It is a pervasive disorder related to, but significantly different from Autism and Aspergers Syndrome according to Elizabeth Newson (the person who first noted that a group of children who had been diagnosed with ASD - non typical or with PDD NOS had a number of common behaviours/ traits and who discovered (some 20 years ago )PDA

http://adc.bmjjournals.com/cgi/content/full/88/7/595

the national autistic society have a slightly different opinion:-

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=306&a=3352

I am interested to hear others opinions on PDA

Regards

:bat: (these are from J, my son - he really likes choosing smilies!)

I am a PhD student at the Institute of Psychiatry, part of King's College London. I am writing to ask for your help with a postgraduate research project I am conducting comparing children with diagnoses including autism spectrum disorders, ADHD and emotional and behavioural difficulties, to children with “Pathological Demand Avoidance Syndrome” (PDA) on a questionnaire completed by parents.

PDA is a term applied to children who persistently resist and avoid even simple demands and requests. If pressed to comply, they may behave in extreme ways, such as flying into a rage or having a meltdown, or adopting a role or persona. Some are adept at using distraction or provocative behaviour to divert attention away from a demand, and many need to be 'in charge' at all times when interacting with others.

Children with PDA often have difficulty judging how to respond appropritely in social situations, being far too bossy and controlling of peers, and not recognising social boundaries or age-appropriate behaviour. They are sometimes said to remind people of autism, though can be much more difficult for parents and schools to cope with. Approximately 50% of individuals with PDA are female. As PDA is not included in official diagnostic manuals (e.g. the DSM-IV), parents find that support for children with this profile is lacking and their concerns are not taken seriously. Research is required to raise awareness of PDA, and discover how best to help children with this profile.

I am looking for parents with children aged 6-17 with diagnoses of ASD, ADHD, Oppositional Defiant Disorder or Tourettes etc. to complete the questionnaire, to see whether individuals diagnosed with PDA (or in whom parents suspect it) score higher on the measure than these other clinical groups, who share some features in common with PDA. This questionnaire will be used in research and also made available to clinicians.

If you would be willing to take part, or would like to have a look at the questionnaire, please visit my national autistic society recruitment web-page to download a copy.

http://www.autism.org.uk/en-gb/get-involved/volunteer/take-part-in-surveys-and-research/research-recruit-people-or-participate/research-projects-children-and-young-people/pathological-demand-avoidance-questionnaire.aspx

Thanks for taking the time to read this request.

Liz )

______

http://www.iop.kcl.ac.uk/staff/profile/default.aspx?go=12616

My question to anyone who has any experience of PDA is this... Are there any links to soiling? My daughter soils regularly, 4-10 time daily. She had fecal impaction and spent a week in hospital last year. She now take Sodium Picosulfate daily and whilst we can have an occasional good day the majority are bad. She refuses to go to the toilet when she needs to, prefering to soil anywhere, although never while she is sleeping. She fits so many of the other criteria but I can't seem to find anything on toileting being a factor....

-----------------------------------------------------------------------------------------------------------------------------

Just to let you know that there is research going on about PDA at King's College London. They have developed a questionnaire about PDA (with the help of the Elizabeth Newson Centre) for parents to fill out about children aged 6-17. It doesn't matter if your child doesn't have an official diagnosis, please fill it in anyway!

If you would like to take part, please go to this link:

http://www.autism.org.uk/en-GB/Get-involved/Volunteer/Take-part-in-surveys-and-research/Research-recruit-people-or-participate/Research-projects-children-and-young-people/Pathological-Demand-Avoidance-questionnaire.aspx

If you want to know more about the researchers involved (Liz O'Nions and Francesca Happe), here are their staff profiles.

http://www.iop.kcl.ac.uk/staff/profile/default.aspx?go=10942&local=True

http://www.iop.kcl.ac.uk/staff/profile/default.aspx?go=12616&local=True

Research is the way to get PDA to a wider audience and more accepted among clinicians, so please do fill out the questionnaire.

How do you deal with a child that is so obsessed that you cant go to the bathroom without them foloowing you and asking what you are doing every 2 seconds?

http://www.donnawilliams.net/pathologicaldemand.0.html?&no_cache=1&sword_list[]=avoidance

#8 PDA Education and Handling. "Strategies"

latest PDA video about Strategies, very useful and also entertaining, particularly the top 10 tips at the end. Forward on to any parent, education or other professional who works or cares for a child with PDA!

videos 6 and 7 in the series are well worth watching too. They are all based on information and tips given in guidelines/ conference and research papers issued by the Elizabeth Newson Centre and other professionals who work with children who have this diagnosis.

It will be on the 26th Jan. 2011.

No detail as yet but you can register interest and I will let you know when more details are released.

http://www.autism.org.uk/News-and-events/NAS-conferences/Our-forthcoming-conferences/Pathological-Demand-Avoidance-Conference.aspx

Pathological Demand Avoidance Syndrome. Come and chat with other parents at the Carers Centre,

7 Bells Court,Bells Square, Sheffield, S1 2FY 0114 2788942

(On-street parking on Trippet Lane near Cubanaʼs costs about £2.20 for 2 hours but is limited)

Friday 1st October 2010 morning 10-12

Friday 12th November 2010 morning 10-12

Friday 10th December 2010 morning 10-12

Friday 7th January 2010 morning 10-12

I hope i'm still welcome.

i hope you are all ok. I have completely by accident come across something which seems to explain my kids in some way in varying degrees and wondered if you would be able to help...? <'>

Pathological demand avoidance syndrome (PDA)

Has anyone heard of it? got it? has anyone with it in their family?

It was whilst watching Young Autistic and Stagestuck the other night and it was mentioned on there, and the little girl with it reminded me of my sons behaviour at that age. and the levels of avoidance both my sons will go to in order to not do something is unreal.... anyhow, i know there is already a topic for the programme but i didn't want to hijack that thread.

i have googled the disoder and have ended up with a fact sheet which explains my boys.

If you remember kieran is home educated and was diagnosed with aspergers syndrome in 2004. but the reason i no longer find the time to come here and post, is because it really has been a full time job for 2 years and i get no time to "reflect" on what i see as his permanamt avoidance to complete even the most basic of tasks. Whilst my eldest (if you recall) is still undergoing assessment... for???? (even they dont know) they thought he had aspergers too, but his social communication is too good for that, then it could have been ADHD but he seems so calm sometimes, then it was OCD because he was obbsessed with stuf - (brilliant imagination) - now they are looking into Bi polar because of his exessive mood swings, and his belief that he is count dracula.... and......He is nearly 18 now, and is still avoiding his GCSE's (the paperwork i found stuffed everywhere yesterday suggests he'd rather not think about the exams)

Anyway i just wanted to know if anyone else has had any experience with it in case i'm barking up the wrong tree.??

thanks. and take care.

shaz x

1) A Parents Guide to Understanding Pathological Demand Avoidance Syndrome (PDA) - this file name contains "pdainfonew"

2) A Teachers Guide to understanding Pathological Demand Avoidance Syndrome (PDA) - this file name contains "pdateachersguide"

via the following link

http://public.me.com/margoduncan

Hope some of you find them useful,

Regards

D

Anyone got a PDA child? Are they managing in mainstream? It looks like my little one will need a specialist placement but there's nothing out there for PDA.

There is some information on the PDA group site but not much and the forum doesn't seem much used.

It feels like a lonely diagnosis compared to ds#1's dx of AS some years ago

CONFERENCE

Tuesday 15th April 2008

Richard Herrod Centre, Carlton Nottingham (Millennium Suite)

9.30am to 3.30 pm

Children with PDA and PDA traits present a particular challenge both at home and at school.

This event will allow you to develop an understanding of PDA and the reasons for many of the behaviours that these challenging young people display and also offer practical strategies for supporting PDA children at home and in the classroom.

The day will be made up of two sessions. The first will be presented by Mandy Haxby.

Mandy Haxby is the project Manager of The Maze, a registered charity that provides support for families with children on the Autistic Spectrum. Mandy is the mother of a teenager with Autism and PDA and has delivered training on many subjects including PDA. Mandy has been funded by The Community Champions Fund to deliver training on PDA and produce literature for both parents and professionals.

This First session will introduce you to PDA, its characteristics and the reasons behind the behaviours we see. Using some of her own personal experiences Mandy will talk about how managing the environment has been the key to managing her child.

The afternoon session will be led by Fiona Speirs.

Fiona Speirs is former Assistant Headteacher at Rosehill School in Nottingham, a school that caters for pupils on the autistic spectrum. She now works on a part time basis at the school having decided to focus on training and consultancy work as there has been an increased demand for her to do this over recent years. Fiona has extensive ?hands on? experience of working with young people with learning difficulties and ASD in particular, having graduated in 1985 with a B.Ed 2(i) Honours degree in Special Education. In addition to gaining the Advanced Certificate in Education relating to ASD awareness, Fiona has also attained qualifications relating to skills associated with Counselling, Mentoring and Coaching and has used these to enable her to work more effectively with more able young people on the spectrum. She has many years experience of working with young people who present as having specific difficulties associated with the diagnosis of PDA and is often asked to train around these issues.

The afternoon session will offer practical strategies to help and support PDA children in the classroom.

There will be an opportunity for questions at the end of the day.

Refreshments and a hot Buffet Lunch will be provided. Please let us know if you have any special requirements on the attached Booking Form,

The Cost of this event is??

�100 for professionals

�50 for parents

***

sorry I've lost my other laptop with all my details on and the email I registered with no longer exists so I've had to re register.

Mandy

Minxygal

*** Edited to remove contact details: please pm apple/minxgal for further information - thanks: K.

Supporting a child with PDA

(Pathological Demand Avoidance)

Children with PDA often present very challenging behaviour and many of the strategies that would prove helpful for a child with Aspergers Syndrome or autism that doesn?t show traits of PDA, will only work for a limited time or even prove totally ineffective.

For a child with PDA control is really important and understanding this and the reasons for this need for control will make it much easier for you to work out strategies that will allow both you and your child to handle new situations.

A lack of control for these children brings about extreme anxiety. Many of them will look at a situation and build around it a multitude of fears and stresses based on what potentially could happen to them while in a particular situation. Many children will create a ?worse case scenario? and it will be this that will convince them that they do not want to, or are unable to participate. Children often create this ?worse case scenario? when challenged to complete tasks that are within their capabilities. Often poor self esteem and low expectations of themselves will cause them to ?switch off? or create an avoidance.

Not having control of a situation brings will it a whole host of new anxieties.

?If I don?t have control then who does? Who?s going to keep me safe??

Letting your child know that when they don?t feel as if they have total control, you do, can help to reassure them.

?Whatever I ask him to do he does the opposite or just flatly refuses or says that he can?t?

Doing what you want them to do is often really difficult for your child. If they are doing exactly what you want them to do they are giving you control and of course that brings with it all those dreaded anxieties. It is often much more effective to try and find a way of getting them to do what you want them to do but in a way that allows them to feel that the decision has been theirs and therefore they still have control over what they are doing.

Obviously it?s important that your child does what you need them to do so maybe giving them options and allowing them to make their own decision may help.

This is where you have to learn to be cunning and makes sure that both options will get them doing what you want them to do.

Children with PDA often struggle with authority as they just don?t see that there is a difference between parent and child, teacher and pupil and unfortunately because of this confrontation often results in aggression, both verbal and if not de-escalated effectively, physical.

Giving a PDA child responsibilities can be a really effective way of helping them cope with new situations because not only are you providing them structures, you are also giving them a certain amount of control that may well be enough to help them cope with a situation.

This might include giving them the responsibility for a younger child on a day out. It may be that this strategy will help them cope much better with a new situation.

?How do I help him cope with all this anxiety??

Again trying to make sure that your child has an element of control in a situation is a very positive move. Ensuring that tasks that they find difficult have a beginning, a middle and an end so that they know that although they might struggle at some point it will all be over can help them cope. Children with PDA often respond well to personal praise and often reminding them how grown up they are or are behaving can be beneficial.

I really thought he wanted to go. He said he did.

Be aware that some children have a real fear of confrontation which means often they can feel forced into doing things that they don?t really want to do because they have real anxieties around what will happen if they say no. Unfortunately for parents this often means that after the event there is often an angry outburst that lets them know quite clearly how difficult it was for them.

Many children will try hard to manipulate their way out of a situation they find difficult, for example by pretending to be ill, others will hide or become abusive as a way to avoid a situation. It is important that we always remember and remind ourselves that these behaviours are motivated by anxiety.

The more you learn to understand PDA and the effect it has on your child the easier it will become for you to predict the sort of situations your child might struggle with and you will then have more chance of putting support into place for them. We cannot wrap our children in cotton wool forever and it is important that we find ways to support them but also acknowledge that the only way to get them used to a new situation is for them to experience it.

That said there will be times where no matter how much planning you put into place to support your child they will have difficulty coping. When this happens you shouldn?t blame yourself.

When your child is extremely anxious and feels that they have lost control they will often need to know that you are in control.

You can reassure them of this by talking to them calmly and quietly. If they see that you are not feeling threatened it will help them feel safe.

?He?s really angry I don?t want to make the situation worse?

Try not to be confrontational. Trying to make a point at the time they are finding it difficult to cope is not a good idea as this will only add to their anxieties.

Set strict boundaries and stand by them. It may sound strange but part of the reassurance for your child that you have the ability to keep them safe is often measurable by whether you mean what you say when you say it. For many children your backing down, although you mean well by it, can often be interpreted as a sign of weakness and with weakness come anxiety.

Humour is often effective in defusing a potentially aggressive situation, but make sure that the child understands that you are joking with them, if they don?t it can increase their anxieties.

The child also needs to be interested in you as a person of potential authority in their lives, it is important that you stay calm and detached in heated situations and don?t allow things to become personal. You need to re-enforce ?the rule? which of course applies to everyone and therefore out of your control. This removes any personal element to the situation and it may be possible for you to sympathise with the child, after all we all have to adhere to rules that we don?t necessarily agree with, doesn?t mean we get away with not following them.

Remember that our children have an extreme sense of justice and will find it very difficult to understand when rules are broken or changed for anyone and this can often lead to confrontation and anxiety.

?I don?t understand why he gets so angry?

Remember that the behaviours you are seeing come from anxiety. If your child is aggressive or destructive or verbally abusive it is not because they hate you it is because they are afraid or confused and feel like they have lost control.u

When they are calmer and feel more in control remember that many children feel embarrassed and guilty about the way they have behaved. You need to able to deal with what has to be dealt with, but it?s important you learn the ability to draw a line under what has happened, let it go, get back to normality as soon as possible, with no recriminations. Failing to do this may well take away the control your child has regained and the situation may escalate once again.

In a school environment, where all students are encouraged to accept the consequences of their actions, provided ?the rule? is in place, and applies to everyone, it is not usually necessary to labour the point with the student, most often they don?t need to be reminded of whatever sanctions are the norm and doing so will increase anxiety.

As parents, it?s important to separate the behaviour we don't like, and don't want to reward at the time but our love for them is a separate issue. We love them unconditionally and we need to keep telling them that.

� The Maze 2006

I thought I'd put it here incase it can be helpful for anyone else.

Children with PDA often present very challenging behaviour and many of the strategies that would prove helpful for a child with Aspergers Syndrome or autism will only work for a limited time or even prove totally ineffective.

For a child with PDA control is really important and understanding this and the reasons for this need for control will make it much easier for you to work out strategies that will allow both you and your child to handle new situations.

A lack of control for these children brings about extreme anxiety. Many of them will look at a situation and build around it a multitude of fears and stresses based on what potentially could happen to them while in a particular situation. Many children will create a 'worse case scenario' and it will be this that will convince them that they do not want to, or are unable to participate. Children often create this 'worse case scenario' when challenged to complete tasks that are within their capabilities. Often poor self esteem and low expectations of themselves will cause them to 'switch off' or create an avoidance.

Not having control of a situation brings will it a whole host of new anxieties.

"If I don't have control then who does? "Who's going to keep me safe?"

Letting your child know that when they don't feel as if they have total control, you do, can help to reassure them.

"Whatever I ask him to do he does the opposite or just flatly refuses or says that he can't"

Doing what you want them to do is often really difficult for your child. If they are doing exactly what you want them to do they are giving you control and of course that brings with it all those dreaded anxieties. It is often much more effective to try and find a way of getting them to do what you want them to do but in a way that allows them to feel that the decision has been theirs and therefore they still have control over what they are doing.

Obviously it's important that your child does what you need them to do so maybe giving them options and allowing them to make their own decision may help.

This is where you have to learn to be cunning and makes sure that both options will get them doing what you want them to do.

Children with PDA often struggle with authority as they just don't see that there is a difference between parent and child, teacher and pupil and unfortunately because of this confrontation often results in aggression, both verbal and if not de-escalated effectively, physical.

Giving a PDA child responsibilities can be a really effective way of helping them cope with new situations because not only are you providing them structures, you are also giving them a certain amount of control that may well be enough to help them cope with a situation.

This might include giving them the responsibility for a younger child on a day out. It may be that this strategy will help them cope much better with a new situation.

"How do I help him cope with all this anxiety?"

Again trying to make sure that your child has an element of control in a situation is a very positive move. Ensuring that tasks that they find difficult have a beginning, a middle and an end so that they know that although they might struggle at some point it will all be over can help them cope. Children with PDA often respond well to personal praise and often reminding them how grown up they are or are behaving can be beneficial.

"I really thought he wanted to go. He said he did."

Be aware that some children have a real fear of confrontation which means often they can feel forced into doing things that they don?t really want to do because they have real anxieties around what will happen if they say no. Unfortunately for parents this often means that after the event there is often an angry outburst that lets them know quite clearly how difficult it was for them.

The more you learn to understand PDA and the effect it has on your child the easier it will become for you to predict the sort of situations your child might struggle with and you will then have more chance of putting support into place for them.

That said there will be times where no matter how much planning you put into place to support your child they will have difficulty coping. When this happens you shouldn't blame yourself.

When your child is extremely anxious and feels that they have lost control they will often need to know that you are in control.

You can reassure them of this by talking to them calmly and quietly. If they see that you are not feeling threatened it will help them feel safe.

"He's really angry I don't want to make the situation worse"

Try not to be confrontational. Trying to make a point at the time they are finding it difficult to cope is not a good idea as this will only add to their anxieties.

Set strict boundaries and stand by them. It may sound strange but part of the reassurance for your child that you have the ability to keep them safe is often measurable by whether you mean what you say when you say it. For many children your backing down, although you mean well by it, can often be interpreted as a sign of weakness and with weakness come anxiety.

Humour is often effective in defusing a potentially aggressive situation, but make sure that the child understands that you are joking with them, if they don't it can increase their anxieties.

The child also needs to be interested in you as a person of potential authority in their lives, it is important that you stay calm and detached in heated situations and don't allow things to become personal. You need to re-enforce 'the rule' which of course applies to everyone and therefore out of your control. This removes any personal element to the situation and it may be possible for you to sympathise with the child, after all we all have to adhere to rules that we don't necessarily agree with, doesn't mean we get away with not following them.

"I don't understand why he gets so angry"

Remember that the behaviours you are seeing come from anxiety. If your child is aggressive or destructive or verbally abusive it is not because they hate you it is because they are afraid or confused and feel like they have lost control.

When they are calmer and feel more in control remember that many children feel embarrassed and guilty about the way they have behaved. You need to able to deal with what has to be dealt with, but it's important you learn the ability to draw a line under what has happened, let it go, get back to normality as soon as possible, with no recriminations. Failing to do this may well take away the control your child has regained and the situation may escalate once again.

In a school environment, where all students are encouraged to accept the consequences of their actions, provided 'the rule' is in place, and applies to everyone, it is not usually necessary to labour the point with the student, most often they don?t need to be reminded of whatever sanctions are the norm and doing so will increase anxiety.

As parents, it's important to separate the behaviour we don't like, and don't want to reward at the time but our love for them is a separate issue. We love them unconditionally and we need to keep telling them that.

� The Maze 2006

I know that the Autistic society once published a report that described PDA as autism with malice, not a label I'd openly welcome or agree with but I did wonder how many of you have encounted PDA.