Pathological demand avoidance (PDA) on the autistic spectrum -awareness

fisheralison2006
fisheralison2006 Online Community Member Posts: 5 Listener
edited January 2018 in Everyday life
hello, I'm new here and I'm trying to raise awareness of PDA which is a sub profile sitting alongside ASD.  

Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas:

  • Social Communication Difficulties
  • ​Social Interaction Difficulties
  • Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)
More information can be found https://www.pdasociety.org.uk/what-is-PDA/about-pda

we are currently campaigning for more awareness - please take 2 seconds to sign our petition to ensure children and adults with asd PDA receive the correct support it is key to their success in life.

https://petition.parliament.uk/petitions/202680

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Welcome to the community @fisheralison2006, and thank you for sharing this with us!
  • jamaicanbluetaz
    jamaicanbluetaz Online Community Member Posts: 5 Listener
    Hello there - will be interested in following your posts as I believe my son has PDA but already has Asperger diagnosis.
  • fudgee
    fudgee Online Community Member Posts: 4 Listener
    I think awareness is definitely needed, we struggled with our son and knew there was something else with him though we had other children with autism his was different, exploding behaviour, hitting teachers etc, it was advanced solutions who told me that it sounds like PDA I had never heard of it before even studying child psychology and salt I had never came across it even in my modules with co existing conditions with Autism.  

    After mentioning it to his teacher she hesitated “is that even still a thing”? and disregarded it, I took it upon myself to reach out for an assessment through CHAMS they accepted a self referral which was so reassuring not having to rely on a teacher to refer, to my surprise it happened quickly within 3 months, they did a video call with myself and also teacher, there was more than enough evidence and he was diagnosed.

    I think parents do rely on schools to notice these conditions but even schools are not aware of this and because it affects people differently it can be difficult to spot, but if after trying every possible way and the child is still struggling, I would advice any parent to reach out themselves for an assessment. It’s very important to get early help, people thought my son was just naughty but I knew he was struggling and needed help, the difference it has made putting strategies in place. 

    i will definitely be following this thread. 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Thanks for sharing your own experiences in such detail @fudgee, that's great to see.

    As this thread is a few years old now, the members posting on it might not be active, or might take a while to get back to you, but I'm glad you found it so engaging and restarted the discussion :) 

    It's a really positive thing to encourage reaching out for help, as you say, relying on schools could mean that conditions are missed or misunderstood.
  • fudgee
    fudgee Online Community Member Posts: 4 Listener
    Yes I totally agree, but old threads can reappear and continue, I was adviced to scope after my child’s diagnosis, and I have to be honest I hasn’t seen much recent discussions about PDA, which is why I bumped this thread, I would like to see a category for PDA with a co existing category of Autism, if it’s available please advise and provide a link, I think the thread would be useful to many parents and professionals, and most importantly raise awareness. 
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing
    edited August 2022
    Hello @fudgee. Thanks for bumping this thread.

    As an autistic adult working in autistic education, I agree with you that it would be useful to many families/carers and professionals.

    I think it would be even better if we could also help to highlight the differences between autism and PDA though otherwise it just becomes embedded!  <3

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