2. THIS IS ME A PERCEUS JAMES PRESENTATION ABOUT P.D.A

3. Hi, my name is Percy and I am ten years old. I have a very complex, challenging and misunderstood form of Autism called PDA

4. WHAT IS P.D.A? I KNEW YOU WOULD WANT TO KNOW! SO HERE GOES…

5. P.D.A (PATHOLOGICAL DEMAND AVOIDANCE) PATHOLOGICAL? WHAT DOES THAT MEAN?

6. YOU DESCRIBE A PERSON OR THEIR BEHAVIOUR AS PATHOLOGICAL WHEN THEY BEHAVE IN AN EXTREME AND UNACCEPTABLE WAY, AND HAVE VERY POWERFUL FEELINGS WHICH THEY CANNOT CONTROL

7. PDA IS QUITE RARE NO ONE IS REALLY SURE OF THE EXACT CAUSE BUT IT IS BELIEVED THE BRAIN WORKS IN A SLIGHTLY DIFFERENT WAY FROM OTHER PEOPLE’S BRAINS

8. BUT I DON’T UNDERSTAND? DON’T WORRY I DIDN’T EITHER, SO LETS FIND OUT MORE…

9. I have ASD with PDA – Pathological Demand Avoidance. My whole life is taken up with trying to avoid the demands you spend your whole life making! I can’t help it … my brain just works that way!

10. People with Pathological Demand Avoidance Syndrome (PDA) will avoid demands made by others, due to their high anxiety levels when they feel that they are not in control

11. CHILDREN WITH PDA FIND BEING ASKED TO DO THINGS DIFFICULT, EVEN EASY THINGS

12.  I WILL HAVE DOZENS OF EXCUSES WHY I CANNOT DO SOMETHING  WILL ATTEMPT TO CHANGE THE TOPIC OF CONVERSATION OR TALK AND TALK AS AVOIDANCE STRATEGIES  CHILDREN WITH PDA FREQUENTLY BECOME PANICKY OR AGITATED AND OFTEN BECOME VERY ANGRY

13. I am learning to understand myself and I am learning to understand you

14. WHAT CAN I DO TO HELP US ALL GET ALONG?

15. Some strategies to reduce anxiety for me … and hopefully make life less stressful for you too!

16. I don’t understand why rules matter (unless they are mine). Suggest I work out the possible reasons for a rule so I’ve agreed it but not been told it … that way its not a demand and I don’t feel so anxious!

17. Accept that sometimes I am so wound up I cannot function at all and please give me some space to sort myself out !

18. If you are new (like a supply teacher or new member of staff) I get really anxious because you might make loads of demands Read the leaflet about PDA so you know I’m not just some naughty little boy - which could make life difficult for us both!

19. Direct demands cause me the most anxiety…. Phrase a demand as a choice. It’s easier to cope with … even if one choice is so undesirable there isn’t really a choice! Sometimes you may even need to resort to a little bit of trickery!

20. I am brutally honest at times, more so when stressed - when I tactlessly tell you exactly what I feel!! Never take what I say personally – Its my emergency strategy to stop the anxiety

21. People think that I am naughty, defiant and rude and that I need to be disciplined They are wrong! I need understanding and support not judgment!

22. PEOPLE ARE SO UNPREDICTABLE AND CONFUSING TO ME I NEVER KNOW WHAT THEY ARE GOING TO DO, SAY OR WHAT THEY WILL EXPECT FROM ME. I DON’T HAVE ANY CHOICE THOUGH BECAUSE IF I DON’T CONTROL AND AVOID DEMANDS I HAVE MASSIVE PANIC ATTACKS AND LASH OUT THIS MAKES ME VERY SCARED AND ANXIOUS. SO IN ORDER TO FEEL CALM AND SAFE I TRY TO CONTROL EVERYTHING AND EVERYONE IN MY IMMEDIATE ENVIRONMENT AND AVOID ALL DEMANDS PLACED ON ME BY OTHERS.

23. I will still do things wrong and I do want to learn but I need you to help me feel calm Please speak to me nicely, don’t give me direct demands and don’t bark orders at me I just can’t cope with this sort of communication because it makes me panic and then I may physically lash out!

24. Please help me by understanding that I am different and that this is not something that I can help

25. The outside world is scary and unpredictable for me. I have been so frightened about getting something wrong, being told off, having a meltdown and embarrassing myself in public. I want to try to go out more now and have friends. My mum is trying to teach me how neurotypical (normal) people think and act so that they aren’t so confusing to me. But it would be really helpful if you could try to understand me too

26. My Autism-PDA Gives Me Difficulties in the Following Areas…

27. This is the ability to put yourself in someone else’s shoes so that you can fully understand how they may feel ‘Neurotypical’ people automatically know how their own actions may be affecting someone else at an emotional level This part of the wiring system in my brain appears to have short circuited This means that I have great difficulty in adjusting my own behaviour because I don’t always fully understand how you actually feel I also have difficulty in naturally understanding my pecking order in society which is why I can appear rude and disrespectful to adults

28. Social Interaction I try to control my environment and the people in it so that it is predictable to me and less scary because people are so unpredictable and you never know what they are about to do This combined with not full understanding people’s feelings means that I can be very bossy and controlling I may do things that are really inappropriate, embarrassing for the other person or physically move people into position This is because I really don’t understand the rules or reasons behind appropriate ‘neurotypical’ interactions The more people I am with the more anxious and controlling I may become

29. Social Communication I completely misinterpret verbal communication and I always feel that people are shouting at me, telling me what to do, saying things to embarrass me and humiliate me This makes me very nervous and so I will try to control my environment by controlling conversations and avoiding any demands placed on me This stops unexpected things from being said to me that may make me feel upset and out of control

30. Routines Unlike other people with Autism following a routine that has been devised and imposed on me by someone else does not help me to feel calm In fact this increases my anxiety I need to follow my own routine and I may try to impose this routine on others by insisting that we do things on my terms

31. CAN YOU PLEASE HELP ME TO COPE IN YOUR WORLD? PLEASE TREAT ME WITH RESPECT AND TALK TO ME ON AN EQUAL LEVEL BECAUSE INSIDE I FEEL MORE LIKE AN ADULT THAN A KID PLEASE TRY AND PHRASE THINGS IN A NON- DIRECT WAY THAT OFFER CHOICES E.G. “PLEASE CAN YOU PASS ME THAT SCOOTER PERCY, IF YOU DON’T MIND?”. I CAN’T COPE WITH DIRECT ORDERS OR DEMANDS BECAUSE THEY MAKE ME VERY ANXIOUS PLEASE TRY TO BE TOLERANT OF ME AND TO NOT THINK BAD THINGS ABOUT ME IF I AM HAVING A BAD DAY I AM TRYING REALLY HARD BUT I CAN’T ALWAYS KEEP MY STRESS AND ANXIETY IN BEING BOSSY AND AVOIDING DEMANDS IS MY COPING MECHANISM FOR ANXIETY AND STRESS, I CAN’T ALWAYS CONTROL THIS ASPECT OF ME BECAUSE IT IS MY NATURAL INSTINCT

32. Pushing me to do what you want can result in such panic that I may lash out or have a meltdown

33. PDA does not spell ‘bad’. I may process the world differently than you but I am just a little boy who wants to fit in

34. My anxiety stops me from doing things that I want to do as well as things that I don’t want to do

35. I even find it impossible to engage in things that I enjoy if it has been suggested by someone else

36. Not being able to do so many things that I would like to do is as frustrating for me as it is for you

37. NOT EVERYTHING IS BAD THOUGH… THANKS TO THE HELP OF MY MUM AND THE STAFF AT CAM EVERLANDS THINGS ARE GETTING EASIER FOR ME

38. I HAVE PEOPLE WHO BELIEVE IN ME WHO MAKE MY DAY EASIER JUST BY BEING THEM

39. AND I HAVE ALL THE HELP I NEED WITH SOMEONE WHO ‘GETS’ ME

40. THANKS FOR LISTENING