PDA Support Lancs
PDA Support
Lancs
Providing support
for families with children
and young people
with a PDA profile
of Autism within
Lancashire
Who we are
We are a group of parents and carers of children with a pathological demand avoidance (PDA) autistic profile, who live in Lancashire. We came together to develop a peer-to-peer support group for parent/carers that can offer online support, organise speakers, educational/training opportunities and well-being events for our members.
We have been meeting since 2022 and hold regular in person meet-ups and activities across Lancashire and online within our private Facebook group, led by our members interests and needs.
We are a charitable group with a constitution and an elected committee of trustees, established in August 2023. Trustees are all volunteers and have lived experience of ‘PDA parenting/life’. Our trustees manage a bank account and organise group activities, as well as looking for funding opportunities to support our work. We are an affiliate local group to the PDA Society UK.
We hold regular social events in Preston, Lancaster and Blackburn including face to face support meetings and online meet up sessions. These are sometimes attended by guest speakers. We would like there to be more regional events across the County and aim to support that development.
Our support group is managed through our private Facebook group pdasupportlancs. Here we offer a safe and supportive environment through peer-to-peer engagement and invited speakers.
We advocate the strategies and information recommended by the PDA Society, including low demand, trauma-informed parenting. Our support group is constantly evolving and growing; if you are a parent/carer please use the Contact Form to request to join our Private FB group or get further involved.
Many of our children have suffered autistic burnout, had a prolonged period out of education and/or accessing the support they need. Many of us have experience with applying for an education health care plan (EHCP), education otherwise than at school (EOTAS) and navigating the local authority including their complaints process and tribunal for appealing the content of an EHCP
Raising children with a PDA profile of autism can be incredibly challenging and can be both physically and mentally exhausting. It can feel very lonely and overwhelming at times. Being around others that ‘get it’ is often a breath of fresh air and can make a huge difference when you are part of a supportive circle of likeminded people.
Our facebook group is not for professionals unless they are parents of PDA children/young people. We can however offer support and advice if you wish to contact us on our contact form.
What is PDA?
Is a neurotype that often does not respond to traditional parenting. PDA is an anxiety driven need of being in control.
“Persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviour, activities or interests” present since early childhood to the extent that these “limit and impair everyday functioning”
PDA is different from autistic demand avoidance and oppositional defiance disorder (ODD)
Many children and young people struggle with the school environment. Sometimes schools are unable to make sufficient accommodations. We can offer lots of help when navigating difficulties at school and throughout applying for an EHCP
You will find the latest information about us on this page. Our support groups is constantly evolving and growing.
We hope you find our little website useful. If you want to contact us, please fill the contact form.
As the saying goes, "have a day", because enjoying life with a PDAer takes time, patience and a total different approach to conventional parenting and teaching.
We came together as a Support group because we felt that ‘PDA’ wasn’t very well understood by the agencies and services we had to deal with as parent/carers.
Within the group we share our understanding of the PDA profile and also how we experience that within our families. We seek out training and education support of relevance for our members, to share the knowledge that already exists more widely.
Children and young people with a PDA profile very often struggle with the school environment. PDA Society research has indicated this is as high as 70% of school-aged children where PDA is known or suspected.
Sometimes schools are able to make sufficient accommodations and the development of an effective EHCP can help.
Challenging behaviour can be a result of the accumulative effect of the demands being placed upon our child. Demands can be direct or hidden and tolerance can vary day to day depending on how well regulated you are.
In addition to knowledge sharing we can steer you towards credible sites and advocates that can help support getting your approach right.
Having the right approach can make such a difference your child and family dynamics.
Our support group advocates an approach know as Low Demand Parenting. It is aimed at the reduction of stress and anxiety and focuses upon trust, flexibility, collaboration, and a balanced approach to demands, in order to best support a PDA profile child.
We endorse the ‘PANDA’ mnemonic, as produced by the PDA Society (please see their website for the full details) -
PANDA
Pick Battles
Anxiety Management
Negotiate & Collaborate
Disguise & Manage Demands
Adaptation
Many parents in the group have years of experience raising their PDA profile child/children and often this is about being very flexible, thinking outside the box and throwing out the book of traditional ‘conventional’ parenting.
Our children will do well when they can and our aim is to support parents to help with that context.
‘Pathological demand avoidance’ isn’t a very helpful phrase, in all honesty (and some of us don’t much like it). We use it because it has a level of recognition, having been formally identified in a clinical setting in the 1980’s by Dr Elizabeth Newson.
More recently many people just say ‘PDA’ as a shorthand and have also ‘re-interpreted’ PDA to mean Pervasive Drive for Autonomy or Persistent Demand Avoidance, due to the concern about the word ‘pathological’.
Currently we have the very active and helpful ‘PDA Society’ and so ‘PDA autistic profile’ in relation to diagnostic assessment, is now much more widely recognised and acknowledged – so for now, we are sticking with ‘PDA’ and hope to help educate and inform about what that actually means in terms of our ‘lived experience’ as parent/carers and adult PDAers.
Changing futures
Every young person deserves the chance to realise their full potential.
Our support group shares and discusses our individual situations and aims to provide help in gaining a positive outcome.
Regular topics include:
- What is PDA?
- Parenting approaches to support PDA profile
- Communication with School
- Communication with Local Authorities
- Communication with Educational Professionals
- Communication with Health Professionals
- Developing an Education and Health Care Plan
- Appealing decisions
- Raising complaints
- Tribunal processes
According to our constitution the purposes of the charity are:-
-
To provide information, education, and peer support about the PDA autistic profile, to parents & carers in Lancashire.
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To organise information & support meetings (virtual/online and in person) on a regular basis, in order that parents/carers can organise peer support & education about PDA according to their needs.
- To inform & educate about PDA autistic profile to local professionals from education, health and social care sectors, as well as local authority departments with responsibility for SEND policy, services and direct provision (including EHCP/EOTAS provisions).
- The charity will keep a membership list and be a support group linked to the PDA Society UK (a Registered Charity) and listed/advertised on their website.
Our mission is to provide best outcomes for our children & young people.