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Getting a diagnosis
  • Hi, I am new to this group, and at my wits end and hoping you can help. I have known my son has behavioural issues since he could walk and talk. Don't get me wrong he is a lovely boy, funny and very clever, but from an early age he has struggled with authority and being told what to do. The first time we noticed this was when i was called into school again, because my son had been told to sit on the floor with his classmates with legs crossed, he refused point blank to do it and asked the teacher why he should, the teacher said "because I am telling you" which he replied, ok well I am telling you to sit on the floor and you have to do it because i am telling you. He see's himself as an equal to everyone and does not believe anyone should tell him what to do. He sometimes suffers stomach migranes where he can throw up everyday for months and doctor said this was due to anxiety. Now he does not come across at all anxious, he comes across very confident. But i know he cannot cope with being told what to do. He is constantly being suspended from school for challenging teachers, and is on the verge of being expelled. He has a jeckyll and hyde personality , and everyone who meets him loves him...that is unless they are a authority figure! I have been trying to figure out why he is the way he is, and i considered adhd, odd but it just did not fit. He has this need to always be in controll. He tries to tell his brother, sister cousins etc what to do all the time but does not do it himself. So i typed into google "need to be in control disorder"and came across PDA...Well it was like reading about my son. I mentioned this to the behaviorist in school, she had never heard of it and when i said "autism" she said no way. When i went to see her again she had done the research and said she completly agrees with me it was like reading about my son. I also did the questionair and i answered then 100% hones, not trying to make the diagnosis stick, and he scored 50, anything over 45 and they are likely to have it. But it seems impossible for anyone to consider it, i took him to the doctor and he had never heard of it and said there was nothing he could do. How has everyone gone about having him tested? Thank you.
  • PlanetAutism
    Posts: 2,641
    You could request your GP asks for out of area referral if there is nowhere local to recognise or assess for it. If you are in the UK this would mean an individual funding request (IFR) which would need the case made. You can use the clinician's booklet off this website and keep a daily diary of his behaviours and what PDA strategies work as more evidence. You will need to make the case that the behaviour management and support techniques are different for PDA than other ASDs in case they send him for a bog standard ASD assessment. There are different clinical tools which work better for assessing PDA than ordinary ASD. Usually the ADOS is used, I think it's the DISCO that works better for PDA, there might be others.
  • Holly59
    Posts: 1,265

    ruthruthio said:

    Hi, I am new to this group, and at my wits end and hoping you can help. I have known my son has behavioural issues since he could walk and talk. Don't get me wrong he is a lovely boy, funny and very clever, but from an early age he has struggled with authority and being told what to do. The first time we noticed this was when i was called into school again, because my son had been told to sit on the floor with his classmates with legs crossed, he refused point blank to do it and asked the teacher why he should, the teacher said "because I am telling you" which he replied, ok well I am telling you to sit on the floor and you have to do it because i am telling you. He see's himself as an equal to everyone and does not believe anyone should tell him what to do. He sometimes suffers stomach migranes where he can throw up everyday for months and doctor said this was due to anxiety. Now he does not come across at all anxious, he comes across very confident. But i know he cannot cope with being told what to do. He is constantly being suspended from school for challenging teachers, and is on the verge of being expelled. He has a jeckyll and hyde personality , and everyone who meets him loves him...that is unless they are a authority figure! I have been trying to figure out why he is the way he is, and i considered adhd, odd but it just did not fit. He has this need to always be in controll. He tries to tell his brother, sister cousins etc what to do all the time but does not do it himself. So i typed into google "need to be in control disorder"and came across PDA...Well it was like reading about my son. I mentioned this to the behaviorist in school, she had never heard of it and when i said "autism" she said no way. When i went to see her again she had done the research and said she completly agrees with me it was like reading about my son. I also did the questionair and i answered then 100% hones, not trying to make the diagnosis stick, and he scored 50, anything over 45 and they are likely to have it. But it seems impossible for anyone to consider it, i took him to the doctor and he had never heard of it and said there was nothing he could do. How has everyone gone about having him tested? Thank you.



    http://www.pdasociety.org.uk//forum#/discussion/5346/trying-to-get-help-again-

    Hi,
    There's quite a bit reading and links , but plod your way through and see if any of the issues you are having fits into Aspbergers, PDA , ADHD , ADD etc.

    I can't get a referral for my boys and Scottish Borders don't recognise PDA.

    If you can get video evidence on your phone, make a diary , start PDA Stratagies , see what happens .
  • Thanks everyone:)
  • Holly59
    Posts: 1,265

    ruthruthio said:

    Thanks everyone:)



    http://www.pdasociety.org.uk/resources/awareness-matters-booklet

    These are great to hand out. My boys score over 70 on the questionnaire but each child is unique .

    Try and get the school on board and work together as a team . Ask them to keep a diary as evidence .

    The more evidence you have the better.

    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    I am one of the mums involved in this . Show your GP and School.

    You can get PDA on its own. Normally they diagnose ADHD, then it's chipping away to get a proper diagnosis .


    Everyone will help you, don't be afraid to ask. My boys are 20 and 19 and we still don't have a full diagnosis of their issues. I am working on that .

    The positive is that you have recognised the issues .

    There is a section on here for teachers , I am sure they will get support from other teachers with experience..

    http://www.pdasociety.org.uk/education

    See if there is a support group near you, you will get loads of help from other parents. The training days are great if you can attend one .see if you can convince a teacher to attend as well.

    http://www.pdasociety.org.uk/resources/external-links/blogsandfacebookgroups

    http://www.zeemaps.com/view?group=1665768&x=-1.363501&y=53.432604&z=13




    Pat xx
  • UPDATE: My son has now been excluded, well I mean he is having a "managed move" into another school, or if we refuse, being excluded.
  • Holly59
    Posts: 1,265

    ruthruthio said:

    UPDATE: My son has now been excluded, well I mean he is having a "managed move" into another school, or if we refuse, being excluded.



    Hi,
    I am sorry to hear of your update. Does this new school use PDA Stratagies. Have you been to visit and have you established a working relationship with the new school?

    Pat xx
  • PlanetAutism
    Posts: 2,641
    I would also hope it's a special school or a specialist unit that can adequately support and educate your son.
  • katykins
    Posts: 27
    Make sure you engage with any exclusion support services in your Local Authority - they can support and advise you in liaising with the school(s) concerned.

    Also, the Governing body have to ratify any exclusions - has due process been followed here? Are they even aware of your son's experience? Humanising it with your side of the story can really help. There should be an SEND Governor - worth contacting them?

    The school will have a complaints process on their website, usually involving a Governor panel - worth exploring. It's useful understand both their behaviour and SEND policies, so you can see if they've adhered to what they say they will do. Also for any new school.

    I work in LA family services and was a Chair of Govs for 7 years, so understand that schools often 'break their own rules' and have to change approach when challenged on their own processes. xxx
  • My son hasn't been diagnosed with anything, I spoke to educational psychologist on Thursday, and he said pda is a "grey area" and they don't like to diagnose children here with it. He said that he is more likely to get a ODD diagnosis but I am convinced he has PDA He is going to see chams next Thursday and i am going to tell them I am convinced he has PDA. I am dissapointed that he never got any help from this schol even though I have been back and forth for years and they have always said there was a problem. The week I see the educational psychologist and am hopefull that things will move forward they tell me in that meeting that he has to go to another school. I do know that the school he is going to is excellent with behaviour issues and although its a mainstreem school, they tend to send the ones with behaviour issues there. Also he is in the lowest sets in everything in his current school but in the new one he is going straight to the top set in everything and they are going to "get help put into place" whatever that means. I have a meeting in his new school Monday 27th.

  • katykins said:

    Make sure you engage with any exclusion support services in your Local Authority - they can support and advise you in liaising with the school(s) concerned.

    Also, the Governing body have to ratify any exclusions - has due process been followed here? Are they even aware of your son's experience? Humanising it with your side of the story can really help. There should be an SEND Governor - worth contacting them?

    The school will have a complaints process on their website, usually involving a Governor panel - worth exploring. It's useful understand both their behaviour and SEND policies, so you can see if they've adhered to what they say they will do. Also for any new school.

    I work in LA family services and was a Chair of Govs for 7 years, so understand that schools often 'break their own rules' and have to change approach when challenged on their own processes. xxx



    It's confusing because they have not excluded him, what they said was they will arrange a managed move, when i said no, they said "I don't think you understand, he can't come back, and if he does come back he will be officially excluded and it will go on his record" so i felt i had no choice. I feel they have been trying to get rid of him for a while now, without him even getting the help he needed. But on the other hand I don't think I want him in that school anymore. Thanks for your advice, I will be putting in a complaint.

  • katykins
    Posts: 27
    Found this good explanation on a legal support site:

    A managed move is a voluntary agreement between schools, parents/carers and a pupil for that pupil to change school or educational programme under controlled circumstances. Managed moves are often used as an alternative to permanent exclusion; the result is that no exclusion is formally logged on the pupil’s school record.
    A managed move is different to the power of a school to direct a pupil off-site for the improvement of their behaviour. This is a particular power given to maintained schools under section 29A of the Education Act 2002 and is strictly time-limited. It is important that you clarify with the school the legal basis under which they are proposing that a child is sent to another premises for his or her education. A managed move can only be with the consent of all of those involved whereas direction off-site under section 29A can be done without the consent of the parents.

    Here is the leagl guidance around exclusions:
    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/269681/Exclusion_from_maintained_schools__academies_and_pupil_referral_units.pdf

    Quote from this guidance:
    14. Maintained schools have the power to direct a pupil off-site for education to improve his or her behaviour. A pupil can also transfer to another school as part of a ‘managed move’ where this occurs with the consent of the parties involved, including the parents. However, the threat of exclusion must never be used to influence parents to remove their child from the school.

    There should be something called or similar to 'behaviour and attendance partnership' locally - maybe ask your LA about this.

    Re Special Educational Needs, every parent has the right to request a plan - this link provides useful guidance:
    https://www.ipsea.org.uk/what-you-need-to-know/school-duties

    Good luck xx

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