Pathological demand avoidance

Hi

My son had PDA and severe Anxiety!

  • Hi mumypda I am in the same boat and know exactly where your coming from. My son suffers from severe anxiety and I believe he has PDA but it has not yet been diagnosed. The hardest thing I have found is trying to get the school on the same page as they don't believe him because he will say and do anything to avoid the demand put on him. The struggle is real

  • My son is 9 and I have only recently come across PDA and had a light bulb moment . I have been referred to CAMHS  and know this process will be a long one. Is there any help out there in the mean time for my son as his anxiety is through the roof and his behaviour is escalating very quickly. 

  • Hi Stilllearning

    Schools, teachers and health professionals are the ones who severly delay our children getting a diagnosis or the right support. This is because of our childrens great ability to mask at school.

    I'd love to be able to tell you I've been supported but sadly it's been a nightmare and further damaged my son and my health! I had my lightbulb moment back in 2008 when no-one knew about PDA literally! I'd had to put up with "he's not like that at school" = "have you thought about a parenting course" and years of getting agencies in the schools, assessment after assessment only for them to keep going on about my sons distruptive naughty behaviour!

    No-one and I mean no-one believed me for 8 years and blamed my depression.

    My son could only mask for a certain length of time before his symptoms stared getting worse and showing at school.

    No-one listened to me when I mentioned his obsessions and rituals - his meltdowns at home which lasted until bedtime, and everything else that comes with PDA!

    The school thought it was acceptable that M threw himself on the floor and rolled around refusing to get up - Thee'd drag him out when he hid under tables (daily) and drag him around by his arm in PE.

    It got to a stage when he couldn't stay in class so he would walk out - but was scolded for it daily.

    He's been to 4 primary schools - because he was full of tics and controlling!

    Eventally I removed him on the grounds that school was detrimental to his health - I had to insist that the dozy senco start a process for an EHCP as no-body was doing anything - and I mean no-one seem to give a stuff that my son couldn't stay in class, was full of tics - it wasn't until he started self harming that they admitted there may be a problem - but still I had no support or help - I HAD TO INSIST ON EVERYTHING!

    CAHMS have been a complete waste of space - they dismissed my son 5 times over the years - even when he was reffered by the crisis team! If they know it may be conected with an autistic spectrum disorder they don't help you!

    Eventally after 9 years of fighting and him being damaged I removed him - he lost 9 months of education because he didn't tick the box for any home help.

    I now have my son in a special school which is better but not ideal.

    Hertfordshire county have no provision for autism/high finctioning autism.

    The environment is more holistic and they work to his needs - but he still has many communication issues, and other deficits regarding time and space - can't organise himself or go out! His anxiety is severe! But he's happier, his tics have gone and he appears "normal" I hate that, because my son's normal is normal for him - but when he's not anxious you wouldn't know anything is wrong with him - and this is where the biggest problem lies!

    Where do you live? I live in Buntingford, Herts xx

  • Sorry to hear about your lack of support and terrible experience. It fills me with dread to think that you have suffered this long and still nothing has changed to help support children with PDA.  For years me and partner knew something was going on but has no clue and with the school constantly saying there felt he was fine and where he should be. 

    He eventually moved schools as he was being bullied physically and emotionallyand the school did not take it seriously in the slightest. 

    My son has recently been walking out of class because he can't cope and as the teacher won't listen he just walks out but then will get into trouble. The anxiety at school is immense and I'm trying to get them to understand but they don't have the time or patience.

    I am trying to learn everything I can about PDA so I can help him lessen his anxiety otherwise I know it will get so much worse but without the schools help I'm going to be hitting a brick wall .

    It's so frustrating and I do feel helpless and my own mental health is suffering. 

    I'm in Berkshire xx

  • Hi Stilllearning

    Don't allow your situation to get as bad as mine did.

    Do gather as mush info on PDA as possible and take it to the school/doctor/anyone else who will be involved with your child.

    Push/Insist on assessments

    Don't allow your child to become so anxious that he starts self harming!

    Always stay calm at home so that they feel safe - even when they are challenging you - remind yourself it's a symptom (not them) give loads of hugs and reasurance and remind them everyday that you love them and are watching out for them.

    If it is PDA and not supported in the right way, please be aware that he may get much worse - My son has been damaged by mistreatment.

    Keep a diary of everything that happens that you are concerned about - everyday - every single little thing that you find odd otherwise you will forget all the detail.

    Keep copies of ALL paperwork from educational psychologists or any agencies that the school bring in to support him (which they may eventually do) but you have to nag them (constantly) otherwise nothing gets done.

    Remember make it your mission to gather evidence - so that eventually you can push or insist on an EHCP but you will need the school to back you up and lots of paper based evidence.

    Stay focused in what you need to gain and push push push - You will need to ne your son's voice!

    Try to always remember that you are not alone - don't let them make you feel bad - I know it's hard - I've walked your road and I really do know and understand how crippingly lonely it can be ... You know your son - and you know that he may be on the autistic spectrum - because our children are "high functioning" and exellent at masking to get through the day it's feels like you are fighting a losing battle - but you're not!

    Take in website addresses and tell them to educate themselves!

    Please don't feel helpless - I and many many others are paddling in the same boat - if you need to vent please just contact me if you need some support or just a chat - or to simply know that you are not alone.

    My name is Gail and you can text or call me if you need to on [removed].

    I sincerley hope that your situation doesn't get as bad as mine did.

    Things are so much better for us now that I've modified my ways to fit around my sons needs - plus he goes to a special school now so copes much better!

    I never get angry with him now - always keep the vibe in the house nuetral if I can - it really helps - plus he's 13 now - but boy has he been through it (and me) I take antidepressants I won't lie - but they do help - How I haven't had a breakdown I don't know! My head was so confused and with teachers, health professionals and even the doctor not believing is almost too much for anyone to bear!

    Please don't give up - Stay strong - Stay positive and focussed and remember to collect evidence!

    Let me know how you get on with CAHMS 

    Gail x

  • Hi Gail,

    I've made an edit to your otherwise very helpful post, because we don't allow people to post their personal information on the forum due to privacy concerns. So I've removed the phone number, but you're free to send it in a private message if you like.

    Thanks,

    Ross - mod

  • I am trying Raise Awareness of PDA, you may like to sign this https://petition.parliament.uk/petitions/202680