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  • j2812
    Posts: 2
    Hi all, my son is 12 and diagnosed with ADHD. He started refusing to go to school around 3 years ago. How ever since starting secondary school in August last year he has only attended 13 1/2 days. Obviously I have attendance officers etc breathing down my neck. It has now been sent to the children’s reporter and all of a sudden cahms are listening to what i’ve Been saying for years that there is something more than ADHD. They are now going to be assessing him for autism and have said they believe it to be Aspergers. I came across an article about pda while googling looking for any kind of advice on school refusal that I haven’t already tried. He has had reduced time tables etc. I even fought to be allowed to take him to school and stay with him. Which worked for half a day. As I read about pda I realised it was a perfect discription of my son. The attendance officer etc have described him as manipulative and controlling. My son maintains that he doesn’t know why he doesn’t go to school, he just can’t. However if put on the spot he will come out with all sorts of weird and wonderful excuses. What school don’t understand is that this isn’t just an issue with school. He refuses to sleep, he refuses dental treatment, sometimes he won’t leave the house at all. Cahms are saying it’s extreme social anxiety. However that doesn’t help me with the fact he can have a total meltdown over being asked to shut a cupboard. It’s affecting the whole family now and any advice at all on how to help him feel a bit happier and calmer even would be greatly appreciated. The older he has gotten it seems to just be outburst after outburst. 24/7.
  • Holly59
    Posts: 2,589

    j2812 said:

    Hi all, my son is 12 and diagnosed with ADHD. He started refusing to go to school around 3 years ago. How ever since starting secondary school in August last year he has only attended 13 1/2 days. Obviously I have attendance officers etc breathing down my neck. It has now been sent to the children’s reporter and all of a sudden cahms are listening to what i’ve Been saying for years that there is something more than ADHD. They are now going to be assessing him for autism and have said they believe it to be Aspergers. I came across an article about pda while googling looking for any kind of advice on school refusal that I haven’t already tried. He has had reduced time tables etc. I even fought to be allowed to take him to school and stay with him. Which worked for half a day. As I read about pda I realised it was a perfect discription of my son. The attendance officer etc have described him as manipulative and controlling. My son maintains that he doesn’t know why he doesn’t go to school, he just can’t. However if put on the spot he will come out with all sorts of weird and wonderful excuses. What school don’t understand is that this isn’t just an issue with school. He refuses to sleep, he refuses dental treatment, sometimes he won’t leave the house at all. Cahms are saying it’s extreme social anxiety. However that doesn’t help me with the fact he can have a total meltdown over being asked to shut a cupboard. It’s affecting the whole family now and any advice at all on how to help him feel a bit happier and calmer even would be greatly appreciated. The older he has gotten it seems to just be outburst after outburst. 24/7.



    Hi ,
    Welcome to the Forum ,

    Are you in Scotland , you mention the Children’s Reporter . You do not need a formal diagnosis to receive support .I can point you in the right direction if you live here . .The Education Laws are different , it’s needs based .

    I was told for eight years my eldest child had PTSD after his father died . CAMHS and so many other professional failed us . From the information you have given so far your son presents with blatent ASD- PDA . Suprised you have not been offered parenting classes !!!

    The more demands placed on him, High Schools are really exam factories , unless PDA Stratagies are used the worse he will become . You all must use the same Stratagies or it won’t work . I saw a press article about PDA and researched the information . Reading Jane Sherwins book was a “ lightbulb moment .”

    There are Specialist Dentists who deal specifically with these cases . My dentist has been brilliant and learnt all about PDA . They can make home visits .

    Sleep can be a major issue in Aspergers . Sleep is also a Demand .

    There are lots of support groups out there . I would defiantly recommend you join one .

    This link gives you masses of information how to deal with PDA . The Webinars are a great way to learn .

    https://www.pdasociety.org.uk/families

    Pat xx


  • j2812
    Posts: 2
    Hi and thank you for your reply, yes I am in
    Scotland. The school are pretty much refusing any support as they claim he doesn’t need it. Primary school said the same though they also said he could happily sit in class for 6 hours and do nothing! The primary school referred him to the educational psychologist after years of me asking however they wouldn’t even assess him.

    I am at a total loss as to what to do. Social work are visiting to do a social back ground report for the children’s reporter and there is definitely a lot of blame on me as the parent. As they say he is out of my control. I however know he’s not just a naughty kid. They have even tried to suggest that they think his sister will have the same issues. She definitely does not.
  • Holly59
    Posts: 2,589

    j2812 said:

    Hi and thank you for your reply, yes I am in
    Scotland. The school are pretty much refusing any support as they claim he doesn’t need it. Primary school said the same though they also said he could happily sit in class for 6 hours and do nothing! The primary school referred him to the educational psychologist after years of me asking however they wouldn’t even assess him.

    I am at a total loss as to what to do. Social work are visiting to do a social back ground report for the children’s reporter and there is definitely a lot of blame on me as the parent. As they say he is out of my control. I however know he’s not just a naughty kid. They have even tried to suggest that they think his sister will have the same issues. She definitely does not.



    https://www.pdasociety.org.uk/forum#/discussion/5956/pda-scotland-why-you-do-not-need-a-formal-diagnosis-

    I ended up in Parliament giving evidence in my case .

    I live just outside Kelso and we now have 8 cases plus recognised at my surgery alone .

    Will send you some links .

    Pat xx

  • Holly59
    Posts: 2,589
    https://www.facebook.com/groups/1129228007099112/

    https://www.pdasociety.org.uk/resources/Support-and-advice

    There is a map of support groups and lots more on the Facebook Link a little further down .

    I strongly suggested you get your MSP /MP on board . The attitude of the school is disgraceful . You also need to speak to Enquire and Govan Law Centre ,

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

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

    The statement from the Scottish Government is really interesting . It’s better listened to on YouTube .
    They are going to follow through our Petition to the Strategy Team and produce a Report .

    PDA is already linked to the Autism Toolbox and links to the PDA Society and NAS who recognise ASD-PDA .

    If it helps I can PM you . Just let me know .

    Parental blame is rife . I was offered parenting classes .

    Pat xx
  • Holly59
    Posts: 2,589
    https://www.thescottishsun.co.uk/news/1177049/autistic-boy-daniel-gourlay-school-mum-sue-inverness/

    https://www.dailyrecord.co.uk/news/scottish-news/scots-child-handcuffed-school-three-7278998

    http://www.heraldscotland.com/news/health/15035248.Mothers_in_plea_for_improved_awareness_of_behavioral_condition/

    It’s still very much a Post Code Lottery who will give a diagnosis .

    https://www.facebook.com/autismacademyuk/

    The Autism Academy can arrange a Private Diagnosis in Scotland . It is relatively new and not recommended as yet by the PDA Society . They have been extremly proactive in the Autism World . There are four recommended by PDA Society on the Clinicians Guide Page 35/6 .

    Help4Psychology at Norwich offer a pre assesment which can be done over Skype . The cost is £95 . That would give you an indication if they think it’s worth going onto a full assesment .

    There is also a link to show you how to get an out of area referral through the NHS . That’s on the PDA Society families link .

    You do not need a formal diagnosis for a CSP or DLA . The DLA you defiantly need support filling that in , its complicated .

    Don’t even get me started about Educational Psychologists , the two I met were clueless . I have found CAMHS find any excuse not to see you .

    Pat xx
  • Holly59
    Posts: 2,589
    https://www.pdasociety.org.uk/resources/awareness-matters-booklet

    I suggest you show this link to your SW . She needs to learn PDA Stratagies too to support you as a family .

    Don’t forget this questionnaire now needs updating . This is for extreme cases . Not all people are violent . Have you tried filling it in , what score do you get ? Don’t forget the role play means they are the Parent / Teacher. They control their lives and yours .

    Has your son ever been assessed for the co Morbid conditions like Dyspraxia , Dyslexia , dyscalculia , Hypermobile etc , they could be adding to his issues .

    As a parent you are entitled to ask for an assesment of your children’s needs through the LA . It’s Law . You as a parent can also ask for an assesment of your needs through your local Carers . That’s Law too !

    https://contact.org.uk/

    Contact , previously Contact a family are also very good in helping with advice .

    Your other children are entitled to extra support under the Additional Support for Learning Act . It’s anything that puts a barrier to a child’s education . They should also have IEPs minimum .

    https://itmustbemum.wordpress.com/2018/01/04/new-guides-for-parents-schools-when-a-child-struggles-with-school-attendance/

    Although this is based around English Laws it makes very interesting reading , School refusal and why every teacher should read it .

    In my opinion the majority of PDAers should not be mainstreamed unless the teachers and school are well experienced with PDA .

    I met some amazing teachers the previous year at Barrhead PDA Society training day . Your son might need a Specialist Schiool to accommodate his needs .

    Good Luck , I hope this gives you a start to getting the correct help for all your family .


    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198
    If you haven't already requested a referral for ASD-PDA assessment through your GP, I would do so pronto. With social services already blaming you, they are highly likely to continue down that route and it could be serious. Collect your evidence for a referral in readiness. If you can, video his behaviours, keep a daily diary, record how PDA strategies do or don't work. Complete and score the EDA-Q as Pat suggests and perhaps do an A4 bullet-point list of where you believe he meets the profile. There is the clinicians booklet on this website and also information on diagnosis. It's at least something you have a diagnosis of ADHD, because that is a neurodevelopmental disorder just like ASD is, social workers should look at everything through that knowledge and drop the parent-blame.
  • Holly59
    Posts: 2,589
    https://www.facebook.com/groups/1129228007099112/

    This group has a list of CAMHS and regional Hospitals who will give a diagnosis , I gave them names of Clinicians, Specialist Units , CAMHS who I came across during my research including one in Newcastle upon Tyne .

    You might consider if it’s feasible travelling down to Birmingham for the PDA Conference in April . I believe the PDA Society are hoping to return to Scotland for more training days in the future . There are links posted on the news page for training days around the Country .

    Take as much information to your GP as possible . The only thing I would add to the video evidence is your safety is paramount .You don’t want your mobile smashed against a wall or thrown at you . Even a verbal recording of an outburst is evidence .

    My youngest is at Edinburgh College and does not have a PDA diagnosis . If the school ignore you and ask for a formal diagnosis they are in breech of Education Laws .

    Make sure you get a full diagnosis in the future because your son might have PTSD or have psychosis because the correct Stratagies have not been used .

    You will have an inclusion Officer at your LA for Education .

    If your MP/ MSP fails to help you , you can then report them to the Prisiding Officer at Holyrood . I know for a fact that Ken Macintosh has had vast experience with a PDA family over the years and Christine Graham a deputy Prisiding Officer has dealt with another PDA family within the Borders .

    Pat xx





  • Holly59
    Posts: 2,589
    http://www.autismtoolbox.co.uk/understanding-autism/diagnosis/

    This information for teachers links to the PDA website .

    https://www.pdasociety.org.uk/resources/webinars

    The last Webinar was done by Phil Christie and Ruth Fidler the Worlds Leading Experts .

    One thing I would add to the above post is your safety is paramount . If you manage to get video evidence that’s great but be careful .

    You defiantly need a formal diagnosis in the future , don’t be fobbed off . Once your child reaches 18 it’s their choice if they wish to be assessed . If you can get a diagnosis now it’s easier long term .

    Keep a paper trail and if possible have a friend relative with you when the SW calls . There are some absolute horror stories on this site as PDA-ASD-Parent can verify from personal experience .

    Pat xx
  • HarHer
    Posts: 231
    Hello J2,


    I really feel for you. My son also refused/was unable to attend school and evidenced the same need to control as your son is showing. Some success was achieved by a tutor from the LA coming to the home. This may be a possibility. I agree with others about a formal diagnosis. My son was old enough to refuse diagnosis outright by the time we started to seek it.
  • Holly59
    Posts: 2,589

    HarHer said:

    Hello J2,


    I really feel for you. My son also refused/was unable to attend school and evidenced the same need to control as your son is showing. Some success was achieved by a tutor from the LA coming to the home. This may be a possibility. I agree with others about a formal diagnosis. My son was old enough to refuse diagnosis outright by the time we started to seek it.



    Hi,
    Totally agree . This is where it gets very complex .

    http://www.autismparentssupport.org/Parents of adults with autism & Power of Attorney.pdf

    Pat xx
  • PDA_ASD_Parent
    Posts: 4,198

    Cahms are saying it’s extreme social anxiety.



    Which is often a feature of ASD, they have to look into the cause for the behaviours not just label the behaviours.

    Bear in mind, that someone can have both Asperger's and PDA.
  • robertM98
    Posts: 1
    Hi, as parent it is a big responsibility to have a child with ADHD, my son 14 years old was diagnosed when he was 7 years old, since I manage to provide him anything and love my child more and more.
  • June67
    Posts: 571
    Hi J2, what you are going through sounds similar but more serious than with my son who is still waiting for any form of diagnosis. The manipulative refusal behaviours are a killer when the total meltdowns over anything and everything are constant and you're trying to manage 'normal' life. At least CAMHS are talking to you now and you may get a correct diagnosis it's so unfair that the whole family has to be at breaking point before they help and even then they are trying to blame you because it's easier than doing their job properly. Try to keep yourself strong, you can't help anyone when you're exhausted. Hoping things get better for you all soon. June
  • HarHer
    Posts: 231
    I can only echo what other posters are saying. However, my youngest benefited from a specialist dentist who treated him for several years. We also had tutors provided by the LA from the local Pupil Referral Unit. When he got the same tutor consistently, things started to improve.

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