Today is Pathological Demand Avoidance (PDA) Awareness Day

The PDA Contact Group have guest written a post for us – if you are experiencing this with your child, please get in touch.

PDA is a very unknown, rarely spoken about and unrecognised ‘Autism Spectrum Disorder’.  The condition was first recognised in the 1980’s by Professor Elizabeth Newson .  PDA has always existed but it was Newson who first saw the striking similarities between these groups of children and proposed that there was sufficient evidence to warrant the inclusion of PDA as a separate sub group within the ‘Autism Spectrum’.

If you would like to learn more about PDA please click on the link here below.

It is vital that PDA becomes more recognised and diagnosed by clinicians the world over.  Across the UK diagnosis of PDA is still very patchy because it is only recognised in a few Local Authorities.

Attachment-1 At the moment many children are described as having PDD-NOS (Pervasive Development Disorder Not Otherwise Specified), A Typical Autism or Asperger’s along with a host of co-morbid disorders including Personality Disorder, ADHD, ODD, Attachment disorder or simply referred to as just being naughty leading to parents being accused of poor and ineffective parenting.

None of these currently used terms accurately describes or provides parents with the correct understanding or strategies that at PDA label does.  One label, one diagnosis, one profile and one set of strategies and handling techniques, now doesn’t that make more sense than a montage of ill fitting ones?  The National Autistic Society (NAS) and the AET both recognise PDA. It is about time that PDA is recognised throughout schools, practitioners, therapists and the wider community and by organisations such as NICE.

Correct diagnosis essential

The diagnosis of PDA provides parents with the correct profile for their children and sign posts them to the correct support groups and strategies.  This is vital for the emotional well-being and long term prognosis for these individuals.  A collection of ill fitting labels that are mashed together to try and describe the complexities of this child are unhelpful and do not provide parents with the correct sign post.  Early diagnosis, recognition and intervention can lead to a much more successful outcome for these individuals.

There is currently a huge surge from parents and a handful of professionals who are desperately campaigning to raise the awareness and profile of PDA.  Recognition and numbers are growing and PDA is really beginning to snowball with more and more parents joining the PDA support groups and demanding the correct support, help and diagnosis from their local authorities.

The time for change, recognition and respect for parents who do such a wonderful job raising their children, with next to no support from many of the professionals involved has arrived.  The time for change is now and even if PDA is not in a diagnostic manual that doesn’t prevent any one who is a professional from researching the information that is available, having an open mind and seriously considering if any of children that you come into contact with would benefit from the diagnosis and strategies that PDA offers.

New resource page

The following Resource page, very kindly compiled by Graeme Storey, is a one stop shop for everything that you need to know about PDA.  If you are the parent of an ASD child who just doesn’t appear to be typical of an ASD presentation, the parent of a child with extremely challenging behaviour or if you are a professional that is willing to be open- minded and explore the concept of PDA then please click through to this link.  You will not regret it and with an open mind you could transform lives.  The parents and children that follow in my footsteps must not go through the hell and turmoil that Mollie and I have experienced on our journey.

The PDA Contact Group is our flagship forum and group but they desperately need funds to become a registered charity.  When they become a registered charity they will be able to apply for much needed grants and funding.  Long term we are hoping that the PDA Contact Group will be able to update their website, grow and evolve in line with the increasing amount of members and awareness, provide parents and professionals with more support and information and eventually become, to families affected by PDA, what the National Autistic Society is to families affected by Classic Autism or Asperger’s.  Please show your support to the PDA Contact Forum by making a small donation, details can be found here.

Pathological Demand Avoidance group bids for charity status

debroarke

Deborah Rourke with Tania

The most popular post on Special Needs Jungle continues to be about the condition Pathological Demand Avoidance

Last week I met Deborah Rourke, who wrote the post – it turns out she lives close to me so I hope we will see a lot more of each other.

There is to be a PDA Awareness Day on May 15th, and Deborah writes here about the group’s plans.

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Pathological Demand Avoidance syndrome is increasingly being recognised as part of the autistic spectrum. One group instrumental in bringing about this change is the PDA Contact Group,  a supportive website filled with contacts and information.

It has a forum where parents, carers and siblings can ask questions or simply vent their concerns. Our membership numbers over 2000 now and the forum is busier than ever with the number of enquiries for support and information is increasing.

LOGO1It is fast becoming clear that the group must consider the future and start thinking ahead. Awareness and recognition of PDA is greater than ever before and it is perhaps time for the group to develop its role in response to this change in status.
PDA may not have made it into everyone’s vocabulary, but it is on the agenda for being taken seriously by a wider range of professionals.

Our immediate aims are for the PDA contact group to become a registered charity and we are currently campaigning for 15th May every year to become PDA Awareness Day.

The National Autistic Society has put on several informative PDA conferences across the country and we feel workshops and seminars as well as participating at wonderful events such as The Autism Show,at Excel London 14/15 June is the way forward.

With help from government grants and kind donations, our future aims are to ensure accessible information is available in every GP surgery, play-centres, nurseries, schools, to further help raise PDA awareness and provide vital information across the board.

We are very excited and overwhelmed by all the generous offers of help, support, donations; it will provide us with the much needed resources to begin to provide some of the above services.

Please do not hesitate to explore our website: www.pdacontact.org.uk (a new one is on its way, to better manage the increase in demand).

You can now also find us on twitter: http://twitter.com/pdacontactgroup

Other recommended PDA information sites: http://advocate4pda.wordpress.com

http://www.cafamily.org.uk/medical-information/conditions/p/pathological-demand-avoidance-syndrome/
Supportive Facebook group: http://www.facebook.com/groups/7165353156/
National Autistic Society: http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

Can you help with Pathological Demand Avoidance Research?

I was checking the most frequently used search terms that brought people to my site the other day and one of the top ones was “Pathological Demand Avoidance”
I ran an article a while ago by Deborah Rourke about PDA and it still continues to be very well visited, so I know that this is an important issue for many parents who are seeking information about the condition, which is very under-recognised.
I would now like to introduce you to a mum who would like your help as she researched Pathological Demand Avoidance for her dissertation. Hannah Reynolds has a very personal reason for choosing the subject.
** Please see update at bottom**
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Hannah Reynolds

Hi, my name is Hannah Reynolds and I am stuying for a MSc in Forensic Psychology at the University of Portsmouth. I am also mum to two daughters, one of whom I suspect may have Pathological Demand Avoidance Syndrome. I’m fascinated by this condition and, particularly, why some children with PDA behave very differently depending on the environment they are in – between home and school, for example (like my daughter!).

For my dissertation, I will be conducting research into this particular feature of PDA  and am currently looking for people who would like to participate in my study once it is up and running (next year).
So, if your child – with OR without an official PDA diagnosis – shows this difference in behaviour between environments, please send an email to hannah.reynolds@myport.ac.uk and I will add you to a database of participants.
I want to make this as informative a piece of research as possible so please, if this description fits you (or anyone else you know), get in touch!
Many thanks
Hannah 🙂
** Update from Hannah January 2012***
It has been necessary for me to tweak my project proposal (this is common in the early planning stages) and, though I will still be researching PDA, I will be conducting a more in-depth, qualitative study into parents’ and teachers’ experiences of a child with this syndrome. In a couple of months, I will post an update on this website (thank you very much, Tania!) to advertise for participants so please check back for this.
I am very grateful to those parents who have already emailed me and I would like to hold on to all details for any future research I might carry out in this field. Please let me know if you would like your name removed. To any parents who would like to be considered for further research on PDA, please email me – hannah.reynolds@myport.ac.uk – and I will add your name to my database.
Many thanks for your time and don’t forget to keep checking for updates!

Thoughtful special needs blogs, top tips and news you can use

It’s been a busy week for lots of special needs mum bloggers – as you’ll see there are some fabulous, thought-provoking posts from Claire at A Boy With Aspergers and Deb and Aspie in the family, as well as a couple from Lynsey at MummaDuck. I love reading their posts, they’re always interesting, sometimes moving and are a reminder that resilience and strength can be found even at the darkest and most difficult times.

I’ve changed the format this week to give a little taster of what you can find if you click the link and I hope you do, because these articles and blogs are all well worth taking the time to read.

There will be no round up next week as I will be in Sweden talking social media at a meeting of Europe-wide limb difference organisations. It’ll be a chance to meet lots of new people who will all have their own perspective of what it’s like to live with physical disability in different parts of the world.

So make these stories last, if you can! You can also subscribe to this blog via email or on your kindle. Even better now they have new types of Kindle just out or if you have the Kindle app for smart phone or tablet. Enjoy!

Lots of our children have difficulty with laces, especially if they are dyspraxic, and Son2, for one, has developed his own, somewhat unique, style of doing his shoes up. These days it’s easier with velcro straps, but sometimes, such as with trainers or football boots, it’s just not possible. Plus, as they get older, velcro isn’t very cool…

Children who suffer emotional neglect may have a higher risk of chronic cerebral infarction as adults, an observational study found…

I have indicated in previous posts that things have been getting tough with J1 in ways other than his physical disabilities.  I do not mean for J1, but for me…

Epilepsy occurs at a much higher rate in children with the diagnosis of autism. I have a 7-year-old son with the diagnosis of PDD-NOS. After hearing Michael Chez, MD, speak about the high rate (about 66%) of abnormal EEGs in children on the spectrum, I got my son tested…

I don’t think anyone would argue with the fact that our present understanding of autism, with all its heterogeneity, elevated risk of comorbidity and slightly more fluidic expression than perhaps originally thought [1], still remains quite limited…

Despite the success of the London Paralympics, new research has revealed that 86 percent of disabled people who responded to a recent survey think the UK travel industry is still not providing sufficient information about disabled access and facilities…

A few months ago, Special Needs jungle ran an article about Pathological Demand Avoidance by Deborah Rourke There was an incredible amount of interest in this article, written from Deborah’s experience. In November, the National Autistic Society is to hold another conference on PDA…

So the draft legislation has been out a few weeks now and one of the biggest changes that has stood out most to me is that of Compulsory Mediation. As things stand at the moment, A parent can lodge an appeal to the first tier tribunal as soon as the local education authority (LEA) has written to the parent setting out a child’s proposed provision in the form of a draft statement…

My son is continuing to receive home tuition provided by the local authority.  For 4 days a week he receives about an hour of tuition a day covered by two tutors.  It doesn’t sound a lot but this is all he can cope with at the moment…

I begin with my own high point of the month over at Downs Side Up which sent me dashing to my Mac with tears in my eyes, the kind of blog post that is written in 20 minutes because the emotion is so crystal clear…

Rather than David Laws, who took over Sarah Teather’s ministerial job, and much to the relief of many I expect, the SEN portfolio will be managed by Edward Timpson MP who is Parliamentary Under Secretary of State (children and families). Mr Timpson has sat on the Children, Schools and Families Select Committee and the Joint Committee on Human Rights. Until his ministerial appointment he was also chairman of the All Party Parliamentary Groups on Adoption & Fostering and Looked After Children & Care Leavers, vice chairman for the Runaway & Missing Children group…

The Department for Transport (DfT) has launched a consultation on who is eligible for the Blue Badge Scheme when Disability Living Allowance (DLA) is replaced by the Personal Independence Payment (PIP). This is due to happen for people aged between 16 and 64 from April 2013. They are seeking views on three different options…

Conference on Pathological Demand Avoidance

A few months ago, Special Needs jungle ran an article about Pathological Demand Avoidance by Deborah Rourke There was an incredible amount of interest in this article, written from Deborah’s experience.

In November, the National Autistic Society is to hold another conference on PDA. Information on PDA is extremely limited and this event will be a rare opportunity to hear experts speaking on the latest research and best practice. Last year, it was sold out, so if you’re interested and can get to Edinburgh, don’t delay in booking your place.
The main difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. However, because they tend to have much better social communication and interaction skills than other people on the spectrum, they can use those skills to disguise their resistance through avoidance behaviour.
Date: Thursday 15 November 2012
Location: John McIntyre Conference Centre, Edinburgh
Attend to: 

  • hear the latest research findings
  • understand what PDA is and what the implications are if a child is diagnosed with the disorder
  • learn practical strategies for interacting with children with PDA
  • network with other professionals, parents and experts in the field.

This conference will provide professionals and parents with clearer understanding of the diagnostic criteria for pathological demand avoidance syndrome (PDA).

The conference will also feature essential strategies for education, management and communication of children and adults with PDA. Our programme of expert speakers includes:

  • Dr Judith Gould, NAS Lorna Wing Centre for Autism
  • Phil Christie, The Elizabeth Newson Centre
  • Ruth Fidler, Sutherland House School
  • Dr Jacqui Ashton-Smith, Executive Principal, Helen Allison and Robert Ogden schools.

For more information or to BOOK your place, please visit:  http://www.autism.org.uk/conferences/PDA2012

Pathological Demand Avoidance – one family’s story

Pathological Demand Syndrome is increasingly being recognised as being on the autistic spectrum. People with PDA will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control. One mum, Deborah Rourke, has written for Special Needs Jungle about her son, who has been diagnosed with PDA and their fight for support. It’s a heart-breaking story. Please share it as widely as you can to raise awareness of PDA.

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From day one, my son suffered from a bloating and stomach pains, which meant for the first two years of his life he only cat napped for a couple of hours at a time; this extreme tiredness felt like torture. When he was almost 10 months old, a doctor suspected he might have Hirschsprung’s diseasewhich led to him under-going a bowel biopsy and a barium x-ray, results of which thankfully were both negative, but the experience had taken its toll and left him suffering further distress.

He was referred to a dietician when he was 26 months old who suggested I put him on a wheat free, gluten free diet. Less wheat did help a little with the bloating; after a while I put him back on a normal diet reducing his wheat intake. My son had terrible outbursts due to frustration and confusion, head banging on floor, biting, hitting, grabbing and hurling anything he could reach.

His speech was poor; by 19 months he had four words and by 24 months it had increased to around eight. His hearing tests were all good. He used to point for things he wanted, or led me by the hand. His speech started to improve slowly from the age of three. He also had difficulties with his gross motor skills (balance, stepping over objects, hoping, running), an occupational assessment put this down to poor gross motor skills and a stiff gait in his left leg. Mother and toddler groups were a nightmare due to his aggression – he was like a whirlwind of destruction which, of course, resulted in complaints from other parents. This continued on into nursery, where he was put on School Action Plus.

Home life became difficult, in so many ways. His sister, four years older, struggled with the constant crying and meltdowns from her brother, other family members struggled to understand and put his behaviour down to terrible 2,3,4’s, some friends stopped seeing us as they didn’t want him playing with their children due to his aggression. Hairline cracks within my marriage grew into a canyon and I struggled to know what to do for the best.

My son was initially diagnosed with speech and language delay. He first attended a mainstream school with a speech and language unit attached, after only one week he had been permanently excluded on grounds of health and safety the other children. Another smaller mainstream school offered to take him, they even helped to get his statement of needs relooked at, and he was given a full-time one to one teaching assistant. However, after almost four weeks and several incidences, the school admitted they were also unable to cope.

Another doctor assessed my son, she recognised that he had autistic tendencies combined with speech disorder. His statement was adjusted to better meet his needs and then began the search for another school. During that time he remained at home.

So many times I was told, “Your son’s not autistic he gives eye contact”. Other times I was asked, “Does that mean your son is really intelligent?” But more difficult to hear was, “He’s just strong willed, a good smack on the bottom will sort him” A local special needs school was found, actually it was a unit attached to an EBD (emotional behaviour disorder) school. With only five children in the class, one teacher and two assistants, I hoped things would work out for him, it certainly looked that way to begin with.

Then the calls started… “Um, it’s your son’s school here, he’s not having a good day; can you come and get him?” This went on and on, not only was this very negative and disruptive for my son, I repeatedly had to take more time off work. I also saw an increase in his meltdowns, and unfortunately the copying from other boys of inappropriate words (such a the F word). A new term, with new staff, resulted in an incident and once again he was excluded.

After an emergency review meeting, which raised areas of failings by the school, we were back to square one. After three separate school exclusions from three different types of schools, I had to give up my job for a third time. He remained at home for eight months whilst being rejected by many schools. The autistic specific schools we viewed didn’t seem suitable, as his autism was mild. Other schools turned him down because he was unable to access the curriculum, and many schools rejected him because of his aggression.

After a CAMHS report, a Meath School private disability assessment, a battle with the County Council SEN department regarding their failings, an Ombudsman investigation, a newspaper article, some campaigns involving letters to my local MP, amongst others, eventually a new school was found, but is ‘out of county’.

Where are we today now that my son is nine years old?… My son has a condition called Pathological Demand Avoidance Syndrome, which is increasingly recognised as part of the autistic spectrum. He is mentally five years old, with Speech Language Communication Disorder and Dyslexic. He is still unable to access the curriculum, struggles to comprehend simple requests, has no concept of time, suffers from IBS and struggles to understand social play.

He currently goes to a special needs boy’s school who have some experience with ASD, EBD, ADHD, ODD etc. But more importantly, they have a flexible manner with an open-minded approach in a nurturing, calm and inclusive environment. To-date, both my son and his school teachers/carers are coping well and learning from each other every day. But it isn’t plain sailing, as his school is in another county and because it’s almost an hours drive away.

There were problems with travelling back and forth daily, so he is currently weekly boarding at the school, the same as the majority of the other boys. There has been much heartache for me, letting go and trusting in others to care for and understand my beautiful boy, although it now helps being able to telephone him every evening. I also worry about the possible increase in his anxiety levels due to separation from the family.

There certainly have been some positives, my daughter is calmer and happier and we have respite time together during the week and it has been lovely to be able to focus 100% on her for the first time in years. Although the children’s father and I have separated, we remain living near each other, have become good friends and he has a wonderful relationship with his children and is fully involved in their lives. We both feel that our son has given us the opportunity to look at life with huge appreciation for the things that many people take for granted.

Our son has been our teacher, we have learned the art of patience, acceptance, to be open-minded, to look closely at ourselves and how to interact in a new way with both our children. My son helped me to realise who I am and what I am capable of; he gave me my voice, he helped me find my inner spirit, strength and passion, and has made me a better person. I am a strong advocate for autism and am in relentless pursuit to raise awareness about PDA.

What can PDA look like…

  • Panic attacks /challenging behaviour:  

Aggressive outbursts, kicking, biting, spitting, hitting, swearing, screaming, throwing things (fight or flight, often with no obvious triggers)

  • Communication abnormalities:  

Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context

  • Social communication:

Inappropriate play, lack of turn taking and difficulty understanding social rules and requests, difficulties knowing how to react to another person’s behaviour, difficulties accepting that there may be other perspectives, not just a single perspective, limited gesturing

  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and low self esteem
  • Sensory issues / overstimulation, materials, noise, sunlight, temperature, food

Early History of PDA Elizabeth Newson first began to look at PDA as a specific syndrome in the 1980′s when certain children referred to the Child Development Clinic at Nottingham University appeared to display and share many of the same characteristics. These children had often been referred because they seemed to show many autistic traits but were not typical in their presentation like those with classical autism or Asperger Syndrome because of the child’s imaginative ability, especially in non-echolalic role play; often the child seemed unusually sociable, though in an “odd” way, and language development was atypical of autism and less pragmatically disordered than in Asperger’s syndrome. They had often been labelled as ‘Atypical Autism‘ or Pervasive Developmental Disorder – Not Otherwise Specified. Both of these terms were felt by parents to be unhelpful. She wrote up her findings in several papers based on increasingly larger groups of children. This culminated in a proposal for PDA being recognised as a separate syndrome within the Pervasive Developmental Disorders in 2003 published in the Archives of Diseases in Childhood.

http://www.pdacontact.org.uk/ | http://www.facebook.com/groups/7165353156/  | http://adc.bmj.com/content/88/7/595.full | http://advocate4pda.wordpress.com/2012/02/05/wikipedia-for-pda/  | http://www.youtube.com/watch?v=QwtkzBoY01M

Above is a photo of my wonderful son, and below, a photo taken at the National Autistic Society Spectrum Ball, where Tony Hadley (Spandau Ballet) kindly agreed to have pictures taken to help raise awareness for children with Pathological Demand Avoidance Syndrome.