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designing assessment scales for PDA
  • Lixina
    Posts: 289
    I'd like to design two assessment scales for PDA - one for parents to fill out, and one for PDA adults or teens to fill out. The self-assessment would focus on the internal feelings while the parent assessment would focus on observable behaviors. So, I'd like to have you guys give your thoughts on how the different criteria might show up. I'll do it about myself to demonstrate:

    * passive early history - doesn't apply to me

    * resists and avoids everyday demands - for the self-assessment I'd focus on the internal feelings, so from my experience it would be things like feeling like I'm living among the Borg and they want to assimilate me, feeling freaked out when everyone else is doing the same thing, feeling panic when someone gives me a command that I can't readily rationalize into acceptability, being unable to 'give in' in a conflict, finding it harder to say 'yes' than 'no' to a request, etc. Plus not wanting direct confrontation, so instead I try to avoid the demand indirectly by putting it off, making excuses why I can't do it, etc. I much prefer if someone asks me to do something instead of telling me to do it, or just makes it known that they'd appreciate if I did it without actually expecting me to do it.

    * lack of social identity - I have no desire to fit in to a group. I don't automatically compare myself to others, and when I first read about PDA it didn't even occur to me to think about how it related to myself. I can very easily obscure my sense of who I am by making up something about myself, and if I'm not careful I'll forget that it's not true. Though I like interacting with other people, I don't get lonely easily and can readily stay home all day by myself without interacting with anyone. I've often wished I was a cat or some other creature instead of being human, or else felt like even though I look human, I'm really not. I don't really have any sense of where I fit into the social hierarchy unless it's really obvious (eg being bullied). It rarely occurs to me to think of how other people might perceive my actions. I do feel pride and shame, but only because of what I do, not what people in my group do - for example if my younger brother does something embarrassing, I feel sympathy for him but I' m not at all embarrassed by it.

    * labile mood, impulsivity, need for control - I feel things intensely, both positive and negative. Things can turn from good to bad at a moment's notice. I feel like there are two distinct parts to me, the emotional side and the intellectual side, and they don't communicate very well. When I'm upset, if I try to push it down and hide it, I'm only delaying the meltdown a bit instead of preventing it. I often see other people in black and white terms, either they like me or they don't (especially when I'm upset). Sometimes I feel silly and want to pester people, and I won't even think about how my actions make them feel. I find it very difficult to apologize because I feel like it shows weakness. When I'm upset, I have a set of rigid rules about what I can and can't do, such as not being able to say how I feel directly (only indirectly) and not being able to admit anything wrong with me unless I switch into self-hating mode, where I say stuff that is so outrageously self-blaming that I know it can't really be true (but deep down fear that it is anyway). Feeling guilty tends to make me either lash out or hurt myself.

    * role play and pretending - I create many fantasy worlds in my head and can readily enjoy imagining scenes with them. As a child, my favorite activity was playing imaginative games, either using toys or acting the things out myself. I love doing drama. I have a number of different scripts for different social situations, and different 'modes' or versions of myself that I display. Sometimes as a child I insisted my pretend play was real even though I knew it wasn't, because I wanted it to be real. I've continued playing pretend regularly long past the age when most kids outgrow it. My favorite kinds of books are fantasy stories that could not possibly happen in real life.

    * language delay - doesn't apply to me

    * mild pragmatic issues - this is really hard to notice as the person who has these issues, but I do make eye contact and show facial expressions. I like to quote lines from favorite movies or from video game characters (eg randomly saying 'the dark times will pass' which is a blood elf greeting in World of Warcraft). Occasionally I'd play at echoing everything someone else said.

    * obsessive behavior - my interests have always been focused on living beings, either animals or people, but not on specific people, just categories of people. Disabled people, drug addictions, discrimination issues, etc.

    * neurological involvement - I'm very clumsy and have poor balance. I find it very hard to learn new motor skills, and when I'm tired I list to one side or my legs buckle underneath me while I walk. I sometimes walk into things or knock things over accidentally. I had a great deal of trouble with sports as a child.

    So, anyone else?
  • Garden
    Posts: 329
    That's really interesting. And I wanted to ask you something about the reality/fantasy side of things, which is a big issue for our family. I often feel that my daughter believes that things have happened because that's what she thought should happen or wanted to happen, and she sticks to that version regardless. Like the other day she did something trivial in the supermarket and I raised my eyebrows to her - and she stormed off accusing me of shouting at her. I hadn't said a word, but when I remonstrated with her about this, she was having none of it and I quickly realised that she really seemed to believe that I had shouted at her.

    I am noticing more and more incidents like this recently. I wonder if she has always done it and I'm just noticing or if it is a new thing. But I wondered if you would agree that someone with PDA could really think in their own head that sth happened even when it didn't happen.
  • Moose
    Posts: 1,843
    Hi Garden,

    we also experience a lot of these situations, I am never entirely sure how to interpret them.
    Are they pure fantasy or is it a gross misreading of unspoken communication? I do notice that they are most likely to happen at times of anxiety. This could be general high background anxiety or at times of a sudden anxiety spike.
    Often it would seem that the distorted perception of what has happened is actually a combination of the two. First there is a communication failure:- the raised eyebrow is only interpreted as 'anger' ( rather than 'questioning', 'surprise' or any of the other variants) and is read without the context of any other body language/ scenario or other factor that helps us translate an expression with accuracy. Then, with this misconception already in mind, fantasy adds extras that could be expected accompaniments to the initial perception.

    ie raised eyebrow= anger..... anger often expressed by shouting/getting into troubled/being nagged etc, so this is added fancifully to the raised eyebrow and remembered as a real event.
    We frequently face quite bizarre accusations that bare no relation to the original facial expression or spoken comment. One wonders how it is possible to be so far off the mark, especially when at other times Jacob is capable of accurately detecting the finest and most subtle of nuances.
    As an observer of interactions, Jacob has great skill at interpretation. I imagine that this is because he is under no direct pressure and is free to exploit his gift. However, if he is a participant in the exchange there is an immediate pressure which can be too great for clear functioning. Almost like a fight or flight adrenaline response over rides rationale for any of us at times of crisis.
  • Lixina
    Posts: 289
    One thing I've noticed about myself is that when I'm upset, I'll say things that are 'emotionally true' but not necessarily literally true.
  • Hi Lixina --First time I have posted and did so because it is so interesting to have such well articulated insights from someone with PDA. My grandson is not yet six so we are not at that stage. I have often wondered if that level of personal awareness as he gets older will make him less anxious(or make his anxiety more controllable) etc or do you feel that it is so pervasive that altering your behaviour is difficult. I also wonder how much your personality is an influence on the pervasive nature of PDA? I mention these because you were talking about designing assessment scales --what applied to you what didn't.
    Anyway good luck with that --I would have thought that you would be a valuable subject for the research going on at King's college London. A much needed research project when you compare PDA research to the wide ranging nature of research on Autism, and the random nature of its recognition.
  • ProudMum
    Posts: 103

    Garden said:

    That's really interesting. And I wanted to ask you something about the reality/fantasy side of things, which is a big issue for our family. I often feel that my daughter believes that things have happened because that's what she thought should happen or wanted to happen, and she sticks to that version regardless. Like the other day she did something trivial in the supermarket and I raised my eyebrows to her - and she stormed off accusing me of shouting at her. I hadn't said a word, but when I remonstrated with her about this, she was having none of it and I quickly realised that she really seemed to believe that I had shouted at her.

    I am noticing more and more incidents like this recently. I wonder if she has always done it and I'm just noticing or if it is a new thing. But I wondered if you would agree that someone with PDA could really think in their own head that sth happened even when it didn't happen.



    Hi Garden,

    We frequently encounter this difficulty with Youngest Daughter and yes, we've had the 'you're shouting at me' accusation when I'm usually raising an eyebrow about something completely unrelated to anything at all.

    Youngest genuinely believes this happens. She has now started attending a special needs school and she is coming home with allegations about staff members there shouting at her (when I know they wouldn't and handle all the Girls' needs calmly and appropriately).

    So it does happen and it certainly presents difficulties. :(

    PM
  • With regards to the fantasy bit, girls with an ASD generally are much more able than boys anyway to the degree that it is a risk factor. I think Tony Attwood covers this subject.

    For example; our DD (not technically 'diagnosed' but 'acknowledged' by her psych that she fits PDA but diagniosed as Aspie in August, finally at 13 1/2years due to no-one wanting to refer us for assessment) has done many 'dodgy' things. These include shouting 'don't hit me' when I am on the landing and she is in the hall (???) as if I have hit her, telling people scenes from lovely Jacqueline Wilson books which have got us referred to Child protection and even had our children put on the register for saying 'I think my daughter has Aspergers and PDA' as she is so convincing that they thought I was trying to slam a condition on her to cover up a whole world of abuse, particularly as behaviours tend to manifest themselves mainly at home ('well, if she plays up most at home than her problems must stem from home ' by a really stupid SW)! She fiddles with things and takes things and for a long time we dealt with it as being naughty and lying about it but I am now succeeding with my husband (who has taken others opinions more seriously than my gut instinct due to the guilt/denial factor) that it really is 'real' to her that she didn't do it. It seems as if she does stuff but the reality is the fiction and the fiction is the reality to the degree that she doesn't remember doing stuff or has completely false memories .

    This doesn't fit in with what is usually regarded as ASD signs.

    Problem is girls ASD is quite different from boys and PDA is like jumping to another planet altogether. We know quite a lot of people effected by ASD now and we are the only ones who even know of the syndrome let alone have experience of it.


    She doesn't usually feel guilt because it didn't happen or she was justified in her actions. She will say sorry for hurting us but that is usually because she needs the comfort/attention - I know this sounds hard but it is true.

    Passive start - you may have had that but don't know you did. The biggest one for our DD was a lack of the hunger instinct which was obvious from the day she was born. A baby usually cries for a feed but our DD never did. With hindsight this fits in.

    Obsession: she will re-read a book over and over again. But they are all short-lived. There is no emotional connection to anything and sometimes you get a sense that she is interested in something because she feels she ought to be.

    Could carry on and cover every issue but most of it hides or can be easily explained away. It makes me think of when my mother developed secondary cancer and rather than admit the worst to herself, she explained away every little niggle to colds, cysts, flu etc etc until it was too late. The difference we have had is that we have been prepared to see the whole problem but the 'establishments' such as schools have refused to.

    Sorry, we have had such a rough time as a whole family trying to get someone to take us seriously that it spills out occasionally. :oops:
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