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Can medicin help PDA? Son 18 years cant even eat.
  • Hi! I´m new here. Hope you can understand my english and bad spelling. I live in Sweden where PDA is not well known but when I found this page I start to understand why we have not managed to help our son. He also spontaneously sad "- it sounds like me." when he read the description "anxiety driven need to be in control .."

    My son did get an autism (asberger) diagnos when he was 7. Then we thought it would bee easier to understand him but not. It has always been a fight to motivate him to do things (get up from bed, come and eat, go to bed, take a shower etc.) and when he grow older he found out a lot of rules we or he had to obey. (he can't write, he can't walk on wrong side of a person, if he would get out of bed we had to say and do exactly right things, etc.). When we tried to reduce stress he got understimulated (He is extremly clever (2e) and need to be stimulated) and more obsessions occcured. Since he was 14 he has had medicin against obsessions and meltdowns and at start it made a great difference. Meltdowns almost dissapeared and we could talk about the obsessions. But they did not disapear.

    At 16 years old when he got to a new school the demands where to high. The obsession increased and last year the lokal school gave up on him. He was in a small special class for autism children but they could not handle him. Then we found an autism school with internate for children with big needs. Our son agreed to go there and seams to like it.

    But now his avoidans of demands are extreme and the dormatory don't manage to help him. He has not managed to get to school more than 5 days last semester. He don't even get out of bed until late afternoon. We hoped it should be better after Christmas holiday but last night when I talked to them he had not had breakfast yet. He has lost a lot of weght. Some days he get up to late for dinner and then he don't eat anything but little yoghurt and some fruits for all day.

    The situation is absurd. We hoped that, at last we would get help from people that are experts and know how to help our son and we ended up trying to help them while we are 300 km away. :( However it is god for our self confidence, mayby we are not as bad parents as we thought.

    Now some questions.
    Is it usual that PDA-s also have ADD? I think one of the reasons he can't get out of bed is his lack of executive functions (engine).
    Is it usual with OCD for PDA-s? Our son has a lot of obsessions and rules that we or he has to follow if he shall be able to fulfill simple demands. If we accept the obsessions they grow and if we don't we get a tough time.
    Anyone who has positive experience from medicin that help to manage elementary demands?
    Any more advices?




  • Holly59
    Posts: 2,589

    PDA-mamma said:

    Hi! I´m new here. Hope you can understand my english and bad spelling. I live in Sweden where PDA is not well known but when I found this page I start to understand why we have not managed to help our son. He also spontaneously sad "- it sounds like me." when he read the description "anxiety driven need to be in control .."

    My son did get an autism (asberger) diagnos when he was 7. Then we thought it would bee easier to understand him but not. It has always been a fight to motivate him to do things (get up from bed, come and eat, go to bed, take a shower etc.) and when he grow older he found out a lot of rules we or he had to obey. (he can't write, he can't walk on wrong side of a person, if he would get out of bed we had to say and do exactly right things, etc.). When we tried to reduce stress he got understimulated (He is extremly clever (2e) and need to be stimulated) and more obsessions occcured. Since he was 14 he has had medicin against obsessions and meltdowns and at start it made a great difference. Meltdowns almost dissapeared and we could talk about the obsessions. But they did not disapear.

    At 16 years old when he got to a new school the demands where to high. The obsession increased and last year the lokal school gave up on him. He was in a small special class for autism children but they could not handle him. Then we found an autism school with internate for children with big needs. Our son agreed to go there and seams to like it.

    But now his avoidans of demands are extreme and the dormatory don't manage to help him. He has not managed to get to school more than 5 days last semester. He don't even get out of bed until late afternoon. We hoped it should be better after Christmas holiday but last night when I talked to them he had not had breakfast yet. He has lost a lot of weght. Some days he get up to late for dinner and then he don't eat anything but little yoghurt and some fruits for all day.

    The situation is absurd. We hoped that, at last we would get help from people that are experts and know how to help our son and we ended up trying to help them while we are 300 km away. :( However it is god for our self confidence, mayby we are not as bad parents as we thought.

    Now some questions.
    Is it usual that PDA-s also have ADD? I think one of the reasons he can't get out of bed is his lack of executive functions (engine).
    Is it usual with OCD for PDA-s? Our son has a lot of obsessions and rules that we or he has to follow if he shall be able to fulfill simple demands. If we accept the obsessions they grow and if we don't we get a tough time.
    Anyone who has positive experience from medicin that help to manage elementary demands?
    Any more advices?






    Hi
    Welcome to the Forum ,

    First of all there is a section for families with specific Stratagies that should be used for ASD-PDA . The school must use these Stratagies because normal Autism Stratagies do not work in PDA .

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

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

    Yes it is common to have a number of overlapping issues such as ADHD , ADD , OCD . The co Morbid issues such as Dyslexia , Dyscalculia , Dyspraxia are often missed .

    Eating and sleeping issues are common within the Spectrum . Eating is a Demand !

    http://www.autism.org.uk/about/health/eating.aspx

    https://www.sleepassociation.org/patients-general-public/delayed-sleep-phase-syndrome/

    Can I suggest Help4Psychology who is based in Norwich England . They deal with clients worldwide and will work off Skype . They are recommended by the PDA Society .

    https://www.help4psychology.co.uk/services.html

    You can also watch the Webinars which are the easiest way to learn about PDA and the techniques to use . There is a Webinar specifically for Education . Hopefully the school can learn PDA techniques .

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

    Personally one of my sons tried medication for a while , Ritalin , but unfortunately this was not successful .

    https://www.facebook.com/groups/pdaglobal/?fref=ts

    I can’t see a specific support group for Sweden but the Global Group should be able to assist you .

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

    School refusal is a common issue in ASD-PDA ers .

    If the school are not using PDA Stratagies this will make the extreme Demand Avoidance worse .

    https://gillbergcentre.gu.se/english/research/diagnoses--methods-and-ongoing-studies-at-gnc/pathological-demand-avoidance--pda-

    You could contact this University in Sweden and ask if they have any knowledge of local specialists to your child’s school that might be able to help and guide you .

    Good Luck

    Pat xx

  • Thank You very much for your advices and links. I'll read it all when I get time and hope the school will read it too.
  • PDA_ASD_Parent
    Posts: 4,198

    Now some questions.
    Is it usual that PDA-s also have ADD? I think one of the reasons he can't get out of bed is his lack of executive functions (engine).
    Is it usual with OCD for PDA-s? Our son has a lot of obsessions and rules that we or he has to follow if he shall be able to fulfill simple demands. If we accept the obsessions they grow and if we don't we get a tough time.
    Anyone who has positive experience from medicin that help to manage elementary demands?
    Any more advices?



    Hello, executive dysfunction can also be a large part of all ASDs, but as Pat says, there are commonly co-existing (co-morbid) neurodiverse conditions with ASD (including PDA), therefore ADD is quite likely if his executive dysfunction is very great. The research states that up to 80% of those with ASD have ADHD/ADD. OCD is also very common and is often in-built to the ASD.

    I think PDA and OCD is a particularly difficult combination, but then so is PDA and ADHD.

    Medication is a tricky one. All people including autistics are individual when it comes to how medication works. Often autistics are particularly sensitive to side-effects of medication. We tried Sertraline which didn't work, also Aripiprazole and also another one which the name escapes me for the moment. None were effective. In the UK the official guidance is that ASD is not to be medicated, only if there are co-morbid mental health difficulties which need medication. So it's pot luck really. You could speak to your son's psychiatrist about what might be worth trying but I would advise doing some research about possible side-effects before agreeing to anything.
  • PDA_ASD_Parent
    Posts: 4,198
    I would also definitely insist that the school read information on PDA and they can start with this website. They need to try different tactics, e.g. reverse psychology ("bet you can't do x, y, z" or saying he's not allowed which will probably then make him be oppositional and insist on doing it!), humour, making it into a fun thing. Also they could try asking him to explain how he is feeling and what he thinks might help him.
  • Hi PDA_ASD_Parent!
    Thanks for ansver and advice.

    I've kind of past the time when I was woried about side-effects from medicin. Anything that could help him I'm ready to try. The path he is following now woun't lead to a god life. And when we are gone, what will hapen if nobody manage to help him to get up in morning, eat and take a shower??

    We have the same rules her about medicin. And our son got medicin for meltdown and obcessions. But he don't get anything to help him concentrate or get the engine work better beqaus he do not have ADD on paper. In the papers it says Autism and problem with concentration and hypoactivity but not ADD. :(

    I have a theori that ADD might be his main problem together with demand avoidanc. Than the obcessions starts like cooping strategies to explain to us and himselves why he can't do things. And after that the obsessions start to be a problem on its own due to OCD. The autism is a big part of him but it should not stop him from having a god life if he gets help with houskeeping and is accepted as an special individual.

    The reverse technik worked well when he was younger. But now he is 18 and can't be "fooled" that easy. Same about humor. When he has an obsession about geting up from bed there is not much that can distract him. He woun't get up until the personell says exactly right things and they are not alowed to say anything else. They try to do exactly as he tells them and still it does not work. Most of the time when we ask him he ansvers that he don't know. But he has told us that geting up is exctreamly hard for him and he don't know why.


  • PDA_ASD_Parent
    Posts: 4,198
    I understand. But bear in mind there can be severe side-effects including in some cases, making young people suicidal. Be sure you know all the potential side-effects first, especially if the medication only has a limited positive effect. It might also be worth if you can, getting a medical check-up including blood testing because he could have chronic fatigue or a vitamin deficiency that is affecting his mood and energy levels. You could try some energy "build-up" drinks whilst he isn't eating properly.
  • Holly59
    Posts: 2,589

    PDA-mamma said:

    Thank You very much for your advices and links. I'll read it all when I get time and hope the school will read it too.



    I totally agree with PDA-ASD-Parents comment about the side effects of medication . The side effects of Ritalin are horrific . Many drugs we have used for my eldest son , three different antidepressants made him suicidal and the epilepsy seizures more frequent .

    Some people have a positive experience with certain drugs but often it’s trial and error . Again a specialist in PDA will advise on a pathway for support .

    You’re main issue at present is to get the PDA Stratagies implemented as soon as possible at the Residential School. I agree also it’s imperative they check his bloods , he could be anaemia .
    They must encourage him to drink .

    With PDA what works one day won’t work the next . . You learn by experience to choose your battles carefully . It will take a while for these Stratagies to work but don’t give up be consistent .

    I hope you can get a qualified Consultant who understands PDA to correctly diagnose your son soon .

    Pat xx
  • Actualy I would not call my son a school refusal. He want to go to school and it works quit OK when he is there. The school have god strategies to make him interested and reduce demand. Education is one to one and focused on subjects that interests him. If it do not work, they play games and make jokes. The problem is he do not manage to get out of the bed, get dressed, have breakfast and go to school.
    The personell at the dormatory are not taking any battles at all. They use a technic when they try to help him do right, not force him. Unfortunately it has not worked, he need someone else to tell him what to do and in the same time, he do not accept orders and authorities. Not easy. When they let him decide how they shall help him, his rules got more and more complicated and impossible to fullfill.
    We told them already in spring they could not accept his rules but they would not lissten and now it is not easy to change.
  • During chrismas holliday we managed to take a blood test on him but we have not got any results yet. Lets hope he has lack of vitamins or something else that can be easily fixed.
  • PDA_ASD_Parent
    Posts: 4,198
    Is there any way they can make him lounging in bed as unattractive as possible to make him choose himself to get up? Maybe having other children making a noise near an open window, making the sounds of really fun stuff nearby outside his room that he will want to join?
  • Is there any way they can make him lounging in bed as unattractive as possible to make him choose himself to get up? Maybe having other children making a noise near an open window, making the sounds of really fun stuff nearby outside his room that he will want to join?



    I think you are right about that idea. If something specal is planed he can manage to get up. Last day in school before chiristmas he managed to go there for the first time that month. He had been informed that they would selebrate with christmas gifts for everybody. Its the "ordinary" days that don't work. But there is no children there, everybody is 16 or older so its not easy to make noice in a natural way. The plan is now to try stop his obsessions but it will not be easy.

  • Holly59
    Posts: 2,589

    PDA-mamma said:

    Is there any way they can make him lounging in bed as unattractive as possible to make him choose himself to get up? Maybe having other children making a noise near an open window, making the sounds of really fun stuff nearby outside his room that he will want to join?



    I think you are right about that idea. If something specal is planed he can manage to get up. Last day in school before chiristmas he managed to go there for the first time that month. He had been informed that they would selebrate with christmas gifts for everybody. Its the "ordinary" days that don't work. But there is no children there, everybody is 16 or older so its not easy to make noice in a natural way. The plan is now to try stop his obsessions but it will not be easy.



    Hi,
    If you suspect your son had ASD-PDA the only way forward is to start using PDA Stratagies . Your Written English is excellent .

    Could I make a suggestion . Laura Kerbey who offers training courses in ASD-PDA works off Skype . If it was possible either yourself or the Residential School, hopefully someone speaks English , could ask for support .

    https://www.pdasociety.org.uk/forum#/discussion/6025/pda-support-off-skype.

    Both companies work off Skype .

    Normal Autism Stratagies do not work . Have you forwarded the information to the Residential School


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

    https://www.pdasociety.org.uk/education
    ?

    Pat xx
  • Thanks for your advices. I also think the school needs support.

    We are trying to reach Gillberg center i Sweden to get someone that can give advices to the school in swedish. Even if everybody in sweden talk english its a big differens to have a discussion on your oun language. And I would also like if we got an consultant who can meet our son. If we do not manage to find someone in sweden we can try Skype.

  • Holly59
    Posts: 2,589

    PDA-mamma said:

    Thanks for your advices. I also think the school needs support.

    We are trying to reach Gillberg center i Sweden to get someone that can give advices to the school in swedish. Even if everybody in sweden talk english its a big differens to have a discussion on your oun language. And I would also like if we got an consultant who can meet our son. If we do not manage to find someone in sweden we can try Skype.



    I totally agree . I hope you find someone at the Gillberg Center to help both your son and the school support your son .

    https://www.facebook.com/groups/pdaglobal/?fref=ts

    My other suggestion would be this Global Facebook Group .

    Hope you find someone soon .

    Pat xx

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