Support & Signposting

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Eating Disorder Support

This page signposts some sources of useful information and support regarding eating disorders. 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. 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. PDA-informed resources Keira’s story Keira is 17 and currently doing very well after a 10 year struggle with an eating disorder and difficulties related to her PDA profile not being understood or supported by health and social care. Her story illustrates the life-changing impact when professionals adapt their practice to be person-centred and PDA-friendly. Sharon Donaldson, director of the specialist eating disorder unit where Keira was an in-patient, also shares how she and her team worked with Keira and her family to develop the personalised, holistic approach which was so key to achieving a successful outcome, and is now being [...]

Pets and PDA

For some people, owning a pet greatly improves both their mental and physical wellbeing - research shows interacting with animals reduces blood pressure, lessens anxiety and improves social interactions. Many autistic individuals and their families find pet ownership particularly beneficial. A study by Lincoln University, for instance, found that autistic children experienced fewer meltdowns, and their parents felt less stressed, if a dog was nearby. For others, however, pet ownership comes with too many challenges. As with all things, there’s no ‘one size fits all’ approach. This resource includes the responses to our survey about PDA and animals carried out in February/March 2021 some tips and information relating to pets and PDA a case study sharing the benefits Sarah, an adult PDAer, gains from her assistance dog Millie-Bear. Survey results 94% of respondents own, or have owned, a pet. 50% of these were dogs and cats (in line with UK average pet ownership) with a wide range of other pets and animals: Benefits 92% respondents find pets beneficial in a range of different ways … Sensory benefits Pets of all sizes can (often unknowingly) deliver deep pressure therapy. The body weight of an animal activates the parasympathetic (rest and digest) nervous system and helps to reduce [...]

Sources of further understanding

In addition to the information signposted throughout our website, we’d like to draw your attention to these additional sources of information, topics or fields of study which we feel are helpful in furthering understanding about PDA. This is a living list which we'll add to over time - if there's something you've found especially helpful and relevant please do get in touch with us. Neurodiversity The neurodiversity 'movement' views neurological differences (relating to cognition, sociability, learning, attention, mood and so on) as part of natural human variation - as a difference not a deficit - and embraces the social model of disability, whereby it is society's barriers that cause neurodivergent people to be disabled rather than their conditions per se. There are a great many neurodivergent advocates - experts by experience - sharing invaluable information and insights. Some offer training or mentoring, others are engaged in research, writing books/blogs and creating memes. From a PDA specific perspective you may wish to read more from: Kristy Forbes Julia Daunt Sally Cat Dragon Riko Rabbi Shoshana Many academics, authors and speakers' work is also very relevant and informative - here are a few to get started: Peter Vermeulen's work is on understanding autism "in the [...]

Home education “hub”

Elective home education - helpful approaches & resources for PDA This resource consists of helpful approaches and resources to support parents who are home educating PDA children and young people. For general guidance and legislation about elective home education (EHE) in the UK please visit the relevant government website for your country below … England Wales Scotland Northern Ireland … and organisations such as Educational Freedom, Education Otherwise, Home Education Scotland and Home Education Northern Ireland also offer information, guidance and support to home educating families in the UK (including the deregistration process). Other national and local home education support groups can be found online and on Facebook too and can be invaluable as a support network (groups suggested to us are listed below, under resources). PDA Home Education is a third party run Facebook group specifically for people who are (or are considering) electively home educating a PDA child. It’s a helpful forum for sharing ideas and experiences and for supporting each other. Helpful approaches The suggestions below are not exhaustive; there are no limits on the way learning can be achieved when you electively home educate and home education can look very different from family to family and person to person so [...]

Transition to adulthood

When we think about transitions we naturally think about the big transitions like leaving school or transferring from primary to secondary school. But transitions of any kind, at any time, may be difficult for PDA individuals. Starting a new club or activity, leaving home in the morning to go to school or work, even moving from their bedroom to the kitchen, can be extremely difficult for some. Transitions are a demand. This page focuses on transitions to adulthood, i.e. beyond age 16. It’s good practice for schools to start thinking about transition for SEND children from year 9 (age 14). For children with an EHCP, this will start at the Y9 annual review and a Transitions Team Social Work should be invited to attend alongside the parents, school, local authority and any other relevant professionals involved with a child. The options for post 16 are: Sixth form College Apprenticeship – children with an EHCP may be able to access a supported internship programme Work – please see our workplace adjustments for PDA page and this Transition to employment toolkit by Ambitious about Autism Or a child may need support from Social Care to find meaningful activities or voluntary work, and some may [...]

Coronavirus support

We've collated and created specific resources to support the PDA community during the Coronavirus pandemic. They are spread across 5 pages: Links and tips for the PDA community during the Coronavirus pandemic Helpful approaches with PDA during the coronavirus outbreak Accessible information (social stories etc.) Information about mental health UK GOV Guidance Face coverings information School & college Guidance: visiting loved ones in inpatient settings, care homes and supported living Other useful links from various sources PDA Society resources including PDA Alert & Awareness card, PDA-related suggestions for healthcare passports and tips on helpful approaches with PDA during the coronavirus outbreak Visit page     Coping with the coronavirus outbreak – tips from adult PDAers PDA Society adult PDAer panel members have kindly shared their tips for coping with the coronavirus outbreak. Visit page     Free resources and other useful links whilst at home during the Coronavirus pandemic Activity ideas Education resources Mental health & wellbeing Fitness & sports Fun challenges ebooks, audio books, virtual tours & online talks Speech, language, communication & SEND reources Sensory & OT activities and resources Visit page     PDA Society Coronavirus Q&As A series of video and written Q&As with our trustees & advisors answering the PDA community’s questions relating to PDA during the coronavirus pandemic. Visit [...]

National Autistic Society PDA resources

Here are links to some of the National Autistic Society's PDA resources: Pathological Demand Avoidance (PDA) PDA - a guide for autistic adults PDA - a guide for parents and carers Pathological Demand Avoidance? An adult's perspective Post-diagnosis support - a guide for autistic adults Meeting the educational needs of pupils with a PDA profile National Autistic Society PDA Conferences Please see the National Autistic Society’s events page for information about the current year’s conference and summaries from previous conferences here: 2019, 2018, 2017, 2016.

Support for PDA adults

This page signposts some sources of useful information and support 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. 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 PDA Society Enquiry Line Service PDA Society Forum Support groups: please see details of online support groups for PDA individuals and families of PDA adults here. Helpful approaches Please see self-help, coping strategies & therapies page. For parents, [...]

Support for siblings

It can be tricky to balance the needs of individual children within any family, and this can be even trickier in PDA households. Our Siblings page offers information around supporting siblings. A parent to a PDA child has also written two very helpful documents: a Q&A for Siblings and Personal Thoughts about PDA Siblings. Links to other sources of information and support for siblings and young carers are listed here. Third party support groups: PDA Sibling Support Facebook group (for teenagers 13-17)    

Support for parents & carers

This page signposts some sources of useful information and support regarding health, social care, justice, benefits and more. 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. 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. PDA specific support PDA Society Enquiry Line Service PDA Society Forum Local PDA support groups Online PDA support groups Training Recordings of our past Q&A sessions, where guest speakers with lived experience answer questions about PDA and specific topics, are available to purchase for 30 days via our training hub Mental Health Your first step in terms of accessing mental health support would normally be to contact your GP who will be able to refer you on to the relevant services, such as CAMHS (Child & Adolescent Mental Health Services). The following links may [...]

Education support

This page signposts some sources of useful information and support regarding education. 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. 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 you are in contact with – please feel free to print off or send links to any of the information on our website. PDA specific support PDA Society Enquiry Line Service PDA Society Forum Education-related PDA support groups PDA & School Education, Health and Care Plans to support a PDA profile of autism Home education “hub” PDA & school avoidance podcast with James PDA & masking with James Special educational needs charities and organisations IPSEA SOS SEN ACE Education Contact – Education Enquire (Scotland) Senac (Northern Ireland) Talking SENse! CAST: Universal Design for Learning Framework (guides the design of goals, assessment, methods and materials that can be customised and adjusted to individual needs and to help make learning inclusive and transformative for everyone) Liverpool Law School (free SEN legal advice) Schools guides Good Schools Guide Gabbitas [...]

PDA Society Support

The PDA Society enquiry line service provides information, signposting and support about PDA for individuals, families and professionals. In addition, our peer-support website discussion forum is moderated and is an alternative place to ask questions, share experiences and find support. The Society also provides training for different audiences, and webinars on a range of topics. PDA Society Enquiry Line Service PDA Society Forum Training PDA Society webinars