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PDA paper at world autism congress
  • philc
    Posts: 4
    I have been invited to submit a paper on PDA at the World Congress on Autism Spectrum Disorders in Capetown in November. All papers will be published as well as presented at the conference. This is a real opportunity to reach a wider audience and attract others who may be interested in collaborating on research etc.

    I am currently working on the draft which is titled 'The distinctive clinical and educational need of children with PDA: guidelines for good practice'. The paper is limited to 10 pages and I'm afraid won't contain much that is new to those of you who have read the literature so far. It does though give a chance to review the research, criteria and handling guidlines within one publication and to enter the debate about where PDA sits in reation to other pervasive developmental disorders and ASD, which is really important for wider recognition.

    Within the text I am including what I hope are illustrative quotes from paretts and professionals about aspects of living and working with children with PDA. If anyone reading this has a view on what might be important to include I would be very grateful. Especially veiws on...
    How a diagnsosis of PDA has made a difference to your understanding of the child
    What is important in terms of relationships between parents and school-any examples of good practice in this respect.

    The deadline for the paper to be submitted is September 10th

    Thanks

    Phil Christie
    Elizabeth Newson Centre, Nottingham
  • Amanda
    Posts: 281
    I think for me understanding that my sons agression stems from anxiety rather than him willfully choosing to hurt has been really helpful and has meant all the difference when it comes to managing his behaviours. Conventional advice like sticker charts and reward incentives have been something that we have only been able to use for short periods of time as the anxieties surrounding their use, will I/ won't I be able to get my sticker, what if someone gets another sticker before I do have meant that their effectiveness has been severely limited. For us managing the environment and looking at our own expectations has been the most effective way of parenting and understanding PDA has helped us adapt our own thinking to make small concessions which make all the difference for our son.
    Our home life is severely limited and the abuse that our youngest son has suffered as his siblings maln trigger has been hard to cope with, but we have made progress however minimal it would be measured by some.

    Understanding the importance of control with my son has helped us deal with his behaviour more effectively, and that understanding has meant that we are able to take steps to give him the control he needs while still holding enforcing neccessary boundaries.

    Where school is concerned we are lucky that my son is at a school that recognises and understands PDA. Because of this we can work very effectively to provide a continuity both at home and at school that helps to lower Marks anxieties. Over the years we have worked very hard together to make sure that we all stayed on the same team. If a decision is made at school I will instantly back it up in front of Mark, whether I agree with what has been decided or not. ( Of course that doesn't mean that we won't descuss things away from Mark) and they will do the same for us. We have all recognised that Marks anxieties will raise if he thinks one of us, either home or school shows weakness or uncertainty so a united stand is really good for all of us.


    Good luck with the conference :D
  • mango69
    Posts: 967
    Although not formally diagnosed yet (look out for his referral from Sheffield) I am nearly 100% sure he has PDA. It was a huge consolation to find a set of characteristics and criteria that seemed to have been made for my child. After years of reluctant trawling through ASD diagnostic criteria and really feeling that something didn't sit right, here was a tailor-made paper on my child. It was also comforting to know that there were other children like mine and that other parents must have gone through the same as us not knowing why he was like he was and thinking it must be the way we were bringing him up, yet failing to succeed despite reading and implementing every parenting book going. I bet everone in this forum has at least 4 parenting books that they bought and threw away - except for Ross Greene whom I think has saved my life! It has also been a helpful factor in choosing a different school. Imagine my relief when I tentatively asked the new school if they had ever heard of PDA and they said "Oh yes we have a child here with that already".Hope to meet you soon and I hope the conference goes well.
  • Pamela
    Posts: 205
    For a long time we couldnt understand our daughters behaviours. She has a chromosome disorder and one of the characteristics is autism. There are many things about her behaviours that are autistic but there was just something more. We needed to know what in order to understand her fully - or so we thought! Having the diagnosis of PDA did help, and it did make us see that it wasnt us failing as parents. We certainly felt that when we approached professionals, got the feeling they blaimed us.
    Our daughters behaviours definately stem from anxiety, panic and unsurety. Because our daughter can speak, people misunderstood her behaviours and almost immediately the manipulative and mimicing behaviours started which would then escalate into a full blown rage.
    Until recently, her school has not really understood her. It has taken me almost three years of telling them to relook at the information that has been given to them. They have constantly told me that she is a happy compliant child at school with no behavioural problems! This was until a recent parents evening for transitioning year 6 - 7. The staff could not believe what they saw and in the words of her headmaster she went from mild disruption and crescendoed to meltdown point! A real eye opener for them.
    When I go in to observe her at school, she is actively passive and switched off! Not the animated little girl I know. They do however tell me that she homes in on adults, and especially visitors to the school,and will then talk incesively about Scooby Doo, Pokemon or Rock music - not giving them chance to answer but expecting them to know exactly what she is on about! These children are very complex and have their own unique way of showing us how they feel. People shouldnt think that they have to have the manipulative avoident behaviours only.
    Educating the educators and the pschologists would be a massive step for children with PDA. More information for parents after diagnosis also. Maybe a pool of resourses of tried and tested strategies,as we all know they may work one day but not the next but it doesnt mean they will never work again. Sticker charts and reward sysyems do not work for us as Olivia doesnt care whether she gets the treat or not. Fines have no meaning because she thinks everything is a penny and doesnt know what the value of stuff is either.

    Good luck with the conference! :D Let us all know how you got on!
  • Diagnosis was recent (May '06) and intially I was shocked. This was followed by what I can only describe as a period of grieving (the loss of a 'normal' childhood for my son and 'normal' life for me I suppose!) but after that came a feeling of relief and acceptance of the diagnosis. I also felt guilty that I had not recognised his behaviour issues as stemming from anxiety before he was formally diagnosed. He hid it so well.

    The diagnosis has helped me understand the reasons behind behaviour and hence I now deal with my son in a different way. I avoid direct demands and make a huge effort to give him winding down time during the course of the day to help him relax with music, tv , massage, silly non-sturctured games or running around outside if that is what he needs. I also try to recognise his aggression and over-activity levels as caused by anxiety (although I don't always succeed on a bad day!)

    It has also helped me to feel okay about being a parent again! Now I know it is nothing to do with the way I have handled him and I feel less bothered by the looks I sometimes get when we are out and he is having an off day! It has also allowed me to give myself permission to do things a bit differently. I do not hesistate to switch on children's tv, for example, if i sense anxiety levels rising, whereas before the tv was strictly limited, little things like that but they've made a difference.

    My son starts mainstream school in September '06. The school is a very small rural primary seven miles from our home, chosen beacuse of their great special needs dept., sense of inclusiveness and ethos of valuing each child as a unique individual. They also have another child with PDA there already. They have been very supportive so far, the SENCO already having had a transfer meeting with me and my son's support worker. They have offered to use calming brushing technqiues, flexible school hours (so he can avoid the stress of arriving with and leaving with the other children) and visual timetables should any of these things be needed. A classroom assistant will keep a close eye on him initally as well (he is not entering school with a statement so there is no funding for one-one at the moment). I feel they will do all in their power to help him succeed. I think frequent and open communication will be one of the most important things that will contribute to a good parent-teacher relationship and I feel this school will offer that.

    Good luck with the paper! Hope this might be of some help! I'd like to read it when you're done so let us know!!!
  • Hi
    When my son was diagnosed by a child development centre I felt the same as JD9672. After this period I have been glad of the diagnosis because I know why he does certain things at the dentist or doctors and I can plan for these events now. Try to keep him occupied etc. At home it isn't too bad, theres not normally any reason why demands should be placed on him as it's just me and him. He likes routines so we tend to keep to those for bedtime etc. I know his dad has a worse time as he has a younger daughter. My bad times are holidays and visiting friends or relations. I won't even go there
    Before his diagnosis the school had driven me to having depression and anxiety attacks(so I know a bit of how Dan feels)
    they spoke to me everyday about his behaviour. Once even calling him naughty which I was furious about. Unfortunatly after the diagnosis it didn't make too much of a difference for the school as a whole apart from two teachers who were excellent with him. He went to the junior school with a reputation but fortunatly the headteacher there is fantastic. He has been positive and fair and does seem to have read the literature I have given him. After two months his words were "Daniel is not living up to the reputation he came here with". Daniel now has full time support at school with a very experienced ECO. She is very calm. She focusses on the positives and builds on those achievements rather than dwelling on the negative. We have a home/school book where I can see how Daniel has done each day this helps me enormously and if I am getting concerned or they are we have a chat to try to think of a solution, when she feels that he has done enough in a period of time he gets to choose from a box of goodies as a reward. Usually he doesn't know when this is coming so he loves it and feels a sense of achievement. At lunch they have a dinner lady that sits with him as it's very busy and noisy there and he doesn't cope well. His self esteem was rock bottom but slowly this has been built. Obviously it will always feel like there is a mountain to climb but having a school which focusses on the positives has made such a difference. I will have to add that even when they had to exclude Dan last year for a day for the first time I wasn't made to feel like I had the worse child in the world. It was more well we have explained to Daniel why he is being excluded and we aren't happy but this isn't like Daniel to have done this so we will see him the following day and start afresh.
    Good Luck
    Donna
  • Diagnosis helped mostly by removing the awful feeling that his behaviour was somehow my fault(reinforced by professionals we had contact with)Guidelines were what we had already discovered worked(he is 17 and was diagnosed 6 years ago)but had not been able to convince others to implement!
    Teamwork and training have been behind success of school placement.My son and I plan each half term's targets with his teacher.She trains and prepares his 2 support staff and debriefs after each session and reports again to me.We always keep school informed of everything that effects his emotional state.She also briefs other staff that he may accidentally have contact with at school so that they don't sabotage our work through ignorance.Because there are always so many new and varied challenges that can shatter an adult's self esteem the emotional support provide by working as a team is priceless.
  • webbwebb
    Posts: 2,569
    Hi,
    Really good to hear from you on this site. Hope you get some good replies that you can use.
    Our son is 12 and in a special school that understand PDA.
    When I read the criteria for PDA 4 yrs ago I began to fully understand my child! Everything became so much more clear and I realised why so many ASD behaviour stratagies had not worked.
    Having a child that has language and yet "extremely difficult challenging behaviour" is not seen by some professionals as as challenging as an Autistic child but just a child with parents that can't discipline and control their child.
    A diagnosis of PDA can really help both child and parents.

    Communication between school and parents is vital!
    Home-School diaries completed every day.
    Phone calls to school to let them know when child is arriving in a wild mood and visa-versa.
    Using the same rules/boundaries in both places
    Honesty on both sides works wonders! When school admitted that my son totally wore them out every day and his manipulation of them was pure genius, not only made me laugh but made me realise, to parent him every day really was exhausting!

    Heres hoping PDA gets plenty of recognition/publicity!
    On behalf of all the PDA children and their parents, thanks for all your hard work!
    Paula
  • Lixina
    Posts: 289
    I'm a person on the autistic spectrum, somewhere between demand avoidance syndrome and Asperger Syndrome. I'd like to mention two things: firstly, in my case I have some traits of PDA such as intense pretend, but I only show the demand avoidance if I'm stressed. I had no sign of demand avoidance until I was traumatised by a bad school experience (I compare my school to Aramanth in the book The Wind Singer, in terms of rigidity and extreme reactions to nonconformity), so in some cases demand avoidance can be caused by stress in an autistic person.
    Another thing I'd like to say is that often when I did intense pretending, others thought I was confusing reality and fantasy when instead I was simply rigidly sticking to the fantasy - most kids would drop the fantasy at a certain point, such as when recess ended, but I'd keep it up. Also sometimes I just wanted it to be real, but knew it wasn't. And this pretend can be channeled into useful; forms, such as my fiction writing (currently trying to find a local publisher for the stuff I've finished).
    Lastly, I like the way I am, even though it's caused me problems. I've had people try to make me into a different kind of person, and it hurt. It's not a good idea to think society won't change so they have to change, or that the minority has to do all the adjustment for society. In some cases they can't adjust to society, if society adjusts somewhat to them, things will be much better. I know someone who was said to never be able to live outside of institutions until she learnt various skills, but with the proper support, she is living in her own home without those skills. She just needed some people to help her rather than insisting she has to change. Behavioral treatments didn't help, accomodating the way she is did.
    Ettina
  • Pamela
    Posts: 205
    Hello phil...how did the conference go......any new news for us?
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