Autism and Aspergers
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Adult PDA

apples21apples21 Member Posts: 3 Listener
edited March 2020 in Autism and Aspergers
Hi everyone, 

I'm a advocate for my brother who has PDA, i'm becoming a bit overwhelmed, I feel as though all of the support from various different services don't really meet his needs i.e meet ups and social activities as he's completely isolated with high levels of anxiety. A lot of the different places i've sought advice from send me links or phone numbers for different places, who all give me different phone numbers for different places all in which results in no practical help. He's pretty much opposed to the idea or anything new or anything changing anyway and basically we go round in circles for many years without anything changing. 

I'm just wondering how others deal with the mine field of seeking support? finding the right help? general discussion about PDA and coping strategies.

Regards,
Ellie

Replies

  • BrightsidebecsBrightsidebecs Member, Scope Volunteer Posts: 88 Pioneering
    Hi I’m a community champion here to help. Does your brother have a social worker? 
    Rebecca 
  • chiariedschiarieds Community Co-Production Group Posts: 9,221 Disability Gamechanger
    Hi @apples21 - Welcome to this community & thank you for joining. I'm sorry to read about your brother's problems, & how you seem to be going around in circles & getting nowhere. At the risk of sending you links you may already have, please see: https://www.pdasociety.org.uk/resources/Support-and-advice
    Does your brother live alone, or with you?
    I can understand that you feel overwhelmed with it all; it must be very difficult. I hope others may have further ideas, & know we will all do our best as a community to try & help & support you both. Please talk here any time too.

  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @apples21, how are things going? :)
    Scope

  • BrightsidebecsBrightsidebecs Member, Scope Volunteer Posts: 88 Pioneering
    Hi @apples21 as @Chloe_Scope has last week I thought I would also check in with you and see how things were going? If you need anything please don’t hesitate to ask!

    @Brightsidebecs
    Rebecca 
  • kiwi_1706kiwi_1706 Member Posts: 24 Listener
    Hi apples21,

    I care for my husband who has diagnosed Autism (we're both fairly convinced it's PDA). I am an Occupational Therapist myself, and I worked for the NHS for many years,but the support I've managed to access for him is fairly negligible. I have started referring to health and social care as more of a mirage... you think you can see some kind of help or support in the distance, but when you get there, it disappears. It sounds as though you have had much the same experience.

    Has he had a social care needs assessment? If so, was it recent? Does it need to be reviewed ie if it was a while ago, or if you feel his needs have changed? 

    If he is suffering from anxiety, has he been assessed by a psychiatrist to determine whether he has developed any kind of anxiety disorder (very common in PDA)? If not, then that would be a good way forwards, as they may be able to provide him with some medication and psychological support.

    There is a good facebook forum for PDA though, called "Pathological Demand Avoidance (PDA) Support Group". A lot of it is geared towards children, but I have found it extremely helpful for adult issues too, and full of people experiencing very similar obstacles... 
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