaviour with apparently little sense of what is appropriate for their age.
• The present study describes the development and preliminary validation of a trait measure for PDA: the ‘Extreme Demand Avoidance Questionnaire’ (EDA-Q). Scores on this measure successfully differentiated individuals reported to have PDA from comparison groups reported to have other diagnoses or behavioural difficulties, including individuals with ASD, disruptive behaviour, or both. The sensitivity and specificity of the measure to identify PDA was good.
• The 26-item EDA-Q provides a potentially useful means to quantify PDA traits. Scores should be considered an indicator of the risk that a child exhibits the PDA profile, rather than a diagnostic indicator. Further studies are needed to validate the measure in a population for whom information from clinical assessments is available.

Extreme Demand Avoidance Questionnaire (EDA-Q): 26-item final version

Items 1–26 (apart from 14 and 20) are scored as follows: Not true = 0, Some-what true = 1, Mostly true = 2, Very true = 3. Items 14 and 20 are reverse scored: Not true = 3, Some-what true = 2, Mostly true = 1, Very true = 0. Total possible score for items 1–26 = 78.

Not true

Some-what true

Mostly true

Very true

1 Obsessively resists and avoids ordinary demands and requests
2 Complains about illness or physical incapacity when avoiding a request or demand
3 Is driven by the need to be in charge
4 Finds everyday pressures (e.g. having to go on a school trip/visit dentist) intolerably stressful
5 Tells other children how they should behave, but does not feel these rules apply to him/herself
6 Mimics adult mannerisms and styles (e.g. uses phrases adopted from teacher/parent to tell other children off)
7 Has difficulty complying with demands unless they are carefully presented
8 Takes on roles or characters (from TV/real life) and ‘acts them out’
9 Shows little shame or embarrassment (e.g. might throw a tantrum in public and not be embarrassed)
10 Invents fantasy worlds or games and acts them out
11 Good at getting round others and making them do as s/he wants
12 Seems unaware of the differences between him/herself and authority figures (e.g. parents, teachers, police)
13 If pressurised to do something, s/he may have a ‘meltdown’ (e.g. scream, tantrum, hit or kick)
14 Likes to be told s/he has done a good job
15 Mood changes very rapidly (e.g. switches from affectionate to angry in an instant)
16 Knows what to do or say to upset specific people
17 Blames or targets a particular person
18 Denies behaviour s/he has committed, even when caught red handed
19 Seems as if s/he is distracted ‘from within’
20 Makes an effort to maintain his/her reputation with peers
21 Uses outrageous or shocking behaviour to get out of doing something
22 Has bouts of extreme emotional responses to small events (e.g. crying/giggling, becoming furious)
23 Social interaction has to be on his or her own terms
24 Prefers to interact with others in an adopted role, or communicate through props/toys
25 Attempts to negotiate better terms with adults
26 S/he was passive and difficult to engage as an infant

Results

For children aged 5 to 11 a score of 50 and over…
For children aged 12 to 17 a score of 45 and over…
…identifies individuals with an elevated risk of having a profile consistent with PDA.

‘The EDA-Q should not be considered a diagnostic test. For diagnosis, a thorough assessment by an experienced professional is required.’ (PDA Society 2014)

Conclusion

PDA is a very real condition that should be seen as a definitive and separate subgroup with the autism spectrum conditions.  Hopefully with continuing research, within this field, PDA will eventually and officially enter the diagnostic manuals. However, in the interim, there is nothing to stop many clinicians from diagnosing this condition based on their own clinical experience and expertise.

Being in a diagnostic manual is not a pre-exquisite required for diagnosis and should not prohibit a clinician from diagnosing PDA as stated by Dr Judith Gould at the Cardiff PDA Conference 2014.  Being in a diagnostic manual simply means that finally research has finally caught up, but this can take decades.  In the meantime many individuals and families are left without the correct diagnosis or support.

Although Asperger’s has being removed from the DSMV it isn’t that the condition has been deleted but simply that the terminology of individuals presenting with an Asperger’s profile has been changed.  However in 1970 this condition or even this profile may not have even existed in diagnostic manuals, does this mean that the condition didn’t exist or merely that it was waiting for diagnostic manuals to catch up with what Hans Asperger’s had already discovered? This is where we are now currently standing with PDA, we are simply waiting for diagnostic manuals and research to catch up with what Professor Elizabeth Newson identified some thirty odd years ago.

The importance of the correct diagnosis is to better understand the child and to be signposted to the correct support and strategies (P Christie).  Strategies that are often successful for individuals with ODD do not tend to be successful for individuals with PDA and can, infact, often intensify the issues.

My daughter is not willfully naughty or defiant and describes the need to avoid demands as instinct, something that she does not consciously decide to do but something that she is compelled to do.  When she is met with a demand, even a pleasurable one, her stomach goes into somersaults and in order to stop the rising anxiety she simply has to try to avoid the demand. Giving her a countdown or a routine of the day’s activities makes her even worse as does direct eye to eye contract and firm, simple and direct demands.  This may vary from child to child but these strategies do not work with her but PDA strategies do!  

Published peer reviewed papers on PDA http://www.pdasociety.org.uk/resources/published-articles

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

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) PDA A Nessessary Distinction

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) PDA A Nessessary Distinction.  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 and is not down to an NHS directive.

Dr Judith Gould http://www.autism.org.uk/Our-services/Diagnosing-complex-needs/About-the-Lorna-Wing-Centre/Our-staff/Dr-Judith-Gould.aspx 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’. Clinical and Educational Needs of children with PDA

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.  less we not forget that Wing introduced the term Asperger Syndrome and was involved in founding the National Autistic Society (NAS) in the UK.
http://en.wikipedia.org/wiki/Lorna_Wing

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 2011) PDA-Conference-Plenary-session-Jacqui-Smith-and-Judy-Gould

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.

Although Asperger’s has being removed from the DSMV it isn’t that the condition has been deleted but simply that the terminology of individuals presenting with an Asperger’s profile has been changed.  However in 1970 this condition or even this profile may not have even existed in diagnostic manuals, does this mean that the condition didn’t exist or merely that it was waiting for diagnostic manuals to catch up with what Hans Asperger’s had already discovered? This is where we are now currently standing with PDA, we are simply waiting for diagnostic manuals and research to catch up with what Professor Elizabeth Newson identified some thirty odd years ago.

During the interim parents, individuals and families will continue to rely on professionals to think outside of the box and to be brave enough to stand up and to be counted.  We need professionals to make judgments based on their own research and clinical expertise and to dare to diagnose what is not currently in a diagnostic manual.  Without these few brave and dedicated professionals we will be dead in the water. Just as Wing and Gould did for Asperger’s and Newson did in her preliminary work towards the acceptance of PDA we now need others to be pioneers and to follow in their footsteps.  Without pioneers and the brave nothing will ever change or move forward in the advancement of understanding Autism Spectrum Conditions!

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/

During recent months I have become increasingly concerned at the huge amount of pressure that parents often face from schools and their Local Authority when their child refuses to attend school.  For a child with PDA this refusal is often steeped in high anxiety and an inability to cope with the pressures of the school day and all of the demands that this may entail any longer.  This is therefore a health and a special education needs issue and not a truancy issue and should therefore be treated as such by the local authority.

Parents who are already completely stressed out, struggling to cope with daily challenging behaviour and may be completely on their knees emotionally are often then subjected to, what I can describe as, bully boy tactics rather than support from their child’s school and the local authority.  This is something that I am seeing all too often in the support group that I help to run.

Whether local authorities and the professionals involved, in many of these cases, are actually trying to pull the wool over parent’s eyes or are simply unaware of the correct procedure that they should actually be following remains unclear and the waters are indeed murky.

Therefore it is essential for parents to fully educate themselves on their rights and the duties of their local authority in order to become empowered in these situations and to not feel intimidated by threats of fines or prosecution.  The Local Authority, the school and the other professionals involved in your case should be supporting you, working with you to solve the issue, listening to you and taking your concerns seriously and should not be threatening you with fines and prosecution. In fact the local authority should be providing your child with an education at home in the interim rather than blaming you for your child not currently being educated.

Yes, if the child is registered on the school roll then it is in everyone’s best interests, including the interests of the child, for school attendance to be re-established.  However it is not in the best interests of the child for school attendance to be re-established as quickly as possible without the correct support being put in place first.  A carefully planned transition back into the school placement is often also required so that the child can take small baby steps and gradually re build their confidence and trust in the school.

The child with PDA will often only have a very limited ability to be affected by the mistakes of others and not getting things right as soon as possible could cause the situation to become irreversible.  Therefore time is not of the essence but patience and the correct support package is.  A child with PDA who is school refusing cannot be forced into school by their parents due to the huge detriment that this could potentially cause to the child’s emotional well-being and to the long term damage that this could cause.  Mistakes made at this stage could cause the child to become a long term and permanent school refuser, so treading carefully and slowly now could make all of the difference for the child’s ability to attend school in the future.

What you need to do if your child is school refusing.

  1. Inform the school immediately and explain why your child is unable to attend. School phobia, anxiety and depression all fall under health and are legitimate reasons for your child to be off school.  It is helpful, but not essential, to try to provide the school with some kind of medical evidence in the form of a GP note, letter from CAMHS or if your child has a diagnosis of an ASC, specifically stating the PDA sub group or otherwise then this is in itself evidence that your child will potentially have high levels of anxiety.
  2. If you don’t have a diagnosis or any professional input at this stage then make an appointment with your GP with a view to enlist the help and support of CAMHS or other mental health professionals. Simply being in the system and been seeing to be pursuing professional help will assist you to validate what you are reporting to the school re your child’s mental health issues.
  3. Keep all contact with the school via email so that there is a paper trail of your efforts to keep the school informed. Also keep the school informed of methods that you have tried in order to assist your child back into school and keep them updated of how your child is coping and the steps/measures that you are taking to try to solve this issue.  E.G. GP appointments and so on.
  4. If your child cannot attend school due to a health problem E.G. anxiety, depression, school phobia or school refusal, after 15 days the council must intervene and provide a suitable education. The education arranged by the local authority should be on a full time basis, unless, in the interests of the child, part-time education is considered to be more suitable.  This would be for reasons relating to the child’s mental health. The local authority should provide a minimum of five hours per week but in the case of a school refuser or school phobic councils should not assume that this is adequate.  The hours allocated to a child should be regularly reviewed and adjusted in accordance with how much the child can manage.
  5. Apply for an Education, Health & Care Plan assessment in order to access support and funding for your child within the school placement. This is likely to be initially refused but then follow the process through. Request mediation and if this fails request a mediation certificate and appeal the decision.  It can be a long road and many doors will shut in your face but each time one does just pick up the baton again and keep going until another door opens.  For many children with PDA maintaining a healthy attendance record at school while simultaneously ensuring that the child’s emotional well-being is being adequately catered for may require additional funding and support in the form of an EHCP.

The source for this information is ‘Local Government OMBUDSMAN – Out of school…….out of mind? Focus Report:  learning lessons from complaints. Focus-report-Out-of-school-Sept-2011 I would advise any parents who are experiencing issues leading to school refusal or who are considering removing their child from school until appropriate provision is put into place for their child to read this document fully and in depth.
www.lgo.org.uk

This report also features lots of other advice and information re other reasons why a child may not be in school and what the duties of the local authority are, including if the child has being permanently excluded.  It also features very useful and informative case studies of when local authorities have not responded accordingly with their duty to provide a suitable education for children who are out of school.  If the local authority fails in its duties to provide an education for a child who is out of school they can be prosecuted and the parents can receive compensation.

Thank you for reading this post.  For more information please visit http://www.pdaresource.com/ and http://www.pdasociety.org.uk/

I began writing this blog nearly two years ago, my how time flies.  At that stage the worst and most debilitating years in our PDA journey were thankfully behind us and this blog detailed the journey of our recovery.  I say ‘our’ because it has seen improvements and many changes for both Mollie and me.

Two years ago we were both, crushed, broken and battered (not literally) by each other and by the system. Two years later and we have a much more positive story to share and to tell.

Mollie has being making sudden and dramatic improvements which have truly exceeded my wildest expectations.  Following two years of hard slog, taking one step forward followed by two steps back and times when I truly never thought that I would see the light at the end of the tunnel I am pleased to say that I am now positively basking in the warm glow of the light.

The real big changes have come in just the last few months or so.  It could be that puberty has had a major influence in this or it could be a combination of very many factors coming together and finally pulling in the same direction all at once.  Two years of social and demand detox combined with an all round holistic approach and maturing years may, finally, be beginning to really pay dividends.

Mollie is generally far, far happier and her emotional well being is far improved from what it once was.  She is now able to socialise and to interact much more successfully without feeling the need to, or perhaps with now being able to supress her need to control all interactions.  Large family occasions which would have at one time being either avoided or would have ended in disaster are now being achieved with ease and with regularity.  Christmas day was a huge success and passed by without incident.
 photo 20141225_145431_zpsdkydztgw.jpg

Our glass fusing project is coming on in leaps and bounds and I will shortly be booking our first craft fair. Making these items is so deeply calming and really helps to clear my mind.  Mollie occasionally joins me but this has really turned out to be my pastime but my mental health is important too.  Mollie fully intends to join me when we sell the goods though and to pocket half of the cash ha ha.  This will give her more social exposure and the chance to converse with other people.

 photo glassart 222_zpsbsyrs8wl.jpg

Mollie also beginning to show much better control, in general, over how she deals with stressful situations and also awareness and empathy to those who may be affected.  She will often apologise if she has being snappy and explain why or how she was feeling at that given moment.

Only last night she had attended an event that she had found stressful and she showed great awareness of her internal state and demonstrated her own problems solving techniques for helping to overcome this.  She told me that she was stressed and asked if we could call in Aldi on the way home so that she could get some ice cream as this would help to calm her down.

During meals out if she is stressed, rather than exploding, she sits under the table.  Either Lee or I will pick up on this and ask her if she would like to go outside for a breather.  If we are at a family gathering at my mums she will ask me to go and relax in my mum’s bedroom with her if things are becoming too much and of course there is always the option of coming home if dealing with things are becoming impossible for her.

Mollie had her bedroom redecorated just after Christmas and she handpicked everything.  Since then she has being sleeping in her own room and going up to bed by herself. She has had her computer, XBox and everything else transferred into her room which is now a place that she refers to as her own special retreat.  Just recently she has begun playing online with her peers and she is doing remarkably well and does not appear to be over bossy or argumentative with them.

Within the last few weeks she has had her hair dip dyed at the hairdressers and the bleached ends have now being coloured with Pink dye.  She has being going out more regular and she has become a very entertaining companion for me.  We are enjoying shopping trips, walks with the dog, meals out and so on.
 photo ac88ff48-e42b-430d-892c-e9f55b709e0d_zps1ec0exwv.png

She has also recently accessed the following service in order to try to help her meet other children of a similar age and to establish some friendships.  She has only being to one social night but it went very well and she came home beaming.  She found the ‘Wellbeing Workshop’ very difficult due to being expected to discuss her feelings which isn’t something that she is comfortable with at all.  But it is still good news because she at least has access to social nights and outings.  This is a major achievement for her indeed.

http://www.changes.org.uk/html/young_people.html

Mollie is also starting to show a very real and exceptionally good flair for art and she loves photography.  So after two years of radical unschooling clear and positive interests are beginning to become very apparent.  Today we went for a walk to watch the solar eclipse and Mollie also took lots of photos which she wanted to draw in the next few days.

I suggested that if she was interested I could see if there were any local photography and art courses or groups that she could join.  She was very interested indeed and has asked me to investigate this possibility for her.  We then went to town in the afternoon and stocked her up with paper, charcoals, pencils and so on so that she fully stocked ready to start her artwork.  I also advised that perhaps she could set up her own ‘Mollie’s Art and Photography’ facebook page and to post her work on there.

Here is some of Mollie’s recent artwork, all drawn completely freehand. If she can achieve this at only 11 years of age then the possibilities for the future really are endless
 photo 20150320_174308_zpsefefmosq.jpg
 photo 20150320_174240_zpssczv88cz.jpg
This is Mollie’s self portrait.
 photo 20150320_174252_zpstl77oyxx.jpg
This is Ann, her personal assistant and respite provider for me.
 photo 20150320_174300_zpszapfcim9.jpg

This is her birdhouse that she built herself from flat pack and painted. The designs on it have being drawn freehand by Mollie.
 photo 20150320_174233_zpsskrvlfy6.jpg

We both find ourselves so much happier and calmer than either of us have being in years.  I really feel that we have seen dramatic and sudden progress on the back of a very slow burn.  I am beginning to finally see a future for Mollie, I am beginning to dream of what I never thought would be possible.  With how things are progressing I can see no reason why she shouldn’t be able to manage some type of part-time college course for art, photography or design by the time she is sixteen.

Thank you for reading this post and for more information on PDA please visit

http://www.pdaresource.com/

http://www.pdasociety.org.uk/

Traditional ‘Rewards and Consequences’ (as they relate to an individual with PDA)

It is fairly well documented by professionals, experienced in Pathological Demand Avoidance Syndrome that rewards and consequences do not tend to help the individual with PDA to modify their behaviour or to comply with requests or demands.  That being said, there will always be exceptions to the rule.  Even an individual, for whom this approach would usually be met with resistance or even anger, may occasionally take the bait and be able to comply in order to achieve the reward.  This may wrongly lead others to assume that rewards and consequences do have their place in successful PDA management.  But the reality of the situation may be that the reward only worked today because the individual’s anxiety levels allowed him to comply, rather than the reward being the pivotal feature. The difficulty with rewards and consequences is that results can often be short lived and may seldom produce any long term benefits or changes.   Also the use of rewards and consequences can, in many cases, actually cause an increase in challenging behaviour and appear to make it even more difficult for the individual to comply.

Possible Reasons Why Rewards and Consequences Do Not Tend to Work for Individuals with PDA

The most important reason may be that the individual simply can’t do what is being asked of them, regardless of the reward or the consequence that is on offer.  High anxiety and an instinctive need to avoid and to be in control at all times may simply override the ability of the individual to change who they instinctively are, in order to receive a reward or to avoid a consequence.

The individual may desperately want the reward or may desperately want to avoid the consequence but simply can’t, rather than won’t, do what is being asked of him or her.  Does offering rewards and consequences work as a successful strategy for making an individual with an eating disorder compliantly eat food?  Does offering rewards and consequences work as a successful strategy for helping the individual with OCD to stop obsessive thoughts, eliminate compulsive behaviour, that they need to do in order to reduce stress and feel calm, or to do things that their OCD may prevent them from doing so like swimming in a public pool that, in their eyes, is a pool of contamination?

I think that the answer on both counts would be no, because these individuals have complex mental health issues that need careful intervention and therapy.  Rewards and Consequences seldom help the individual with PDA to comply or to moderate their behaviour because, just like the individual with OCD or an eating disorder, they also need careful intervention and a different method of reaching and helping them to adjust challenging behaviour that stems from high anxiety, caused by a neurological condition.

The child with PDA may often feel like an adult and has difficulty in understanding why they are not allowed to have the same rights and choices as an adult.  Why do we expect children to never show the same behaviours that adults freely exhibit like being grumpy, short tempered, using bad language, shouting, having control over their own lives and so on.  The individual with PDA may feel deeply offended and patronised by being treated like a child, which is essentially who ‘rewards and consequences’ are typically aimed at, as a strategy of behaviour modification.  We don’t expect adults to have a reward chart on the wall where every aspect of daily life and behaviour are either rewarded or reprimanded with a consequence and so I guess that children with PDA do not expect to have this either.  I must say that I can see their point.

The individual with PDA may feel that a reward or consequence is deeply unfair and unjust if the thing that is being asked of them is something that they simply can’t achieve, due to high anxiety about complying, rather than being something that they simply refuse to do due to bring wilful and defiant.  Mollie has described rewards and consequences as nothing but blackmail and that the use of them makes her more angry and stressed and even less likely to be able to comply.  The use of rewards and consequences can actually have the opposite effect and make the individual less able to comply due to the applied pressure that the use of such strategies may present to the individual.  Rewards and consequences may only serve to make the individual feel even less in control, by giving the person administering the rewards and consequences the balance of control, having the armoury of the ‘carrot’ or the ‘stick’.

Not only can rewards and consequences be unsuccessful for changing the behaviour of an individual with PDA, they can actually be detrimental to the individual with PDA.  The use of rewards and consequences can be instrumental in raising anxiety levels, which may only serve to make the individual feel even more out of control of his or her own environment which can, in turn, lead to panic and meltdown.

Other Ways to Try to Deal with Challenging Behaviour

This, of course, doesn’t mean that individuals with PDA should be able to display all types of inappropriate or offensive behaviour, because that is not acceptable or fair on other members of the family or society.  What it simply means is that there may be more productive ways of reaching the desired outcome.

Activities that are against the law or pose a health and safety risk to themselves, or others obviously, need to be stopped.  However stopping a behaviour or removing an individual from a situation, where things are out of control for the safety of the individual or for others, is not the same as giving a planned consequence.  We are removing them as a natural consequence to non-negotiable behaviour but we are not then punishing the behaviour itself.

Individuals with PDA often follow rules and laws from a higher power and so, for many individuals, breaking the law is hopefully not going to be an issue.  Using a higher power or health and safety can help to enforce some rules and also a visual rule (e.g. a poster that says do not run at the side of the swimming pool) can be useful, productive and can be utilised for other areas of difficulty.

If the individual feels calm they are more likely to be able to follow simply demands, and so providing the individual with the correct environment is often key to helping produce positive behaviours.  The calmer and the more in control the individual feels, of his or her own environment, is the most likely to be a successful way of reducing challenging behaviour.  Helping the individual with PDA to present with acceptable behaviour is often more about a whole round holistic approach that simultaneously tackles many different angles at the same time, rather than simply trying to discipline challenging behaviour out of the individual.

Key areas to try to help keep the individual with PDA calm and therefore to reduce challenging behaviour

Getting school right and as PDA friendly as possible.

Getting home right with as much of a demand free and PDA friendly approach as possible, within the family unit.

The consistent use of basic PDA strategies by all people and agencies involved with the individual is a must.

Listen to the individual and learn to notice subtle hints that they are not coping and are struggling, and adjust your expectations accordingly.

Reduce triggers that may cause a flashpoint, or think of ways to reduce the stress that these triggers may produce.

Accommodate any sensory issues.

Work on promoting emotional well-being and confidence in the individual, because feeling worthless can cause deep unhappiness which can affect behaviour.

Caveat: I am not a professional and so this information is based solely on my own experiences of living with a child with PDA as well as from many years within support groups, along with advice and literature from professionals within this field and advice from other parents.  I have written this following a request from another parent and it is not my attention for this paper to in any way tell other parents how to deal with their children.  This is simply the method that has bought us the best results and my understanding of how rewards and consequences may be perceived by the individual, and why they appear to be an unsuccessful methods of modifying behaviour for the individual with PDA.

·

A couple of posts ago I wrote about how low I was and how the time had come for me to find time for me again.  I have been battling depression on and off for years and I have had a particularly tough battle with a mix of depression and anxiety for about the last six months.  The good news is that I have taken some positive steps and that I am finally beginning to feel a little bit more like me and less like an empty shell running on auto pilot and fumes.

My way of coping with high anxiety and depression is to recoil from the world and so this is something that I can truly empathise with Mollie on.  Unfortunately this also means that I often need to withdraw from my world of social media and to simply ‘take a break’ while I try to sort my head out.  Thankfully my fellow admins on our ‘Facebook support group’ have graciously and without pressure given me all the time off that I needed from our support group until I was feeling better.  Hopefully I will now be able to make more regular contributions to group discussions and I would like to thank them both for their support while I have been ‘off my legs’ so to speak.

I have found being at home all day, ever day for year after year extremely lonely, isolating and depressing.  It is also extremely hard to keep up the self discipline and motivation that is required in order to stop yourself from falling into a lethargic and can’t be bothered rut.  Once you do fall into a lethargic and what is the point of life rut it becomes even harder to pull yourself out of it and your motivation and self discipline stores become even more depleted.  The more depleted your reserves become the more you fall even deeper into the rut of despair.  It is a dangerous cycle to fall into and a very difficult one to drag yourself out of.  I think that this is also a cycle that Mollie often finds herself in and so I hoped that if I could find the answers for me then these answers could in turn be adapted for Mollie.

The thing that really kicked off a positive thought pattern in my mind which has in turn created a huge amount of enthusiasm was an idea that one of my husbands customers gave to him.  It was an idea and a kind gesture from this customer that has really provided me and Mollie something positive to look forward to and a motivation that makes getting up each morning seem worth while and appealing.

Lee, my husband, designs and makes kilns for glass artists http://www.kilncare.co.uk/.  A couple of months ago he was attending a meeting with one of his biggest customers based in Bristol when one of the ladies suggested that creating glass art may be a great hobby for Mollie to take up.  When Lee mentioned it to me we had a light bulb moment of something really positive that could come out of this concept.  What if Mollie and I tried our hand at glass art and then tried to sell our creations at car boot sales or craft fairs.  Mollie would be able to keep any money that was made and we could use the experience to also keep books showing the cost of materials and therefore what items would need to be sold at in order to either breakeven of even better make a small profit.  If nothing else we could possibly art and craft all day and recoup our costs making it a very cheap hobby indeed.  Glass art is quite an expensive hobby and only one that we can access or even entertain due to my husband working in the trade and him being able to build us a kiln that can be installed at our home.  However the concept in general could be adapted for any budget.  There are loads of arts and crafts packs and sets available on amazon or hobbycraft which could all be utilised for such an idea.  Jewellery making sets, candle making sets, glass etching sets and so the list goes on, the possibilities of what you could create with your child is endless.

https://www.facebook.com/warmglassUK/timeline

http://www.warm-glass.co.uk/

Warm Glass kindly offered to give Mollie and I a crash course for beginners on glass art at their studio at an excellent rate for Lee and with one to one support for Mollie and I.  We booked the course and kept our fingers crossed that Mollie would be able to go.  She was very excited at the prospect because she loves nothing more than to create and make things.  However on the day she was very avoidant, she was tired because she had been awake all night and stated that she just wanted a duvet day but that she didn’t want to let her dad down.  I withdrew the pressure by telling her that she didn’t have to go but that I would still attend and that I would arrange for my mum to stay with her.  I also left her for a while to give her some thinking space but reminded her that if she could manage it she would really enjoy herself but that it was up to her.  A short while later she agreed to get ready and off we set.

We had a wonderful day at warm glass and I can’t thank the ladies there enough for their warm welcome and the efforts that they made to make Mollie feel relaxed and calm.  We made glass snowflakes, Christmas decorations and wall art.  Mollie has already sold her creations to my mum and mine are now part of our Christmas display at home.  The kiln is ordered and I have done a lot of you tube watching, researching all the different things that can be made from glass and how to do it.  I can’t wait to get started and I have a list of things that I want to try to make, starting with very simple creations and hopefully achieving more complex creations with practice, time and increasing confidence.  I shall be starting off by making some pendants for necklaces and then some coasters.  Of course Mollie will be able to have the freedom to choose what she starts off with and long term I think that her creative nature will put my rather feeble one to shame.

Mollie creating glass art

Mollie creating glass art

Our Xmas Wreaths made from glass

Our Xmas Wreaths made from glass

Me and Moll

Me and Moll

Mollie's coaster prior to firing

Mollie’s coaster prior to firing

In order to make room for the kiln and to turn our conservatory into more of an art studio we needed to clear a lot of stuff out.  Mollie is a complete and utter hoarder but she did extremely well and she did manage, due to the reward of having a glass studio, to get rid of a lot of her stuff.  So from my point of view it really is a win, win situation because I can’t stand clutter and so clearing out so much duff stuff really has been an unexpected bonus.

Because I have something to focus on and to look forward to that can be achieved with Mollie I really feel that my mental health and outlook has greatly benefited.  I have more energy, feel less lethargic and I am keeping myself busy on most days doing chores and jobs around the house.  I find that if I keep moving and doing jobs then I am less likely to feel tired and drained, it also appears to keep me more mentally alert.

I have also joined North Staffs Carers in an attempt to mix more with other people and to have time away from PDA.  At the support group many members are elderly and caring for ill partners but it is a place where I can go and feel at home.  We are all in a similar boat but instead of going there to talk about our caring role we go there to forget about our caring role and to have a laugh, a meal or a quiz.  This is just what I needed, a small part of my life for me and one that didn’t include PDA.  They run lots of events and so after Christmas I am hoping to attend more activities especially the art and craft ones which seem really good.  Again, unlike many parents, I am so lucky to have a good support network around me which facilitates me being able to access such opportunities.

Of course all of my plans may go completely pear shaped, such is the nature of PDA.  However even if Mollie drops out of the project this is something that I am determined to pursue on my own but it would be better if we could do it together and turn it into a successful venture that is helpful for both of us.

If you want to learn more about PDA please visit http://www.thepdaresource.com/ and http://www.pdasociety.org.uk/

If you would like to join a supportive PDA Parent led support group then please apply to https://www.facebook.com/groups/pdaglobal/

Also don’t forget that their are two new books due to be published in January 2015 on PDA.  One of which is mine yey!!

 

 

Mollie’s Birthday

On the 12th October it was Mollie’s birthday and she turned eleven years old, time is flying and she is growing up fast.   Birthdays are usually very fraught occasions with tensions running high for weeks in advance.  We will often see a spike in behaviour, more hyperactivity than usual, an inability to focus on anything for long and the need for constant one to one attention as her anticipation of the big day builds into a climax.  On the day everything is always pre planned to Mollie’s exact specifications which we carry out to the letter in order to avoid her any disappointment which can quickly lead to a meltdown.

This year however Mollie was strangely calm in the weeks and the days leading up to her birthday.  I have no idea why we have been spared all of the usual spikes in behaviour this year, perhaps it is a sign of growing maturity, perhaps she is beginning to feel calmer over her birthdays in the knowledge that we will go with her schedule or perhaps it is a complete one off  never to be repeated again.  Whatever the reason we were very grateful for such a calmer time.

Her birthday weekend began with a trip to Alton Towers on the 11th October which was the day before her actual birthday.  She also allowed Jake’s girlfriend to come with us which in itself was a major breakthrough.  Mollie loves to be the absolute centre of attention and so Jake giving considerable time and attention to his girlfriend of ten months was something that I was expecting Mollie to have a lot of difficulty adjusting to.  Initially Mollie resented the attention that E received from her brother and so I explained to Mollie that if we didn’t welcome E into the family that we may loose Jake all together because this would mean that he would be spending more time with E’s family rather than ours.  This was a concept that she appeared to understand and so when Mollie agreed that E could attend her birthday trip to Alton Towers I felt that it was a really important step forward her.  We had left the choice completely up to her and I was pleased that she made a good decision based on her understanding the complexities of the social situation and being able to adjust to it.

The day trip to Alton Towers was a huge success and ran smoothly.  Mollie had complete control over the whole day and she planned what we would be doing throughout the course of the day.  Life is so much easier when your other child is approaching adulthood and can make the necessary allowances and adjustments in order to meet the needs of your child with PDA.  That being said it is important not to underplay the huge amount of micro management, being alert to any possible triggers and detecting and re-directing any subtle signs that Mollie may be struggling that both myself and Lee are constantly doing at all times.  We are like a couple of Meerkats on constant alert and lookout both for external triggers and Mollie’s ever-changing internal state.

1h0j3a6ukfyu8xru9kzuwr8jvg0e2dhzji6ag36nn6f041uetx

Lee and Mollie on Air at Alton Towers

On Mollies actual birthday we had a nice quite morning.  She opened her presents which were far less than usual due to the high ticket price of her main present which, due to the cost, needed to be a joint present from her parents, grandparents and her aunt and uncle.  She had wanted a new touch screen computer with a high spec graphics card.  Again this was another monumental achievement from Mollie because she settled for less numbers of presents due to the cost of her main present.  The concept of money and that it doesn’t grow on trees isn’t one that usually resonates with her.  If she wants something then her obsessional need to have it often overrides any practicalities.  But on this birthday she happily accepted one main gift and the fact that she would have to cough up any monetary gifts bestowed on her to us in order to offset the cost of the computer.

On Mollie’s birthday all focus needs to be on Mollie unless she instructs us otherwise, she needs to feel like she is the centre of the universe and we have long learned that it is far calmer if we are both around on Mollie’s birthday so that we can give her that attention throughout the day.  Consequently Lee did not attend Jake’s football match on Sunday even though he is assistant manager because Moll would deem that football was more important than her birthday if he had of done.  In the morning we played on Mollie’s computer and in the afternoon Ann, Mollies Personal Assistant (PA) came to play with her which Mollie was pleased about.

In the evening we took Mollie, at her request, for a family birthday meal at a pub that she is comfortable in just down the road from our house. The evening progressed very nicely and again I saw important changes in Mollie.  She was no longer needing to control all the aspects of the evening as she had done in the past.  We were allowed to choose our own seats and she did not try to dominate the conversation around the table.  She only sat under the table on a couple of occasions due to her disappointment that Jake wouldn’t, due to shyness, do his ‘Blueberry Bear’ voice in public.

So all in all , this year, due perhaps to a combination of maturing years and the experiences that we have drawn from previous years Mollie’s birthday was a huge success.  Only this time last year she was unable to leave the house and spent her birthday at home with family coming over for a birthday tea and she required far more micro management.  This year she has been to Alton Towers and out to a pub for a family celebration.  What a difference a year makes!

20141012_185923

Mollie’s Birthday Family Meal Obviously Lee is behind the Camera!

 

20141012_195646

Mollie Preparing to Blow Out Her Candles

Thank you for reading this post.  For more information about PDA please view http://www.pdasociety.org.uk/ and http://www.thepdaresource.com/

For everyday advice and support  https://www.facebook.com/groups/pdaglobal/

Follow

Get every new post delivered to your Inbox.

Join 255 other followers