PDAsupportlancs

PDAsupportlancs Providing support
for families and carers with children
and young people
with a PDA profile
of Autism within
Lancashire

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

’Twas the Night Before School‘Twas the night before school, and the house was a blur,Uniforms waiting, new shoes, quite ...
01/09/2026

’Twas the Night Before School

‘Twas the night before school, and the house was a blur,
Uniforms waiting, new shoes, quite the stir.

Some children were groaning, some wide-eyed with glee,
Some counting the hours till their best friends they’d see.

Some packed their new bags for a first ever classroom day,
While others were starting in quite a new way.

Some heading to secondary with timetables tight,
Some excited that college was now in their sight.

Some carefully practising just taking a seat, Where entering the doorway feels bravely complete.

For school reintegration’s no race, let us say;
A hello. One room. That’s enough for today.

And elsewhere that evening, the paperwork lay,
EHCP battles filling the day.
A child would return to a placement that’s worn,
To a system that’s broken,
to parents forlorn.

Some children won’t go;
not stubborn, not bad.
Their trauma speaks louder than words;
They are sad.
Their bodies remember what language won’t tell,
That school wasn’t “safe”,
Their mind wasn’t well.

Some wait for EOTAS,
for tutors, for a plan,
For someone to finally say, “Yes. We understand.”
Some brilliant packages ready to roll: Learning what fits round the heart of the soul.

Some waiting for specialist schools with a space,
For gentler provision, a slower-paced place.

And some still are waiting. Still fighting. Still there.
Refreshing inboxes. Repeating a prayer.

Yet tonight, across the country, there’s hope mixed with fear,
As families prepare for what’s coming this year.

There are cheers and there’s grief, and there’s courage unseen.
Mainstreaming, SEND, EOTAS and everything in between.

So tomorrow, whatever the pathway may be,
A classroom or home or a tree-based marquee.
May each child be met where they genuinely stand,
Not dragged toward milestones that shouldn’t have been planned.

Your pathway is worthy.
Your pace is just right.
There is more than one way to learn, grow, and take flight.

Here’s to tomorrow,however it came.
Happy new school year, whatever your name.

https://www.facebook.com/share/p/19StRh8ET1/
28/08/2026

https://www.facebook.com/share/p/19StRh8ET1/

📌 SAVE THE DATE:

The PDA Space Summit is Back for 2026!

Join us for the 7th Annual PDA Space Summit,

The world’s largest ((FREE)) online event dedicated to
Pathological Demand Avoidance.

📅 When: Thursday, October 1 – Tuesday, October 6, 2026

🛜 Where: Online (Watch from anywhere)

📣Theme: Capacity and Capability

THIS YEAR, we are diving deep into a critical conversation:

Why can someone be capable of doing something, but not always have the capacity to access that ability?

24+ speakers will help us learn to support PDA people in more respectful, responsive, and neuro-affirming ways.

Whether you are a PDAer, parent, carer, educator, or professional, this summit is designed to help you find approaches that work with the person, rather than against them.
Your Free Ticket Includes:

📣 Access to every summit session.

🕧• Flexible Viewing: New webinars drop daily at 10 AM UK time.

⏳48-Hour Window:

Each day’s sessions are available to watch for 48 hours, you don’t need to be online at a specific moment.

📌
No pressure to watch everything, just what works for your capacity.
All you have to do is ask me for the link to sign up.

👇
And SHARE this post with anyone who would benefit from being part of this.

ARE You coming to the 7th summit ?




📌 A little update from our collaborative work with LPCFEarlier this week, Karen attended LCC’s EHCP Quality Assurance Fo...
02/07/2026

📌 A little update from our collaborative work with LPCF

Earlier this week, Karen attended LCC’s EHCP Quality Assurance Forum on behalf of LPCF.

After signing the relevant GDPR/confidentiality agreement, she took part in a live EHCP quality assurance audit exercise, focusing particularly on Sections E and F. She reviewed a live case alongside senior SEND colleagues and contributed to a thoughtful roundtable discussion about EHCP quality, SEND improvement and how plans are currently audited.

No identifying details can be shared, but the wider learning matters.

🔍 Key concerns identified

The plan she was reviewing appeared to have passed the electronic audit process, but closer review raised concerns about the evidence behind the plan.

In particular, the Educational Psychology advice appeared to be a graduated-response report, rather than statutory advice obtained specifically for the EHC needs assessment. It was also older evidence and had been used to inform post-16 provision.

Karen fed back that this really matters. If advice is outdated, vague, non-statutory or not specific enough, then the provision written into Section F may not properly reflect the young person’s current needs.

🧩 Assessment gaps

There were also concerns about missing specialist advice. The young person had autism and a hearing impairment, but there was no Occupational Therapy advice or sensory assessment evident, despite clear indicators around:

• sensory needs
• daily living skills
• independence
• preparation for adulthood
• access to the learning environment

For many autistic young people, including those with PDA profiles and sensory differences, these are not “extra” issues. They are often central to whether education is accessible at all.

⏰ Timeliness and transition

The timeline also raised concern. The young person was due to move into post-16 provision, but the EHCP was not finalised in time for effective transition planning.

This meant that key post-16 safeguards could not operate as they should. This was especially concerning because the young person was also looked after, meaning education, care planning and transition planning needed to be especially joined up.

💬 Parent-carer feedback

Following the forum, Karen wrote to senior SEND managers to thank them for the opportunity to attend and to constructively set out the concerns identified.

The main feedback was that EHCP quality assurance needs to look beyond whether the final document appears well-written.

It also needs to ask:

• Is the advice statutory, current and relevant?
• Has the right specialist advice been gathered?
• Are missing reports, such as OT or sensory advice, being flagged?
• Are long delays triggering a review of the evidence base?
• Are missed statutory timescales and phase-transfer risks being identified?
• Is extra scrutiny applied where a child or young person is looked after?

🌱 Summary

A plan is only as good as the assessment behind it.

If needs are not properly understood, the right provision will not be written in. And when the right provision is not written in, families are too often left carrying the burden of delay, challenge, private reports and tribunal.

Karen has asked for these concerns to be fed into the wider EHCP quality assurance and SEND improvement process.

Better evidence leads to better plans — and better outcomes for children and young people. 💛

A little resource worth knowing about for PDA families 🎮🥚Roblox often gets a bad rap - and yes, online safety and bounda...
05/06/2026

A little resource worth knowing about for PDA families 🎮🥚

Roblox often gets a bad rap - and yes, online safety and boundaries hugely matter.

But for many PDA children and young people, gaming offers connection, autonomy, shared language and low-pressure interaction.

I’ve just come across Mindful Egg on Roblox, and it feels very worth sharing.

It’s a gentle pet-simulation game where small acts of self-care, journaling, stretching and breathing exercises, help your virtual pet thrive.

For PDA children, that matters.

Direct prompts to “calm down” or “use a strategy” can feel impossible in the moment.

But when regulation is offered through play, choice, curiosity and caring for a pet, it may land very differently.

It isn’t about “fixing” a child through a game.

It’s about tiny, low-demand routes into emotional awareness, self-care and co-regulation- in a space many young people already understand.

🥚 Mindful Egg on Roblox:
https://www.roblox.com/games/92340071719899/Mindful-Egg

Sometimes the best resources don’t look like resources.

Sometimes they looks like gaming.

#

Welcome to Mindful Egg, a quiet space designed for you to slow down and reconnect with yourself. In this gentle world, your egg grows alongside your habits. Small acts of care such as journaling, breathing, stretching, and resting help it thrive, while imbalance causes it to fade. There is no rush a...

Inspired by a conversation with my husband this morning:“Are you excited for panels?”“Local Authority panels? Definitely...
23/05/2026

Inspired by a conversation with my husband this morning:

“Are you excited for panels?”

“Local Authority panels? Definitely not.
Our new solar panels? Definitely yes.” ☀️

One creates energy.

The other drains it.

For many SEND families, LA panels are one of the most opaque parts of the system. 🧩

Families often do not know:

Who is on the panel?
What roles do they hold?
What training have they had?
What criteria do they use?
How are decisions actually made?

Yet these decisions can shape a child’s education, support, placement, safety and future.

Too often, they are made by people who have never met the child.

As SEND parents, we pour so much energy into the process. ⚡

Evidence.
Reports.
Emails.
Meetings.
Waiting.
Hoping.
Praying.

But too often, that energy is not converted into accessible education or meaningful support.

It becomes:

Delay.
Disappointment.
Appeal.
Complaint.
Crisis.
Trauma.

Solar panels absorb light and turn it into usable energy. ☀️➡️⚡

LA panels could do the same.

They could take evidence, professional advice, parental knowledge and lived reality, and convert it into timely, appropriate support.

They could create capacity instead of crisis.

They could reduce future costs by meeting need earlier.

But when panels are opaque, subjective or poorly explained, the cost does not disappear.

It is simply shifted downstream. ⬇️

Onto children.
Onto families.
Onto schools.
Onto health services.
Onto tribunals.
Onto already stretched systems.

Good panels should not drain families of the energy they have left.

They should turn input into action.

Because when systems process information properly, they do not just make decisions.

They generate sustainable futures

Good news! 🎉As part of our feedback on the Lancashire and South Cumbria Integrated Care Partnership PDA Position Stateme...
16/05/2026

Good news! 🎉

As part of our feedback on the Lancashire and South Cumbria Integrated Care Partnership PDA Position Statement, we raised concerns, on behalf of our group and Lancashire Parent Carer Forum, about the use of jigsaw piece imagery in the ICP logo 🧩

We were very grateful to receive an email this week confirming:

“We have listened to your views, and we have removed the logo from the website with immediate effect.”

This is a really positive example of feedback being heard 👂 and acted on quickly ⚡️

Our concerns, and the response received, are shared in the attached images 📎

We will update you on progress with the PDA Position Statement in due course.

Many children with a PDA profile don’t thrive in school.  They survive. 💔And because many initially survive by masking, ...
14/05/2026

Many children with a PDA profile don’t thrive in school.
They survive. 💔

And because many initially survive by masking, appeasing, avoiding, negotiating, controlling or shutting down, the system often doesn’t see the cost until they are already in burnout.

A child can be bright.
Funny.
Articulate.
Capable.
Kind.
Full of potential. ✨

And still be burning through every ounce of energy just to get through the day.

For many PDA children, school is not simply “difficult”.

It can feel threatening. 🧠⚡

Demands.
Noise.
Uncertainty.
Transitions.
Social pressure.
Being watched.
Getting things wrong.
Having no real sense of control.
Trying desperately to look “fine”.

What looks like refusal is panic.
What looks like defiance is fear.
What looks like avoidance is self-protection.
What looks like control is a child trying to feel safe. 🛟

And survival mode has a limit.

Then it shows:
Attendance drops.
Sleep changes.
Eating changes.
Meltdowns increase.
Shutdowns deepen.
The child withdraws.
Everyday tasks become impossible.
The body says what the child couldn’t.
Burnout arrives. 🕯️

And too often, only then does support become “needs-based”.

But if we only recognise need after harm is visible, then “needs-based” becomes a polite way of saying “harm-led”.

Parents are then pushed into impossible choices.

Keep pushing school and watch their child deteriorate.
Keep them home and risk judgement, fines or escalation.
Ask for help and be told the child is “fine in school”.
Request assessment for an EHCP and be told attainment is too high.
Consider “elective” home education when it was never truly a free choice.
Try to hold education, therapy, family life and survival together alone.

But what parent would freely choose for their child to live in survival mode?

And what parent can safeguard education alone when the education system itself has become inaccessible? 💭

This is not about “letting children get away with things”.

It is not pandering.

It is understanding that children learn best when they feel safe and seen 🌱

It is helping children understand their bodies, brains and stress responses, so they can grow with self-knowledge rather than shame.

So they become adults who recognise overwhelm early.
Who can advocate for themselves.
Who do not have to break before asking for help.

That is resilience. 💪

Not forcing a child to endure until they rupture.

These children need adults to reduce threat, build trust, offer flexibility, protect dignity, and create realistic routes back to safety. 🤝

Support should not depend on a child breaking visibly in the building.

Reasonable adjustments, low-arousal approaches, emotional safety, predictable systems, reduced shame and genuine belonging are not rewards.

They are prevention. 🧩

A child should not have to ride wave after wave of “wait and see” until the harm of waiting becomes the evidence needed to get help.

They should feel safe enough, supported enough and understood enough to thrive.

Because a child can appear capable and still be breaking.

And professionals need to notice before the burnout. ❤️‍🩹

13/05/2026

In support of PDA awareness day today, PDAsupportlancs, caught up with Suzan Issa , adult AuDHD with PDA profile and founder of the The Wild Ways. Watch the recording below. This is part one where we find out more about Suzan and the wild ways. A number of questions were submitted by our members and a separate recording of the answers is to follow.

It's PDA awareness day! And we have been sharing some useful resources from our much loved advocates. We are also raisin...
13/05/2026

It's PDA awareness day! And we have been sharing some useful resources from our much loved advocates. We are also raising money for our support group, please donate or buy some tickets if you are able

This page is rich with helpful resources. Like this!
12/05/2026

This page is rich with helpful resources. Like this!

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