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

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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!

 

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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/

Time to Find Me Again!

Following a rather difficult summer things are starting to return to normal in our household.  Mollie’s attempts to socialise were very successful in many respects but very stressful in many others and completely upset the balance of calm that we had managed to maintain in our household for the past few years. Playing out everyday saw the return of meltdowns, obsessions around people and a complete inability to moderate her behaviour with regard to turning our house into a youth club.  The stress that this placed on my very battle fatigued and fragile emotional state was very damaging to say the least and I am still struggling with depression now.

The good news is that life is now back to normal but the door to the outside world remains ajar.  She will spend days locked in her own world communicating with no one and then she will spend days socialising with all of her family and wanting to engage in activities.  She has actually asked to go somewhere today and just over a week ago she actually went to the hairdressers to have her hair washed, cut, blow dried and straightened.  Now for any of us PDA parents who are few years into this journey we  all know that achieving anything at all in relation to any type of personal hygiene is nothing short of a miracle!

moll

She also, on the odd occasion, will go out to play for a short while with children in the street.  So what was an impossibility prior to the summer is now an option that remains open to her and is one that is under her control. Therefore Mollie currently has access to her family, her Personal Assistant (PA) Ann (funded by direct payments via Social Services), peers of her own age in her street and the opportunity to go out to various activities.

Next week she is going to the theatre with my mum and dad and she is going to be a play critic and write a review for the play in a book that my mum has prepared for her.  That’s the theory anyway, demand avoidance permitting of course.  Getting her to the play won’t be an issue but writing a play review might, however we can but try these things and I think that this is a great idea of my mums because it brings together Mollie’s love of giving her rather direct opinion, role play as a theatre critic and literacy as well.

Life is so much easier and my life is now a doddle compared to many parents who are either only just beginning to tread the PDA journey or have little if any support. So, why oh why do I still struggle so much to simply feel happy.  Why do I appear to spend most of my life feeling low, stripped of confidence, not quite knowing who I am anymore and depressed?

  • Is it a consequence of the journey that I have been on, year after year of being abused by my own child while fighting the Professionals for some kind of support or even recognition of the degree of difficulty that I was and still am experiencing?
  •  Am I just not as resilient or not able to bounce back as well as I assume that other parents possibly do or is this feeling of emptiness the same for everyone?
  • Could the isolation and loneliness of being housebound with a child month after month, year after year be the reason why I feel so lost and without any direction?  I do receive lots of visits and support from my parents and I have a wonderful support network but somehow it just doesn’t seem enough to replace the void that has replaced what my life once was.
  • Perhaps it is the self loathing that I feel when I look in the mirror and see the bloated figure that stares back at me due to trying to black out my feelings by drinking too much wine on a nightly basis.
  • Or do I simply just have a natural tendency towards depression or is it down to a combination of all of the above?

Whatever the reasons I have had enough of feeling low, despondent, depressed and waking up each morning with no direction, nothing to look forward to and simply counting down time until it is wine o’clock.  I do have periods of feeling fine, in-fact, almost bouncy and cheerful but these appear to be very intermittent at the moment and have been for some considerable time.

Life is easier, the huge battles are over and so it is now time for me to sort myself out and to make some positive changes.  I can’t change my life or my situation but perhaps I can become more positive about me, perhaps now is the time that I can re discover who I am, what I want out of life and try to put some positive strategies into place.  I have spent years giving so much to everyone else and putting myself last but now it is time for me to become a person again within my own right rather than just being an extension of PDA.

I derive a huge sense of achievement from writing my blog and from supporting other parents and it is this that has given me a really strong sense of purpose during the past couple of years.  But I need to do more and it has to come from within.  I need to feel proud and happy about myself again instead of hiding in the artificial environment that has become my whole world.

It is time for me to stop relying on the emotional crutch of alcohol, to stop hiding from the world, to loose weight in order to replace my non existent confidence and to find something pleasurable to do that is just for me and that has nothing to do with PDA.  Nothing major just a small hobby or something to while away the hours that is calming and non stressful.  PDA has become my life and it has completely taken away my personality and it has completely and utterly defined who I am. Perhaps this is why I am struggling at the moment because without PDA, the fights, the learning and the battles of those early and troubled years I really don’t know where my place is anymore.

Mmmm perhaps in writing this post I have just hit the nail on the head.  I need to be involved with PDA and I always will be because I almost feel that this has been my calling in life, a vocation if you like, and a road that I was meant to travel.  However now that my personal battles and daily living is not so all consumed by PDA perhaps this is where the emptiness, the void and the lack of direction is stemming from.   Yes, I think that I am starting to get it.  Life with PDA took away everything that I knew and everything that was me, all of me was replaced by the daily battles of living with PDA.  Now that the daily battles and the huge prevalence of PDA in my daily life has become substantially less the void hasn’t been replaced by anything.  Me, as I was, can’t replace it because that person has gone and my life now means that I am limited with what I can do.  The time has come for me to find a new me, a confident me and a positive me with new interests in life.  Hopefully this will be my first step to truly recovering and moving forward with my life from now on.

I do apologise for the ramble and randomness of this post.  I just started writing and as I wrote the words flowed but more importantly I think that in doing so I really do feel that I have found the answer to some of my issues and why I have appeared to be stuck in this rut for so long and getting nowhere fast.

For more information or support about PDA please visit

https://www.facebook.com/groups/pdaglobal/

http://www.pdasociety.org.uk/ & http://www.thepdaresource.com/

The debate between parents and among professionals regarding if PDA is a definable sub group within it’s own right or if this is just another term for a female form of autism, another name for ASC with co morbid Oppositional Defiant Disorder or another label to describe a stand alone ODD diagnosis will undoubtedly continue to be discussed and debated.  At the moment I don’t suppose that there is a definitive answer and many conclusions will come down to personal experiences and opinions which will also be influenced depending on how much in-depth research the individual has done into the subject matter.  Hopefully more research into this area will help to clarify the issue of exactly where PDA stands in relation to other conditions that are already listed in the diagnostic manuals.

It goes without saying that I am of the opinion that PDA is a definable sub group within the ‘Autism Spectrum’ that cannot be explained by a combination of labels that are already available.  As far as I am concerned the PDA profile is a unique cluster of symptoms that cannot be found or adequately explained by putting together a mix and match combination of other labels. More importantly the strategies for PDA management are the only ones that work for many individuals with this presentation. That said this is only ‘my opinion’ based on my experiences of living with a child with PDA combined with the research and reading that I have done and the vast amount of time that I have spent in support groups.  I fully accept that one day my opinion may prove to be wrong but for now I’m sticking to it.

So, personal opinions aside, here is the most relevant information that I can find from highly respected professionals, which should hopefully give many, who are beginning to investigate PDA more thoroughly, a fast track pass to the most informative documents and publications.  Hopefully from this information any parents or professionals who stumble across this blog post, but are in two minds about PDA, will be able to use the information in order to make their own opinions and conclusions given all of the facts and research that are currently available.

So let us go back in time and start at the beginning.

A collection of Elizabeth Newson’s Early Research, Observations and Papers

Pathological Demand Avoidance Syndrome, diagnostic criteria and relationship to autism and other developmental coding disorders; Elizabeth Newson, Child Development Research Unit, University of Nottingham; 1989
http://www.norsaca.org.uk/sites/default/files/downloads/1.1.pdf

Pathological Demand Avoidance Syndrome: a statistical update; Elizabeth Newson; Durham Conference; 1996
http://www.norsaca.org.uk/sites/default/files/downloads/1.4.pdf

Pathological Demand Avoidance Syndrome: discriminant function analysis demonstrating its essential differences from autism and Asperger’s syndrome; Durham Conference; 1998
http://www.norsaca.org.uk/sites/default/files/downloads/1.3.pdf

Communication development of children with Pathological Demand Avoidance Syndrome; Charlotte Graham-White; Early Years Diagnostic Centre, Nottingham; 2002
http://www.norsaca.org.uk/sites/default/files/downloads/1.6.pdf


Published Peer Reviewed Journal Articles discussing the diagnostic features of PDA and the best practice for strategies and management.

Elizabeth Newson et al (2003) Pathological Demand Avoidance Syndrome: a necessary distinction within the pervasive developmental disorder: Archives of Diseases in Childhood
 http://adc.bmj.com/content/88/7/595.full.pdf+html

Phil Christie (2007) The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome.  Guidelines for Good Practice: Good Autism Practice Journal.
http://www.norsaca.org.uk/sites/default/files/downloads/5.2.pdf

Eaton J, Banting R (2012) Adult diagnosis of pathological demand avoidance – subsequent care planning. Journal of Learning Disabilities and Offending Behaviour.
http://www.emeraldinsight.com/doi/abs/10.1108/20420921211305891

Gillberg, Christopher (2014) Commentary: PDA – Public Displays of Affections or Pathological Demand Avoidance?: Journal of Child Psychology and Psychiatry.
http://onlinelibrary.wiley.com/doi/10.1111/jcpp.2014.55.issue-7/issuetoc


Published Peer Reviewed Journal Articles discussing the unique profile of PDA and comparing the features of individuals with PDA to the features and profile of individuals with a more typical presentation of ASC and those with Opositional Defiant Disorder (ODD) and Conduct Disorder (CD).

O’Nions E, Viding E, Greven CU, Ronald A & Happé F (2013) Pathological Demand Avoidance (PDA): exploring the behavioural profie: Autism: The International Journal of Research and Practice.
http://m.aut.sagepub.com/content/early/2014/04/29/1362361313481861.full.pdf

Or here is the pre published version which can be viewed in full without payment.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxsaXpvbmlvbnN8Z3g6MjVjN2U3Y2I5NWUxNWMzMg

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 ;:Journal of Child Psychology and Psychiatry.
http://www.ncbi.nlm.nih.gov/pubmed/24117718

Or here is the pre published version which can be viewed in full without payment.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxsaXpvbmlvbnN8Z3g6N2EyNjMyZmM1NDZjNjI5OQ

O’Nions L and Happe F discuss the differences and similarities between PDA and ODD at the PDA Conferences.  Click on the link and then open up the document showing on the bottom left of your screen and view the slides from conference speeches.
https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=0CCMQFjAA&url=https%3A%2F%2Fwww.edgehill.ac.uk%2Fdocuments%2Fhealth%2Fconferences%2Fcommunication%2FLizONions.ppt&ei=AZ4iVKnyBuWu7Abyi4HoCQ&usg=AFQjCNFemYGRJoz49MdQOQYDh6RHxO8E_Q&sig2=MPaA-uyd3R2NPylH8FophA


Professionals Discuss the Differences between PDA V ODD

A guest post from Liz O’Nions on my blog written prior to the research being published in 2014.
http://understandingpda.com/2013/04/17/an-informative-and-thought-provoking-reply-regarding-the-different-profiles-of-odd-and-pda/

Phil Christie clarifies the differences between PDA v ODD in a question and answer session conducted by the PDA Society to celebrate PDA Awareness Day. Please refer to question Two for this information however question one is a very interesting read also.

http://www.pdasociety.org.uk/what-is-PDA/qanda/phil-christie


Is PDA another name for the Female Profile

Judith Gould Discusses the Overlap and the Differences Between the Female Presentation of Asperger Syndrome and PDA. Click on the link and then open up the document showing on the bottom left of your screen and view the slides from conference speeches.
https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=2&ved=0CCsQFjAB&url=http%3A%2F%2Fwww.autism.org.uk%2F~%2Fmedia%2Fnas%2Fdocuments%2Fnews-and-events%2Fnas-conferences%2Fpathological-demand-avoidance%2Fpda-conference-plenary-session-jacqui-smith-and-judy-gould.ashx&ei=Y58iVKHKJ-md7gbR0IC4Cw&usg=AFQjCNEu4gK0q5ts7pacbPclpUpkrreqUg&sig2=Mww9nqCcvJnGmKvy8FDXng


Information From The National Autistic Society

The National Autistic Society published an article about PDA in their magazine, Communication, in 2009 and later updated their website to include information about the condition. In recent years they have co hosted the annual PDA conferences in conjunction with Norsaca and published an article on PDA by Margo Duncan in their monthly magazine.  The information about PDA on the NAS website is due to be updated in the iminent future.  This update will hopefully reflect that PDA is included in the family ASC as a defianable sub group within its own right.

Phil Christie and Margo Duncan discuss the Features Of PDA
http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx


Published Books

Christie P, Duncan M, Healy Z & Fidler R (2011) Understanding Pathological Demand Avoidance in Children. London: Jessica Kingsley Publishers.
http://www.amazon.co.uk/Understanding-Pathological-Avoidance-Syndrome-Children/dp/1849050740


Forthcoming Publications for 2015

Books
Fidler R & Christie P (2015) Can I Tell You About Pathological Demand Avoidance Syndrome. London: Jessica Kingsley Publishers.
http://www.amazon.co.uk/about-Pathological-Demand-Avoidance-Syndrome/dp/1849055130/ref=sr_1_1?s=books&ie=UTF8&qid=1411557865&sr=1-1&keywords=can+i+tell+you+about+pathological+demand+avoidance+syndrome

Sherwin J (2015) My Daughter is Not Naughty. London: Jessica Kingsley Publishers
http://www.amazon.co.uk/Pathological-Demand-Avoidance-Syndrome-Daughter/dp/1849056145/ref=sr_1_1?s=books&ie=UTF8&qid=1411557909&sr=1-1&keywords=my+daughter+is+not+naughty

Thesis
O’Nions E (2014). PDA Parent Interview. Unpublished doctoral dissertation, King’s College London, London, United Kingdom. Hopefully this will be available to read in full in the near future.  The first chapter of Liz’s thesis is available to read now via the following link. The actual thesis is about 250 pages long.
https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxsaXpvbmlvbnN8Z3g6MWVlYTZjZmY0ZDAyZTg3OA


A Bit of Information about a Few of the Authors of these Publications and Research Papers.

Professor Elizabeth Newson Newson worked closely for much of her career with her husband, John; she established an influential research unit at Nottingham University and became an international expert in autism.

From 1970 the unit focused on training educational and clinical psychologists. During this period she also became involved with Norsaca, a Nottingham-based autism charity, and in 1970 was instrumental in setting up Sutherland House, a school for children with autism based on several sites around Nottinghamshire. She remained involved with the school as an adviser until 2003.

During the latter years of her career Newson transformed the university-based clinic into a diagnostic service attached to Sutherland House which subsequently became the Elizabeth Newson Centre.

Newson first coined the term PDA in the 1980’s to describe a group of children, who had been referred to her, that displayed a unique cluster of symptoms that were similar to Autism and Asperger Syndrome but whose profiles also had striking differences.  However this unique group of children all shared the same profile as each other and the most overriding feature was an obsessive need to avoid the demands of everyday life and to be in control of their environment at all times.

When she was made professor of developmental psychology at Nottingham in 1994, she dedicated her inaugural lecture to talking about pathological demand avoidance syndrome (PDA), a subtype of autism she had identified and that is characterised by an avoidance of the ordinary demands of life. PDA has become increasingly recognised as part of the range of autism conditions.

Newson became an honorary fellow of the Royal College of Paediatrics and Child Health in 1993, and was appointed OBE for her services to children on the autism spectrum in 1999.

Phil Christie is a Consultant Child Psychologist to the Elizabeth Newson Centre (ENC) which provides diagnostic assessments of children from all over the UK and has a particular specialism in Pathological Demand Avoidance syndrome.    The ENC is part of Sutherland House Children and Young People’s Services, administered by NORSACA (a regional autism charity).   Phil was Director of Services and Principal of Sutherland House School for 30 years.  Sutherland House is a non-maintained special school for 94 pupils and students with autism between the ages of 3 and 19.  The school was judged to be outstanding by OFSTED in 2007 and 2011.

The Elizabeth Newson Centre For a number of years Phil was a team leader on the Autism Services Accreditation Programme, reviewing the quality of services for children with autism throughout the UK.  Phil is an Associate Editor of ‘Good Autism Practice’ and previously undertook the same role for ‘Autism: International Journal of Research and Practice’.  He was elected as Chair of the advisory council for the Autism Education Trust and is now on the programme board.  Phil has been involved in conferences, training sessions and presentations on a range of topics related to the autism spectrum across the UK and also in South Africa, Spain, Sweden, Holland, Finland, Romania, Ireland, Belgium and Greece.

Phil also works on an independent basis and has been commissioned to carry out reviews of school therapy services, to provide tailor made training for a range of organisations and carry out individual assessments of children and young people.

Liz O’Nions is a post-doctoral research associate at University College London, working under the supervision of Prof. Essi Viding in the Developmental Risk and Resilience Unit. Before this, she completed a PhD at the Social, Genetic & Developmental Psychiatry Centre, and part of the Institute of Psychiatry (King’s College London). Her PhD supervisors were Professor Francesca Happe and Professor Essi Viding.

Dr Judith Gould is Director of the NAS Lorna Wing Centre for Autism. She is a Chartered Consultant Clinical Psychologist with over 40 years’ experience, specialising in autism spectrum disorders and learning disabilities. Before becoming Director of the Centre she worked as a member of the scientific staff of the Medical Research Council Social Psychiatry Unit and was a Senior Lecturer at the Institute of Psychiatry, University of London. She has also worked as a clinical psychologist within both health and social services. She has published widely in the field of autism spectrum disorders and her research work with Lorna Wing led to the now-accepted concept of a spectrum of autistic conditions.

Essi Viding is Professor of Developmental Psychopathology at the UCL Faculty of Brain Sciences, a director of the Developmental Risk and Resilience Unit and an associate of the Institute of Psychiatry. Viding researches persistent antisocial behaviour and development disorders using cognitive experimental measures, brain imaging and genotyping.  Viding is the 2011 British Psychological Society Spearman Medal winner.

Francesca Gabrielle Elizabeth Happé is Professor of Cognitive Neuroscience and Director of the MRC Social, Genetic and Developmental Psychiatry Centre at the Institute of Psychiatry, King’s College London. Her research focuses on autism spectrum conditions, specifically attempting to understanding social cognitive processes in these conditions

Margaret Duncan is a GP and parent to a child with PDA. She is the national coordinator of the PDA Society which is an internet based group providing information and support for parents and professionals.

Well I am pleased to say that the next six months or so should really provide PDA with a much needed and long awaited for burst of awareness.

There are plans for a TV documentary to air just before Christmas which will feature PDA.  Hopefully if the content is still included the documentary will include footage of the diagnostic assessment at the ENC, interviews with some of the staff at Sutherland House School and an interview with a recently diagnosed adult.  I imagine that the facebook support groups will immediately be flooded by many parents recognising the description and the features of PDA from the documentary as being almost like a mirror image of their own child.

I am really excited to announce that my book is now scheduled for publication in January 2015.  I have learnt an awful lot from writing this book and hopefully I will be able to take that experience forward into my next venture.  It has been a long hard slog but I am oh so nearly there now.  Phil Christie has kindly agreed to write the foreword and the introduction for my book and to also write a frequently asked questions section.  I am thrilled to bits to finally see a little bit of how the finished product will look and the book is now available for pre order.  I just hope that I have managed to do other parents and their children with PDA justice with my account of living with PDA.  I am also hoping that any professionals who reads this book will be hit by the enormity of the task that caring for a child with PDA is and that they may be able to understand the desperate need for diagnosis, recognition, understanding and support for both the parents and the child.

Also in January 2015 we can expect the publication of a new book by Phil Christie and Ruth Fidler from Jessica Kingsley Publishers ‘Can I tell you about’ series.  Hopefully this book will be a fantastic introduction to PDA for professionals, family members and siblings.  It offers to give a real understanding of PDA, from the perspective of the individual with PDA, in a bite size chunk with an easy reading format which makes it accessible to everyone. This could also be a wonderful book for helping your child understand themselves and to feel less alone and isolated.

Please help to spread awareness by sharing this blog post via social media, thank you.

For more information on PDA please visit http://www.pdasociety.org.uk/ and http://www.thepdaresource.com/

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

All or Nothing!

Well it has certainly being an eventful summer, one that has seen Mollie come out of her self-induced hibernation and begin to actively interact with those around her.  However this really has been a double edged sword for both of us.  Following months of socialising she has now retreated back into her own fantasy world.  I should be sad but if I’m honest I’m relieved.  I’m not happy that she has retreated but I am happy that I can have a break from the manic and stressful place that my home had become.

Months of having no control over my own home due to Mollie’s need to have it as an open house for whomever she chose, which was usually several children at the same time, was well and truly taking its toll.  We had put in some early plans but these were constantly being tested and pushed to the limits due to Mollie’s need to please her friends.  Play dates once or twice a week is one thing but every day for hours on end, as the sole adult, in a highly combustible situation really was taking its toll on me mentally and the constant noise was driving me nuts!  Don’t even get me started on the mess, on average, two hours a day was spent simply tidying away the destruction that was left behind following a play date.

So why do you allow it I hear you ask. Well, I simply would not have tolerated this from Jake or his friends but because of Mollie’s lack of friends and isolation I was basically willing to walk over hot coals in order to give her whatever she needed in order to facilitate a social life of some kind or another. Also any attempts that I made to encourage her friends to tidy up would completely freak her out in case having to tidy up their own mess would result in them not wanting to play with her.

I tried desperately to explain to her that this wasn’t the case and that it was normal for a mum to have house rules for play dates and to expect things to be tidied away.  However Mollie really couldn’t grasp how her friends would be able to tolerate such rules without it having a detrimental effect on how they viewed her.  I suppose if complying with demands evokes high anxiety in an individual it may be difficult for that individual to understand that this is not how demands affect others.

On top of the noise, lack of privacy in my own home and the mess I was also finding that I had to deal with a steady decline in Mollie’s behaviour.  She was snappy, abusive and extremely short tempered.  Trying to hold in her behaviours with others meant that Lee and I were facing an increase in backlashes within the home.  Screaming, shouting, and swearing, extreme panic and meltdowns over the smallest of incidents and the return of trashing the house was becoming more and more common place.

All of these factors combining together simply meant that I soon reached my capacity of what I could cope with myself.  Years of dealing with explosive and violent behaviour have greatly reduced my capacity to cope while also remaining mentally well.  The ability to not react and to let things go over my head became greatly depleted and I soon felt the dark cloud of anxiety coupled with depression threatening to visit and to outstay its welcome.

Going on holiday was just what I needed in order to give myself a break from the madness of home.  However as soon as we returned home I struggled to cope with settling back into a rather dreary, monotonous and uneventful existence on one hand but  also filled with high anxiety, noise and stress on the other hand.

Within a couple of days we had experienced several more meltdowns and mine and Mollie’s relationship, due to me not being on top form, was beginning to show cracks.  Instead of remaining calm I was retaliating back to many of her outbursts and quickly losing my own temper.  This is not the way to successfully handle a child with PDA and I would really beat myself up with guilt over not handling her properly.  However I do have to forgive myself for these periods of dyer and crappy PDA parenting because I am only human and wallowing in guilt will not undue what has been done.

Perhaps due to the level that she was struggling or perhaps due to me not coping well at all or perhaps due to a combination of the two things Mollie withdrew and she is currently behaving very well, there is no stress but she appears sad and she is cocooned in her own world again.  I feel very sorry that this has happened but this period of rest really couldn’t come soon enough for me because I was struggling to cope and feared that my cracking point was only around the corner.

I am certainly feeling much, much better due to the breathing space that this break from socialising has given me and Mollie is definitely calmer and not as highly strung.  So where do we go from here,  I guess that I will now restart the process of trying to rebuild things and to encourage her to play with her peers again but in the hope that we have both learned something from the experience which we can take forward with us for when we reattempt the social world.

In an ideal world Mollie would be able to choose to go out to play when her anxieties are low and her tolerance is high.  She would have the mental resolve to reduce the frequency and the duration of her socialising when she is struggling to cope. However this is where Mollie really struggles, it is either all or nothing and she never, ever travels along the middle ground.

Once she begins to play out she instantly becomes obsessed with being with her peers and she becomes almost manic with anticipation.  When she isn’t out playing, perhaps because her friends are out, she cannot settle at all and paces around like a caged lion repeatedly looking out of the window.

When she is playing with her peers she is working so hard, in difficult circumstances, to maintain her friendships and to keep her behaviours and her need to control under wraps that the rising anxiety must become all consuming.  Eventually it has to be released somewhere, released where she knows that, regardless of her behaviour, she will still be loved. Therefore the increasing pressure is often released in the comfort of home and it is usually her dad and I who become the target of the outburst of compressed and internalised stress.

Due to quickly becoming obsessed and manic Mollie’s ability to monitor and to make allowances for her ability to cope or rising anxieties at any given time appears to be non-existent.  Even when she is about to explode she just doesn’t appear to have the mental flexibility to think “things are really getting tough right now, I think that I will go in before I explode and have some calm time”, instead she becomes completely rigid and solely focused on remaining where she is even if her anxieties are going through the roof and the situation is quickly escalating.  So we find ourselves in the situation of Mollie either being completely overdosed on social exposure or being a complete recluse.  The happy middle ground of going out as and when she can cope, when an anxieties are low and monitoring her own anxiety levels at any given time and reacting accordingly to them just doesn’t appear to be something that she can manage.  Therefore we are left in a situation of all or nothing!

I have previously tried the book that can help some individuals deal with this very scenario called ‘The Amazing 5-Point Scale’ by Kari Dunn Buron and Mitzi Curtis.  I have also previously discussed with her via a thoughts diary and strategies of how to more successfully manage these issues.  Although she agrees in principle it doesn’t appear that she can actually put these strategies into practice when the issues arise.  Perhaps, just like many other areas, this is an area that will develop with increasing maturity and that we just need to keep plugging away at it.

Anyway, for now, I will enjoy my rest and replenish my depleted levels of patience, tolerance and emotional well-being.  Hopefully Mollie will use this time to do the same and then we can start the whole process all over again and fingers crossed we can make the next time a little bit less fraught for all of us.

 photo 54956b5d-6683-4830-a3b2-1bd56f728d80_zpsa11fd572.gif

 Please click here to view my You Tube videos about PDA, also on the playlist of videos by Neville Starnes and Mollie xx https://www.youtube.com/playlist?list=PLRVOGwpSi6Q0vgrwgbuQx70eSNsJx_Cn8

 

You Tube Channel

I just thought that I would give a quick introduction to my You Tube Channel.  I have only made three videos so far but I do hope to add to them in time.  I have also made a playlist for the videos made by ‘Bluemillicent’ and for those made by other individuals with PDA including my daughter ‘Mollie’.

Here is the link for my channel https://www.youtube.com/watch?v=-GaodcAp4uw&list=PLRVOGwpSi6Q0vgrwgbuQx70eSNsJx_Cn8&index=3

If you are also interested in joining a supportive facebook group, of which I am an admin, then please apply to the following group. https://www.facebook.com/groups/pdaglobal/

Thank you

xxxx

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