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Is this PDA?
  • HarHer
    Posts: 312
    Hello,

    I apologise for posting so frequently. However, things are reaching a crisis point again in our family and I just need to clear my head a little.

    I realise no-one can 'give' a diagnosis on this board and that the question I am going to ask must be raised frequently by parents/carers who are just learning about PDA. However, I want to raise this question with our GP and the professionals at CAMHS who are supporting my sons, so i thought I would run it past people here first.

    My question is: Does my son's profile suggest he may have PDA?


    My son is 15 years old and has been unable to attend mainstream school for about 14 months. His lack of attendance began with school refusal and he was later diagnosed with Generalised Anxiety Disorder.

    His father has a diagnosis of Asperger syndrome and his older brother also has a diagnosis of Asperger syndrome and whilst my younger son had some intervention at school (Nurture Group, speech an language therapy to help him speak in groups, some discreet support for literacy) and was on the SEN register, he had no formal assessment of needs (to my knowledge).

    Unlike his older brother, my youngest seemed to have friends. More specifically, he had one special friend who he obsessed about. He would talk about this friend constantly, copy the way the friend dressed (with minor variations), adopt the friend's attitudes and values (which we did not mind because his friends were usually pretty OK) and insist on going to his friends to play and later texting his friends even though (we found out later) no arrangements had been made to visit. The friendship would almost always end abruptly and my son would move on to another friend. we suspect (in retrospect) that the friends and their families became overwhelmed by my son's presence.

    My youngest has always had an intense need to control. This developed into child protection issues when his control over his older brother became abusive. He also attempted to control his father and his father could not cope.

    My youngest amazed and amazes me by his charming and caring character; yet he can change in an instant. One of the most challenging aspects of my son's behaviour is that he can be sweet and lovely one minute and then abusive and violent the next.

    His need to control also involves controlling the family pets. He is an excellent trainer, but if the animal expresses its own will, he can become nasty towards it. I have had to intervene on many occasions

    He refuses home tuition for about 50% of the sessions. He will lock himself in the bathroom when the tutor comes and refuse to speak - except to say 'Send her away!'. I don't. I ask her to wait downstairs and ask him just to sit and chat, even if no work is done on that day. Sometimes this works.

    He has developed a health anxiety and interrogates people to see if they have a cold. I answer calmly and logically and try to encourage him to use the strategies advised by CAMHS e.g. challenging thoughts, reasoning and encouraging gentle exposure to the stimuli. However, I will admit, that I am scared of him sometimes. He is destructive; his temper seems to have no limits and the disturbance usually results in my eldest son melting down (and possibly self harming).

    Fostering was mentioned under the child protection plan. However, I was never keen on the idea. It seemed almost like we were rejecting him when he needed our support e.g. when his brother was in crisis, his father had hit him and I had to take lodgings up with his brother (who was suicidal) for a few months. My son, however, amazed me by his total ferocity. He challenged and threatened the social worker and Family Intervention workers to the extent whereby they visited him in pairs. Fortunately, he has calmed down a lot now, but when my husband and the social workers described what he had said or done, I was shocked because he had developed such skills of intimidation.

    Now, I can see his growing into a very fragmented young man. He has an absolute profound knowledge of cars and he can talk engagingly about this. His brother also has the capacity to absorb copious amounts of facts, but he has not acquired the skills of relating them in a conversational style e.g. asking for opinions, relating to something the other person has said and so on. Yet, he is avoiding any form of formalised education. He can be charming and endearing; yet people are scared of getting close to him because he can change so quickly. He seems to be disciplined and motivated e.g. about keeping fit and eating healthily; yet his discipline crosses the threshold into obsession. He has rituals which in themselves are not harmful, but he forces the more vulnerable members of the household to comply with them e.g. asks his brother to taste his food to make sure it is not rotten; threatens his father if his father refuses to take him to his running site and so on.

    I could go on, but I am aware this post is already massively long.

    Do you think this could be PDA or are there too many complicating factors?

    Thanks
  • PDA_ASD_Parent
    Posts: 4,188
    I would say it does sound like PDA HarHer.

    Does he roleplay at all, or did he when a bit younger?

    Autistics generally often mimic others, but there is an adoption of a character often with PDA.

    It's definitely worth pursuing to get him assessed, if he will co-operate.

    Again, I'm sorry you are having such a hard time.
  • HarHer
    Posts: 312
    Hello,

    Thank you. Londonboy, thank you for sharing your experience. I do not know if my son meets the threshold for sectioning. He is not an obvious danger to himself or others. However, when I brought this up in conversation with the consultant Psychiatrist, who is supporting my eldest, she said that if a young person is behaving in a way that is detrimental to his/her development, it may be grounds for compulsory admission. However, given the state of CAMHS at the moment, I do not think compulsory admission will be considered. Planet Autism, my son did role play when he was younger. He loved dressing up e.g. as a Power Ranger or Spiderman and really did adopt the persona well. He is an excellent 'mimic' too. He will join in with the strange games and repetitive word-play that his brother loves and this drives their father to distraction. However, extended stretches of noise making, formulaic question and answer exchanges and misapplication of words (e.g. all duvets become 'Sherburns' because that it where we bought one duvet from) are excellent ways of avoiding participation in difficult conversations for both boys.

    The consultant psychiatrist and my youngest son's psychologist are coming to see the boys at my house in an hour and a half. the boys have both said they will not see them, so I have asked each boy to write down (1) what he wants to happen by September e.g. with respect to education, friendships and so on and (2) how we (parents) and professionals can help.

    I have received nothing back yet.
  • PDA_ASD_Parent
    Posts: 4,188

    I do not know if my son meets the threshold for sectioning. He is not an obvious danger to himself or others. However, when I brought this up in conversation with the consultant Psychiatrist, who is supporting my eldest, she said that if a young person is behaving in a way that is detrimental to his/her development, it may be grounds for compulsory admission.



    That's a very subjective thing, especially when it comes to autistics. They would need to beware of square peg round hole mentality (https://planetautismblog.wordpress.com/2014/06/19/the-square-peg-into-a-round-hole-mentality-and-its-value-to-autistics/) because what is deemed as developmentally necessary for an NT may be different for an autistic! Judging autistics by NT standards will always cause problems. If the environment is right for the autistic, the difficulties are highly likely to dissipate (https://planetautismblog.wordpress.com/2014/02/05/anxiety-in-aspergersautism/).

    They also need to be wary of discrimination, autism is a disability and it's traits therefore protected characteristics. NT professionals not liking/agreeing with how the autistic is dealing with their situation and criticising it or negatively responding to it is potentially discriminatory.

    It's all about the right environment, reasonable adjustments, the right support. Without those, most autistic children will unravel.
  • sinkorswim
    Posts: 565
    I recognise a lot of the traits you mention.
    Would you consider a residential school?
  • webbwebb
    Posts: 2,545
    Hi Harher

    I was reading through the posts after you posted and had come to the same conclusion as 'sinkorswim'.

    Could you consider a really good Residential School for your youngest son?

    There are some excellent residential schools that have onsite Psychologists, S&LT and OT's and are for children with PDA, HFA, AS etc.

    Your LA (Education, Health and Social care) would need to pay for the school.

    Our son with PDA went to residential school when he was 14/15 and it has been fantastic! It was a real life saver for his brother who has Asperger's and the rest of the family.

    Happy to give more detail if wanted?
  • HarHer
    Posts: 312
    Hello,

    Thank you for your replies. Just over a year ago, my eldest son was granted a place at a specialised school. We had hoped he would go as a weekly boarder , but the school and the LA wanted to try him as a day boy first and then only after a very gradual integration. The integration was far too slow, and my son's health disintegrated quickly. There were some issues at home as well and my son was not in a good place. In June, the specialised school said they could not meet his needs. It was such a shame because the school was specialised for children and young people with AS and related condition and had excellent links to sixth form colleges so the boys could, eventually, stay at the school to learn life skills and mix in a mainstream environment as well.

    My youngest watched his brother break down and I doubt if he would consider a specialised school. However it is worth talking to him about the benefits and assuring him that he will not repeat his brother's experience. The biggest problem is that my youngest has not yet got an EHC plan. I have requested statutory assessment and I have asked CAMHS and the school (he is still on the roll at his mainstream school) to provide information and the school have taken more of a lead on this.

    Like you, I feel a residential or semi residential school would be really beneficial for my youngest and the family as a whole, just as I feel a residential or semi residential college would be great for my eldest.

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