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Symptoms not included in the PDA information
  • Garden
    Posts: 329
    When our daughter was diagnosed as having PDA the paediatrician noted some of her behaviours as being part of her PDA and I am sure she gave me literature which included some of them - but I've just read the 'About PDA' information on here and I can't find it.

    Things I'm thinking of include:

    Being scared of puppets and dressed-up characters
    Having Munchhausen tendencies (making yourself ill / getting yourself into hospital / asking for an eye test so you can have glasses but making the whole thing up)
    Screaming obsenities in a rage - turning into a very adult sort of person

    Are these recognised as being part of PDA? Is this documented anywhere? Have I just missed sth?

  • sdeejay
    Posts: 10

    I don't know if there is any documentation anywhere but in my own experience of my 7 year old, if he has decided that he wants or has become obsessed by something then he would then control and manipulate the situation until he got his way. So I can completely imagine that if he had decided he feels he needs glasses then he would push and push to get his eyes tested.

    Also he will scream obsenities when he is raging as he has completely lost control and blame anybody or anything for the cause of his anger.

    Hope this helps

  • Amanda
    Posts: 281
    In our own experiences things like glasses were things that there was an option to have and I know we had real problems when my youngest needed glasses and Mark didnt. In fact Mark hurt his eyes trying to poke them into needing them. This happened again when a boy in school got glasses too. Its a case of, they are there so I have right to them, in Marks case.
  • MHO
    Posts: 111
    Included in the literature is an emphasis on the imitative behaviour of PDA children and I think this explains a lot. Wearing glasses, going into hospital, using bad language etc. are all means to an end and result in bringing the attention the child craves. Unfortunately good health and good behaviour don't seem to have the same pull effect.

  • webbwebb
    Posts: 2,569
    Hi Garden

    The behaviours you have highlighted have certainly been seen in my son and to my knowledge are part of PDA.

    If a sibling or a friend has something new, the PDA child wants one as well! Including glasses, plaster casts, hearing aids etc!

    These children are very dramatic characters!

    Children with PDA have little or no Social Identity, therefore they will act like adults and boss/manipulate everyone because they think they are the boss. As we know they have a need to control everything and everyone.

    If they loose their control over a situation, then they will scream, shout, kick and use all kinds of obsenities.

    Children on the autistic spectrum(PDA or otherwise) can be very scared of puppets/costumes etc because they are strange/unreal?

    I suppose the thing I would point out is that some of our children may display some of these behaviours to different degrees as with all children on the spectrum. They can also develop some of these behaviours later in life, say teenage yrs. They can also seem to overcome/grow out of there fears/behaviours.
    My son is not affraid of puppets anymore(14 yrs), if he sees one he tends to want to rip it's head off!!!

    If all this is not documented on this site it may be documented in other papers produced by the ENC.

  • dirtmother
    Posts: 897
    I don't think PDA means 'attention seeking' - some operate in a much more 'eminence gris' style and will be ensuring they *don't* attract attention - it's whatever they think (possibly purely on an instinctive level) works to exert control and avoid demands and frankly the more subtle ones may be more effective! So I don't think any of these are going to appear in everyone with PDA, even 'classic' PDA.

    My own son, diagnosed by the ENC as having PDA doesn't have any general difficulties with puppets/costumed characters and never has had but his social imagination is unimpaired (hence inappropriateness of an ASD diagnosis for him). We've not had any of the symptoms you describe (yet...I'm quite surprised we've not had the obscenities during a meltdown) - though if any of them might make sense in terms of demand avoidance (and they would) then some person with PDA is going to be using them. He is quite alert to anyone using roles or puppets to try to get him to do things, but that's not quite the same thing! And we do get a lot of "My leg is broken" etc at the moment though, but little attempt to fake it, just verbalising.
  • Pounce
    Posts: 39
    My dd certainly isn't showing signs of needing something that someone else has. Her best friend has worn glasses for several months now, and dd has never shown signs regarding wanting her own.

    She is very specialised in her likes and dislikes. Clowns? Hates them. Passionately. She simply doesn't undertand them, although they don't scare her.

    Puppets are fine, so long as they are animals, but she doesn't like the Muppets.
  • Amanda
    Posts: 281
    Mark has a complete and utter hate of crazy frog. I think its a sensory thing cos of the daft noises it makes but I've had to prevent him ripping the head off ones in shops before lol
  • Pounce
    Posts: 39
    I'm with mark all the way there!

    Crazy frog has to be one of the most irritating noises since the Stylophone!!

    Pity you had to restrain him, really. :o
  • Lixina
    Posts: 289
    I'm not scared of puppets, never have been. In fact recently I helped out with a puppet troup teaching children about disabilities. Nor do I scream obscenities when having a meltdown, though I will insult people (usually saying they're selfish or mean).
    As for faking illness - I haven't technically faked illness, but I have exaggerated it on occasion. This has largely disappeared when I started being homeschooled, because I did it to escape school. But I still feel 'safer' when I'm a bit sick.
  • Garden
    Posts: 329
    I think that it's interesting that our children can express their PDA in so many different ways. My concern is that the info on the web site does not include some of the symtpoms which the paediatrician who diagnosed the PDA agreed were PDA in our daughter. I accept that some of you have children who are e.g. not scared of puppets, or who don't want glasses because other people have them (N.B. our daughter isn't coveting other people's possessions - she wants these things because they are part of her copying strategies).

    I do have this longer piece on PDA which the paediatrician gave to me and I just find that it describes my daughter better than the info on this site. And I do wonder if some people come on here and look to see if PDA is a good description of their child and go away thinking, no, because it's not all on here.

    My main issue I suppose is that role playing is not given such a big mention. I accept that some of you don't see so much of this, but it's HUGE for my daughter. So she wants glasses so she can play at being someone else she's seen in the street, or she creates a rash on her arm so she can get into hospital and play at being a patient, or she tries to recreate the look of one of the girls from 'Girls Aloud' when she is going out to a party (!) etc etc etc. And I know some other adopters who have girls who behave very similarly to our daughter, not just in the role playing but in the avoidant behaviour and the tantrums, but they look at this site and don't see it in their child.

    A lot of the parents who use this site seem to have boys and often boys with autistic spectrum type symptoms too. Could this be part of the issue? Is it different for girls?
  • webbwebb
    Posts: 2,569
    Hi Garden

    I feel you have raised some very important issues in your post.

    I wonder if you could share the document that your Paediatrician gave you on the criteria regarding PDA. I think many of us would value as much professional insight into this Syndrome as we could possibly lay our hands on! It would not only help to understand our own children better but to understand that there are variations within this Syndrome, just like there are within Autism.
    Is there some way you could post the document on to the site?

    With my own son role play dominated his life 90% until he was 8yrs. Then between 8-10yrs 70%. Now at 14 yrs it occupies less than 50%.
    He has replaced role play with more demand avoidance and aggressive behaviour.
    I'm sorry I can't remember what age your daughter is but I suppose I'm trying to say 2 things:
    1. They all show differences within PDA.
    2. I think/ (know from my own son's life) that they can change but they will still have PDA.

    Recently I have been reading a book "Asperger's and Girls" by Tony Attwood(My Aspie son 17 has a girlfiend who he thinks has Asperger's). In it he describes how girls present slightly differently to boys with Asperger's.
    I'm sure in time when more research is done etc that we will find that PDA may be slightly different in girls than it is in boys, who knows?

    Sorry didn't quite understand your last para about adopters.

    The Autistic Spectrum is wide and vast, if any of our children have any type of ASD we need to support each other, as it's a harsh world out there for our children and we need to raise awareness of all types of ASD's until all the general public understand this disability!

    Take Care
  • jelv
    Posts: 185
    If you can email me the document as word, pdf or scanned image I'll put it on to the server for the main website and post a link here. Any difficulties give me a ring and we'll sort out how to do it - my phone number is on the contacts page of the main website.
  • Garden
    Posts: 329
    A friend has borrowed the document - it's very, very long, but I'll see what I can do when I get it back
  • Hi Garden

    I found this website whilst searching for advice & support for my daughter. She is seven, and was diagnosed with ADHD and ASD when aged five. The last appointment with her consultant was at the end of July, I posted info from this website to him, prior to the appointment. (She has been through a period of low self-esteem in the summer term, when it dawned on her that she has difficulties that her friends don't. Hence I didn't want to discuss too much in front of her). I asked him what he thought about PDA, did he consider it a diagnosis appropriate to her? His reply was that girls who are on the autistic spectrum, typically have a more complex set of symptoms than boys, and can be harder to accurately diagnose. His view was that if we find the strategies from this website and forum valuable, not to worry about "the label" and use them! (which I have). I do strongly feel she has PDA, but unless the diagnosis of PDA brings any additional benefits, I'm currently happy to stick with ADHD & ASD.

    I have recently become friendly with a local mum and her young son. He has a diagnosis of Aspergers and is so typically Aspergers. I can understand what my consultant means when he says girls can be so different to boys. My daughter is not typically anything, her ADHD is mild, but still debilitating. But is this the same with boys and girls with a diagnosis of PDA, where the gender split is more equal? I think Paula is right, that more will become apparent when more research is done on PDA.

    The reasons for your daughter's verbal outbursts whilst in a rage, are covered in an excellent book The Explosive Child, by Dr Ross Greene. I borrowed it from my local library before buying it. He explains that when children feel extremely frustrated, sometimes the only way they can articulate themselves is by swearing. The content of the verbal outburst (although is shocking and embarrasing), can be irrelevant. My daughter comes out with really random comments when frustrated. For instance, my greeting on collecting her after school one day, was an apparently random "I don't want to go to taekwondo any more." UH! what was that about? I thought. The answer was simple. She was expecting Dad to meet her, she was feeling peckish, and Dad could be relied on to say "yes", to buying sweets/a snack from the local shop on the walk home! Mum is not so easy to persuade.

    Regards, Lyn
  • Garden
    Posts: 329
    I think that what I'm wrestling with at the moment is whether our daughter's behaviours are due to a fairly fixed developmental condition or whether they are a mental health issue, brought about by her early life experiences. I agree that just being able to manage her behaviours is crucial, but if these behaviours are deemed to be mental health issues by the professionals, then I think that could have some long-term implications for her, plus of course there is always the possibility of therapeutic help, which might not be the case if they decide it's developmental.

    Interestingly, I am going to a course in London on Saturday at the Child Mental Health Centre. The speaker is Dr Bessel van der Kolk, who is at the forefront of trauma research. According to the blurb "Dr van der Kolk has published extensively on teh impact of trauma on development, such as dissociative problems, borderling personality conduct disorders, self-mutliation and cognitive development". It also says that "from the emerging understanding about the neurobiology of trauma, it is not clear that physical action is necessary to initiate new ways of perceiving reality and to promote new behaviour patterns". Basically this is where all the new ideas about the ongoing effects of trauma are coming from - yoga, massage, theatre, imagination, physical exercise.

    Anyway, if our daughter's behaviours, which look like PDAS, are actually due to her early life experiences and there's sth we can do about it, I want to know about it. And I do think that all parents with PDAS should be aware of this alternative possibility - I understand that they consider some early life medical interventions within the notion of trauma too, so it's not necessarily just children who were abused/neglected that we're talking about. There's a girl at my daughter's school who behaves exactly like our daughter. She was in an incubator for the first month of her life and no one was allowed to touch her..........
  • Lixina
    Posts: 289
    The reason I think PDA describes me better, even though I know I was abused, is that not only do I have a lot of the unpleasant parts of PDA, but I also have the more pleasant/neutral features like intense fantasy, clumsiness, etc that don't seem abuse-related to me. I suppose without the abuse I might have had only PDA tendencies, instead of full PDA, but I'll never know.
  • Garden
    Posts: 329
    Oops - should have said "it is now clear" instead of "not" which completely changes the meaning (in the paragraph from my previous post about the latest findings from neurology).

    I just wanted to say that, having been on the course, they are now finding that trauma and PTSD has huge impacts on the body. It's not just behavioural problems and mental health issues but big physical changes. We saw a few videos and it was all pretty fascinating.

    In terms of systemic abuse within a family situation (which is very different from a one off incident like a car crash according to dr van der Kolk), he is suggesting that people look at neurofeedback. Has anyone ever tried that? I know they offer it in London and York, not sure where else. For the more one-off incidents he suggests EMDR (which involves moving fingers in front of the eyes - it's widely available, I think).

    The other thing he uses with patients is tapping, which I think is also called EFT (emotional freedom technique). He says that the main thing is to get the child regulated and he sees working on the body as the most important way to do this. He's not some crank - he is a scientist and he researches everything.

    Anyway, might give some of you some ideas re the regulating, which seems to be what we are all after with our 'explosive' children.
  • Lixina
    Posts: 289
    I read a study that found no difference in effectiveness between EDMR and systematic desensitization. Like in systematic desensitization, EDMR involves mentally reliving the trauma (while the therapist does the eye thing) so that would mean that the eye thing basically makes no difference.
  • Ali
    Posts: 7
    Hi Lixina,
    My experience and knowledge of EMDR, is that the client does not re-live the trauma but locates it. They know what the trauma is. And they know how it is impacting their present state and ability to get on with a normal life. Their past is running their present. Children of course may not even be aware of the anything else as they have no 'normal' state to compare it to.

    They know this in their 'mind body/unconsious'. They do not have to even verbalise it to the therapist. As the issue with trauma is usually the verbal reasoning part of the brain has been disconnected from the primative fight/flight part of the brain.
    The way the EMDR works is through eye accessing (Where your eyes move to re-connects certain neuro-pathways and brain area) Once the connections are re-wired by the eye movements the brain can begin to re-connect. There is a saying about eye movement 'What you don t use, you lose'. In trauma certian pathways have been either temporarily or permanently lost. Either the old ones need to mended or new ones made.
    By being finely sensitive to eye movement, which is mostly out of consciousness, a therapist can notice where the client is not able to access and this will give a lot of information back to the therapist about what the structure of the trauma is...where the brain is stuck...visual, auditory, scent etc. Even then that is only the 'story' of the trauma. The therapist simply gets the client to make the physical eyes movements whch build the connection. BUT there is a lot more that a fully trained trauma therapist knows.

    EMDR can work with the most profound cases of complex or intra familar trauma or with one off trauma But it will take more time for the former client to be ready for EMDR as even locating the trauma for them may be too de-stablising and they may need soemthing like the neuro-feedback or other grounding processes.

    Neuro-Scientists will happlily tell you that they are finding out more and more ablout the brain all the time. What they do know and understand is rarely 'fact' but theory which they then try to prove with case studies and statistics.

    In the case of children who are traumatised, what I am learning is that what works for one child, or one case may not work for another. What often works is a kind of 360 degree approach of trying different things and doing more of what works. I understand for some people the de-sensitization really seems to work. It may be that in all the cases the belief in the process and the abilty of the therapist to attune to and then regulate the state of their client (basis hypnotherapy skills!) may be the key to a lot of success.

    Hope this is of interest.

  • Lixina
    Posts: 289
    Whatever you call it. The study I read said getting them to do the same thing except without the eye movements had the same effect.
  • Garden
    Posts: 329
    The research which Bessel van der Kalk presented showed a clear improvement in patients who had EMDR over other techniques, including taking drugs and cognitive behavioural therapy. All patients improved in the short term, but in the longer term, EMDR was continuing to show benefits whereas the patients using the other techniques went back much to where they were before.

    I am sure that there are lots of conflicting studies on this. I'm just sharing what a world-renowned expert in trauma presented in London at the weekend. There is definitely some evidence for conditions which are trauma-based to be diagnosed as something else, and it may be that just one parent with a child who has PDAS type symptoms may find that looking into areas like this may benefit them. Like I said in a previous post, apparently early medical interventions and severe infant stress can count as 'trauma' in this respect - it's not necessarily deliberate neglect/abuse. I do think it's interesting that so many adopted children who were abused / neglected as babies end up with diagnoses of e.g. PDAS, autism, ADHD - there certainly seems to be sth in what Dr van der Kalk has discovered.

    I suspect increasingly that my daughter does not have PDAS, which is probably why she doesn't quite fit the criteria on this site, which was my original concern! She has a lot of PDAS type behaviours but the idea from CAMHS that she is just not very integrated and using a lot of coping strategies which just happen to tick the PDAS boxes is looking more likely to me.
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