Support for PDA adults

Description:

This page signposts some sources of useful information, support and advice for PDA adults and their families.

The PDA Society takes considerable care to check the services that we signpost, however we’re not responsible for the quality, experience or outcomes from third party organisations. We’re currently developing an accreditation process for services and organisations and will list these in due course, in the meantime please use our enquiry line service for more information if required.

When accessing services and support, it is likely that you’ll need to share information about the PDA profile of autism and what approaches are helpful with PDA with all the people (including clinicians) you are in contact with – please feel free to print off or send links to any of the information on our website. We’ve also put together some PDA-related suggestions for healthcare passports.

Please note: The National Autistic Society provides lots of information, guidance and support for adults on the spectrum – whilst this may need some adaptation for PDA, the principles will remain the same. Where links are listed below, an * is included as a reminder that some adjustment may be needed to take account of demand avoidance.

​PDA specific support

Helpful approaches

Please see self-help, coping strategies & therapies page.

For parents, partners and carers, our Keys to Care resource has some helpful pointers and some of the helpful approaches for children may also give some useful ideas that can be adapted to be more suitable for adults.

Identifying with others’ experiences

There are three books written by adult PDAers: PDA by PDAers, The PDA Paradox and Pathological Demand Avoidance Explained and several advocates share information online.

The PDA Society has compiled pages about Adult Life with PDA as well as a series of case studies.

Assessment/diagnosis

Please see diagnosing PDA – adults page.

​Advocacy

​Some PDAers may be able to advocate for themselves – the PDA Society alert cards are useful to share with people you come into contact with; others may benefit from support in this area.

We’ve also put together some PDA-related suggestions that may be helpful to include in healthcare passports.

​Transitions

​Times of transition (such as leaving school, beginning work or volunteering, going to college/university, leaving home …) can be difficult for everyone, and especially so for PDA individuals.

Please see the following PDA Society resources:

Please also see the following pages from the National Autistic Society*:

and this Transition to employment toolkit by Ambitious about Autism.

​Support from Social Care

Your first step in terms of accessing social care will normally be to contact your local adult social care team. The following links may be helpful – and our Keys to Care resource and What is PDA? booklet are helpful to share with social care professionals:

​Support from health & mental health services

​Your first step in terms of accessing health and mental health services will usually be your GP, who can then refer you on to the most appropriate service such as the Adult Community Mental Health Team. NICE has produced guidelines on ​Managing Autism Spectrum Disorder in Adults

These organisations can offer advice in relation to mental health concerns:

These links and organisations can offer advice and support for individuals in inpatient settings:

Speech & language therapy

Support for Selective Mutism

Occupational therapy

Concerns/complaints about health & mental health services​

​Support/training​

​​Please see details of training from the PDA Society and others who provide training for professionals and parents/carers supporting PDA adults. Also some of the independent diagnostic centres listed on the diagnosing PDA – adults page can also provide one-to-one support and consultancy.

Benefits

For details of benefits such as Personal Independence Payments (PIP) and/or Employment & Support Allowance (ESA) please see:

​​Encounters with the law ​