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

Progress On All Fronts!

Well it’s been ages since my last blog post.  The truth is that I haven’t had much to report, everything has simply been rolling on in a rather uneventful way.  Mollie continues to thrive and she now has a much more varied and positive existence.  She is left to do her own thing but with very careful guidance from us it is all working out very positively.

She has even started to do lots of writing, completely under her own steam, in the form of plays, songs and letters to her friends. I have also, in some of her more recent writing, noticed that with no formal teaching at all she has decided to start doing joined up writing.  Her literacy skills have vastly improved and have gone from strength to strength by simply learning naturally.  Of course, she is extremely dyslexic and so her literacy skills will never be perfect but she now has enough capability and knowledge, in this area, to be able to navigate the written word and to be able to respond with her own written points.

Here is a recent example of Mollie’s writing which for an individual with severe dyslexia, and no formal education to speak of from the age of six, is outstanding progress.
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A really important and positive development is that Mollie has decided that she wants to sleep in her own bed!! I thought that the day would never arrive but unfortunately this does mean that I now have to put up with hubbie’s constant snoring and fidgeting instead!  She decided, out of the blue, that she would like a fish tank in her room.  Once the water had settled Nemo and Flipper promptly arrived and, as long as they continue to thrive in her tank, they should soon be followed by two more fish already named, by Mollie, as Champion and Captain. The desire to watch her fish swim about appeared to prompt her to have a desire to be in her own room at night. 

Initially either Lee or myself slept on a mattress on the floor because she was uneasy about the thought of being on her own.  After a very short period she declared that she was quite alright to be by herself and so she now goes to bed at about 11.00pm and stays in her own room all night.  Of course she may often stay awake all night but she is happy, causes us no trouble and this is progression.  None of this was instigated by us it simply came naturally from her, in her own time and of her own volition.

Here are Mollie’s notes on how to look after her fish.
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For my reference she drew me a picture so that I could recognise the fish and call them by their correct names.
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Something that I was dreading with a passion was Mollie starting her periods but I am pleased to announce that it has happened and passed by rather uneventfully.  She completely took it in her stride and with added assistance from me she has coped admirably.  I think that this is a big worry for many parent of girls with PDA but hopefully your girls will take you by surprise just like Mollie has done with me.  She very proudly announced the news to her little group of friends and so those youngsters that didn’t know about periods do now.  Thankfully I had already warned the mum in question of what her daughters may be about to learn.  As ever she was totally relaxed and cool about things.

Mollie continues to play outside with peers and we now have a little group of about five girls who all knock on to play with her.  It is lovely to see her out playing on her bike and her scooter while laughing with other children. However it isn’t perfect because we do have to deal with the stress that this elicits and absorb her anxiety of coping with the outside world when she is in the home.  Her resistance to do anything at all in the home and her abruptness towards me has increased but it is much, much better than it used to be.  Infact the words please and thank you have, without prompting or requesting, become a very normal and natural part of Mollie’s vocabulary.  If she is coping with playing outside and with keeping a lot of the natural her ‘in’ then it is only reasonable to accept that some of this supressed natural Mollie will need to be unleashed inside the home.

While this approach of ‘unschooling’ may not be suitable for all children with PDA I think that it would be hard for anyone to argue with the results that we are achieving by following this very philosophy.  I am not against education and my son still attends mainstream school and does well there.  It is simply a question of following the path that is most suited to the individual involved.  One size does not fit all and I aren’t of the opinion that ‘radical unschooling’ is the best option for every child or every family.  However I do think that it is an option that should be given more credence and not so readily dismissed because it simply doesn’t fit in with normal conventions or trains of thought.  The proof of the pudding is in the eating and it is the final result that this philosophy should be judged on.

Lots of parents in my street have been supplied with Mollie’s personally tailored PDA aware pack in the hope that this will allow her and us as much tolerance and understanding from others as possible.  We only have the odd one or two neighbours that don’t appear to be understanding or tolerant to Mollie’s unique outward presentation and this can cause issues.  However the majority are onside and are extremely supportive and understanding.  For the odd one or two who aren’t then so be it, I have tried but, as they say, it’s no use knocking if there is nobody in.  I am currently cultivating a rhino skin in my airing cupboard so that these few individuals can cease to affect me in the future.

I have sent my letter off to Stoke On Trent’s ‘Clinical Commissioning Group’ requesting that my local authority officially recognise, diagnose and support individuals with PDA.  I’m not expecting any miracles any time soon but hopefully it will at least get those who are in professional positions, in my area, to be forced to at least discuss PDA.  Simultaneously, the timing could not have been better, a fellow parent in my area recently contacted me with concerns that her child may have PDA.   We have collaborated and submitted a complete pack of information re her child prior to her appointment at CAMHS.  The case and my proposal for a referral to the ENC for assessment is water tight with every possible avenue explored and answered.  Anything that CAMHS may potentially throw back at me re this case I am fully confident that I can quickly, efficiently and with knowledge bounce back, it will be interesting to see what they come back to me with.

I have also been doing loads upon loads of work on my book which has been accepted for publication by Jessica Kingsley Publishers who are quite possibly the main autism publishing house.  Fingers crossed my publishers have pencilled in a very tentative publishing date for January 2015.  Phil Christie himself, the world’s leading expert on PDA, has agreed in principal to write the forward for my book which I am absolutely thrilled about.  Obviously he has to read and agree with the contents of my book before he can fully commit but I do hope that I have done the PDA cause proud and that he feels that he can put his name to my book.  I have learned so much about writing a book while simultaneously fearing that I may, at some point, blow my own brains out.  Hopefully I can take everything forward that I have learned to my next book.  My publishers have given me excellent advice and comments and my book is now looking like a much more polished product as a result of their input. However I am sick of reading the damn thing, it’s my story, I know what’s coming next, there are no surprises on the next page and I’ve read it about fifteen times to date!

Some really exciting news is that Channel four are doing a documentary on childhood behavioural issues and that they will be featuring a slot on PDA.  They have already done some filming at the Elizabeth Newson Centre (ENC) and interviewed some of the staff involved in the diagnostic process and Ruth Fidler who is the deputy head at Sutherland House School and speaks at the PDA conferences about the correct education provision for children with PDA.  This is an amazing step in the right direction for the PDA movement, at last, some air time on mainstream TV!

The PDA Army marches on for acceptance and understanding, we will get there eventually!

 

janesherwin:

Thank you to ‘Holes In The Wall’ blog written by Helen Bonnick, a professional who has dedicated her career to studying and raising awareness of child on parent abuse.

Originally posted on HOLES IN THE WALL:

Recently I have been contacted by a number of people also blogging about teenage violence, or about diagnoses associated with children exhibiting violence to their parents or others.

Understanding PDA is a website / blog by Jane Sherwin, bringing a wealth of experience about  Pathological Demand Avoidance Syndrome, including a helpful booklet which explains the syndrome for professionals as well as parents, and sharing strategies that have worked with her nine year old daughter.

Dinky and Me is another personal story of life with a young child with PDA, the ups and downs and telling interventions that have not gone well because of a lack of sensitivity or awareness by professionals.

Teenage Violence at Home is a relatively new site written by a family who adopted three children who had experienced extreme early trauma some sixteen years ago. They now live with the youngest only, following years of what can only…

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janesherwin:

This blog post from Julia Daunt, an adult diagnosed with PDA at the age of 13 by Professor Elizabeth Newson, is so informative, insightful and a must read for anyone either caring for or working with an individual with PDA!

Originally posted on Me, Myself and PDA:

Over the past few months many of you have submitted questions to me and in this post I’m going to try and answer them as best and as honestly as I can. I hope that my answers will give you a little bit more of an insight into PDA, and in turn your own children, but most importantly offer that ‘ray of hope’ that we all seek, so here goes nothing….. :)

Carolyn – How does your attitude to being told to do something differ from when you were a child?

My reaction depends on so many different factors like my mood at the time, who is demanding something of me, why they are doing it and how often they’ve made demands of me before. All these factors, and more, play a role so this is a difficult question to answer. If it’s a ‘needed’ demand like hospital staff telling…

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As a parent of a child with PDA I decided through trial and error to follow a path of ‘Radical Unschooling’.  This means that my child is not controlled by others or by outside forces and that I allow her to be independent in mind or judgement and self directed.  She is free, as much as possible, from external control and constraint.  For a child that avoids all demands made on her to a ‘Pathological level’ this has proved to be a rather successful option for us. By placing no controls over her she has, for the most part, set her own boundaries and her level of general compliance, ability to meet others half way, use of inappropriate language and overall behaviour has improved beyond my wildest dreams.

So what does this actual mean in laymen’s terms?  Well basically I very much treat and allow my child the same rights as an adult.  She does not go to school, any learning is self directed, she goes to bed when she wants, she gets up when she wants and she eats what she wants.

As long as she is not hurting other people or herself, breaking the law, causing mass destruction of property, displaying unacceptable anti social behaviour or emotionally hurting or causing stress and anxiety to someone else then I do not step in.  These are my non negotiable boundaries and even when these are broken, which they invariably are although this is getting less, I do not step in with consequences or punishments.

Instead I choose to support, guide and assist her to modify her behaviour.  So how do I do this without using parental enforced consequences and punishments?

Natural consequences can prove to be useful but these do need to be natural and not ones that I am in control over.  E.G, if she is rude to the parents of her friends they will eventually stop their children with playing with her or if she is rude and hurtful to me I will be hurt and may not want to be with her for a while.

However I can’t leave everything up to natural consequences because although I don’t wish to excerpt parental control over her, because it simply doesn’t work and courses the opposite, I can advise and guide her.  Although this will often need to be done during periods when I am likely to achieve the best results i.e. not when she is angry, stressed or anxious.

Disrespectful Behaviour towards Others
We can discuss why some things aren’t appropriate and how these actions may make other people perceive her.  We may role play so that she can understand the situation from someone else’s perspective with the hope that this may help her to modify her behaviour.  I may empathise that I understand why she said what she said because I understand that she was upset, nervous, anxious or angry and then move onto alternative ways of how this could be handled in the future.

Violence towards Others
If she is violent to other people then we may remove her from the situation.  Not as a punishment but merely because I understand that this is not acceptable for her to be able to do.  When she is calm we can discuss why this isn’t ok, find out why it happened, what were the triggers and how can we think of alternative option for the future.  Simply removing triggers can automatically reduce violent outbursts.

Inappropriate Language
Virtually the whole world swears, you hear bad language everywhere, in the school yard, at football matches, in a family pub at the park.  But we expect children not to either pick up on it or use these words themselves.  I really don’t have much of an issue with swearing as long as it is used in its appropriate place. However this a personal view only and I fully appreciate that for various reasons swearing may be a non negotiable boundary for many families.  I don’t have a particular issue with swearing however that does not mean that I like to hear my daughter swear but I feel that I would be a hypocrite to tell her not to.  So instead I have decided to guide her as to when and where it is appropriate or inappropriate to use certain language.  In the house is one thing but using it outside of the home will not be deemed acceptable by other adults.  In normal conversation or used as an expletive in response to pain is one thing using it to maliciously hurt others is another.   If she was swearing in the street when playing out with other young children or within ear shot of adults I would remove her from the situation if I felt that it was bordering on anti-social behaviour.  There wouldn’t be a punishment for her behaviour but merely a preventive measure out of respect for others. There would then be a negotiation and guidance as to why this wasn’t acceptable.  If she randomly spoke to me disrespectfully or used swear words in a derogatory fashion I would guide her as to why this is not ok.  Words can and do hurt, how would you like it if I spoke to you in that way and so on.  However this may often be done at a calmer time and not instantly.  Other objectives may be my priority at that time.  Funnily enough she has naturally reduced her swearing of her own accord over time and now apologises when swear words slip out a home.

Blatantly ignoring other People’s Needs
Again rather than punishing or enforcing other people’s needs on her we seek to encourage co operation in a different fashion.  We may discuss how the other person feels if their house is not being respected and is that ok.  We may come up with a list of rules together of what would be acceptable to both of us.  Discussing at the same time why we need to eliminate some activities but at the same time still making room for others.  By working together she is learning how to accommodate the needs of others rather than simply feeling that I am controlling what she can and can’t do.

The end goal for me is to have a child that can self moderate her behaviour so that she can exhibit acceptable behaviour in a variety of settings.  For many children this may be achievable by more traditional means of discipline.  However, for my child, these traditional forms of discipline only serve to actually increase the undesirable behaviour.  Taking a very different, radical and unorthodox approach has actually caused huge improvements in my child.  They haven’t been instant improvements, this method has taken time and constant positive reinforcement but the results are there to see.

I think that all parents have the same end goal in sight and that we should be tolerant that there is often more than one method of achieving that goal.  How we seek to achieve that goal is unique to the individual child and the parenting style of the adult.  This has by far being the most successful method for me but I am by no means saying that this would be the most successful method for another individual.  For us the hard line and coming down firm simply does not work, does not reverse undesirable behaviours and does not help my child achieve the best that she can be.

Giving her full control over her life and me actually caused the reverse to happen.  She released the extraordinary amount of control she that she needed over her own environment and reduced her demands on me.

By allowing her to have full flexibility over all aspects of her life she now chooses, for the most part, to fall in line with the rest of the family rather than fight to the death over every tiny little thing that was asked of her.

Our relationship, which I thought was broken beyond repair, is now positively flourishing.  She can still be rude and fly off the handle but will often, without prompting, apologise and explain why she was so highly strung.

The reclusive and depressed child that wouldn’t leave the home for two years and withdrew from all social contact, including that of her family was in a very dark place.  She is now fun, bubbly and appears to be really enjoying life again as well as playing outside in the sunlight.

She appears to be more able to cope with the needs of others and to cope with unexpected disappointment or not instantly being able to have her needs met.

Everything could go all wrong tomorrow but following a total of six years in a very, very dark place the light at the end of the tunnel is now shinning bright.  Mollie will always have PDA, she will always be complex, she will always need to be show far more tolerance and flexibility and she will always be prone to controlling and unpredictable behaviour.  However, for a child with PDA, she is now, apart from the odd exceptions, very well behaved.  This is because I no longer treat her as a child.

Many parents of children with PDA may find that they are forced into this way of parenting due to their child’s complexities, extreme presentation or they may simply choose to adopt this style.  Due to this we felt that there was now sufficient need for a support group with a shared ethos. Because the term ‘Radical Unschooling’ is applied to home educators we wanted to come up with a group name that also welcomed parents who followed this style of parenting while also supporting their children in school.

The PDA Autonomous Parenting Support Group was born and is a group for parents of children with PDA or children who exhibit PDA behaviours who wish to either adhere to or explore this method of parenting.  If you think that this group may be useful for you then please click on the below link and send us a members request.

https://www.facebook.com/groups/296128723884433/

 

 

 

 

It’s not all bad

janesherwin:

I wondered if we could show our support for a new blogger. She is a teenager living with a sibling with PDA. Hopefully if she can keep up the blogging it may become a wonderful resource for other siblings and we can hopefully offer her support to xx

Originally posted on Generalfish:

Well, it’s been a couple of days since Zed had a meltdown so I’ve decided to post some things that I have found can help to stop meltdowns:

  • First, if they seem to be getting angry, I try to let him have more control over what we are doing.
  • Be sympathetic and don’t forget that he finds it hard to think about other people’s views on things.
  • Make sure that you are not being to bossy.
  • Give him plenty of warning when you are planning to do things, like say if you are going to want to do something alone or go out, and suchlike.

Those tend to help with Zed, so hopefully they should help anyone else who has the same problems as me.
Also, if you are a child I have found this good website for talking to other kids who have PDA or have brothers and sisters…

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When I took Mollie out of formal education just over a year ago I quickly realised that my version of education for Mollie needed to be very different to what others would desire or expect me to be doing.  I dumped any forms of academia like a hot potato and opted for a complete and total adherence to a form of education known as ‘autonomous learning’.  Basically we do no structured learning at all and anything that Mollie does want to learn is instigated by her.  I chose this option because, due to her refusal to do anything, it was the ‘only’ option.

I informed the Local Education Authority of my objectives for Mollie and what my priorities were for her.  These priorities focused solely on her emotional well-being and not on any form of academia.

Well one year on and I think that I have reached all of the targets that I had set out for Mollie.

  • Personal Hygiene is much improved
  • Reading and writing has improved ten fold through play with no formal or structured learning
  • Basic mental arithmetic has improved ten fold through play but with no formal or structured learning
  • General knowledge is fantastic and has been acquired naturally with no formal or structured learning
  • Self awareness about her condition and what makes her tick is brilliant
  • Violent meltdowns are now nil
  • She is calmer and happier
  • She is now going out more often and on a more regular basis
  • She has recently made friends with three sisters in the street and plays with them on most days.  It isn’t without incident but each day that something goes wrong we can learn from it
  • Following a period of depression and low self-esteem her confidence is vastly improving and she is beginning to have much more pride in herself

The one area of learning that I do need to instigate for Mollie is her social skills and social awareness.  Especially as she is now back out in the community.  As much as I love her for who she is there are certain aspects of her personality that do need to be reigned in if she is to be accepted by the outside world.  I also feel that the more she understands about herself, how she appears to others and how she can improve her thinking and social skills the less daunting the outside world may appear.  The more successful she is the more confident she will be and so for that success to be acquired a little bit of help in acquiring ‘social skills’ knowledge may be useful.

I have found the following website which has some amazing free downloads and a set of eight really good videos to watch.  I couldn’t have even attempted doing anything like this a year or even six months ago but I am hopeful that now may be the right time.  I have watched all of the videos by myself, made files on my computer for the downloads and I have meticulously downloaded any activities that I think may be helpful.  The more I can learn, know and have printed off, ready to use at a moments notice, the more chance I have of slipping bits of learning in here and there.

To view the videos please click on the link below

http://autismteachingstrategies.com/our-how-to-videos-2/

To view the free social awareness downloads please click on the link below

http://autismteachingstrategies.com/free-social-skills-downloads-2/

The videos are mainly Cognitive Behaviour Therapy videos about replacing negative thoughts with positive ones.  They are very much based around ASD thoughts and I recognise so much in both of my children.  I was watching these, again, within earshot of Mollie while simultaneously laminating and cutting out the accompanying thought bubbles to the videos.  I told Mollie that I was giving Jake some ‘Autism’ lessons to help him when he leaves school next year.  She became jealous saying that I must love Jake more than her.  I told her that she was more than welcome to have some Autism lessons too and that she could share Jake’s downloaded and laminated activities.  She then sat down and watched the first four videos and helped me to cut out the thought bubbles.  She really resonated with the thought and feeling videos and we laughed at how they related to her and Jake.  So by hook or by crook lesson one has been achieved.  When the next one occurs is anybody’s guess but at least I am prepared.

The videos and thought bubbles are primarily based around the bad thoughts that children with ASD can have and how these thoughts can produce really negative and bad feelings.  The idea is to take a negative thought and replace it with a more positive thought so that the negative thoughts don’t stay on top.  I don’t think that Mollie’s first attempt at her own thought bubble was quite what the expert, who has designed these cognitive activities, had in mind.

Mollie’s negative thought is that because Jake is older than her he gets to do everything before her that is dependant on age e.g. watching age appropriate films and so on.  Her positive thought to make her feel better about this situation was and I quote “Jake is a Dick, Fuck, Shit” apparently this thought makes her feel better. Oh dear, back to the drawing board but at least her spelling of certain words is spot on!

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Through watching these videos I have realised just how much the way Mollie processes various thoughts are possibly contributing to her high anxiety, need for control and rigid behaviours.  Perhaps if she can understand to think about some things in a different way it may go a long way in helping her to cope in a more socially acceptable manner. If negative or ‘poison’ thoughts that cause certain feelings and produce certain behaviours can be reduced, replaced or in some cases eliminated then maybe it may make navigating the confusing ‘social highway’ slightly less anxiety provoking.

I have also spoken to Mollie today about how she would feel trying to give up her control for five minutes a day.  My husband has OCD and a regular therapy for OCD is exposure therapy and I do view Mollie’s avoidance of everyday demands and her need for control as being very similar to OCD.  Mollie and I have agreed to try it and to see how it goes, if she can give up control for five minutes she may realise that it doesn’t feel as bad as she is expecting or fearing it to be.  We have done it today, she followed my requests of what I wanted her to do and she said that she felt fine.  Of course, she did revert back to avoiding after the experiment but at least, today, for once, she has complied and not felt anxiety by doing so.

It’s all a learning curve and it’s all unchartered territory.  We shall continue and see where our journey takes us.  Today’s small successes could well be tomorrow’s failures but at least we have tried and we have enjoyed a degree of success even if it only lasts for one day.

 

 

So my new year resolution was to write a book and to appeal to Stoke on Trent authority to recognise, diagnose and educate themselves on PDA.

Well the book is written and my book proposal and sample chapter were forwarded to a publishing house a few weeks ago.  The initial response was very encouraging and they requested to see all of the manuscript before making a final decision. So I am now biting my nails waiting to hear back from them.  If they are not interested then I shall simply look into the option of self-publishing.  However I would much prefer an experienced publisher to proceed with the book for me.

I have also been trying to spread awareness by making ‘PDA Information Cards’ I quite enjoy making these and I am trying to use them to dispel some of the misconceptions about individuals with PDA and to further people’s understanding of this syndrome.

PDAcomplexityR

For this document in a pdf format please click on the link below
PDAcomplexityR

 

pdacriteria

For this document in a pdf format please click on the link below
pdacriteria

So today I have finally decided that the time has come to tackle my local health authority and to try to get PDA on the map in Stoke on Trent.  I have decided to share my letter with you in the hope that it may be a useful template for others who are trying to get PDA recognised by their local authority.

Stoke-on-Trent Clinical Commissioning Group
Herbert Minton Building

79 London Road
Stoke-on-Trent
Staffordshire
England
ST4 7PZ

Dear Members of Stoke on Trent Clinical commissioning Group.

My daughter was diagnosed with an extremely complex and challenging form of Autism called ‘Pathological Demand Avoidance Syndrome’ by Phil Christie at the ‘Elizabeth Newson Centre’ in May 2011.  This condition is neither recognised or understood in Stoke on Trent which meant that my referral was self-funded at a cost of £2600.00 and I have been flying solo in an effort to understand, guide, support and provide my daughter with successful strategies ever since. 

Because ‘PDA’ is not currently included in any of the diagnostic manuals there is much debate between professionals as to if this condition actually exists as a separate sub group within the ‘Autism Spectrum’ or if the profile of these individuals can accurately be explained by the current labels that are already included in the diagnostic manuals. E.G. PDD NOS/Atypical Autism and ODD or Asperger’s and ADHD are two very common ones.

As a parent I can confirm that this condition does exist, that it is very real and that, no, these individuals and their unique profile cannot be explained by a mix and match of other labels which has recently been verified by research (please find enclosed).  The correct label of ‘PDA’ is crucial for understanding the individuals affected and more importantly the PDA strategies are the ‘only’ ones that work.

When Mollie was diagnosed, PDA was not recognised by Stoke on Trent CAMHS or by the ASD Diagnostic Team at ‘The Boat House’ or in fact by any health professionals and sadly I believe that this is still the case today. 

Since Mollie’s diagnosis there has been a growing movement of awareness and research about PDA.  A few years ago a search on google would yield few results but now, just three years later, a similar search will find countless articles, websites, support groups and blogs all relating to PDA.   

PDA is now being diagnosed and recognized in increasing numbers by clinicians, local authorities, social services and education authorities.  Getting a diagnosis and appropriate support for your child with PDA is however very much a postcode lottery depending on your local authority. 

I am appealing to you to seriously discuss and consider the possibility of acknowledging the existence of PDA and therefore being able to offer the appropriate service’s to parents.  Staff within CAMHS and the ASD Diagnostic Team at the Boat House would need to be appropriately trained in order to identify PDA and to offer the correct advice, support and help to parents. 

I have educated myself in all areas of Asperger’s and PDA to a very high standard.  I have single handed, with no support from CAMHS or any other health services, had to educate myself and fight tooth and nail for my daughter’s needs and ours to be met.  I have, without any support from health, been left to independently nurture, teach, guide and support my daughter while also trying to cope with living with a condition that is extremely complex and challenging.  Without the internet and support from parent groups my child would now undoubtedly be in care.  Life did get that bad and was made all the worse because there was no support, help, guidance or education from the very organisations that should have been my first port of call. 

Identifying PDA as a separate and definable diagnosis within the ‘Autistic Spectrum’ puts this profile of children into a collective group with the correct diagnosis, understanding, strategies and the correct signpost for others to follow.

It is absolutely crucial that PDA is accepted and diagnosed in Stoke on Trent.  Without diagnosis, the correct early intervention and adequate support the long term outlook for these individuals and their families is extremely bleak.  This condition is so difficult to live with and would bring the strongest of parents falling to their knees.  Combine this with having to fight left, right and centre to be listened too, understood and helped really is often the straw that breaks the camel’s back.  Until health professionals are ‘PDA AWARE’ how can they possibly offer any support to the individuals and their families affected by PDA.  In fact until they are ‘PDA AWARE’ any support or strategies that they may suggest will undoubtedly just make an intolerable situation completely unliveable!

Why is a ‘Correct Diagnosis’ so vital?

  • A diagnosis of PDA immediately signposts parents to the correct support, strategies and support groups.Parents can research the literature available on PDA so that they can better understand their child as well as support them.
  • An understanding of PDA can help parents to understand what drives the behaviour.
  • The strategies that are successful for children with PDA are unique to this diagnosis. Failure to diagnose a child with PDA means that parents may never have the opportunity to use the correct strategies or to have an accurate understanding of their child.
  • Failure to diagnose PDA can lead to an incorrect diagnosis which neither adequately describes the child, her difficulties nor provides the correct strategies. E.G. Strategies that are usually successful for children with ASD or strategies that are usually successful for children with a conduct problem do not tend to be successful for children with PDA. Possible diagnosis clinicians may give; using the labels that are currently in the diagnostic manuals, in order to describe these children may be ASD with comorbid conduct problems and emotional problems. None of these labels accurately fit the child with PDA and more importantly the strategies are unlikely to be successful.
  • Another incorrect diagnosis that clinicians may use to describe children with PDA is ‘Attachment Disorder’ this can cause huge upset for parents because it implies that the child’s condition is the result of a lack of nurturing within the home, even when there is no evidence of this.
  • The correct diagnosis of PDA means that the child can have the correct provision, support and understanding implemented within an educational setting.
  • Many clinicians don’t believe in diagnosing or ‘labelling’ at all. Instead citing that they believe in looking at the child as a whole rather than as a condition and that simply providing the correct strategies for the individual is the best way forward. I really do not understand this ethos at all. Why waste valuable time trying to find the best strategies for a child when a diagnosis gives you a fast track signpost to the recommended strategies which can then be tailored to the individual child.
  • A set of strategies does not give the parents any understanding of the underlying condition or the difficulties that are driving the behaviour.
  • A diagnosis is enduring over time and will provide understanding, strategies and an immediate signpost for the individual for life. A set of strategies without a diagnosis does not and professionals who come into contact with the individual, in the future, may attempt to make their own diagnosis. They may disagree with previous successful strategies and insist on a return to more traditional strategies in the belief that tried and tested behavioural support has to be the way forward. For the individual with PDA this would be disastrous!
  • An accurate diagnosis of a physical ailment is crucial for the correct understanding and treatment plan. If a child is physically ill it is deemed normal for parents to want to know what the problem is, for a diagnosis to be made and for a relevant treatment that is successful for that illness to be administered. If our child has a neurological condition we want to be shown the same courtesy and respect. We are not trying to label our child for the sake of it. We simply want our child’s neurological condition to be specifically identified so that we can offer our child the best psychological intervention possible.
  • A diagnosis is essential in order to access many services and support. E.G. Social Service’s ‘Outreach Service’, which provides families with precious respite, will not support families whose children do not have a diagnosis. Again, the ethos of CAMHs in some areas, to not assess and diagnose first and foremost baffles me.

I cannot stress enough how vitally important the identification, acceptance, understanding and knowledge of PDA is.  With the correct strategies my daughter is now coming on in leaps and bounds.  We did it our way and it was the right way but what about the children whose parents never understand or find the right way.  They need to be signposted by you the ‘professionals’.

I feel that my daughter and I were extremely let down and neglected by Stoke on Trent Health Services.  Please don’t allow this to happen to anymore families!

“Just because a condition is not in a diagnostic manual does not and should not mean that the condition doesn’t exist.  The official line from the department of health is that clinicians should use their own clinical judgment.  Refusing to diagnose or to accept a private diagnosis of PDA from a professional of impeccable professional standing, not on clinical judgment, but on the omission of PDA from the two diagnostic manuals is choosing to not “exercise clinical judgement”.  In the case of the ICD-10 refusing to diagnose outside of the manuals is to refuse to accept nearly 25 years of research and improvements in practice.  In any other field of medicine (or indeed most other professions) someone who refused to take on board new information and rigidly stuck to the accepted practices of 25 years ago would be struck off as incompetent. In no other field of medicine would it be acceptable to say that we will wait for text-books to catch up with research before we sanction a diagnosis – indeed, it would be a scandal in any other field if referrals were only allowed to clinicians who stuck to treatments that research had shown ‘not to work’ until diagnostic manuals had caught up. “We only diagnose what is in the manual” is not an acceptable or tenable position.
Parental Quote 2014

Thank you for taking the time to read this letter and I can only hope that you do decide to give my request some serious consideration.

Please do not hesitate to contact me should you wish to discuss any aspects of my request. 

Yours faithfully

 

 

Jane Sherwin (Mrs)
www.understandingpda.com
https://www.facebook.com/pathologicaldemandavoidance
https://twitter.com/lifewithPDA
janesherwin@outlook.com

If you would like to download the word document of this letter which you can personalise with your own details then please click on the link below.  This document will also include the research information.
letter to CCG

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