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Adult PDA

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
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
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@Brightsidebecs
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...